affidavit - the globe and mail hereto and marked as exhibit a to this my affidavit is a true copy...

This is the 2nd affidavit of Gloria Taylor in this case

and it was made on.;}5 Aug 201 I

No. S I 012688 Vancouver Registry

IN THE SUPREME COURT OF BRITISH COLUMBIA

BETWEEN:

AND:

AND:

LEE CARTER, HOLLIS JOHNSON, DR. WILLIAM SHOICHET, THE BRITISH COLUMBIA CIVIL LIBERTIES ASSOCIATION and GLORIA TAYLOR

PLAINTIFFS

ATTORNEY GENERAL OF CANADA

DEFENDANT

ATTORNEY GENERAL OF BRITISH COLUMBIA

INTERVENOR

AFFIDAVIT

I, GLORIA TAYLOR, of 45 - 3381 Village Green Way, in the District of West Kelowna

(Westbank), Province of British Columbia, SWEAR (OR AFFIRM) THAT:

1. I am a plaintiff herein and as such have personal knowledge of the facts and matters

hereinafter deposed to, save and except where same are stated to be made on information and

belief, and where so stated, I verily believe them to be true.

2. I am a part-time property manager at the mobile home park where [ live in Westbank,

British Columbia. I am also a residential care worker, but have been on disability leave from my

position for some time now. Prior to taking employment as a residential care worker, [ was a

long-time employee with Canada Post.

- 2 -

3. I am the divorced mother of two sons, aged 36 and 38. One of my sons lives in

Westbank, and the other lives about an hour away by car. I have an 11 year old granddaughter,

with whom I have an extremely close relationship. I have an 83 year old mother living in

Castlegar, British Columbia. I am also the eldest of four close siblings, having three younger

sisters.

My Story

4. I am of Russian descent. Two of my grandparents came to Canada as immigrants; the

other two were born here to Russian parents. I grew up in CastIegar, British Columbia, which

was then a small town with a sizable Russian community. Russian people are, I think, very

accepting of death as part of life. At least, that was my own experience. When I was young, my

family always talked openly and candidly about death.

5. I remember, as a child, going to funerals that were community affairs the same way that

weddings are community affairs in small towns. When I was growing up, traditional Russian

funerals were long and involved affairs. When my grandfather died his funeral, in the larger

sense, lasted three days. There was a period of time for viewing the body, there were communal

meals, there was a service and, after the burial, a reception which, while not a happy affair, was a

gathering that was celebratory of my grandfather's life and our family. My recollection is that

death was always approached this way in my family - as an important part of life that should be

recognized and faced full square, not something to be whispered about or hidden from children

or blurred by euphemisms or fanciful terms. Rather, we considered it the defining final act of a

life, hopefully one well-lived. That is the kind of death I want - both for myself and for those I

am leaving behind.

6. I have never been a person of small voice or weak opinion. I have no problems standing

up for myself or, for that matter, for others. When the local health authorities wanted to transfer

my father, who was obviously then in his last days of life, to a care facility further away from his

family and friends, I stood up for him and refused to let that happen. When my son received

what I considered to be shoddy care following surgery on an injured knee, I challenged the

system about that as well, strongly advocating for an increase in the number of beds at Kelowna

General Hospital. Attached hereto and marked as Exhibit A to this my Affidavit is a true copy

- 3 -

of an article about my advocacy in relation to local health care titled, "Westbank woman forms

health lobby group", published in the Westside Weekly on March 8, 2006. When I learned that I

did not, as a non-native residing on Westbank First Nation ("WFN") reserve land, have any

voting rights, I ran for a position on the WFN Advisory Council in order to have a voice on

issues. Attached hereto and marked as Exhibit B to this my Affidavit is a true copy of an article

about my candidacy in that election titled, "Non-native elections underway on WFN reserves,"

published in the Kelowna Capital News on August 17, 2009. I am, and I think everyone who

knows me well would quickly and whole-heartedly agree, a fighter. I am most definitely not a

person who can be persuaded to act against conscience or will, let alone bullied by anyone -

friends, family, authorities or society in general.

7. I married a wonderful man and we had two sons together. But we grew apart with time,

and eventually ceased to want the same things from life. We separated and then divorced on a

very amicable basis. I felt no need to be married for the sake of being married or to avoid being

alone. There was nothing dreadful or oppressive about our marriage. He continues to be one of

my closest friends. Following our separation, I was able to take a transfer in my work - I worked

at Canada Post then - that would take me from Castlegar to Kelowna. This was one of the things

I wanted to do with my life - to live in a bigger city and meet new people and experience new

things - and so I took the transfer and a chance on Kelowna. I was scared to make such a big

change, but I also knew I could do it. It turned out to be a good decision for me. It enabled me

to live the sort of life I wanted.

8. When I was in Castlegar, I knew people who rode motorcycles as a hobby. I loved the

riding experience. I would go on outings and trips, always as a passenger on someone else's

bike. When I was about 37 years old, I resolved to get a motorcycle licence and my own bike. I

wanted to experience being in control of the bike, but I also wanted not to be a passenger.

Although I loved riding, I never liked the idea of putting my life and well-being in the hands of

someone else and being dependent on their judgment. I got a Yamaha first and then, a year or so

later, my own Harley. After that, when we went on outings and trips, I was in control and

responsible for myself.

- 4 -

9. One year, while motorcycling across South Dakota, my bike was struck by a vehicle. I

was not very seriously injured, but my bike was inoperable. The South Dakota group, Aid for

Injured Motorcyclists, and the Vancouver chapter of the Association for Injured Motorcyclists

helped me get home and arranged for my bike to be returned to Kelowna. About a year later, the

daughter of a friend was killed in Prince George when the bike she was riding on as a passenger

was struck by a car making an illegal tum. Following that, I decided to set up an Interior, BC

chapter of the Association in order to repay the good the others had done for me and to ensure

there was a group there to provide help and support to other downed motorcyclists. The Interior

BC chapter is still in operation and I continue to sit as a member of its board.

10. I have always been a very independent person. I have always said what I believed in and

tried to act accordingly. I have taken responsibility for my own well-being. It has always been

fundamentally important to me to do so.

Nfy Illness

11. I have amyotrophic lateral sclerosis ("ALS"). ALS, which is also known as Lou Gehrig's

disease, is a fatal neurodegenerative disease.

12. Following my diagnosis, I researched ALS. I learned that people with ALS become

progressively paralyzed due to the degeneration of motor neurons in the brain and spinal cord.

Eighty percent of people with ALS die within two to five years of diagnosis. ALS frequently

begins with weakness and/or cramping in the hands, feet or limbs. As the disease advances,

muscles progressively weaken until paralysis sets in. Progressed ALS generally impacts the

abilities to chew, swallow, speak and breathe. Respiratory failure is the most common cause of

death for people with ALS. ALS has no known cure or effective treatment.

13. I began to experience symptoms in 2003, in the form of cramping in my hands, feet and

limbs, but my condition was not diagnosed as ALS at that time. In or about 2006, I began to

experience severe muscle cramping and spasms in my hands. My hands would cramp into fists

and my fingers would need to be physically peeled open again. I also started to experience

muscular twitching (called fasciculation) involving small, localized involuntary muscle

contractions in my hands and throughout my body. Later that year, I began to have difficulty

- 5 -

with tasks requiring fine motor skills and hand strength, such as, for example, using keys or

holding a pen.

14. In the summer of2009, my right pinky finger "dropped", leaving me unable to straighten

that finger. In September 2009, my family doctor referred me to a neurologist for a neurological

examination. That neurologist referred me on to a consulting neurologist at the Kelowna

General Hospital. On December 9, 2009, after a series of tests, the consulting neurologist

informed me that I had ALS.

15. I was then referred to another neurologist, Dr. Hannah Briemberg, at the ALS Centre in

Vancouver's GF Strong Rehabilitation Hospital. The ALS Centre's medical team carried out a

comprehensive assessment, review and consultation and then confirmed my earlier ALS

diagnosis.

16. By the time I attended the ALS Centre, my muscles had begun to atrophy. I had

difficulty using my right hand due to fasciculation and muscle degeneration. I had extreme

difficulty walking and suffered generalized body weakness. I often felt cold, particularly in my

hands and arms, and experienced difficulty breathing. Dr. Briemberg advised me that these

symptoms indicated that the disease's course was significantly progressed. On or about

January 26, 2010, Dr. Briemberg told me that I would likely be paralyzed in six months and

likely die within the year.

17. Following my diagnosis, I discovered that there was no existing ALS support group in

Kelowna. As I was of the view that one was needed, I founded a Kelowna group for people

living with ALS and their caregivers, the "Living with ALS Group." I continue to belong to that

group and to attend its monthly meetings, which generally consist of a guest lecturer and a social

hour where members can discuss their experiences, hopes and fears. Attending the group

meetings has given much comfort and support; it has also given me a very good idea of what my

future looks like.

18. I have, in fact, fared better than predicted by Dr. Briemberg. My condition plateaued for

a period of time and my doctors have said that they are impressed by my resilience. That said, in

most respects, my condition has continued to steadily deteriorate since diagnosis. All of the

- 6 -

fingers on my right hand, with the exception of my index finger, have now "dropped" and cannot

be straightened. On my left hand, my pinky finger and ring finger have also "dropped." I

experience shaking in my hands, which makes fine motor task extremely difficult. I have been

fitted for wrist supports as my wrists are now hanging down due to muscle atrophy and

weakness, making it difficult to lift or hold items without dropping them. I also suffer constant

involuntary muscle cramps throughout my body. I am no longer able to lift myself up from most

chairs, and use a power lift chair so that I can stand up from a seated position. The muscles in

my feet and toes have continued to atrophy. I have difficulty lifting the frd'l'lt of my foot,

resulting in a condition known as "footdrop." Footdrop makes it very difficult to walk and has

caused or contributed to a number of serious falls. I use a walker, however, I need to use a

wheelchair to go anything more than a short distance. To use the wheelchair, I need someone

push me due to the loss of strength in my arms and hands and my inability to use my hands

effectively.

19. Despite my illness, I continue to live by myself and as independently as possible. While I

have been on disability leave from my employment as a residential care worker since March

2010, I am proud that I am still able to fulfil my role as part-time property manager for the

mobile home park I live in. [spend part of most weekends with my granddaughter. I am an avid

cook and food enthusiast and I have been teaching my granddaughter to cook and sew. My

granddaughter has asked me to compile a cookbook of all of her favourite dishes and family

recipes, and I have been working on that project. My granddaughter and I sometimes go together

to local restaurants for lunch or dinner. Sometimes we picnic, go to movies, visit sightseeing

destinations, or go out for ice cream together.

20. I continue to have a busy life. I typically spend many hours a day communicating by

phone or email with family, long-time friends, friends with ALS, doctors and others. I meet with

my physiotherapist once or twice a month, and usually attend several medical appointments each

month. Several times a week I go into town with a friend who assists me with getting groceries

and running errands. In addition to my granddaughter and other family members, I regularly

visit in person with friends and former work colleagues.

- 7 -

21. I am committed to a number of causes and activities and presently remain actively

involved in these. In addition to keeping up my membership in the community groups I

belonged to prior to my diagnosis, I now participate in local campaigns to raise money for ALS

medical research and services to support those living with ALS and their families. In association

with that the Association For Injured Motorcyclists, Interior BC Chapter and some local business

sponsors, I organized a motorcycle ride to benefit the ALS Society of BC. I was a key

participant in an ALS fundraising campaign undertaken by a Kelowna business as part of its 25th

anniversary celebration this year.

22. However, my illness is steadily impacting on my ability to do these things. I am losing

the ability to perform basic household and personal tasks.

23. I can no longer peel vegetables or open jars. It is sometimes too hard for me to pull up

the sheets in bed at night. I find it challenging to dress myself, and have taken to wearing

dresses every day to make dressing simpler. I have difficulty brushing my teeth, combing my

hair and carrying out similar personal tasks. I now have home support workers who come to my

home to assist me with daily tasks every morning and evening, seven days a week. I now have

to have different strangers assist me with showering every day, something I experience as an

assault not only on privacy, but on my dignity and self-esteem.

24. I can now only type on my computer keyboard with my left hand and have difficulty

using a mouse. I am unable to perform work around the house and am no longer able to keep it

up to the standard I consider desirable. I recently began using the services of a housekeeper to

provide assistance. I am most concerned that my deterioration will soon impact my ability to

spend quality time with my granddaughter and sons.

25. I hope to remain in my own home as long as possible. I have reconfigured and

re-outfitted my home to this end. My washroom has been made handicapped-accessible and I

have obtained a hospital bed so I can sleep at home with my chest elevated. I have to have a

special, continuous air flow mattress to relieve pressure points and reduce the risk of bed sores.

The ALS Society of BC has provided me with computer hardware and software to enable me to

operate my computer without hands.

- 8 -

26. I am fearful about the progression of my disease. The nature of ALS is such that I cannot

know which functions will be impacted next. I fear losing the ability to get out of bed and my

ability to speak. As ALS generally affects the ability to control the muscles used to breathe, I

use a respiratory ventilator when sleeping and already use it sometimes in the evening just to

watch television. I fear that I will eventually suffocate and die struggling for air, like a fish out

of water.

27. I have pain, for which I take some medication. Minor bumps and injuries can be very

painful due to my loss of the muscle density that usually cushions bones from everyday impacts.

Even resting my arms on a recliner chair can cause pain due to my muscle deterioration. I sleep

on my side in order to breathe better, but the resulting body stress causes my hips to ache. I can

no longer roll over to ease the resulting pain and now must, several times a night, get out of bed

and walk around to get in from the other side in order to get some relief.

28. Using my muscles in stretching or reaching motions sometimes causes excruciating pain

and a tearing feeling in the muscles. At present, this pain subsides fairly quickly; however, I

believe that I would find lasting pain at that same level unbearable. I am aware that increased

pain might be addressed with additional narcotics and analgesics, but I have no desire to live my

life in a drug-induced haze.

29. I am terrified of losing control of my bodily functions. I have experienced incontinence

while at home on several occasions. I have now experienced incontinence while out shopping,

an experience I can only describe as horrendous. Fear of this happening again has caused me to

spend more and more time at home. As my illness progresses, these episodes will become more

frequent. I will eventually lose the ability to clean myself when they do occur. I am fastidious

by nature, and the prospect of being fully incontinent mortifies me.

30. [ want to be very clear: I do not believe that my family considers me a burden. Nor am [

concerned that as I get more and more ill they will begin to do so. When I told my family and

friends that I wanted a physician-assisted death, my concern was that they might be disappointed

in me for not trying to hold on and stay with them until the last possible moment. But I do want

to express the fact that I, myself, will be greatly distressed by living in a state where I have no

function or functionality that requires others to attend to all of my needs and thereby effectively

- 9 -

oblige my family to bear witness to the final steps of the process of my dying with the indignity a

slow death from ALS will entail. I do not, in particular, want to be the cause of my 11 year old

granddaughter's sitting vigil as I die an ugly death, and I believe that is what she will do, because

she loves me. I do not want to be a burden, not because I fear my family does or would resent

me - I do not think that - rather, I do not want to be a burden because I know they love me.

My Death

31. One of my greatest fears is to be reduced to a condition where I must rely on others for

all of my needs. I do not want to live in a bedridden state, stripped of dignity and independence.

32. I have informed my family and close friends of my desire to have a physician-assisted

death. My sons, granddaughter, mother, sisters and closest friends all strongly support my right

to make the decision to die and have told me that they do not want to see me suffer.

33. I am aware that assisted suicide is legal in Switzerland. I am not financially able to travel

to Switzerland and obtain assisted suicide services there. Further, it is important to me to have

my family around me when I die. I do not want to die in a strange country, surrounded by

strangers. I want to be able to obtain physician-assisted dying services in Canada if and when I

resolve to end my suffering and die with dignity.

34. I do not want my life to end violently. I do not want my mode of death to be traumatic

for my family members. I want the legal right to die peacefully, at the time of my own choosing,

in the embrace of my family and friends.

35. I know that I am dying, but I am far from depressed. I have some down time - that is part

and parcel of the experience of knowing that you are terminal. But there is still a lot of good in

my life; there are still things, like special times with my granddaughter and family, that bring me

extreme joy. I will not waste any of my remaining time being depressed. [intend to get every

bit of happiness I can wring from what is left of my life so long as it remains a life of quality; but

I do not want to live a life without quality. There will come a point when I will know that

enough is enough. [cannot say precisely when that time will be. It is not a question of "when [

can't walk" or "when [ can't talk." There is no pre-set trigger moment. I just know that,

globally, there will be some point in time when [ will be able to say - "this is it, this is the point

- 10-

where life is just not worthwhile." When that time comes, I want to be able to call my family

together, tell them of my decision, say a dignified good-bye and obtain final closure - for me and

for them.

