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Your Life, Your Choices: Planning for Future Medical Decisions

The following is a 1997 publication that was produced under VA IIR Grant No. 94-050, “Development of an Advance Care Planning Workbook,” 4/01/95 – 3/31/97. It is posted here for information purposes. It is the policy of the Obama Administration to make available to the public scientific and technological information that is developed and used by the Federal Government. http://www.whitehouse.gov/the_press_office/Memorandum-for-the-Heads-of-Executive-Departments-and-Agencies-3-9-09/ Your Life, Your Choices was officially retired from use in VA in 2007, and an expert panel was convened to review and comment on an online module version of this document that was under development at that time. The Your Life, Your Choices online module is currently being revised based on suggestions from the expert panel members and from chaplains representing eight different faith groups. The revised online module is scheduled to be released on the My HealtheVet Web site in the spring of 2010. Please note that portions of this document have been interpreted by some to be negative in tone and insufficiently balanced. The revision process is addressing these concerns. Also note that some of the links contained in the document are no longer active. For more information, see http://vaww1.va.gov/health/ (VA intranet) or http://www1.va.gov/health/

Your LifeYour Choices Planning

for FutureMedicalDecisions:

How toPrepare aPersonalizedLiving Will

1

Your LifeYour Choices

Authored by

Robert Pearlman, MD MPHHelene Starks, MPHKevin Cain, PhDWilliam Cole, PhDDavid Rosengren, PhDDonald Patrick, PhD MSPH

Design & Layout by

Brems Eastman & PartnersInformation Design Seattle

Planning forFuture MedicalDecisions:

How to Preparea PersonalizedLiving Will

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"What should we dofor Dad?"

Your Life, Your ChoicesThere’s only one person who is truly qualified totell health care providers how you feel aboutdifferent kinds of health care issues—and that’s you.But, what if you get sick, or injured so severely thatyou can’t communicate with your doctors or familymembers? Have you thought about what kinds ofmedical care you would want? Do your loved onesand health care providers know your wishes?

Many people assume that close family membersautomatically know what they want. But studieshave shown that spouses guess wrong over half thetime about what kinds of treatment their husbandsor wives would want.

You can help assure that your wishes will directfuture health care decisions through the process ofadvance care planning.

"We got the kind of call we'd feared. Dad had

been in declining health for months. Then he fell

asleep at the wheel and was in a bad car accident.

Three weeks later he was still in a coma. A breathing

machine pumped air into his lungs because he could

not breathe on his own. The doctors thought his

chances of coming out of the coma were slim. They

talked with Mom and me about turning off the

breathing machine and allowing Dad to die naturally.

I felt terrible. I didn't think Dad would want to be

kept alive like this. But I knew Mom would feel guilty

for the rest of her life if we told the doctors to "pull

the plug" while there was still even the slightest hope.

We weren’t sure what we should do because Dad

never told us what he would have wanted. I really

wish we'd talked about this before."

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1. Figure out what you want.Think. You need to understand what kinds ofsituations you might face and the options for care.

Write. Write down your wishes so your loved oneswill have a record of what you told them. This also

helps if no one is around who canspeak for you.

What do you need to do toguide your future health care?

Forms are included in theback of this workbook.It can take as little as15 minutes to fill them out.

2. Communicate this to others.Talk. Tell your loved ones and health care providersabout your strongly-held beliefs and what kinds ofcare you would want indifferent situations.

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Part I: The Basics. This 14-page section introduces and discussesall of the important components of advance care planning. Youmay find it provides enough information for you to figure outwhat you want and express yourwishes to others.

Part II: Resources. Turn to thesesections for additional help andfurther explanation of ideasand topics introduced in“The Basics.”

Two ways to use this book.Spend an hour working through “The Basics.” Then communicate.

OR

Work through “The Basics.” Take another hour or two to workthrough all or part of “Resources” for a more complete approach.Then communicate.

How to use this workbook.This workbook has two parts.

COMMUNICATE

COMMUNICATE

TABLE OF CONTENTS The Basics Why do you need to think now about future health care decisions? ......................................................................... 5 Do you have strongly-held beliefs that should guide your care? ................................................................................ 6 If you couldn’t speak for yourself, what would you want done for you? .................................................................. 7 Who will speak for me if I can’t speak for myself? ................ 8 Common questions about choosing a spokesperson................ 9 What else can I do to make my wishes known? .................... 10 Common questions about advance directives ........................ 11 What situations and decisions do people commonly face?

