medical assistance in dying (maid) alain naud · story of life, end-of-life and dignity medical...
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Story of Life, End-of-Life and Dignity
Medical Assistance in Dying (MAID)
Alain Naud MD CCFP(F)CHU de Québec – Université Laval, Québec City
Family Medecine Forum, College of Family Physicians of Canada
Palais des Congrès, Montréal (Québec)
November 10, 2017
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Disclosure
Board member, Québec College of Physicians
Board member, CHU de Québec – Université Laval
No conflict of interest with the topic of this presentation
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Plan
1) Québec Bill no 2, C-14, SCC
2) Preamble
3) Myths, falsities and misconceptions
4) Assessment and accompaniment
5) Procedure
6) Keynotes
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Québec Bill no 2
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Québec Bill no 2
Loi sur les soins de fin de vie
An Act respecting End-of-Life Care
http://www.assnat.qc.ca/en/travaux-parlementaires/projets-loi/projet-loi-52-41-1.html
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2009, Dec 4 Special parliamentary commission
« Mourir dans la dignité »
« Dying with dignity »
2014, June 10 Bill passed with 81 % of votes
No abstention
2015, Dec 10 Went into effect
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Québec Bill no 2An Act respecting End-of-Life Care
June 10, 2014
Includes :
Palliative care
MAID
Palliative sedation
Advanced medical requests (excludes MAID)
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Main differences with C-14
Must be end-of-life condition
3 witnesses at signature
No 10 days mandatory waiting time
No assisted suicide
No nurse practitioners, only MD
Assessor must be provider
Mandatory declaration form, within 10 days
No coroner inquiry
All public health institutions MUST offer MAIDonly exception: semi private hospices (28 / 32)
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Canada Bill C-14 June 17, 2016
Natural death reasonably foreseeable, with no
prognosis necessary
10 days mandatory waiting time
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Supreme Court of CanadaFeb 6, 2015
Grievous and irremediable condition
(illness, disease or disability)
that causes enduring suffering
that is intolerable to the individual
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The right to live
must not be transformed into
an obligation to live
Supreme Court of Canadaunanimous 9-0 judgementFeb 2015, Carter decision
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Preamble
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MAID
is a
clinical, medical, moral, ethical
legitimate and completely legal
CARE
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MAID IS NOT a SHAMEFUL care
No patient has to hide from asking
No caregiver has to hide, justify or excuse frombeing involved
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MAID is
Everything BUT a simple lethal injection
It`s an end-of-life accompaniment of an incurable,
suffering and hopeless patient
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No opposition pall care - MAID
End-of-life options
- Denial of care
- Palliative care (PC)
- MAID
- Terminal sedation
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MAID is in no way against PC
With PC and others end-of-life options
MAID is FOR the patients
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MAID
is an
end-of-life accompaniment
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The only worthy DEATH WITH DIGNITY
is the one a
well informed and competent patient
will choose freely for himself, in accordance with
HIS OWN values, beliefs and convictions
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It’s easy to debate or philosophize
over the meaning of death and suffering
when others are facing it
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Concientous objection
Well protected by current laws + MD College guidelines
Comes along with obligations
- to withdraw from all the process surrounding MAID
- to transfer requests to a colleague
- to assume or ensure continuity of care
Gives you NO RIGHT to harm process or patient
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5 hospitals
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• 1st in Québec
• 3rd in Canada
• 2 K population served
• 1 650 MD, Ph, Dt
• 1 700 beds
• 14 000 employees
Located in Québec City
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Le CHU de Québec-Université Laval
▪ 4 pall care units
▪ 5 800 cancer patients hospitalised / y
▪ 2 700 deaths / y all causes
▪ 1 700 deaths / y receiving pall care
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Raw datas with MAID at CHU de Québec
How many ?
Who ?
How ?
When ?
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MAID at CHU de Québec – U.L.
2016 58 patients 2,1 % of all deaths
Up to sept 2017 115 patients 2,1 % of all deaths
MAID in the Province of Québec
2016 461 patients 0,7 % of all deaths
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Raw datas with MAID at CHU de Québec
How many ?
Who ?
How ?
When ?
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Myths
Falsities
Misconceptions
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Physical suffering = only physical pain
Variant: Well controlled physical pain eliminates requestor eligibility of a patient for MAID
FALSE
Physical sufferingmay also be
Uncontrolled physical pain very uncommonly main issue
PSYCHIC suffering the most common, + physical sufferings
Cachexy Dyspnea Dysphagia
Paralysis Complete bed rest Wounds
Hemorrhage Bowel occlusion Exhaustion
Transfusions, punctures, repeated procedures
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Patient who receives good pall care never request MAID
Variant: requests for MAID are the sign of a defective access to good pall care
TOTALLY FALSE
Parallel with terminal sedation Experience at CHU de QuébecRejection of pall care by some patientsNumerous requests for MAID in hospices in the province
Good pall care are essentials, but can’t relieve everythingor are denied by some patients
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It’s forbidden to talk about MAID with a patient, unless he asks specifically for it
FALSE
Offense to deliberately hide a care that’s legitimate and legal
Obligation to bring up MAID into discussion, when appropriate - inform patient of available options- make sure of his understanding- with no judgement nor influence- respect the patient’s choice
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Obligation to set up a date at the assessment visit ?
NO
Assess eligibility
On follow-up visits, make sure that- patient is still able to consent- has not changed his mind
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Patient must have tried everything before ?Must have received palliative care before ?
NO
Obligation to inform about alternatives and possibilities
Obligation to respect the patient and his choice
The patient is the only one who can bear witness of his own suffering We owe him total respect
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Mandatory 10 days waiting time ?