36. My present quality of life is impaired by the fact that I am unable to say for certain that I

will have the right to ask for physician-assisted dying when that "enough is enough" moment

arrives. I live in apprehension that my death will be slow, difficult, unpleasant, painful,

undignified and inconsistent with the values and principles I have tried to live by. I am proud to

be dedicating the final days of my life to trying to change the law in this respect. It is my hope

that my actions in being a plaintiff in this case will bring others the peace of mind and sense of

control that the law is presently denying me.

37. While I appreciate that others may feel differently about it, personally, I find the idea of

terminal sedation repugnant. I do not understand how anyone could assert that it is a viable

alternative to physician-assisted dying. I cannot believe that any rational person would want that

end for themselves or anyone they care about. I can understand that, if you allow a person's

suffering to become completely overwhelming, there will be a point where terminal sedation is

better than soldiering on, but I cannot see how anyone, approaching death rationally and while

still able to evaluate their options, could choose to die that way. It is not rational to choose to

waste away slowly while unconscious, but still alive. There is no closure in that, no dignity.

38. The idea that I might, even though in an induced coma, be able to hear people and things

going on around me as I lay wasting is a terrifying thought to me. And if it is correct to say that [

would not have any sensation at all of being alive while in that coma, then I do not see why [

cannot instead have the dignity and closure of actually being dead.

39. I do not want my last conscious thought to be worrying about what will happen - to my

body and my family - once I am in the coma. I believe terminal sedation would horrify and

traumatize my 11 year old granddaughter. We are extremely close and I believe that if I was not

dead but rather sedated, she would insist on visiting and staying with me and, if denied the right

to do so, would feel guilty about not staying and resentful of those who prevented her from doing

so. Either way, her mind would be filled with visions of my body wasting away while [ was

"alive." I cannot stand the idea of putting her through that. [believe that would be cruel to my

- 11 -

granddaughter. (could not feel at peace knowing that that was what I was leaving her, and my

other family members, to go through.

40. I simply cannot understand why the law holds that the able-bodied who are terminally ill

are allowed to shoot themselves when they have had enough because they are able to hold a gun

steady, but because my illness affects my ability to move and control my body, I cannot be

allowed compassionate help to allow me to commit an equivalent act using lethal medication.

The law obliges me to act now and kill myself - while I am able but while my life is still

enjoyable - or to forego altogether the right and ability to legally exercise control over the

manner and timing of my death. That is a cruel choice to impose on someone.

41. I also cannot understand why it is permissible for my friend, who is on kidney dialysis, to

say "enough is enough" and make the decision to die. I cannot understand why the law respects

his wish and decision to die, but does not do the same for me. We are equally competent. I do

not understand how or why it is the role of government to say that his choice results In a

"natural" death, but my choice would not.

42. I fail to see what the government feels is so "natural" - and therefore somehow "good" -

about my slowly suffocating like a fish out of water. This is not the legacy I wish to leave

behind. Memories are not made of this.

43. What I want is to be able to die in a manner that is consistent with the way that I lived my

life. I want to be able to exercise control and die with dignity and with my sense of self and

personal integrity intact. I want to be able to experience my death as part of my life and part of

my expression of that life. I do not want the manner of my death to undermine the values that I

lived my life in accordance with. I do not need the government to dictate for me how I should

spend the last moments of my life or how I should die.

44. I am dying. I do not want to, but I am going to die; that is a fact. I can accept death

because I recognize it as a part of life. What I fear is a death that negates, as opposed to

concludes, my life. I do not want to die slowly, piece by piece. I do not want to waste away

unconscious in a hospital bed. I do not want to die wracked with pain. It is very important to me

that my family, and my granddaughter in particular, have final memories that capture me as I

really am - not as someone I cannot identify with and have no desire to become.

45. I have pre-arranged my cremation. I have chosen songs I would like played at my service

and am designing a memorial program. I am working on a eulogy, which my cousin has agreed

to read aloud for me at the service. We create ourselves through our lives. These acts are part of

my creation of the person I want to be and the person I want others to see and remember me as. I

want my death to be part of that creation as well. As Sue Rodriguez asked before me - whose

life is it anyway?

SWO~N (OR AFFIRMED) BEFORE ME at WESTBAA.JK ,Britis umbia, on2,5Aug 2011.

A Commissioner/Notary for taking Affidavits for British Columbia.

NADINE CASEY FRENCH Barrister & Solicitor 104,3500 Carrington Road Westbank, BC V4T 3CI

) ) ) ) ) ) )

~Jf¥YV GLORIA TAYLOR

Copy of article titled "Westbank woman forms health lobby group", published in Westside Weekly on March 8, 2006

This is Exhibit A referred to in the Affidavit of Gloria Taylor, sworn before me on August c?25 ,20 1.

A Commjssjone jng Affidavits for British Columbia

1

" .. , ~ ., . .1. .. . ~.,,~;. ·.···~t -~"~ .. :L.;"-~:. :: ..... ~.' ''';'''\> .. :::,-'''"'''. :-.~::...~.:'.

vveST"~:~~~~.~eb"srl~'Y. MA.;ti"'·8,· ~~" ~:, . " .. . ,A .'" ~ , .. ,... ····':,,·C .·1 I:~"" . ". • .. ,'" ./i .. ~: .

GAI'IY Nfl • ...... ,v ~ :.. . -.~ ·,;':"1'

Gloria T.ytor= .. heading up u,. 8roUP Heatth Actvoc.~ a u. ao people can relay their experlencea to .uthorttIe8lrt:,VIcto~>;,·. : ..• ::. '.::.~_~; '.:' : . :, ......, .

Westbank.wom.an fonns healthiqb\ly gr9u P . . • Her own familY's horn.r:~tOri;s·~·· mati~~;,*~~~~ii2~:r~~spi~;l:;Jj~~went'from a

2

I

• '. _'.., '.:.. .~:~,.".:; fl,in~~~riaro:S2-yeax;~ld to alL~!;th'~lmer's patient with UJe heaJth.;care· system have.:" .... livi~g.,out his days.. in, apex~ina~(r care facility: :'.; . t d GI .'or. yI t tak ... ;.,:,~ Re<:cnt)y .. :f.aylor,s ·,son .. , went. to'. the eqlergency.~ promp e ona.a or 0 e . department with back problems-at 4 p.m. but he : action . ended up in a stretcher in a hallway next to a

bathroom and then in the showers.

. ;::BY:· J~p:-SQOIRE~" ~.~ •• , Special to the Westsict~ .... yveekly

Westbank grandmother Glori~ Taylor says the health-care system has let her and her family down tlfree tiules so she's formed a new advoca-cy group. -:~.~:':'.,r".,.'.. ·l,Y·." , , ';

She sent oti'ia: ·mass e-maii:"to 'news' outlets across the proyince last weeJc.~nounCirig the es

. tablishment of Health Advocates R Us. "I'm going to collect stories and hope to get

[hem to. Health Minister George Abbott and Premier Gordon Campbell," she said.

Taylor says she became aware of the shortcomings in the health-care system three years ago when she went to the emergency department of Kelowna General Hospital suffering from a bowel blockage.

She says she didn"t even get a bucket to throw up in; when she. finally ga.t a bed, it was in a hallway with other patients, then a casting room, then the maternity ward; and she had her dressing changed' by a nurse who had worked in records for years, but was filling in because of Il staffing shortage.

On Dec. 8, 2005, her father went [0 the Trail hospital's emergency department but spent two days there, ending up with severe bruising to his wrists and back and a broken rib,

The family claims that as a result of the trau-

. He, fi,nallr. c.hec~e~,lti~~elf out at 10: 30 p.m . bec'ause "he couldn't take 1t any"more," said Ta* .... lor. "H.e never did get a room with a real bed .... ;.,

Around the same time. Taylor was in the erner:' gency .department with a friend and over hoard a nurse say there. were, I)9~hospital beds available, the halls werefullllnd.:two patients were waiting in ambulances·outside.· :.;.'. .

"My stories are long and life is so short, and: I fear that Interior Health is making it much shorter for a lot of people," wrote Taylor in her e-maiL

"It sounds morbid, but I hope they legalize euthanasia before I get too old. I don't want to' live like that. It's scary," she told The Daily Courier.

She claims IHA has gagged its employees so they can't talk about problems; yet "it s amazing how many nurses, doctors, everyone is so anxious to tell their stories."

The Taylor family tried unsuccessfully to get documentation on their fath~r's injuries, she said. The family yva~ told he pushed against a security guard, 'lost his balance and fell down, and also had to be (estrained

"I don't'believe it. I work with people with dementia. He's just a little guy and he was anxious to get out of there after two days in emergency. Nobody phoned my mom or his doctor. If it wasn't for an'X-ray technician, we would have never have. known about the injuries," said Taylor .. '

"Nobody:s.lfstening.to us. The. iliA-just put us off. It's a c.Q:,er.~up.", .

_f._ • <:,.,'

3 www.kelownacapnews.com '-l.ly. :\ut;U>l17 lOU!! capital news C5

"'estside 'f' ADVISORY COUNCIL

Non-native elections undelWay on WFN reselVes By JASON LVCIW

WESTSIDe RCPORTER

Without the power of a VOle 00 the Westbaok First Nation council. membcn of the WFN's AAhtisory Council must be masteD of persuasion.

. Ina. '5 the view of n0n-

native WfN R."SCI'Ve resident Ludwig T~ichgrober, who will be acclaimedAug. 30 for his ~ Ihree-year term on the advisory council

1be council exists to take the concerns of 8,()X) non .. native residents living on WFN's two west side reserves before the WFN council.

Only the WFN's 550 I"Ileffibers am eligible to vote for the chid and cooncil.

The council was created th.ree years ago as a mandatory requirement of sdf-govcmrnent fOlIhc WFN.

The system is similar to a minority ~ said Teichgrabcc Advisory c0uncil membcn must remain COfk.'iJjatory toward the WFN council if they are to get any .. thing done. And the WFN b~ council must hl:ar out the advisory COWlI.;I. to avoid wUUl amongst the majority uf lIS resa"\'C residents..

While: lnandurcd by the ~jf-gtnemment agrn.-mcnt ~idl Onawa. the syl)fem relics un Coru.t;UIL (..~ ~ .:OfJlfllUO .... 'I!(}n Iu resnain inta.:l. suidTck.h~

After tbh. years working wn'f that'/srem. Tcit:hgrabcr said he kcls he c;m be an even \trongcr ilIl'.'l~ate for noo-nati .. e coo\riu..:nts in hh ~'Cond tenn.

"It's ht.-en a hig 11l ..... '\!

lIlcnl of ctfort :uk; lillie and It's worthwlule C' lllrinuing this," he ~aiu.

"~uw tlwl I' HI [rain,·,~. r

might as well do aootl"K:r three years." he joW

He represents the UW:ridge District. which includes the ~ subdivision and aU properties on resuve No. 10 from Campbell Road to Horiz.oD Drive and Bear UtekRood.

Teic:hgr:Jbcr said the biggest ch:illenge 0Ya' the next three yean will be ro insW'C that the issues ooo-native residents aren'l lost in the midst of the gangbustc:r development cwmtdy tWng place on the two west side WFN reserves.

An adwnce poD for the Aug. 30 3dviDycouncil elections was held Wednesday

On Aug. 30. roting will takes place between 8 a.m. and 8 pm. at the WFN Health and WeUoess CenQe at 1900 QuaiJ L.anc.

In the eJc:ctioo. there will be races in only two distric;ts this time around.

In the Pr.llrie disuK.1. induJing Sun ViIJage. Westlake G~ Gr.mdview Temt.:e, Sonoma Pines. Sage Creek :U1f..I the WFN cOfllI11en.:ial distrk.1. l:urrenl COWlL.iJ dlairman John Mwmy. a retiretJ mumcip'ol.I admin~ttaror, clerk ant.l

treaswer, will be dlalkngcd by lawyer Nadine Ca5c!)' French.

Fmlch said she is not up to speed on aU !be ;SSUC$ yet. but has been doing ht!t reseudl and hopes to hear from cooscitucnts about !heir issues.

"My ~. if dccted, would be to take every opportunity 1.0 disaJsa and asc:ertain the issues and c:ooccms of my fellow consdhlC'DlS and those of the WFN. and to promocc a positive and constructive dialogue between.tbe parties."

F~ wods on WFN land and said she has a keen interest in <ill matten affecting residents who are no( WFN members."

"r have a suong )ellSC of communiry and belia..''\.'e an contributing to (my) communiry," he said

M~hile. Murray said he wiu run on his record of !he past three y~

"A big issue thai we accomplished. which took us about a year and a half. was the negoti.uions wirh the Oka .. nag;m Rc:gional Libr.uy District (0 get member.>hip for residents who li\!! on the reserves without paying a tee.

.. www.kelownacapnews.com

'f ADVlSORY COUNCIL

Non-native elections underway on WFN reserves , ....... --'--- '.' _ .. -~-"-.---~ -----_._------- ·---<--·~ ... r~--- ~-"""-'---'-' .--'~

That's now included in the (WFN's) budget."

The advisory council must also continue to insure fair compensation is given to . residents should any redevelopment occur in manufactured home parks. said Murray.

"We would like to see (compensatioo rules) up to at least provincial standards for removal of residents due to redevelopment."

In the Okanagan District. retired union representalive Tt'lry Tun."aJl is the incumhcnt He is being challenged by Gloria Taylor. a local health care odw)(:ate and manufoc-

I ~ ..

tLtred home park manager. when she first learned she had The Okanagan; District no vote became she was not a

covers Bayview and manu- membet of the WFN but was factured 00me paries and resi- .. living on reserVe land. dences along. Old Okanagan "1 could not vote for anyHighway and Shannon LakD thing to do with the Westbank: Road. rJt'St Nation. as I w.w not a

Taylor said it's important that aU people have a say about what happens on the land they live on, even if they don't own the land

"We should have a voice in what affects our lives on a daily basis and by being allowed a voice. we can make this a land we can all be proud to live on:'

Taylor said she remembers how frustmrcd ~he w~

WFN band member." Taylor said that experi

ence was one reason she decided to nm in the upcoming election.

..;.It The other was to be an advocate fur change on WFN re-serves.

"I hear the people when they talk to me about things like the lack of appupri:ate. trnnsportation when they get off work at midnight. the poor lighting on roads with no shoulders that children have towalkon."

More affordable h0using and better access to health care are also needs that have to addressed on the west side of the 13lce, said Taylor.

As for Thrcan. if re~lected, he said he wiU also l0bby the WFN council for improved <;treet lighting, sidewalks and other 5ef\;ces because the feSl,'fVe5 arc rapidly evolving from a rural to an urban community.

SEE WFN ON ("6

.. ~

, j , . ,

r t

5 WWW.Ktj/ownacapnows.com

:-OWlJay.AUI!:I.ISI17. cU41l! capital news <':5

\\'estside Y ADVISORY COUNCil

Non-native elections underway on WFN reserves Y WFN RESERVES'

Races. in two of the five advisory council districts WFN J'R.OM CS'

1\m;an> said· he agreed. . widt MUrray that the WFN must be lobbied to insUre fait; compensation" for manufactured home owners displaced by redevelopment. The band;,. existing law gives minimal compensatiorr. he said.,)

"It gives one-year nodcc and$2.00>r said1lJrcan.;

And he feels it sbouId be substancially mote than d1aL ,

·'Cot11pt'nS8Iion ()f $2.000 . for people that sometimes have- more than' $100.000 wordt of asseu is catain1y not reasonable at alL~

Ongoing service agree!'menIS between the WFN. me Centml Obnagan Region.. al District and tho Distrid of Westside will need 10 be (:00...

tinuaIly monitored;. be added "Seeing the library act'eSlI

achieved in this(tenn)certaiJl.. Iy made be feel very good:' he said.

"We'D continue 10 moniror CORD. the fire services

and the tax situation, making" Oerricboo to set up the ~ suq:' SCI'\Iices am being pm- ory counciI/ said Manzer. vided that we feel should. bit· '1spentfouryearsontbat.. there:" working. with, lawyers and '

In addition to- Teicl1grar. helpin3 10 write the advisory : ~ Avril Manzer will be ac-:' councillaw." claimed in the East Boundary Bushfleld said she pat her Disrrict. whidJ covers reserve. name forward because~ she' . larxfs running from~, wanted to be mote involved Or'ive 10 Red Ooud Way.· and informed abOut what was :

She replaces her flusband.. going on on WFN land.- : Ray Manzer; who served 011' She agreed that work on- I the advisocy COUIlCJl for the roads. ~ lights; and ! last three years. . sewers:- is, I'IIeC:ded on many i

He left the council dUr: Uf . pans oftbe rese.m:.. ' I

iIJDes&.. -, . . " . She also wants 10 see bet.. i Sandra Bushfieldwill alsa· tel' bylaw enfOicemeut on re- i

be acclaimed in the I...aIa::shore serve lands. . I District afta- incumbent 101m " realize the. WFN is a l Thompson decided not 10 JUD fairly' l1e\Y govenm)tOt, lU , again. " it must start enfc:mng SOIDe' I'

'llte l..a.Itesl1m:' District rules widlin ics jurisdiction. .. covers manufactured homes: She alSo wants to ensme I and other residences along the WFN wab closely with ! Boudltrie Road.. the- new Westside· munici- !

Manzer- said ste is no pal government on common i stranger to the advisory COUD-. issues.. i ci1 system. ''We must grow together," i

'1 was one of tho first said Bushfleld. people that was appointed by (fOlTJlel' WFN Chief) Ron J~

.I/'" "

No. S112688 Vancouver Registry


BETWEEN:

AND:

AND:

LEE CARTER ET AL.

PLAINTIFFS


DEFENDANT


AFFIDAVIT

Arvay Finlay Barristers

1350 - 355 Burrard Street Vancouver BC V6C 2G8

Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

BETWEEN:

AND:

AND:

This is the 1 st affidavit of Janet Crowley in this case

and it was made on \ \ Jul 2011



LEE CARTER, HOLLIS JOHNSON, DR. WILLIAM SHOICHET and THE BRITISH COLUMBIA CIVIL LIBERTIES ASSOCIATION

PLAINTIFFS

A TTORNEY GENERAL OF CANADA

DEFENDANT

A TTORNEY GENERAL OF BRITISH COLUMBIA

INTERVENOR

AFFIDAVIT

I, JANET CROWLEY, professor at Seneca College of Applied Arts and Technology, of

119 Merton Street, Suite 112 in the City of Toronto, Province of Ontario, SWEAR (OR

AFFIRM) THAT:

1. I am the wife of Nagui Morcos ("Nagui")and as such have personal knowledge of the

facts and matters hereinafter deposed to, save and except where same are stated to be made on

information and belief, and where so stated, I verily believe them to be true.

2. I have been married to Nagui for 20 years, since June 8, 1991. Before I married Nagui, I

knew that he had a 50 percent chance of inheriting Huntington's disease from his father. I was

aware that there was a strong possibility that Nagui might not grow old with me, but I took the

risk because I loved him and wanted to spend my life with him, come what may.

02-Sep-11

Vancouver

- 2 -

3. I was sad when we learned in 1995 that Nagui had the gene for Huntington's disease, but

it did not change the way I felt about him. I love Nagui even more today, and even if I had

known then that he would inherit Huntington's disease, I still would have married him. I would

not change a thing.

4. I am aware that it is Nagui's wish to end his life before his disease progresses to a point

that life is no longer worth living for him. So far we have been very lucky. Nagui has known he

had the gene for Huntington's disease for 16 years, and it has only been in the last five to seven

years that the symptoms of the disease have become progressively more evident.

5. Nagui and I have had many discussions over the years about the progression of his

disease and his end of life choices. I have repeatedly told Nagui that I hope he will keep

extending the amount of time that he wishes to remain alive. However, I have also told him that

I understand that this is not a decision that I can make for him. It is his health, his life, and

ultimately his decision. When he is ready to go, it will be his decision.

6. Nagui has a very strong will to live now and I hope his will to live lasts for much longer.

I am aware, however, that his condition is worsening, and in the next several years, or perhaps

months, his condition will deteriorate considerably more. I expect that his physical disabilities

will increase and that he will gradually begin to experience cognitive and personality losses. My

role as his wife is to love him and to let him go when the time comes. It will not be easy for me.

I will never be ready to let him go, and I will miss him forever.

7. Despite how much I would like Nagui to remain in this world, I strongly believe that it

would not be fair or right for me to try to impose my wishes on him. He knows what he needs

and wants to do and only he can make the choice. It is his right to determine the timing and

manner of his death, and I must leave that choice to him.

8. Nagui told me he does not want to burden me with caring for him when he becomes

debilitated. He has told me that he wants to spare me the horrible experience that he and his

brothers suffered through when his father was dying from Huntington's disease. He has also told

me he wants to spare himself that suffering. I can understand why Nagui would wish to spare

me that worry and stress, but I would gladly care for Nagui until he died from Huntington's

- 3 -

disease-related causes. I have told Nagui many times that I would care for him for any amount

of time, despite the progression of the disease. I would never want Nagui to feel as though he

has to end his life in order to spare me from the difficulties of his disease.

9. IfNagui changed his mind and decided that he wanted to live his life until the disease or

its complications took his life, I would completely support his decision, and I have told him as

much. I would take care ofNagui until the end of his life, no matter how debilitated he became.

10. I have told Nagui there is a great deal of support that would be available to us and I

would not be alone in caring for him. We have a very close network of family and friends that

would help care for him and would support me. In addition, there are many services available in

Toronto for individuals and their caregivers who are living with Huntington's disease.

Accessing these services would not cause us financial hardship.

11. If Nagui decided to live until the disease or its complications took his life, I would want

to care for him in our home for as long as possible. I would be able to take the time required to

look after him in his illness. I am aware that in-home nursing care would be available to us, and

I would use that service to assist me in caring for my husband. Nagui and I have already

accessed numerous services such as counselling, occupational therapy, dieticians and

physiotherapists. Those same services would be available to us as Nagui's disease worsened.

12. It is my great hope that Nagui will continue to live for as long as possible. It will be

extremely hard for me when he decides to end his life. Nonetheless, I strongly believe that I

must be prepared to let him go. It is not love to hold onto him for too long, against his will and

his wishes. There is love in the letting go.

A Commissioner for taking Affidavits for JANET CROWLEY Ontario.



BETWEEN:


AND:

AND:

PLAINTIFFS


DEFENDANTS


AFFIDAVIT


1350 - 355 Burrard Street Vancouver BC V 6C 2G8

Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

This is the 1 st affidavit of Leslie Laforest in this case

and it was made on 22 Aug 2011



BETWEEN:

AND:

AND:


PLAINTIFFS


DEFENDANT


INTERVENOR

AFFIDAVIT

I, LESLIE LAFOREST, entrepreneur and artist, of 4285 Yuculta Crescent, in the City of

Vancouver, Province of British Columbia, SWEAR (OR AFFIRM) THAT:

1. I have personal know ledge of the facts and matters hereinafter deposed to, save and

except where same are stated to be made on information and belief, and where so stated, I verily

believe them to be true.

2. I have Stage mc anal cancer. I am a married, 54 year old mother of an 18 year old

daughter. There are not enough words to adequately describe the despair my family, my friends

and I are currently going through.

02-Sep-11

Vancouver

- 2 -

3. While doctors are aiming for a cure, there is a chance it might not happen, and death from

this disease is ugly. If my condition worsens and becomes terminal, I want the right to die with

dignity.

4. I want to have the right to die at a time that is within my control, not after unremitting

pain has become my bedside companion or morphine has taken over my consciousness and I

have passed into oblivion. My intention is not to wizen away, delusional, morphed out to the

point of a comatose skeleton. It will be my suffering, my life and my death that will be involved,

and I believe I should have the right and responsibility to make that critical choice for myself.

5. I am physically fit, strong and vibrant. I love my life, but now I am thinking about how I

would like to die. I do not want to die a horrible death from this disease. I want my death to

match the kind of life I have lived.

Personal History

6. I am not a person of suicidal persuasion. I have always been an adventurer, a risk taker, a

person eager to take the interesting path over the predictable. I left home at a young age to live

in Northern Ontario, moving from there to some of the most beautiful locations in Be. I have

hunted wildlife with a camera in the Kootenays, lived in far Northern Be, hiked the Alaskan

panhandle traipsing through a multitude of First Nation's villages, and jumped off snow trains

into eight-foot banks of snow so I might snow shoe with gear to a trapper's cabin in the middle

of nowhere, Ontario.

7. I have traveled the world and lived the ex-pat life for five years in Australia - no easy

feat dragging around a kid, a husband, a dog and a cat all over this continent and to several other

places in between. I ran my own clothing design studio for many years and worked as a

commercial real estate paralegal professionally until my husband and I took over our electrical

engineering firm. During all of this, I have run adventure clubs for kids, taught design classes,

created costumes for theatre productions at my daughter's schools and renovated nine different

houses for which I did half the physical work and acted as general contractor over the rest.

- 3 -

8. Currently I consider myself officially retired. I spend my time gardening, painting,

creating glass mosaic installations and setting in motion the next phase of my life, as our

daughter leaves the nest to head off to university.

9. I am a crucial hub in a large extended family and social network; people love me as much

as I love them. Our family home is often the centre of large, raucous gatherings. Life is full for

me and mine. We make the most of what time we have and never stop treasuring the fact that

most of us are healthy and happy and a valued support to one another in any situation. In short, I

am a person in love with life vibrant, dynamic, ever changing life wholly aware that a "great"

life is intrinsically linked with quality. And mine is one of quality.

Medical History

10. I am unfortunately not a neophyte when it comes to medical issues. I have experienced

several injuries and surgeries over the past 55 years, which have introduced a wide range of pain

and physical impacts upon my body. From the time I was little, I was not a person one would

peg for continuous health concerns. Alas, the reality of my situation at cellular level was quite

different.

11. Having my tonsils out at five was the beginning of a long litany of hospitalizations

throughout my life. At 18, I was hospitalized for what was speculated to be a severe kidney

infection, but the tests were inconclusive. I tore my cartilage skiing in my early 20s and then

suffered a traumatic eye injury from competitive badminton. When I turned 30, I had the first of

three ectopic pregnancies that would occur over the next six years; meaning three lost babies,

requiring three times a slit open belly. I recovered quickly through sheer determination and

personal fortitude. I did not sink into depression; I simply persevered and looked to the "next

try" heading out on my bike each day at 7 a.m.

12. I soldiered through the ectopics, and the lost pregnancIes and the myriad of other

accidents and physical thrashings, because that is what I do. I do not believe in giving up. I do

not believe in caving into physical tOlment or the psychological wallops life deals us from time

to time.

- 4 -

Heart Disease Diagnosis

13. However, nothing in my medical history prepared me for what came next. At the age of

47, being physically fit with no weight issues, no family history or life risks, I was diagnosed

with severe premature cardiac artery disease ("CAD"). It came as a shock not only to me, but

also to the medical team involved. Within three weeks of diagnosis, I was rushed to open heart

surgery during which my chest was cracked open and a left internal mammary artery bypass

graft was performed, a type of coronary artery bypass surgery ("CABG"). Five weeks later, the

CABG completely failed and I was hospitalized for a second traumatic time. This time, the

doctors determined that they would insert two drug-eluting stents.

14. I had been so thoroughly convinced by my treatment team that CABG was the only thing

that could save my life, that I did not think I had a chance. I spent the night before stent

deployment coming to terms with the fact that I might die the next day. I was glad that if the end

came, it would come quickly on a catheter table away from my family's watching. I was also

glad that I did not have cancer, or a heart attack or stroke, leaving me a writhing mess on a

hospital gurney.

15. When I was going through the diagnosis, treatments and surgery for my heart condition,

my husband and I had many end of life discussions. Like any mother, I wanted to know that

everything was going to be alright for my then 11 year old daughter if I died. The night before

the surgery to put the stents in my veins, I wrote letters to my husband and daughter to say

good-bye.

16. I survived the life saving stent deployment, but I have never forgotten that near death

experience. That experience taught me to be at peace with death, and to accept that I could not

hold onto life forever, no matter how much I wanted to.

17. After the procedure, many months later I finally learned that the type of CAD I suffer

from is called "intimal hyperplasia." It is rare, progressive and potentially lethal. There is only

one specialist in all of North America currently studying this disease, which is thought to be

autoimmune in nature. It affects women more than men. In layman's terms the arteries of my

- 5 -

heart are "delaminating." They are blistering and blocking blood flow to my heart, a condition

known as stenosis. This will continue to happen for the rest of my life, and it is life-threatening.

18. At the time of surgery, it was thought I would stenose to potentially lethal levels every

four to six months. I was told that if I was lucky and continue to have anginal warnings as I did

in the past, I would get to an emergency room in time to be cleared out using stents. If I do not

have any warning sign, I will undergo a massive cardiac infarction, with a highly elevated risk of

massive stroke.

19. It has been seven years since the last intervention. An investigative CT scan in October

2009 showed my arteries blocked at a 50 percent level. It is suspected I am now at a 60 to

70 percent level. This is the reality under which I have lived for the past seven years.

Cancer Diagnosis and Treatment

20. I certainly believed at the time of my heart issues that there would never be anything

worse than what I had gone through. I was wrong. I was diagnosed with Stage mc anal cancer,

squamous cell carcinoma, in May 20 II.

21. Only two people in 100,000 ever contract this type of disease. The statistical five year

survival for this stage of anal cancer is around 45 to 60 percent, depending on the source. My

radiation and chemo oncologists while cautiously optimistic for a cure, stress I have extensive

pelvic disease. Although squamous cell carcinoma is one of the easier cancer cells to kill with

chemotherapy and radiation, I have an extensive number of deep pelvic nodes and my tumor sits

at 3-4 cm making it larger, denser and harder to kill. Because of the large number of nodes, there

is a greater chance of recurrence.

22. As a patient, I have had to submit to a number of embarrassing and dehumanizing

procedures. A recent treatment session required lying on a table with my butt wide open, with

people standing around and putting fluids and dyes in my anus. No one who is healthy and

dynamic can understand what this feels like. Unless you have been there yourself, you have no

idea what it is like to be lying on a medical table, having a tumour in your anus be measured for

radiation. It is hon-ific, embarrassing, frustrating and painful to be sick and dying.

- 6-

23. I have been told that I will likely experience a number of alarming side effects. Radiation

and chemotherapy will wipe out my red and white blood cells to dangerous levels, leaving me

susceptible to infections, moulds and severe fatigue. The radiation may lead to severely burned

skin. My doctors have told me to expect burning of my vulva, anus, bowel, vaginal canal and

bladder. This cannot be avoided as I am being irradiated right through the pelvis.

24. If I survive the cancer, I may end up with permanent scarring of my bowel and anus

resulting in diarrhea and incontinence. My vulva and vaginal canal will likely shrink and be

scarred making intercourse painful in the future. My bladder may be damaged and require, like

the vagina, dilators to stretch out badly scarred tissue, and stents to hold open vessels and canals

that have collapsed.

25. I asked my oncologist what would happen if I decided not to have this painful treatment.

They told me this was not an option. They described that death by this type of disease is ugly. It

is not a way anyone would want to die. It would take time and I would die in agony, regardless

of pain medication and therapies that currently exist. They described how my legs would swell

to gross proportion as the poisons and toxins built up in my system. And the tumour would

continue to grow to explosive proportions blocking off the bowel which will begin to twist and

contort under pressure. I would ooze putrescence and mucous, blood and fecal matter out of

every orifice. No amount of drugs they assured me would deal with the "break through" pain.

26. I decided that I would undergo the treatments to try to avoid an awful death, and also

because my daughter is just starting university in the fall, and I wanted to make sure that she

could take her first steps into adulthood unencumbered by that nightmare. Even if I were to only

get another year, I want that time.

27. Of course, there is the possibility that even despite all my best attempts to beat this

disease, I might not be one of the lucky ones. The normal course of incurable anal cancer is that

the tumour in the rectal area infects local nodes, which go on to involve the lymphatic system.

These nodes enter the bloodstream and are quickly spread to the adrenal glands, then to the liver

and lungs, and then if you survive long enough, into the brain. It was easy for me to deduce that

if I am not lucky this first time around, I have months, maybe years of medical t0l1ure and agony

- 7 -

to face before hitting the end of this vicious disease. Now if you were to take my place in this

story, can you understand why I might want to skip the last chapter?

My Views on Death and Dying

28. I have honed my philosophy on death and dying over my 55 years on this planet. At the

age of 19, I visited my mentor, Miss Claire Miller, who some months before had been diagnosed

with a form of cancer. At the urging of my uncle, who said she did not have much time left, I

went to the hospital to offer her my support.

29. I found her curled up in a hospital bed in a private room. Maybe 5'2" and 95 pounds

well, she had shrunken to a 65 pound skeleton of waxy grey skin stretched over pointy bones

sticking out from everywhere. I called her name and touched her hand, surprised at its warmth,

but she did not recognize me and could not move, only moaned through a gawping mouth she

was not able to close.

30. Her one free hand was scratching at her covers and it was obvious to me, despite my

discomfort and shock, that she was trying to get me to help her and she was not happy. I kept

asking what she needed and ended up pulling back the covers to see what she was trying to get

at. She had bedsores through to the bone, a big Kotex pad between her legs tethered with one of

those old-time belts. She was oozing out of orifices that were staining the bed beneath her.

Despite no discemable language, I could tell she was in pain. I called for a nurse and told

Miss Miller she was coming before I left, too frightened to look back at what remained of her.

31. Miss Miller, regardless of receiving the best medical care of the day, died alone, III

agony, a festering pile of excrement, urine and bone. There was not an ounce of dignity to it. I

vowed then and there that I would never die like that.

32. My philosophy was further refined 18 years ago, after my mother had a viral attack that

went to her heart. The attack caused her to suffer from cardiomyopathy, which is when the heart

muscles begin to deteriorate. Cardiomyopathy is a severe heart condition that generally leads to

heart failure. The doctors told my mother that she only had another year or two to live, unless

she had a heart transplant.