NO
No such waiting time in Québec Law
ALL end-of-life patients→ at risk of loosing ability to consent
It’s up to the assessor and second professional to decide
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Agreement of families - relatives necessary ?
NO
Some family members - relatives are having a difficult time
Uncommon, but TRUE
Death will always be a difficult, unpleasant, even painful experiencePathologic mourning – dysfunctional individuals and families have always existed and will always exist. With or without MAID
MAID hasn’t been introduced to relieve families, friends and relatives
Obligation to protect the ill patient first. The patient is the boss
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Assessment
and
accompaniment
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Story of Life, End-of-Life and Dignity
Marie was her name…
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Marie, 63 y
Married X 42 y, lives with husband
3 children, 4 grandchildren
Manager, financial institution
Practising Catholic
Former smoker, fit, living happy fulfilling life
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2015, Feb 14 Pulmonary adenocarcinoma stage IVNeoplastic pericarditis + tamponade3 lines of chemo, including experimental one
2015, Dec 15 Bowel occlusion NGTHospitalized in oncology
2015, Dec 23 Left pleural effusion pigtail tube
2015, Dec 24 She asked to stop chemo. Level of care IIConsultation with pall care team
2016, Jan 5 Level of care III (comfort care)Moved to pall care unit
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Current status
• Bedridden• Unable to eat or drink• Weight loss +++ Emaciated +++ • Totally bald• NGT – urinary catheter – chest tube – IV line• Peritoneal carcinomatosis + occlusion• Ascites +++• Countless metastasis
Prognosis < 3 weeks
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Medication
• Hydromorphone 0,6 mg s-c q 4 h • Dexamethasone 4 mg s-c qd• Quetiapine 50 mg by NGT qd• Dexlansoprazole 60 mg by NGT qd• Fluconazole 200 mg oral qd• Scopolamine patch q 72 h• Haloperidol 1 mg s-c BID PRN• Lorazepam 0,5 mg s-c QID PRN
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• Physical pain quite under control
• Physical suffering ++o Totally bedriddeno Extreme weakness and muscle waistingo Unable to eat or drinko Many uncomfortable tubes
• Psychological suffering +++o Loss of body imageo Loss of dignityo Completely dependent on otherso Remaining time meaningless and worthless
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Thursday, Jan 7 Signed request form for MAID
Has already discussed it with▪ Family▪ Pall care MD▪ Hemato-oncologist▪ Social worker▪ Chaplain
Unconditional support from family
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Thursday, Jan 7 Call for evaluation request
Friday, Jan 8 Encounter, private room2 h 50 to 5 h 30 PMInvolvement of care team
With ? Husband and childrenWhen ? Tonight !!!
Call MD for 2nd opinion + pharmacistMAID set for next day, Saturday, Jan 9, 11 h AM
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Special requests
Empowerment powercontroldignity
Managing the family
Funeral home
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Saturday, Jan 9
Daughter + husband overnight with her
10 h 00 AM Visit – confirmation of consentNGT removed – already central IV line
Champagne – coffee – toast + strawberry jamHospital pharmacy
10 h 55 AM Back at bedside11 family members + nurse
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Saturday, Jan 9
11 h 00 AM Last farewells + hugs + kisses + whispered words
Totally serene and peaceful
Last confirmation of consent
“ Doctor, I’m ready. Let’s begin ! ”
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Procedure
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➢ NaCl 0,9 % 10 ml
➢ 1- Midazolam 10 mg 10 ml 30 sec
➢ Xylocaïne 40 mg 2 ml 5 sec
➢ 2- Propofol 1000 mg 2 X 50 ml 5 min
➢ NaCl 0,9 % 10 ml
➢ 3- Cisatracurium 30 mg 15 ml 30 sec
➢ NaCl 0,9 % 10 ml
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Course of procedure
Attestation of death at 11 h 10 AM
Back in the room with family at 11 h 40 AM
Death certificate: cause of death is cancer, not MAID
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What does MAID bring up NEW or DIFFERENT
to patients?
to families and relatives ?
to caregivers ?
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1. « Insurance policy »
2. Relief – appeasement – pacifying
3. Empowerment
4. Always avoid terminal coma – agony stage
5. Allows planning – rituals of this moment with relatives
6. Family – relatives – friends at bedside
7. Communication capability preserved up to the end
8. Last words – farewells – hugs – kisses with family
9. Last words – farewells – hugs – kisses with caregivers
10. Less guilt for families (VS terminal sedation)
11. MD always at bedside with patient and relatives
12. Rapid, peaceful and painless death witnessed by relatives
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Sept 22nd, 2016
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« If God cannot understand that,I don’t feel like
spending the eternity with him »Old dying and suffering lady,
devoted, practising catholic,
who asked for MAID
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« Who am I to judge ? »
Pope FrancisJune 26, 2016
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« When you don’t want to see,you don’t see »
Pope FrancisSeptember 11, 2017
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6 keynotes
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1
MAID is a
medical, clinical, moral, ethical
legitimate and completely legal
CARE
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2
MAID IS NOT a SHAMEFUL CARE
which one must hide, justify or excuse from
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3
MAID is everything BUT
a simple lethal injection
It’s an end-of-life accompaniment
of a suffering and hopeless patient
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4
It’s easy to debate and philosophize
over the meaning of death and suffering
when others are facing it
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5
No patient should ever have to pay
with his own suffering
the price of religious, ideological or personal
values, beliefs and convictions of some caregivers
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6
There is no opposition between
palliative care, terminal sedation, denial of care and MAID.
They’re all legitimate and legal end-of-care options,
which the free choice belongs exclusively
to the competent and well-informed patient,
in accordance with his OWN values, beliefs and convictions
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Thank you