- 8 -

33. For personal reasons, my mother did not want a transplant and she took herself off the

waiting list. My gut reaction was that she had no right to refuse a transplant. I felt that she had

no right to do that to me. I was so angry with her. She insisted that it was her life and her body,

therefore it was her choice. My mother was absolutely right. It was inconsequential how I felt

about her decision, this was about self-determination.

34. This experience with my mother taught me that I have rights over my own body,

including the right to choose to end my life. This right does not belong to the government, my

husband or even my daughter.

35. My mother is still alive today, which means she exceeded her doctors' prognosis by

16 years and counting. I am well aware of the fallibility of medical prognoses. I am well aware

that people can defy the odds. I defied the odds with my heart disease. Medical odds are defied

all the time; sometimes people live longer, sometimes they live shorter. I am well aware that if I

were to choose to take my life, I would lose the chance to prove my doctors wrong. But that is a

risk that I may be willing to take. Either way, it is my choice.

36. My husband and I have discussed end of life issues In abstract form off and on

throughout our 22 years together. We have discussed it in concrete terms since my heart

surgeries and much more pressingly now that I have cancer. These most recent discussions have

been heartbreaking because everything is so urgently real now. Our daughter is just now

branching out into her own life, so the possibility of her losing her beloved mother weighs

heavily on our discussions, but does not dissuade us ~ does not dissuade me from dying with

dignity if and when the time comes.

How I Intend to Die

37. My heart surgery and then my cancer diagnosis have solidified my views in dignified

dying. I have worked very hard at the person I am to all of my people. I will not allow a long,

lingering, painful death ~ their memory of it ~ to overwrite the "me" that exists today. I mean

what I say. And I will die the way I mean to ~ whether laws are changed to help me do so with

dignity or not.

- 9 -

38. It is fine to have such fervent beliefs, but when it is not backed by legislation, how

exactly would I put-pay to my wishes? I have considered traveling abroad to a country that has

supportive euthanasia laws to seek an assisted suicide. I currently do not know how this works,

and I am daunted by the research and planning I would have to undertake to make this a viable

option. In my current condition, this feels insurmountable.

39. There is also the difficulty in timing such a trip, because I would have to go probably

well ahead of when I actually need to leave this life - as I would have to be ambulatory enough to

fly there, to make it to a facility and to be of sound enough mind to make my intentions legally

believable. There is also the financial impact I have absolutely no idea about - how much would

such a venture cost? Body transport and legalities to get it back home? How would my husband

handle it? My family? My friends? Particularly if I exit before eking out that last little bit of

quality life I could have were I to die at home. This is not a vacation I would relish planning.

40. One of the more likely options I have considered is carbon monoxide asphyxiation. I

would fix a large hose from the exhaust of my car. I would feed it into the rear window, fixing it

securely and taping any gaps to ensure the carbon monoxide could not escape. I would take just

enough sleeping tablets to ensure I would fall asleep without vomiting them up, crawl into the

car with a good book and my iPod, tum on the engine and drift off into oblivion. I would do this

at a time when my husband was out of town and my daughter was somewhere secure at

university, to ensure she would not be the one to find my body.

41. I would have prepared ahead of time a large collection of DVDs and tapes and writings to

do with my final days and a note for my husband to find on his return. In that note I would

explain the how and why I chose that moment to exit. He would already know my many

intimate thoughts around all of this, but just not the moment I would actually be saying goodbye.

I would hope to alleviate his sorrow with this, but know in my heart nothing can replace a final

goodbye. I would hope my husband and daughter would forgive me.

42. I have also considered trying to find street heroin. I would swallow enough pain killers

with the hopes that the pills in conjunction with a first-time injection would stop my heart either

instantly or sometime shortly thereafter. But I will have to first learn how to self-inject; it is

something I do not know how to do, and I have no experience buying street drugs.

- 10 -

43. If it were winter, I might take myself up to my beloved mountains and snowshoe, say at

Hollyburn. Having taken enough sleeping pills to ensure I did not wake I would simply pull off

the trail when I got tired, preferably as the sun goes down, and drift off to sleep, freezing to death

painlessly.

44. All of the options I have thought about would require me to end my life while I am still

able bodied and capable of taking my life, well ahead of when I actually need to leave this life. I

would never want to subject my husband or daughter to the possibility of criminal charges, so I

would never enlist their help.

45. I would never hang myself, slit my wrists or use a gun. I would never do that to my

family. I do not want my family to have to deal with that. And I hate the thought of plummeting

from a bridge or drowning so those options too are ruled out. I will look into organization

"Dying with Dignity" to see if I meet their criteria and if they might be able to help me out by

providing counseling or advice.

46. It is an emotional journey every time I reflect in this manner. Tears never fail to stream

down my face when thinking this way. I have sometimes been reduced to racking sobs, so I limit

the amount of time I dwell on dying to sensible amounts, but it is difficult to determine what is

sensible in matters such as this. At all costs, I do not wish to become depressed, so I try to only

think about these plans when I have the strength to dissect the matter and cogently tum it over in

my mind before putting it away for a while to go and live! There is no doubt in my mind or heart

that I can and would make it happen if the time comes. It is heartbreaking for me to contemplate

that I may have to make this choice while I am still able bodied, but before I am ready to go.

47. I fervently believe I should not have to do this on my own. I should not have to think of

barbaric ways to do myself in, especially at times like this, when I am my most weakest. But the

law leaves me with no other choice.

48. I believe there is a clear difference between being "suicidal" and wishing to have an

assisted death. The former is a byproduct of hopelessness and depression in the face of very

clear ways forward if a person is helped. Wishing for an assisted death, on the other hand, is

- 11 -

when pain, loss of dignity and physical suffering affects so drastically that person's individual

take on quality of life that they no longer wish to endure.

49. On paper, I look like a very ill person. Reading my medical history you would think that

I am a failure. You would think that I am frail. You might be tempted to think: "Of course she

wants to die. She is depressed due to all of these medical struggles." That could not be further

from the truth. I love my life. I am strong and vibrant. After my heart surgery, I healed by

gardening and laying five coats of stain on my hardwood floors.

50. I love my life, but I do not want to live if I cannot do any of the things that make my life

enjoyable. I do not want to live if I can no longer bike, ski, hike, paint, write, garden and walk.

It is possible that I will lose all the things that bring me joy in this life. My life, at this very

moment, is full of so many things that make me happy. I do not want to be forced to live without

all of them.

51. I do not want to lose control. I see the loss of control as being when my mind is

extinguished and when my essence is gone. I believe that people are not their bodies or what

they say, they are their thoughts and minds. I will not allow my illness to reach the point where

it affects my cognition, and I will not agree to be sedated to the point of terminal sedation.

52. I wish to have the choice to die with dignity. I wish to do so at a time that is within my

control. My line-in-the-sand, so to speak, is when my mind is still "me" not the residual grey

goo left over from a losing battle of good tissue versus bad. I do not wish to be hooked up and

kept alive with countless medical devices keeping my body alive when there is little of anything

left of my mind.

53. My every waking moment is overshadowed with the omnipotence of my cancer. It is

rather like a Peter Pan shadow, acting on its own but every bit a part of me, pulling me forward

into the unknown. I look out on a beautiful sunrise or the rain with as much interest as I have

always had, but there is an added dimension now - how much more of this will I see? I think of

how much of a role I will be able to play in my child's life, my beautiful accomplished daughter

whom I treasure even more now than I ever thought possible. And my husband, who has kept

our family strong as he shoulders his caretaker role so beautifully and generously. These are my

- 12 -

people. The sorrow I feel when I think about how much I will hurt them should I die sometimes

leaves me gasping.

54. Life has changed, irretrievably changed. And neither my husband, daughter nor I know

exactly where this new circumstance will lead us. We approach it with hope, but pragmatism

dictates we should all at least have backup plans if the situation does not pan out the way we

want it too.

55. I would have much preferred to have the fortune of good health for a lifetime. But I do

not have that, so I simply ask to exit this life quickly, painlessly and with the dignity I choose.

Who has the right to say when and how an ill individual dies? Should it be left to society,

comprised mostly of people who are not dying? Or should it be left to the ill person who is,

simply put, doing the actual dying? It is my fervent belief that no one has the right to tell me

how, when and where my dying ought to occur.

SWORN (OR AFFIRMED) BEFORE ME ) at Vancouver, British Columbia, on 22 Aug ) 2011 )

) )

At ommissioner for taking Affidavits for ) British Columbia. )

...........

..""... • ..,Ie"., IC Clvi' ,,'IIe,tie, ASIO(iatioft SUIte 550-11M West GeorIiI Stfftt V'ft(Ouver, IC VIE 4A2 Tet: 604-630-9151



BETWEEN:

AND:

AND:

LEE CARTER ET AL.

PLAINTIFFS


DEFENDANTS


AFFIDAVIT



Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

This is the 1 st affidavit of Anthony Nicklinson in this case

and it was made on Aug 2011

No.Sl12688 Vancouver Registry


BETWEEN:

AND:

AND:


PLAINTIFFS


DEFENDANT

ATTOR~EY GENERAL OF BRITISH COLUMBIA

INTERVENOR

AFFIDAVIT

J, ANTONY NICKLINSON, o;f 2c Thames Crescent, in the town of Melksham, United

Kingdom, AFFIRM THA T:

1. I have personal know ledge of the facts and matters hereinafter deposed t f), save and


believe them to be hlJe.

2. I submitted the following evidence at the United Kingdom ("UK") Commission on

Assisted Dying in 2010:

a. Attached hereto and marked as Exhibit A to this my Affidavit is a true copy of an

Evidence Submission completed by me for that process and undated.

02-Sep-11

Vancouver

- 2

b, Attached hereto and marked as Exhibit B to this my Affidavit is a true copy of a

Statement for the Commission authored by me for that process and dated

December 13,2010,

c. Attached hereto and marked as Exhibit C to this my Affidavit is a truc copy of a

transcript of oral evidence given on my behalf by my wife, Jane Nicklinson, and

my solicitor, Ms, Saimo Chahal of Bindmans LLP titled "Transcript of Evidence

from Jane Nicklinson and Saimo Chahal, on Behalf of Tony Nicklinson to the

Commission on Assisted Dying" dated December 14,2010.

3 I swear that the content of these statements was and remains true,

4. To 'lssist with the Commission on Assisted Dying, I also set out my own ideas for a

Scheme for Assisted Death. Attached hereto and marked as Exhibit D to this my Affidavit is a

true copy my Scheme for Assisted Death dated December 7,2010, I continue to believe that this

scheme represents a credible and practical alternative to prohibition against assisted death.

5. In 2010 I commenced Judicial Review proceedings in the High Court in Gngland

against the Secretary of State for Justice, Attached hereto and marked as Exhibit E to this my

Affidavit is a true copy of a written statement authored by my solicitor Ms. Chahal, titled "Tony

N icklinson' s legal case" which sets out the nature of that pro,,:eeding and j.,; dated

December 14, 2010. This written statement was also submitted into evidence at the UK

Commission on Assist,)d Dying and I swear that it is true and accurate.

6. Attached hereto and marked as Exhibit F to this my Affidavit is a true copy of a Written

Statement authored by me in the context ofthese proceedings and dated July 14,2010.

7. I swear that the content of this statement was and remains hue.

8. The current position with my case is that the Judicial review proceedings were

discontinued at thc end of 20 10 due to a change in legal strategy for a number ,)f reasons.

9. My solicitor is now preparing a case which wiII seek Declarations in the High Court as

follows:

3 -

a. That it would be lawful, on the grounds of necessity, for Mr. Nicklinson's GP or

another doctor to terminate Mr. Nicklinson's lite. By way of preliminary issue

Mr. Nicklinson seeks a declaration that the common law defence of necessity is

available to a charge of murder in a ease of voluntary active euthanasia and/or to a

charge under s. 21 of the 1961 Suicide Act in the case of assisted suicide,

provided the eourt has sanctioned the act in advance.

b. Alternatively, that the current law of murder and/or of assisted suicide is

incompatible with Mr. Nicklinson's right to respect for private life under Article 8

of the European Convention on Human Rights and contrary to s. 1 and s. 6 of the

Human Rights Act 1998, insofar as it criminalises voluntary active euthanasia

and/or assisted suicide.

c. Further or alternatively that existing domestic law and practice fail to regulate the

practice of active euthanasia because it drives the practiee undergrcund where it is

unregulated and lacks transparency, placing vulnerable individuals at greater risk

than if it were legalised and in breach of the United Kinguom's positive

obligations under Article 2 (the right to life).

10. It is anticipated that proceedings will be issued as soon as medical evidence has been

obtained about my eondition, capacity to make decisions and the pain and suffering I am

experiencing by not having the right to die at a time of my choosing as I cannot commit suicide

due to the level of my physical disability and anyone assisting me is likely to be cLarged with

murder.

11. I swear to the truth of the contents of this statement.

AFFIRMED BEFORE ME at

275 Grays Inn Road London WC IX 8QB, United Kingdom

) ) ) ) ) ) )

ANTHONY NICKLINSON

This Is Exhibit A referred to in the

Evidence from:

Name: Tony Nicklinson

Profession: Ex civil engineer

This document is a public call for evidence by the Commission on Assisted Dying to seek evidence from members of the public regarding:

• What system, if any, should exist to allow people to be assisted to die

• The circumstances under which it shc:uJd be possible for people to be assisted to die

• Who should be entitled to be assisted to die

• What safeguards should be put in place to ensure that vulnerable people are neither abused nor pressured to choose an assisted death

• What changes in the law, if any, should be introduced.

In this document the following definitions wiD be used:

Providing someone with the means to end his or her own life.

A doctor ending a person's life at his or her own request.

1

A compendium that can refer to voluntary euthanasia and/or assisted suicide.

According to the Suicide Act 1961, encouraging or assisting a suicide is a crime punishable by up to 14 years imprisonment. However, the recently published Crown Prosecution Service 'Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide'i has provided clarification on which factors would make the prosecution of somebody who assists a suicide more or less likely.

For example, the guidance has made it clear that if the person assisting the suicide was 'wholly motivated by compassion' their prosecution is less likely to be in the public interest. The guidance has also specified that doctors or other medical professionals who assist somebody to commit suicide are more likely to be prosecuted for their actions than family members or friends who provide such assistance.

Please give your opinion i;l response to the following questions, inc111ding any evidence or personal experience that supports yom' VIew:

1. Do you think that it is right that in certain circumstances, the DPP can decide not to prc,:ecute a person whu assists another person to commit suicide?

No because if a person breaks the law that person sho-ul-d-b-e---l p:osecuted otherwise, as wi'.:h this law, it brings the law into dIsrepute.

-.---.---~

2

2. Is it right that it is currently illegal for a health care professional to assist somebody to commit suicide and that a healthcare professional is more likely to be prosecuted for providing assistance than a friend or family member?

regulated and written given by the person who wants to commit suicide.

3. Dm;s the DPP policy currently provide sufficient safeguards to protect vulnerable people?

oray because the law makes assisted suicide megaL -----1 _J

4. Do you think that any further clarification of the DPP poliey is needed? Or has the DPP policy already gone too far?

clarification is H'--''--''-'''--''-'. to assist who wants to commit suicide.

5. Do you think there should be change in the law to create a Jegal framework that would allow some people to be assisted tc: die in certain circumstances?

3

The following questions seek to explore the question: if some form of assisted dying were to be legalised, who should be able to access assistance and what safeguards would be needed to protect vulnerable people? Please give your opinion in response to the following questions, including any evidence or personal experience that supports your view:

The 2005 Assisted Dying for the Terminally III Bill sought to provide access to an assisted death only for those who have been diagnosed with a terminal illness, who have mental capacity, who are experiencing unbearable suffering and are over the age of 18.

6. If some form of assisted dying were to be legalised, who do you think should be eligible for assistance?

Please refer to the briefing documentfor a more detailed discussion of eligibility criteria used in previous draft legislation in the UK and inforeignjurisdictions.

7. If some form of assisted dying were to be legalised, what safeguards would be required to protect vulnerable people?

Safeguards that exist in some otherjurisdictions include: the person must initiate the requestfor an assisted death him/herself; the person should be aware of alternative options for pain and symptom relief and palliative care; the person should be referred for counselling if it is suspected that they are suffering from a psychological disorder; and the decision

4

to assist must be agreed by two independent doctors. Please see the Demos briefing paper for further discussion of potential safeguards that could be included in legislation.

Using a test which identifies, among those people who need help to die, those who don't have the intellectual capability of understanding what self-determination means and ruling them out of any scheme for assisted dying. Prosecuting those who put pressure on people (coercion).

8. What do you think are the main risks (both to individuals and to society) that would be associated with legalising any form of assisted dying?

None, done properly.

9· a. If some form of assisted dying were to ce legalised, who

do you think should make the deci;~ion on whether somebody who requests an assisted death should be eligible for assistance?

b. Should this decision be made by doctors, by an independent judicial body such as a tribunal, or by another type of organisation?

5

No, the person who is going to die should make it because it's his life.

These questions explore how, if some form of assisted dying were to be legalised, doctors might be involved in facilitating assisted dying, and how assisted dying might work within the existing framework of end of life care. Please give your opinion in response to the following questions, including any evidence or personal experience that supports your view:

10. If some form of assisted dying were to be legalised, should doctors be able to take a role in assisting those who request assistance to die?

a. If yes, what actions should doctors be ahle to take? b. If no, please explain your reasoning.

Doctors should advise the person wants to any treatments J

that exist for his condition and the chances of them making a difference. If that fails to change his mind, offer his help including administering the fatal dose.

11. If some form of assisted dying were to be legalised, what provisions would be required to protect doctors and other healthcare professionals who are ethically opposed to assisted dying?

6

It would be sensible if the measures adopted for abortion were also adopted for this, suitably modified if necessary.

12. Could assisted dying have a complementary relationship to end of life care or are these two practices in conflict?

are not in

13. the law was to be changed to permit some form of assisted dying, what forms of assistance should be permitted? Should assisted suicide be permitted? Should voluntary euthanasia be permitted? (Please see the definitions above).

Assistance should be whatever is required because once the decision to die has been made, the assistance necessary to make it happen is

one of degree

14. Should those who wish to be assisted to die, but are physically unable to end their own lives, receive assistance to die? If yes. what assistance should be provided?

7

15. Please include here any further comments, evidence or personal . experience that you would like the commission to consider:

i 'Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide' available at: http://www.cps.gov.uk/publications/prosecntion/assisted_suicidp Dclicy.html

8

Copy Statement t()r the Commission dated December 13,2010

This is Exhibit B referred to in the l).M'tf't;:,vtt of Anthony Nicklinson, sworn

me on August .2 2. , 'lI\'k>~~"

9

Statement for the Commission

Thank you for hearing my evidence. I apologise if the statement is long and goes off at a bit of a tangent to the main topics but I hope that the Commission appreciates that answering contemporaneous questions is next to impossible for me and therefore I have to give the fullest comment possible. If, however, the Commission has any questions I would be pleased to answer them if they are put in writing.

The present law, which prohibits any form of assisted suicide or consensual death, is not effective because people are going abroad to die; there are probably more who would go but perhaps they can't afford the journey. It is also discriminatory because it takes away the right to determine where, when and how a person may die as soon as that person becomes disabled and needs help. Prohibition does not work and never will. It is far better to regulate something than ban it.

The law does not reflect the fact that we are all living longer and therefore prone to age-related illness, has not kept up with advances in technology and is probably out of step ,,-vith public opinion. Furthermore, such discrimination is vVTong and would not be tolerated in any other situation. I wonder how the discrimination, when it is purely physical, squares mth current legislation which states that it is unlawful to treat disabled people differently from those who are not disabled.

This law has no place in 21st century Britain. A new law is required to reinstate this right of self·determination. Everybody, whether or not they need assistance, should be able to determine their own future. This should be the default position until it becomes an issue when the applicant is tested to see ifhe has the intellectual capability to make such a difficult decision. Notwithstanding a person's right to self· determination, I do recognize that certain people need protection. That is why the use of such iegislation by those who need help to dif' should be subject to a test for competence; the law should be made difficult but not impossible to apply. I therefGfe submit The Schemefor Assisted Death for the Commission's consideration.

I'm pleased that the Commission is looking at assisted dying rather than just assisted suicide. It is in fact simply a matter of degree of the amount of help given. For example, help could be buying some drugs for someone who is housebound to administering a fatal dose to someone like me. Once the need for help is established and it is the clear and considered decision of the applicant, the amount and type .Jf help given is somewhat academic. However, I do realise that anything other than assisted suicide is probably too muc:~ to ask at this stage and so I won't ask for euthanasia even though it makes sense to do so.

At this stage you mll probably have a scheme in mind. The temptation will be to restrict the scheme to those people who have a terminaJ illness on the grounds that they are going to die anyway. I urge you to resist such temptation. In my scheme it is open to everybody over the age of 18 on the grounds that anything else is discrimination. It should not matter why a person wants to die, only that he has his reasons and they should all be respected.

1

10


Ethically, there is no greater issue than having the right to self-determination taken away just because one needs help to die. If this issue is resolved all other aspects of this topic fall into place. In fact a compassionate society would do all it could to help those people who need it. Tell me, what is enlightened about sending society's cripples abroad to die? Debbie Purdie's court case may have been a victory but the fact is that she still cannot determine her own destiny and she has to go to a foreign country to die. At least she has company while she does it so that's something, I suppose.

Please also keep religion out of this issue for it is purely secular. It is one thing to object to legislation and choose not to use it; it is another to block legislation because you happen to dislike what's proposed. I would hate to think that, as an atheist, my opportunity of a dignified death was thwarted by a religion I don't believe in.

Something needs to be done but neither palliative care nor some sort of tribunal is the answer.

Sir Terry Pratchett has suggested that a tribunal be set up. I ::tm not a supporter of such a body. I believe it is unnecessary, will be expensive and bureaucratic to administer and ultimately will just be a talking shop for a bunch of 'experts'. Central to a tribunal is its purpose but I imagine this Commission will tell us that in due course. Is it to question the decision of the appiicant? I hope not becaus~ that presumes the tribunal's judgement is worth more than the applicant's and I doubt that it is. Is it to determine if the law has been met? I would have thought that a judge is better able to determine that rather than a tribunal composed, I suppose, of laymen. I await the outcome of your deliberations with interest.

Other questions, and there are many, include these: Who sits on the tribunal? How many people make up a tribunal? Do they get paid? If yes, who pays them and how much? How often does it convene~' How big is a quorum? Is its judgement binding or is it only advisory, in which case its decision can be ignored so why bother? If it's binding, how does one appeal if one doesn't like its decision? If it makes a recommendation, to whom does it make it? What is the test for competence? It seems that the more one.i1sks questions, the more questions there are to ask.

Regarding palliative care, I'll askjust one question: Does it give me back my right to self-determination? If it doesn't it isn't much use. However, it might be to those who cannot, for one reason or another, take advantage of the legislation.

Some objectors to a change ofIegislation will tell you that it will start off volunt:=try but will eventually be compulsory. What a load of nonsense and anyone holding such a view should be ashamed of themselves for scaremongering. This is not 1930S

Germany. I reckon that for this to come true the following conditions must be met: the replacement of the Queen as Head of State; the control of both Houses of Parliament; the control of the judiciary. Of course, everything is possible but the

2

II


chances of these circumstances prevailing must be so remote that one has more chance of winning the lottery more than once. I suggest that you ask the person who holds such a view to describe the circumstances that would have to prevail for such a vision to come true.

To end, on a personal note I decided in 2007, some two years after my stroke, that I didn't want to go into old age like this. I engaged a lawyer to draw up a living will and stopped taking all drugs that were meant to prolong my life. I also wished for a lifethreatening condition like cancer so that my life may end sooner rather than later because the law is not helpful to me. I also considered starvation but concluded that J didn't possess the courage to go through with it nor did I have the courage to put my family and friends through that amount of distress.

So, we have a law which: condemns me and others like me to a life of misery; makes my V"ife Cor anybody else) a murderer for simply carrying out my wishes; puts reopl2 in jail for up to 14 years for helping someone to commit suicide; makes me wish for a fatal ,~ondition; makes me consider starvation as a way out and sends society's crippJes abroad to die. Tell me, just what is compassionate about that? Who will defend such a law? What sort of person might hebe? Who can defend the indefensible? Perhaps your Commission will tell us.

Thank 'fO'I.

Tony Nicklinson

13 December 2010

3

12

Tuesday 14 December 2010 2pm, at Demos

13

Lord Charles Falconer (LF): Thank you very much both for coming. Could just for the record briefly say who you are?

Jane Nicklinson (IN): I am Jane Nicklinson.

Saimo Chahal (SC): And I'm Saimo Chahal from Bindmans LLP.

LF: Jane what would be really helpful is if you could just ten us what happened to Tony and what effect it had on him over a period oftime. You used to live in Dubai ... you went on a ...

IN: He was on a business trip and he had a massive stroke and he is now left with locked in syndrome, which basically means he ca:l't move and he can't speak, the only movement he has is a slight head movement and eyes, so he has to blink if he want to converse with you. He blinks it out with the aid of a board, or he has a specially adapted eye-blink computer.

LF: What effects has it had on his ability to understand and thm}; about things?

IN: None whatsoever, I have actually got a statem,~nt which he wants me to read out, and you will see by the way he words it and everything that his mind is completely on the ball.

LF: Would you like to read the statement?

IN: Shall I do that now? It's a bit long winded I am afraid

LF: Don't worry

IN: [Reading 'Statement for the Commission' - also available separately on the commission's websi~!2l

Thank you for hearing my evidence. I apologise if the statement is long and goes off at a bit of a tangent to the main topics but I hope that the commission appreciates that answering contemporaneous questions is next to impossible for me and therefore I have to give

14

the fullest comment possible. If, however, the commission has any questions I would be pleased to answer them if they are put in writing.

The present law, which prohibits any form of assisted suicide or consensual death, is not effective because people are going abroad to die; there are probably more who would go but perhaps they can't afford the journey. It is also discriminatory because it takes away the right to determine where, when and how a person may die as soon as that person becomes disabled and needs help. Prohibition does not work and never will. It is far better to regulate something than ban it.

The law does not reflect the fact that we are all living longer and therefore prone to age-related illness, it has not kept up with advances in technology and is probably cut of step with public opinion. Furthermore, such discrimination is wrong and would not be tolerated in any other situation. I wonder how the discrimination, when it is purely physical, squares with current legislation which states that it is unlawful to treat disabled people differently from those who are not disabled.

This law has no place in 21st centmy Britain. A new law is required to reinstate the rights of self-determination. Everybody, whether or not they need assistance, should be able to determine their own future. This should be the default position until it becomes an issue when the applicant is tested to see if he has the intellectual capability to make such a difficult decision. Notwithstanding a person's right to self-determination, I do re'_ognise that certain people need protection. That is why the nse of such legislation by those who need help to die should be subject to a test for competence; the law should be made difficult but not impossible to apply. I therefore submit The Scheme for Assisted Death for the commission's considpration.

I'm pleased that the commission is looking at assisted dying rather than just assisted suicide. It is in fact simply a matter of degree of the amount of help given. For example, help could be buying some drugs for someone who is housebound to administering a fatal dose

15

to someone like me. Once the need for help is established and it is the clear and considered decision of the applicant, the amount and ty'Pe of help given is somewhat academic. However, I do realise that anything other than assisted suicide is probably too much to ask at this stage and so I won't ask for euthanasia even though it makes sense to do so.

At this stage you will probably have a scheme in mind. The temptation "vill be to restrict the scheme to those people who have a terminal illness on the grounds that they are going to die anyway. I urge you to resist such temptation. In my scheme it is open to everybody over the age of 18 on the grounds that anything else is discrimination. It should not matter why a person wants to die, only that he has his reasons and they should all be respected.

Ethically, there is no greater issue than having the right to selfdetermination taken away just because one needs help to die. If this issue is resolved all other aspects of this topic fall into place. In fact a compassionate society would do all it could to help those people who need it. Tell me, what is enlightened about sending society's cripples abroad to die? Debbie Purdy's court case may have been a victory but the fact is that she still cannot determine her own destiny and she has to go to a foreign country to die. At least she has company while she does it so that's sOHlething, I suppose.

Please also keep religion out of this issue for it is purely secular. It is one thing to object to legislation and choose not to use it; it is another to block legislation because you happen to dislike what's proposed. I would hate tc think that, as an atheist, my opportunity of a dignified death was thwarted by a religion I don't believe in.

Something needs to be done but neither palliative care nor some sortoftribunal is the a!1swer.

Sir Terry Pratchett has suggested that a tnbunal be set up. I am not a supporter of such a body. I believe it is unnecessary, will be expensive and bureaucratic to administer and ultimately will just be a talking shop for a bunch of 'experts'. Central to a tribunal is its purpose but I imagine this commission will tell us that in due

16

course. Is it to question the decision of the applicant? I hope not because that presumes the tribunal's judgement is worth more than the applicant's and I doubt that it is. Is it to determine if the law has been met? I would have thought that a judge is better able to determine that rather thau a tribunal composed, I suppose, of laymen. I await the outcome of your deliberations with interest.

Other questions, and there are many, include these: Who sits on the tribunal? How many people make up a tribunal? Do they get paid? If yes, who pays them and how much? How often does it convene? How big is a quorum? Is its judgement binding or is it only advisory, in which case its decision can be ignored so why bother? If it's binding, how does one appeal if one doesn't like its decision? If it makes a recommendation, to whom does it make it? What is the te~t for competence? It seems that the more one asks questions, the more questions there are to ask.

Regarding palliative care, I'll ask just one question: Does it give me back my right to self-determination? If it doesn't it isn't much use. How~ver, it might be to those who cannot, for one reason or another, take advantage of the legislation.

Some objectors to a change oflegislation will tell you that it will start off voluntary hut will eventually be compulsory. What a load of nonsense and anyone holding such a view should be ashamed of themselves for scaremongering. This is not 1930S Germany. I reckon that for this to come true the following conditions must be met: the replacement of the Queen.as Head of State; the control of both i iouses of Parliament; the control of the judiciary. Of course, everything is possible but the chances of these circumstances prevailing must be so remote that one has more chance of winning the lottery more than once. I suggest that you ask the person who holds such a view to describe the circumstances that would have to prevail for such a vision to come true.

To end, on a personal note I decided in 2007, some two years after my stroke, that I didn't want to go into old age like this. I engaged a lawyer to draw up a living will and stopped taking all drugs that were meant to prolong my life. I also wished for a life-threatening

17

condition like cancer so that my life may end sooner rather than later because the law is not helpful to me. I also considered starvation but concluded that I didn't possess the courage to go through vvith it nor did I have the courage to put my family and friends through that amount of distress.

So, we have a law which: condemns me and others like me to a life of misery; makes my wife (or anybody else) a murderer for simply carrying out my ""rishes; puts people in jail for up to 14 years for helping someone to commit suicide; makes me wish for a fatal condition; makes me consider starvation as a way out and sends society's cripples abroad to die. Tell me, just what is compassionate about that? Who will defend such a law? What sort of person might he be? Who can defend the indefensible? Perhaps your commission will tell us.

Thank you.

LF: Thank-you very much indeed. In the statement your husband says he has had the desire to die since 2007. That' ~ t'vo years after the stroke -- that's what he says in the statement. Since 2007, has his view changed? Has it come and gone or. .. ?

IN: No, not at all, He actually expressed his wish to die as soon as he could start communicating; as soon as he realised he -.vas not going to get betteLHe said he would give life a couple of years like this to see ifhe could adapt because people said people do adapt and you could learn to make the most of what you've got, so he gave it a couple of years.

LF: And, have you sought to try a persuade him not to, during that period of time?

IN: Yes we have many times, but 1 know him and I knew as soon as I had realised what would happen to him that this would come at some point.

18

LF: Were there outsiders you sought help from, either people expert in treating people with locked-in-syndrome, to try and make his view different from that which he had expressed in 2007?

IN: Yes he was in hospital for two and a half years, either in a hospital or rehab; he saw a psychiatrist and he has seen counsellors and everything, it did nothing.

LF: What does he do? How does he spend his days?

IN: He spends most of the day on his computer writing emails to people, looking on the internet, writing a book, he is writing his memoirs. His new computer is a lot better, he has this eye-blink computer which is a huge boost for him really. About 4 o'clock he comes off the computer and just watches TV in the evenings. He rarely leaves his room.

LF: Could you describe how he communicates you say the 'eyeblink computer': does that mean he can blink his eyes at a particular letter'?

IN: Yes, it's a perspex board; it has groups ofleUers and colours and by looking at a group ofletters and then a colour you can work out which letter he wants, so that you spell out a word.

LF: That needs a human intermediary to do that?

IN: Yes, he can only communicate witll people that know how to use the board.

LF: Right; and how many people know how to do that?

IN: Me, my daughters and one or two of the carers. People are velY reluctant to learn how to use it. It's like learning a foreign language; you're afraid you're going to make a fool of yourself.

LF: How long did it take you to learn it?

IN: About five minutes. It's very easy, the concept is very easy, it's just getting used to it. I know where his eyes are going, I mean I have done it for so long, so many times, just a slight movement of

19

his eyes and I can sort of work it out, it does take practice, but the actual principle is very easy.

LF: And something like the statement which you read today, which is obviously his, what's the form in which that is actually produced? Do you type it out as he does the letters?

IN: This is all done on his computer.

LF: He does it? Right. OK. Other questions. Elaine ...

Baroness Elaine Murphy (BM): Can I ask you about your own journey from this tragedy? Have you changed your mind at all about what you wanted for him? Do you think there is any hope that he will change his mind in the future? Do you know?

IN: No, none whatsoever. I knew this would come, as I said from the day he had the stroke. I am a nurse, so I knew what the prognosis was, and I knew that this point would come. We tried to talk him out of it, hut I can say one hundred percent there is absolutely no way he would change his mind; none whatsoever. And people have said tbings are changing, technology is improving, medical advancements, and he said you know to live for the next 20

or .30 years just for the hope ufbeing ahle to move a finger is just not enough.

BM: Tony has given us his view of what he doesn't want to happen. He obviously doesn't like the idea of the tribunal. What would his positive thoughts be, or what have you talked together about what he would like rathel than what he wouldn't like? What would he like?

IN: In an ideal world what he would like is for me to give him a sedative, so that he goes off to sleep and then hopefully a doctor or someone would come and give him the fatal dose, so I didn't actually give it to him and wouldn't have to live with that. In an ideal world, that's what he would like. At home.

LF: Just picking up his point ... He said, his words were that he thought it should be difficult, but not impossible to have an assisted

20

death. And I thought he was saying some sort of tribunal might be the answer. Is that right?

IN: He has got this scheme, I won't bore you with it now, I've got copies for everyone to have a look through, he has this scheme. I'm not sure exactly what the tribunal said to be honest. His scheme is quite simple. We do understand that there are people out there who need to be protected without a doubt; but at the moment they are being protected at his expense, his rights are been taken away from him and he can't see how anyone can see that is right, its not just.

LF: And just to press you: on his right, identify the right that you say is been taken away from him?

IN: To take his own life.

LI<': He's got other family apart from you, two daughters aged ... ?

IN: Two daughters yes, 21 and 23.

Lj<': And what's their view about this?

TN: They are totally behind him, totally.

LF: Friends, he's got friends as weE?

IN: To be honest, seriously I don't know anyone that thinks we are doi:lg the wrong thing. People that know him, everyone that knows the kind of person he was fully understands why he is doing this.

j-~F: Questions. Any other questions ... ?

Dr Stephen Duckworth (SD): Is he in a position to sit up at all or is he in bed all the time?

IN: No, no he gets up into his chair and that, yes.

SD: You say he doesn't go out much. Is that at his insistence or has there been some encouragement? To go abroad on holiday, to enjoy the sunshine?

21

IN: No, I've got a car and eveIJthing to take him out. I think I have had it for two and half years and he has been out in it three times and that's just to go to the dentist. That's the only time he ever goes out.

SD: Has he had any input from maybe a cognitive behavioural therapist or some other form of input to enable him to envisage a different future for himself other that which be is currently talking about?

IN: Yes, he was in hospital in Bath for over a year. We used to take him out into Bath sometimes for a walk around, but he didn't enjoy it. He didn't enjoy being pushed around, he doesn't even want to leave his room anymore. I can barely even get him to go into the sitting room if anyone visits but if people visit he won't Sf;e them anyway, he won't see anyone. He'll say hello and that's it dnd then they have to go away.

SD: Probably wrong of me to do so, I am reflecting on mv own experiences of trying to remain inside my home when my friends came round and not wanting to go out because I'd never seen ... this is 28-29 years ago .. ~ I'd never seen anybody like me out there and people like me didn't belong out there, but as soon as I started doing it and became one of the first of those people out there I started to see more people. I just wonder whether he's got the potential capacity to change?

IN: I don't thirik so. I think, to be honest, if he could speak things would be completely different, that's the real bug-bear, the hv::k of his being able to communicate with people. He says that he can't sit in a room fun of people listening to them jabbering away and he can't interrupt. He was always someone who loved the sound of his own voice, he loved nothing more than to have a good argument with someone or you know debate as he would call it. For him it is sheer agony for him to sit and listen to people talking, I mean he would love dearly to be here today to argue his point.

22

BM: It's that lack of communication that you feel is the most difficult thing for him to bear rather than the psychical dependence?

IN: I think that's the worst. It is everything really but I think ifhe could speak then maybe things might be different. He just gets ... sorry .. .I can't describe how frustrated he gets when he is trying to tell someone something, even jf it is one of the carers to move a leg or move a foot or something and he can't make them understand. He just, he looks like he is going to explode at any moment. I'll go and slam a door or throw something or scream or swear you know; he can't do any of these things. He just gets so frustrated with people and the more" frustrated he gets the worse it is because then you can't understand even more what he wants because he cries and his eyes go aU funny and everything so yon can't see what he is looking at.

Dame Denise Platt (DP): You mentioned carers. What sort of care and support do you get?

IN: I have someone in the mornings, a couple in the mornings to get him up and shower him and evel)thmg and one in the afterlloon to move him from his wheel chair to his arm chair and then we have one overnight.

DP: Is that sufficient?

.IN: Yes.

DP: And have those carers been vvith yOU for a while? Are they the r,) same carers.

IN : Well we've just actually changed to a new care agency but they are quite good.

DP: So adequate?

IN: Yes.

LF: And your home; is it adapted to meet the particular needs that he's got?

23

IN: Yes we have a room built on for him.

Professor Sam Ahmedzai (SA): I am a little bit, not confused, I am interested in his state of mind. You say on the one hand he is clearly expressing no desire or will to live but he is writing his memoirs. What's motivating him to write his memoirs?

IN: I suppose he just want to leave his, something behind.

SA: vVhat kind of message is he giving? Is it going to be inspirational or is going to be saying don't do this or. .. ?

IN: No, no, it's nothing to do with this part of his life, I mean it's not a Diving Bell and Butterfly type book, it's about our life overseas, and all the people we have met and all the places we've been. It will be funny you know, semi-factual, I suspect there'll be a few stories in there that aren't really true. He is really enjoying doing it, he's has got a real way with words, I mean, he's got a tremendous sense of humour, but it's just very, very difficult to find that anyr.lore, the real Tony is so deep inside now.

SA: But that in itself is something that is keeping him going at the moment?

IN: Yes it is.

SA: And who is to say that when he finishes that book he won't want to start aEother?

IN: I don't know.

SA: Another question. I think I know the answer to this but, has he actually had any contact with palliative care? Has there been any palliative care input into his condition, into his medical or nursing care?

IN: What do you mean palliative care exactly?

Prof SA: That's a good question, but, I think you read out from him a question about palliative care, so he must have some idea. But

24

let's just say specialised services for the care of dying people; sort of people that work in hospices for example.

IN: He's not dying! He is not dying! This is the problem, you know he is not dying, he would wish to have cancer or something but he is not dying. He could outlive us all.

SA: So he would say and you would say that palliative care isn't an answer for his condition?

IN: Well no. He doesn't need pal1iative care. He could live for another 20-25 years like this.

LF: Thank you so much for coming, you have brilliantly exp.essed what I am sure you wanted to express, he has expressed it himself in the documents which he has produced which we will all consider very, very carefully. It's a real assistance to the commission to hear from you and through you from your husband. So we really appreciate you coming.

IN: Thank you for having me

LF: Thank you for coming

BM: Will you say thank yot. to him?

IN: Yes I wilL

LF: I went down to Jane's house for a Radio Five Live broadcast which lasted over a two hour period, which the nation heard, Tony's view from there, he did express himself very, very clearly there, the views that you are expressing to us today exactly reflects the views that he was expressing at the time. So thank you very much. And could you thank Tony for us.

Saimo Chahal (SC): Did you want to hear any information about his legal case, because I can circulate a paper or I can tell you about it?

25

LF: Yes that would be interesting, is the legal case trying to ensure that there will be no persecution subject to any assistance with suicide, is that the view of the case?

sc: No. In Tony's case we are challenging the law of murder, saying that there should be a review of the law of murder and that mercy killing should be dealt with in a separate way, I mean I have got a very short statement if you want to hear about it?

LF: Yes do, that would be interesting.

SC: So, I am acting for Tony in his legal case, which is a proposed judicial review claim against the secretary of state for justice, and that claim arises because Tony wants to end his life at a moment of his own choosing at home with his family around him as you heard from Jane.

But because there is no law of assisted dying in this country as things stand, there are significant impediments to him being able to do so in a safe and dignified manner and ~ht' penalties for anyone helping him are grave. So the setting up of this commission comef at a very timely moment for Tony.

So Tony's case is about bringing legal proceedings that will clarify when it is lawful for him to end his life in circumstances where he has made a competent and rational decision to end his own life, but by virtue of his almost total physical disability he is unable to do so even with assistance other than by refusing foods and liquids and thereby dying of dehydration. And this is a .method he has rejected as one that is painful and distressing for his family to witness and one that is lacking in regard for his dignity, which he wishes to maintain.

So far as the current law stands, Tony knows that any person who assists him by taking active steps to end his life \\Till be prosecuted for the offence of murder, regardless of his consent. The DPP has confirmed that he does not have any meaningful discretion as to whether to prosecute, at least in so far as the "victim's" consent is concerned and so that throws into stark relief how the law of murder constitutes an absolute bar to the exercise of Tony's right to

26

choose when and how to end his life, giving rise we argue to a disproportionate interference with his Article 8 rights which is not justified under Article 8(2.). And those are the rights to personal autonomy and ability to make decisions about the closing moments of his life.

The current state of the law on murder also highlights vividly the situation seen from Jane's perspective, who if she actively helps her husband because she loves him and wants to help him, when he asks her to, she will be liable to be charged with murder, with all the stigma and severity of the penalty that that offence carries, namely a mandatory life sentence.

Tony's legal challenge is to the blanket nature of tl"Ie prohibition of killing in the law of murder, in so far as it applies to cases of genuine consensual killing. What is being requested in Tony's case is a declaration under article eight of the Human Rights Act that the law, as currently framed, is incompatible with Tony's Convention rights.

It is accepted that it shou:d be for Parliament, after a suitable review of the law, to determine how the law is to be framed. But it is open to the Court to grant :1 declaration that the current law faih to strike a proportionate balance between Tony's Article 8 r~ghts and the obligation to protect the Article 2 rights (the right to life of other people). It will then be for Parliament to determine how that balance should be struck.

It's accepted in Tony's CAse there is no consensus that consensual killing should be legalized as yet, but a few countries permit consensual killings. The practice is lawful, and regulated, in places like the Netherlands, Belgium, Luxembourg, Oregon. In Japan it is lawful provided a number of conditions are met, set down by caselaw. The direction of travel is towards recognising the right of autonomy over end of life decisions (as was recognised in Debbie Purdy's case) and therefore towards the legalisation of consensual killings. However it is not necessary in Tony's case to establish that Article 8 requires consensual killing to be legalised, and that is not his case. His case is that the current law disproportionately affects

27

his right to personal autonomy as somebody who is too physically disabled to end his own life. If that is right then the Court may make a suitable declaration. It ,.vill then be a matter for Parliament to change the law. In order to succeed in his claim Tony needs to demonstrate that some change to the law is required, even if it is a change that does not go as far as he would like.

sc: The state we are at is we are waiting to hear from the Legal Services Commission as to whether public funding has been granted for the next stage which is to issue judicial review proceedings.

LF: You are going to bring judicial review proceedings seeking dedaration from the English courts that our law infringes on Tony's Article 8 rights. You don't have to say what the right law should be all you need to say is that it disproportionately prejudices Tony's right to choose the manner of his death.

SC: Yes, so we are invoking Article 8 and 14 because of the discrimination element.

LF: Yes, OK, and do you not need a decision to appeal against or is it sufficient for you to have the law in that state?

SC: We have got a decision from the Secretary of State for Ju~tice saYIng ...

LF: ... who says he won't change the law?

SC: He won't change the law and it's not disproportionate, so that gives rise to the challenge that we seek to make.

LF: Have you got a note, will you leave us a copy? OK thank you very much, for all you have done today.

SC: Thank you.

28

29

of Scheme for Death dated December 7, 2010

A SCHEME FOR ASSISTED DEATH

The purpose of this document is to show that there is a credible and practical alternative to prohibition, the present situation. Criticism is welcomed but it is expected that the critic will offer a solution to the problem that has been identified. Scheme requirements are given in commentary in

30

A SCHEME FOR ASSISTED DEATH

Death:

Tony Nicklinson 07 December 2010

- End-

2

v;ant carry 01" an as contract

31

Copy of a \vritten statement authored in M 1'. N icklinson' s behal f by his solicitor, Saimo Chahal, titled "Tony Nicklinson's legal case"

This is Exhibit E referred to in the avit of Anthony Nicklinson, sworn

ore me on August -22-, 201 .

32

The Commission on L,",,,sisted Dying 14.12.2010

Tony Nicklinson's legal case

L I am Tony Nicklinson's solicitor and act for Tony Nicklinson in connection with d

proposed ,Judicial Review claim against the Secretary of State for Justice. The claim

arises because Tony Nicklinson wishes to end his at a moment of his own choosing,

at home with his family around him. But, because there is no law of assisted dying

in this country, there are significant impediments to him being able to do this in a

safe and dignified manner and the penalties for anyone helping him are grave. The

setting up of this Commission therefore comes at a very timely moment for Tony.

2. Tony Nicklinson's case will seek to bring legal proceedings that win clarify when it is

lawful for him to end his life in circumstances whae he has made a competent and

rational decision to end his own life but, by virtue of his almost total physical

disability, he is unable to do so, even with assistance, other than by refusing all food

and liquids and thereby dying of dehydration. This method has been rejected as one

that is painful for him, distressing for his family to vrltress and lacking in regard for

his dignity which he wishes to maintain.

3. So far as the current law stands, Tony knows that any person who assists him by

taking active steps to end his life will be prosecuted for the offence of murder,

regardless of his consent. The DPP has confirmed that he does not have any

meaningful discretion as to whether to prosecute, at least in so far as the 'victim's'

consent is concerned and this throws into stalk relict how the law of murder

constitutes an absolute bar to the exercise of Tony's right to choose when and how to

end his life, giving rise we argue to a disproportiona. interference with his Article

8(1) rights which is not justified under Article 8(2.).

4. The current state of the law on murder also highlights vividly the situation seen from

Jane's perspective, who if she assists her husband ;lecause she loves him and wants

to help him, when he asks her to, she will be liable to a charge of murder. with all the

stigma and severity of the penalty that that offence carries, namely a mandatOlY life

sentence.

33

5. Tony's legal challenge is to the blanket nature of the prohibition of killing in the law

of murder, in so far as it applies to cases of genuine consensual killing. What is

being requested in Tony's case is a Declaration under s .8 HRA that the law, as

currently framed, is incompatible with Tony Nicklinson's Convention rights under

Article 8. Also, that article 14 is engaged as the law discriminates against him as a

person who is physically disabled and thus cannot take his own life without active

assistance from another

6. It is accepted that it should be for Parliament, after a suitable review of the law,

to determine how the law is to be framed. But it is open to the Court to grant a

declaration that the current law fails to strike a proportionate balance between

the Article 8 rights of individuals like Tony and its obligation to protect the

Article 2 rights (the right to life and the protection of the vulnerable) It will then

be for Parliament to determine how the balance should be struck.

7. It is~accepted there is no consensus that consen;,;uai killing should be legalized as

yet, but a few countries pt:rmit consensual killings (,voluntary active euthanaEia').

The practice is lawful, and reglllated, in the l\Jetherlands, Belgium, Luxembonrg

and Oregon, USA. In Japan it i:::. lawful prmided a number of conditions are met,

set down by ease-law. The dip~ction of travel is towards recognizing the right of

autonomy over end of life decisions and therefore towards the legalization of

consensual killings. However it is not necessary fOr" Tony Nieklinson tu establish

that Article 8 requires consensual killing to be legalized, and that is not his ca,:e.

His case is that the current law where consensual killing is absolutely

prohibited by the law of murder (for which only one sentence life imprisonment

is available) disproportionately affects his Article 8 rights. If that is right then

the Court may make a suitable dedaratlOn. It will then be a matter for Parliament

to change the law. The final outcome may be the legalization of consensual

killings in circumstances such as Tony's but the changes may not go that far: In

order to sllcceed on his claim he need only demonstrate that some change to the

law is required, even a change that does not go as far as he would like.

Saimo Chahal, Partner, Bindmans LLP 14·12.2010

34

Statement of: Anthony Nicklinson Exhibit no: 0

Date: 14th July 2010

IN THE HIGH COURT OF JUSTICE COl 12010 ADMINISTRATIVE COURT IN THE MATTER OF AN APPLICATION FOR PERMISSION FOR JUDICIAL REVIEW OF A DECISION OF THE DPP DATED 18 MARCH 2010

BETWEEN: R

(ANTHONY NICKLINSON)

Claiman.t

v.

DIRECTOR OF PUBLIC PROSECUTIONS

Defendant

AND

MINISTRY OF JUSTICE (1)

First Interested PErt'{

JANE NICKUNSON (2)

Second Interested Party

WITNESS STATEMENT OF ANTHONY NICKLINSON

I, Anthony Nicklinson, of 26 Thames Crescent, Melksham SN12 8EH, make oath and

say as follows:

1. ! have read the statement of Jane Nickl1nson and agree with its contents.

refer you to that statement for the factual and background information.

48

35

2. Where to I am a 56 year old man who suffered a catastrophic stroke in

June 2005 whilst 011 a business trip to Athens, Greece. It left me paralizcd

below the neck and unable to speak. I need help in almost every aspect of my

life. I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can

only eat if I am fed like a baby only I won't grow out of it, unlike the baby. I

have no privacy or dignity left. I am washed, dressed and put to bed by carers

who are, after all, still strangers. You try defecating to order whilst suspended

in a sling over a commode and see how you on.

3. I am fed up with my life and don't want to spend the next 20 years or so like

this. Am I grateful that the Athens doctors saved my life? No, I am not. If I had

my time again, and knew then what I know now, I would not have called the

ambulance but let nature take its course. I was given no choice a<; to whether

or not I wanted to be saved. However, r do concede that it was a fair

assumption given that I had asked for the ambulance and associated medical

staff.

4. What I object to is having my right to choose taken away from me after: had

been saved. It seems to me that if my right to choose life or death at the lime

of initial crisis is reasonably taken away it is only fair to have the rjght to

choose back when one gets over the initial crisis and have tirr:e to reflect..

5. I'm not depressed so do not need cOl'.nseling. I have had llmost five years to

think about my future and it does not took good. I have locked-in syndrome i'lnd

I can expect no cure or improvement in my condition as my musdes and joints

seize up through lack of use. Indeed, I can expect to dribble my way into old

age. If I am lucky I will acquire a life-threatening illness such as cancer so thiJ.t !

can refuse treatment and say no to those who would keep me alive against roy

will. Unfortunately, I don't smoke or drink any more - have you ever tasted

thickened beer? No? Then perhaps you should - so tobacco or alcohol inrluced

diseases are out and since I rarely go outside the likelihood of me catching a

fatal disease is low.

6. Letting nature take its course can, I admit, take a long time or not work at an

but what choice do ! have since do·gaoders - those people who want assistecl

SUicide to remain illegal·· took away my right to decide my own fate, a right

36

49

which, incidentally, they have. Why deny me and others who need help? Is it

I'm disabled?

7. Perhaps I somehow can't be trusted to make the 'right' decision? Have I

suddenly lost my intellectual ability? .. if that was really a criterion, then

probably half the country would be ruled out. Or is it something else? I would

like to see a do-gooder explain that to me. The flaw in their argument is the

assumption that we aU want to live whatever the cost in terms of quality of life

when this is dearly not the case. I want to make that choice for myself. What

prevents me is the fact that I am too disabled to take my won life and unlike an

able bodied person I need help to die.

8. By all means protect the vulnerable (by vulnerable I mean those who cannot

make decisions for themselves,) just don't include me. I am not vulnerable, I

don't need help or protection from death or those who would help me .. if the

legal consequences were not so huge- life imprisonrr.ent.

9. I am asking for my right to choose when and hovi to die 1:0 be resper.ted.

know that many people feel that they will have fai!2d if someone like me takes

his own tife and that life is sacred at all costs. ; do not agree with that view.

Surely the right and decent thing to do would to empower people so that

they can make the choir:e for themselves. Also, why should I be denied a right

the right to die of my own choosirlg when able bodied people haVe that right

and only my disability prevents me from exerCising that right. In the interests

of equality surely the state should help to equalise the position between

someone like me and some one who is not disabled?

10. I shalt miss my family and friends when I go bu~ r have to die some time.

Hopefully they will eventually get over it. They know what my views are and I

know that they would support me in them.

11. I have heard it said that a compassionate society would not 3.How assisted

suicide but I take the contrary point of view. Surety a compassionate society is

one which, as far as possible) accommodates all views as it dearly can in this

case if the pioneering work in Oregon and Holland is to be believed. The

vulnerable seem adequately protected and there is no evidencE as far as ! know

37

50

of people being killed against their witt, so where is the 'slippery slope' down

which society wm descend if we cease discriminating against those who need

help to

12. I don't want to die in a foreign country where assisted suicide is legal- even if

getting there were realistic for me. I want to end my days in the comfort of my

own home - is that too much to ask? Why can't I? If you really have my

interests at heart, and the interests of thousands of others who would take

advantage of a change in the law, you would help me to restore choice. If that

were the case, I may not exercise my right immediately, just having the same

right as those who are able bodied may be sufficient. I would know that I could

have help to die when I am ready. That would be a great comfort· knowing

that! can be released when it gets too much for me.

13. Governments of all complexions speak Jbout not discriminating against

minorities, the disabled and so on. Welt, I am being discriminated against

because I am totally physically disabled. I am not equal under the law and!

don't have the same choices as someone who is not. Is that fair?

14. So, do you want grotesquely swollen feet brought about by the inabHit:1 to

walk? Experience the frustration of being unable to speak? Does your heart race

to the sound of the hoist as it moves you between bed and chair? How about

sitting wit'lout moving for six hours because you are paralysed? Do you crave a

life with aU the inconvenience of being a cripple without the benefits of being

normal? Well, coming to an NHS hospital near you is a stroke unit where staff

trained in 21 st centlllY medicine prevent you from dying so that YOll can live a

life totally devoid of quality. Fancy it? No? Then kindly explain why the helL I

should.

15. If you have any sympathy for me you will agree that the law needs to be

changed so that people like me can die with dignity. So that people like me

don't have to worry about a loved one being charged with murder for helping to

end my life with my consent when I choose that the quality of my life is no

longer worth living.

51

38

16. is now produced and shown to me marked exhibit ANi correspondence

sent by my solicitors to the DPP in the form of a letter before claim and replies

together with a letter before claim to the Secretary of State for Justice

together with replies.

I make this statement to the best of my knowledge and belief.

Signed on behalf of Tony Nicklinsoll in his presence and in the presence of a

witness by

&;!~ ...... Dated 14th July 2010

Signature witnessed by

Name .. Q;J,pQ.\-.Q.~c)C ... : .................. . Address: 'Ob l--he ~ 6t\~\:-

~QZ)b.A6v\ UQA) \~. 0\\)\0 l:t-f'e. occupation:

Dated 14th July 2010

39

52

No. Sl 12688 Vancouver Registry

IN THE SUPREME COURT OF BRITISH COLUMBIA ----

BETWEEN:

AND:

AND:

LbE CAl{ I bR ET AL.

PLAINTIFFS


DEFENDANT'S

ATTORNEY GENERAL OF BRITiSH COLUMBIA

A.FFIDAVIT

A.rvay Finlay Barristers

1350 - 355 Buriard Street Va,Kouver BC V6C 2G8

Phone: 604.68').4421 Fax: 604.687.1941 File No. 2734-00 I

INTERVENOR

This is the 1 'I affidavit of Ian F. Petrie in this case

and it was made on ~M Aug 2011

No. SJ 12688 Vancouver Registry


BETWEEN:

AND:

AND:


PLAINTIFFS


DEFENDANT


INTERVENOR

AFFIDAVIT

I, IAN F. PETRIE, retired First Aide, Craft Services Provider, of 2350 355 Burrard Street, in

the City of Vancouver, Province of British Columbia, SWEAR (OR AFFIRM) THAT:

1. I have amyotrophic lateral sclerosis ("ALS") and as such have personal knowledge of the

facts and matters hereinafter deposed to, save and except where same are stated to be made on

information and belief, and where so stated, I verily believe them to be true.

2. I am 68 yrs. old. I worked as a First Aide, Craft Services provider in Vancouver in the

movie industry before I retired. I have been married to my wife, Marilyn Sanford, for 30years.

3. I first started to experience the symptoms of ALS around 2003. At the time, I was very

fit, looked after my health, worked out, hiked, sailed and cycled. My wife and I were very active

people. We enjoyed a live aboard lifestyle in Vancouver - we lived on sailboat in a marina in

Vancouver's False Creek. We owned island property which we were developing when the

disease hit. I developed 'drop' foot and undertook tests to assess what was wrong. I also

4. started to experience a weak left leg. Soon after, the muscle weakness spread to my right

leg. I received many different diagnoses over a period of about six years. I finally received a

confirmed diagnosis of ALS in April of2009.

5. After it became difficult for me to walk, I started to use a Segway, which is a

two-wheeled, self-balancing electric vehicle, for about a year and then I started using a walker. I

kept falling down suddenly and was relieved when I switched to using a wheelchair, which

provided greater mobility and safety.

6. At present, I have 50% lung capacity. I nearly died from carbon dioxide poisoning due to

sleep apnea before acquiring a bi-Ievel positive airway pressure ("BiPAP") machine. It is an

apparatus that helps me get more air into my lungs and assists with my night breathing.

7. My voice is now very soft and it has very little endurance. I struggle with mucus build

up and do not have the lung capacity to do basic functions like coughing or sneezing without

great effort. I can only eat foods which are well lubricated, otherwise I can choke easily.

8. My peristaltic intestinal muscles have weakened and I have great difficulty with

defecation. My back and neck muscles have now weakened and I have to support myself in a

chair with my arms. I also wear a neck brace. Eating with a knife and fork and typing on a

keyboard are very difficult.

9. My hands and arms are getting weaker. I use my arms for transfer from my seat to my

wheelchair, to the toilet and to bed. I cannot bathe myself and require someone to prepare my

meals. I cannot perform even the most basic household duties. I need an electric chair for

outings. When my arms weaken I will be totally dependent.

10. I have long periods of low energy and reqUIre a hospital bed with a special ROHO

cushioning pad that distributes my weight to avoid sores. I do not move for long periods in my

chair and hospital bed, which has resulted in pain and discomfort. Because of this my sleep is

erratic.

11. I now live in an apartment in the Okanagan as the dry weather is more comfortable for

me. Because my wife owns a business, she now divides her time between here and Vancouver.

12. At present I only need one machine to keep me alive and help me with my breathing - the

BiP AP machine. It is very unobtrusive and does not negatively affect my quality of life.

However, I know that when my lung capacity further diminishes, I will require another breathing

machine. When I lose my arm strength, which appears to be likely, I will need full time care. In

addition, should my bulbar muscles weaken I will not be able to talk or eat. I will then require a

feeding tube.

13. My quality of life is very important to me. I do not want to have life at any cost. Losing

my mobility and bulbar failure would be a significant blow to my quality oflife. I do not want to

be dependent or supported by any more machines. But without further interventions it is very

likely I will starve to death as my swallowing capacity diminishes. My only other option, when

it becomes impossible to undertake basic life functions, is to go off the BiP AP machine. Either

option will be extremely stressful to my wife and extended family. We have already undergone

a very stressful period as we have faced and adapted to this progressive disease. We know we

will never find stability or anything close to 'normalcy' in our lives. The knowledge of my fate

with this disease, together with the constant reminder that I will continue to deteriorate, with no

assurance that I will be able to have a dignified and peaceful death, is harsh and very disruptive

to both me and my wife. It is an emotional minefield for us both, as my body slowly dies leaving

me incrementally trapped and ultimately utterly dependent.

14. When my quality of life diminishes I would prefer to have the assistance of a physician to

help me end my life. Knowing that this option was available would take considerable pressure

off of me and my wife. I do not take this decision lightly. I cannot truthfully say when this point

will arrive; I know it will. Without this option, my wife and I have discussed avenues currently

available to me. We have repeatedly asked for advice and counsel from medical practitioners,

including our doctor, community nurse and palliative nurse, and we are told that we are on our

own; there is nothing that can be done. This is stark and frightening.

15. This is my life and body and I want the right to die with dignity, supported by my family.

A physician-assisted death would be compassionate, legal, painless and dignified. The

alternatives seem barbaric and cruel. There is also the fear and anxiety associated with taking

my own life by other means. I am concerned about having a protracted and painful death should

I do nothing, while on the other hand I dread the thought of suicide with the complexities and

legal dilemma that will be involved if I have my wife assist me. We both face this reality, that

we have only two terrible and imperfect options, with a sense of horror and loathing.

16. I have enormous challenges coping with this disease and its impact on the lives of my

family. Although I am struggling and my quality of life is diminished, I am measured and

circumspect about physician-assisted dying. Were it made legal tomorrow, I would not be ready

to die. However, I would immediately seek counsel and feel considerable solace in knowing I

have resources and alternatives available to me.

17. I do not take the means or timing of my death lightly. If the law changes to allow

physician assisted dying, it would still remain a difficult decision for me. The reality of my

predicament would not radically change. However, it would ease my burden because it would

make accessible to me professionals who would be free to counsel and help me assess my

options, without fear or misunderstanding. It would help both my wife and me move on from the

heavy weight that hangs over us both as I grapple with not knowing how I might self determine,

or alternatively how protracted and untenable a 'natural' death might be. As a terminally ill

person, this is a very complex dilemma for me. What having the right to physician assisted

dying would do, more than anything, is lift the isolation and burden I feel as a dying person.

There would be a community of caring competent people who could walk alongside me and

provide a humane helping hand should that be the most likely means of ensuring a dignified

death and quality of life.

SWORN (OR AFFIRMED) BEFORE ME at Oliver, British Columbia, on 2£ Aug 2011

-·-7 ...

~~~~=?~d' A C(}ffifl11ssioner for taking Affidavits for British Columbia

,. BRENT T," RENTTERS BaniSIt!r & Solicilor

FARRIS, VAUGHAN,WILLS l MURPHY UP 800 -1708 Dolphin Avenue

KcloWDa, Be VI Y 9S4

) ) ) ) ) ) )

IAN F. PETRIE



BETWEEN:

AND:

AND:

LEE CARTER ET AL.

PLAINTIFFS


DEFENDANTS


AFFIDAVIT



Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

BETWEEN:

AND:

AND:

This is the 1 st affidavit . of Elayne Shapr~his case

and It was made on~'Aug 2011

No. S 112688 Vancouver Registry



PLAINTIFFS


DEFENDANT

A TTORNEY GENERAL OF BRITISH COLUMBIA

INTERVENOR

AFFIDAVIT

1, ELAYNE SHAPRA Y, housewife, of 1596 W. 14th Avenue, in the City of Vancouver,

Province of British Columbia, SWEAR (OR AFFIRM) THAT:

I. I have personal knowledge of the facts and matters hereinafter deposed to, save and



2. I am presently 64 years of age. I was born on September 30,1946.

3. I obtained a nursing diploma from the Jewish General Hospital in Montreal, Quebec in

1967. I have subsequently worked as a nurse on a child psychiatry ward and as a nurse in a

paediatrician's office.

02-Sep-11

Vancouver

- 2-

4. I am married. My husband is a member of the British Columbia bar. I am a mother of

two adult children and a grandmother of four grandchildren.

5. I have volunteered for many community organizations in a variety of positions including

as an intake worker at Family Services of Greater Vancouver, 15 years at the University of

British Columbia Women's Resource Centre and approximately 15 years as a palliative care

volunteer at the Vancouver General Hospital.

6. I have had the opportunity during my 15 years as a palliative care volunteer to be present

with many people who were terminally ill. While some deaths were peaceful and calm, too

many were, as I observed, excruciatingly heartbreaking, torturous to the patient and for their

friends and family who watched their loved ones, cold and clammy and rasping for breath, beg

for an end to their own suffering even though their pain was controlled.

7. I have multiple sclerosis CMS"). I make this affidavit in order to assist the court to

understand not only how MS affects my life today and will likely affect my life in the future but

also to explain how the current state of the law that prohibits physician-assisted dying presently

diminishes the quality of my life on a daily basis.

8. I was definitively diagnosed with relapsing remitting MS in approximately 1984,

however in retrospect, I probably had the disease much earlier. Since that time, my MS has

progressed from relapsing remitting to secondary progressive MS. I have consulted with and

have been followed by some of the leading professionals in the field of MS about my disease. I

have also been to the Mayo Clinic where I sought advice on any potential treatment for my MS.

The physicians at the Mayo Clinic confirmed what my BC physicians had told me, namely that

there was not any treatment that they could offer me to slow the progression of my disease.

9. Through my discussions with my physicians and my own research, I have come to have

an understanding of how MS progresses as a disease. MS is not a terminal disease but rather is

an interminable disease. MS is an incurable, unpredictable and progressive illness. The most

common manifestations of the disease are a combination of fatigue, mobility and balance

problems, weakening of the limbs to the point they become spastic and non functional, loss of

bowel and bladder control, pain, cognitive dysfunction and depression, speech and breathing

- 3

difficulties. Each person's course of the disease is different. While MS does not itself cause

death the possible outcome for someone with progressive MS can be total paralysis as well as the

inability to eat or speak.

10. For many years my disease did not impact severely on my daily life. However, since

approximately five years ago, the quality of my daily life and my ability to live independently

have been severely compromised. Approximately five years ago I realized that I could no longer

manage to live in my house because I could not manage the stairs and I was at severe risk of

falling at any time. My husband and I moved to an apartment.

I 1. My condition has deteriorated rather quickly in the past four years. I am presently

confined to a wheelchair. I am unable to properly use my left leg and my ability to use my left

hand is rapidly deteriorating. I presently require full-time assistance to help me with the

activities of daily living including preparing my food, dressing and bathing and transferring from

my wheelchair. It is very difficult for me to find comfort in any position for any period of time

whether during the day or the night when I should be sleeping. Simple tasks are a struggle and

exhaust me. I cannot walk up or down even a single stair without two people assisting me and

without going through extreme stress, anxiety and exhaustion. Even the simple act of getting

into bed is an exhausting ordeal and requires assistance. Getting out of bed is even more

difficult. Turning over in bed is a similar ordeal. I live with constant fatigue.

12. These severe disabilities impact on my life in numerous ways. My disease severely

compromises my autonomy, my independence, my privacy and my self-esteem.

13. My ability to go places and do things with my family presently is seriously restricted by

my fatigue, the physical barriers that people without disabilities would be unaware of and my

constant need to be proximate to an accessible bathroom. Nor can I devote myself to my

grandchildren in the manner that my peers who do not suffer from my disease do as a matter of

course. I have an 86-year-old mother who lives in Montreal. I am deprived of the opportunity or

ability to visit her or care for her if and when she is ill. I am essentially a prisoner in my own

body, sentenced by my disease to spend the rest of my life either in an uncomfortable chair or an

equally uncomfortable bed, dependant upon an attendant to answer my calls for assistance.

- 4-

14. While my quality of life today has been severely compromised, I am not contemplating

ending my life at this time. However, in addition, my life is further compromised on a daily

basis by the terrifying fears that the current state of Canadian law will deprive me of the

possibility of a physician-assisted death if and when I should become desirous of that service as a

means to end my suffering.

15. This is not an abstract concern. The idea that if I wait too long to be able to end my own

life, I will be unable to do so if and when I wish to, is a stressful, anxiety-provoking thought that

I live with daily. It constantly and dramatically affects my ability to actually and fully enjoy

whatever quality of life I am able to achieve now or will be able to achieve in the future.

16. I understand that suicide is no longer a crime in Canada. The irony of the current

situation as I experience it is that an able-bodied person can commit suicide in a lawful manner

but somebody such as myself, who is unable by reason of their disability to do so, cannot. The

means available to me to terminate my life unassisted at this time, if I was so inclined, are

extremely limited and would likely involve violent, painful or personally terrifying outcomes. I

consider the option of taking my own life by conventional "suicide" means, assuming that I was

otherwise physically and emotionally able to do so, not only to be dangerous and inhumane, but

also likely to be extremely traumatic to my family and my friends.

17. I live in dread of the day when I will have been robbed of all meaningful quality of life

by the progression of my disease. I fear that I will not have the option that others have of ending

ones' own life. I wish to have the choice of a dignified, physician-assisted termination of my life

at the time of my choosing rather than being telTified daily about how I may end up simply

because at a future date there would be no one able to legally help me.

18. The current state of the law deprives me of the freedom to choose how and when I would

end my life. The current law may cause me to initiate a premature termination of my life simply

because if I wait until I am ready to do so, I may be unable to do so, in any humane fashion,

without asking my loved ones to put themselves at legal risk.

19. I have discussed my views with members of my family, my closest friends, my rabbi, and

physicians whose integrity and professionalism I respect. All of them indicated to me that they

- 5 -

would support my right to have the choice of when to end my life in a dignified manner that is

not traumatic for others, such as a violent suicide, as long as I am able to give an informed

consent. None of these persons has attempted to influence me to exercise that choice one way or

the other.

20. I also understand that the historical justification of restrictions on consensual,

physician-assisted suicide is to protect persons who are vulnerable to undue influence or

manipulation. I have many friends in the medical community and I cannot imagine that a

qualified physician would be willing to be a party to assisting the death of someone who did not

choose assisted suicide of their own free and voluntary will. I, myself, have absolutely no fear or

concerns that I would not be able to make a decision for myself of my own free choice.

21. I wish to address the issue of whether the ability to obtain physician directed palliative

pain relief is relevant to my situation. [t is not. While MS can cause extreme pain, conventional

pain treatment that might be provided to mitigate pain in end-of-life care for sufferers of other

diseases such as cancers or ALS may be inapplicable to MS victims whose natural end of life

may be years away but whose suffering due to a variety of symptoms continues every day. The

suffering I and others with progressive, degenerative illnesses such as MS endure, is both

psychological and social, involving a loss of autonomy, independence, privacy and ability to do

the things that give joy to ones life. These losses cannot be meaningfully addressed by any form

of palliative care.

22. The only way to mitigate the suffering that 1, as an MS victim, will continue to

experience and have attempted to convey in the words of this affidavit is to grant me the

assurance that I will one day have the option to request that a physician lawfully assist me to

exercise an autonomous choice I may wish to make with respect to my own existence.

SWORN (OR AJ;+FIi~.~) BEFORE ME J/riti' lumbia, on

HOWARD SHAPAAY, Q.C. SHAPRAY CRAMER

BARRISTERS & SOLICITORS 670 - 999 CANADA PlACE

VANCOUVER, B.C. V6C 3E1

) ) ) ) ) )

)

No. SI12688 Vancouver Registry


BETWEEN:


AND:

AND:

PLAINTIFFS


DEFENDANTS


AFFIDAVIT



Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

This is the) st affidavit of Pieter Maarten Zwart in this case and it was made on 2.J; Aug 2011

No. S 112688 Vancouver Registry

IN THE SUPREME COURT OF BRITISH COLlJMBIA

BETWEEN:

AND:

AND:


PLAINTIFFS


DEFENDANT


INTERVENOR

AFFIDAVIT

I, PIETER MAARTEN ZWART, retired construction worker, of36167 Prairieview Drive in the

City of Abbotsford, Province of British Columbia, SWEAR (OR AFFIRM) THAT:

1. I have personal knowledge of the facts and matters hereinafter deposed to, save and

except where same are stated to be made on information and belie1~ and where so stated, I verily


2. I am 63 years old. I was born in Holland in April of 1948, and moved to Canada with my

wi fe in 1973. I have been living in the Vancouver area since 1973 with a 4 year stretch living in

the Netherlands in 1984-1988.

3. I have been married to my wife, Helena Zwart, for 38 years. She works as a Warehouse

Manager. We have two children, ages 34 and 35 and two beautiful grandchildren.

- 2 -

4. My career was in construction. I built pre-engineered, prefabricated buildings, which are

buildings that are manufactured in sections in a plant and then assembled on site. I worked

mainly in Vancouver but I did jobs all over British Columbia and the Yukon. I have been on

Disability Assistance since I left my job in 1998.

Discovering I had Huntington's Disease

5. Huntington's disease ("HD") is a genetic disorder that is passed down through families.

Everyone who has the gene will eventually develop the illness, which causes nerve cells in the

brain to waste away. This progressive degeneration of brain cells results in a variety of

symptoms, including uncontrollable movements, behavioural changes, as well as cognitive and

psychiatric disorders. There is no cure for this disease.

6. I chose to get tested for the gene for HD in 1993, which was the same year my mother

died of HD. I knew there was no cure, but I wanted to know what the future held for me and my

family.

7. Learning that I had the gene for HD did not have an immediate impact on my life. I was

asymptomatic in 1993, and I knew it might be years before I actually developed the disease.

Indeed, the progression of my symptoms was gradual and I was able to work for five years

following the discovery that I had the gene.

8. Once I discovered that I had the HD gene, I began going to the Centre for Huntington's

Disease at the University of British Columbia (the "Clinic") for annual check-ups. The Clinic's

staff includes a geneticist, two neurologists, a psychiatrist, a neuropsychiatrist, and a genetic

counsellor. My annual appointments involved a variety of assessments to determine if the

disease's onset had begun.

9. Over the years, the Clinic has provided me with information about clinical trials. I have

participated in a number of trials because I want to help find a cure for this disease. I

participated in a ttial that researched the effects of high-concentration fish oils on the progression

of HD. This study was discontinued because there were insufficient positive results to justify its

continuation. My wife and I both participated in TRACK-HD, which is a major international

study seeking to identify the best combination of assessments to be used in clinical trials of

- 3 -

disease-modifying treatments. Volunteers for this study included people who are asymptomatic,

people in the early stages of the disease, and a control group of individuals who do not have the

gene. Both my wife and I underwent assessments, MRls and other neurological tests as part of

the study. We participated in the study for two and a half years. I am currently participating in a

double-blind trial based on enzymes which is scheduled to last for 5 years.

10. I feel fortunate that my HD onset took place later in my life. Not everyone is so lucky.

Young people can also have HD, and it will likely lead them to an early death. It is important to

me that I contribute in some way to the prevention of suffering and loss by helping advance the

state of medical knowledge.

Progression of HD Symptoms

11. I was officially diagnosed with HD in 1998 once I began developing symptoms. By then,

my HD symptoms had reached a level that made me unable to produce the quality of work I was

used to. For example I would measure what I had to cut and by the time I got to the saw, I no

longer knew what I was doing. On a number of occasions, I called my wife from worksites

because I was confused. I did not know where I was going and what I was needing to do. The

most important thing to do was to create a day without any impacting stresses.

12. I spoke with my employer and told him about my diagnosis. I was told I could finish the

job I was working on and was given the opportunity to leave in a dignified way. Under the

circumstances, I am grateful that I was not fired.

13. The year following my retirement was, perhaps, the hardest time for me. I felt guilty

watching my wife go to work, knowing that I could not help contribute financially. It was also

difficult to watch other people retire and enjoy their old age. I was envious of their

circumstances. My perspective has changed over the last few years as I have watched others

endure hardships, but it was a struggle at the time.

14. I dealt with this difficult period by keeping myself busy. My wife and I bought homes,

which I would renovate, and then we would re-sell them. I was able to do this work because I

could take my time and did not need to rush. It gave me a sense of accomplishment and made

me feel like I was still able to contribute to our family.

-4

Progression of Symptoms

15. My initial HD symptoms were mainly cognitive. I struggled with depression, anxiety,

agitation and memory loss. In 2007, I had to stop driving, which was a great blow to my

independence and mobility. Losing the ability to drive felt like an amputation. I am now largely

dependent on my family for transportation, though I do occasionally take taxis or HandyDARTs.

16. My physical symptoms took longer to appear, but they are progressing and have become

more apparent each year. For example, I began losing my balance and falling about six or seven

years ago. In 2007, we had to sell our house because the house had stairs, and they became

impossible for me to navigate. Our current home does not have stairs.

17. Currently, I experience involuntary movements. I have difficulty speaking and I

frequently make jerky and uncontrollable movements. I am coping with anxiety, and memory

loss. I take the anti-depressant Zoloft and the anti-psychotic Mementine, which is commonly

used to treat Alzheimer's. The medication has successfully treated my depression, but it can be

challenging to treat my symptoms and maintain a balance between alertness and sedation.

18. The hardest part of the disease for me is that I am no longer able to communicate and

interact with people the way that I used to. The disease affects my motor skills, so my ability to

enunciate is significantly impaired. This is exacerbated by the disease's effects on my cognitive

abilities, which makes it difficult to form sentences in my mind fast enough to express myself. I

experience ongoing frustrations with my inability to participate m debates and lively

conversations, something that I used to be very passionate about. I have a very strong

relationship with my wife and children, but it can sometimes be difficult to form new

relationships. For example, sometimes it is hard for me to watch others interact and

communicate with my young grandchildren because I see that they are able to build relationships

with them in a way I no longer can. I wonder what my relationship with them would be like if I

did not have this disease.

19. I am grateful that I have not become aggressive or violent, which are both common

consequences of this illness. HD can cause significant personality changes, and I am glad my

symptoms have not become that severe. Not all of my experiences with HD have been negative.

- 5 -

I have friends and loved ones who have died before me or endured hardships that are unrelated to

HD, so I do not feel like the victim of some injustice. My symptoms continue to progress and I

feel myself getting worse each day, but I still consider my quality of life to be good.

Family History of HD

20. HD is very prevalent in my family. There are at least 10 members of my family who

currently have HD; many are in denial and refuse to get tested. I was recently at a family

reunion and a relative's face was badly bruised because she kept falling. She could not

understand why her balance was so poor. She had been tested for many disorders and diseases,

but she refused to get tested for HD even though genetically it is very likely that she has the

disease.

21. Perhaps the most disturbing experience I have had with HD was watching my mother

deteriorate. Although my mother lived in Holland, and my wife and I lived in Vancouver, we

saw her frequently. My mother was a proud and strong woman who in her final years was

reduced to a mess by the disease.

22. My mother was officially diagnosed with HD around 1985, but I suspect the disease's

onset was actually when she was in her late 40s. My mother told the family about her diagnosis

but then never discussed it again. Both my parents were in denial about my mother's illness.

They never sought help. My mother's illness was hell for my family. The disease made her

angry and violent. She blamed her anger and hysteria on everyone and everything, but HD. The

last time I saw her, she was rather demented. She would have been unrecognizable to her former

self.

23. Along with the violence and hysteria, my mother's motor skills and coordination were

also affected. She fell frequently and broke many bones. She was buried with her arm in a cast.

My mother died in 1994 at the age of 68. I suspect that she ultimately gave up on her life and

starved herself to death. I feel a lot of guilt that I did not know more about HD while she was

alive. I blamed my mother for her anger and madness without realizing that these are symptoms

of the disease.

- 6 -

24. My uncle also had HD. His wife looked after him for 18 years before he was eventually

hospitalized. She visited him in the hospital every day. At one point she had to get heart surgery

and could not visit him for two weeks. He was incredibly agitated and confused. It was terrible

to see. He spent the last two or three years of his life in the fetal position in a hospital bed. He

died in 2006.

25. I watched my aunt die of HD as well. She denied ever having the disease, but her

symptoms were very apparent. She had physical symptoms such as uncontrollable movements

and, similarly to my mother, the disease made her violent. My aunt weighed less than

35 kilograms at the time of her death. My brother was just diagnosed with HD in May of 2011.

My sister refuses to be tested.

26. My children have both been tested for HD and they do not carry the gene. This means

that none of my children or grandchildren will develop this disease. It is a profound relief.

Choice in Dying

27. My wife and I occasionally discuss my death because my deterioration is inevitable. We

both have a good understanding of what lies ahead, but our current focus remains on living with

HD.

28. I cannot tell you when I will want to stop living. At this point, I still want to live, but

when the quality of my life is gone, I want choice in my death and the right to choose the time

and manner of my dying. I have not drawn any lines. However, I have completed a "Do Not

Resuscitate" (DNR) request and I know that I do not want a feeding tube if I lose the ability to

swallow.

29. Right now, I feel well supported. My wife helps me keep a healthy perspective and

encourages me to find the humour in my challenges. We are both part of HD suppOli groups,

which enable us to connect with others who are going through similar challenges. Unlike cancer

or many other diseases, HD is not a painful illness. I think my outlook on life would be different

if I was in pain.

- 7 -

30. I am very concerned about preserving my dignity. I have sufficient experience watching

loved ones deteriorate with HD and I am well aware of the things I have already lost to the

disease. I am confident that one day I will reach a point where I have had enough. I trust that I

will recognize that day when it comes. I know that I do not want to waste away like my aunt or

spend years in a daze in a hospital bed like my uncle. I know I do not want to suffer through a

degrading demise like my mother.

31. I come from the Netherlands, where medically assisted dying has been legal for many

years. I believe that this is a sane and sensible approach. I support medically assisted dying

because it prevents needless suffering. I see this issue as being fundamentally about the right to

choose and the right to have that choice respected. I believe that it should be an individual's

choice, not the government's choice.

32. I have watched people struggle to end their own lives. I had a friend with HD who tried

to kill himself by driving his car into an electrical pole. He survived with only a broken leg. He

eventually starved himself to death in the hospital. Dying of starvation is a terrible way to die,

yet the doctors and medical staff respected his request to die in that manner, though they would

not help him die in a less painful way.

33. There could be a long road ahead of me. Most people who have this illness die from

other causes. I am not sure ifI would end my own life if the laws do not change in Canada. I do

not want to put my family in a position where they have to break the law to help me. I do not

want any member of my family to face possible criminal charges. I do not want my wife to face

the opposition of her family, which is religious, should she decide to help me die. I do not want

to be forced to take my own life in a violent manner that would traumatize my family. I want the

decision to be legal, balanced and clean. For myself, I would prefer clear rules and safeguards.

do not want to have to make this decision without medical advice and assistance.

- 8 -

34. When I no longer have a life of quality, I want to have the choice to end my life with

dignity and under the care of a doctor. I want to be able to end my life in peace, having the

chance to say goodbye to my family.

SWORN (OR AFFIRMED) BEFORE ME at Abbotsford, British Columbia, on

Aug 2011

.ac ........ '."I.r., • Sollclto, 8C Civil U_rties Associ'tion Suite sse -118 West GM,., Street Y,ncouver, Ie Y6r 4A2 rei: 604.630 .. 1751

) ) ) ) ) ) )

PIETER MAARTEN ZWART



BETWEEN:

AND:

AND:

LEE CARTER ET AL.

PLAINTIFFS


DEFENDANTS


AFFIDAVIT



Phone: 604.689.4421 Fax: 604.687.1941 File No. 2734-001

INTERVENOR

affidavit - the globe and mail hereto and marked as exhibit a to this my affidavit is a true copy...

Documents