Dementia .................................................................... 12 Coma .......................................................................... 13 Stroke ......................................................................... 14 Terminal illness .......................................................... 15 Telling others what you want ..................................... 16 Writing it down ........................................................... 17 What’s next? ............................................................... 18

Thought-provoking exercises Introduction.. ...................................................................... 19 Your Beliefs and Values Who should speak for me? .................................................... 20 What makes your life worth living?....................................... 21 Personal and spiritual beliefs ................................................. 22 Hope for recovery .................................................................. 23 Weighing pros and cons of treatment for different chances of recovery ........................................... 23 Choices about death and dying How would you like to spend your last days? ....................... 24 Organ donation and autopsy................................................... 25 Burial arrangements ............................................................... 25 Funeral or memorial services ................................................ 26

Health conditions and treatments Introduction .. ...................................................................... 27 Health conditions Coma........................................................................................ 28 Dementia ................................................................................. 29 Serious stroke .......................................................................... 30 Terminal illness ....................................................................... 31 Treatments Kidney dialysis ........................................................................ 32 CPR-Cardiopulmonary Resuscitation ..................................... 33 Feeding tubes .......................................................................... 34 Mechanical ventilators (breathing machines) ......................... 35 Hospice and palliative care ..................................................... 36

Your health care preferences Introduction.. ....................................................................... 37 Care preferences under different health conditions Current health.......................................................................... 38 Permanent coma ..................................................................... 39 Severe dementia ..................................................................... 40 Severe stroke .......................................................................... 41 Terminal illness ...................................................................... 42 A future situation of concern................................................... 43

How to talk about your wishes Introduction. ........................................................................ 45 Talking about your wishes Starting the discussion ............................................................ 46 Asking someone to be your spokesperson .............................. 47 Who else should you talk to? .................................................. 47 What if you don't have close family or friends? ..................... 47 Nine important issues to discuss ............................................. 48 Talking to your health care providers ..................................... 49 Reviewing you wishes ............................................................ 50 Other issues Legal and ethical issues of advance care planning ................. 51

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Why do you need to think nowabout future health care decisions?Whether you are young or old, healthy or sick, theremay come a time when an important decision needsto be made about your health care. And whether it’stomorrow or five years from now, there’s no guaranteethat you will be able to express your wishes foryourself at that time. Consider the Larsen family:

Chris Larsen never told his family what kind

of medical measures he’d want if he became critically

ill. He is in a nursing home after having suffered a

severe stroke 9 months ago. He is paralyzed and

unable to take care of himself or communicate in any

way. Now he has pneumonia and will probably die

unless he goes to the hospital to receive intravenous

antibiotics. He also may need to be on a breathing

machine for a week or so. The doctor says that his

chances of returning to normal are remote, but that he

has a fair chance of getting over the pneumonia. His

family members disagree about what they should do.

His son Bill says, “Dad was never a quitter. He'd want

to fight to the very end, as long as there was the

slightest hope.” His daughter Trudy disagrees. “Sure,

Dad wasn’t a quitter, but he wanted to die naturally—

he would be horrified to be kept alive this way.”

In fact, Trudy’s views were the closest to Mr. Larsen’strue opinion. But the family never had a way to findthis out. They treated his pneumonia and he livedanother year in the nursing home without recoveringhis ability to communicate or care for himself.

This story shows why it is so important to discussyour wishes. Talking with your family and health careproviders ahead of time can prevent confusion andhelp ease the burden on them.

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Think ahead. Imagine being in a critical condition—one in which you were unable to communicate yourwishes. If medical decisions could mean the differ-ence between life and death, what would you wantyour loved ones and health care providers to do?

Your strongly-held beliefs can guide these choicesbecause they help others understand what you valueabout life. But be sure to explain your beliefs becausepeople often use the same words to mean verydifferent things. Consider the cases of Mrs. Santiniand Mrs. Johnson, both deeply religious women.

"I want to be kept alive as long as possible,"

Maria Santini has said on many occasions. "Life is

sacred and has meaning, no matter what its quality."

"When my time comes, keep me comfortable."

Irene Johnson also believes life is sacred. However,

she has often said, "I’ve lived a long and full life. I

don’t want anything done just to keep me alive."

Because Mrs. Santini and Mrs. Johnson bothbelieve that life is sacred, many people wouldassume that their views on being kept alive wouldbeen the same. But, as you’ve seen, it’s not thatsimple.

Here's another example. Have you ever heardanyone say, “If I’m a vegetable, pull the plug”?What does this mean to you? What's a vegetable?What's a plug? Even people who live together canhave very different ideas about what the same wordsmean without knowing it. The story of May andJohn Williams shows how important it is to bespecific about what you mean.

Do you have any strongly-heldbeliefs that should guide your care?

When you say, “pull the plug”it could mean a variety ofthings:• Stop the breathing machine• Remove the feeding tube• Don't give me antibiotics• Stop everything

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"I'd never want to live like a vegetable." Both

May & John Williams have always shared this belief

during their fifty years of marriage. But when they

were talking about their advance care plans, they

learned that they had very different views about what

that meant. For May, it’s when she can’t take care of

herself. John was surprised. For him, being a

"vegetable" is much worse. "It’s when my brain’s not

working but my body is being kept alive by

machines."

Pages 21-26have exercisesto help youspecify yourbeliefs andvalues in moredetail.

People have very differentnotions of what it means tobe a “vegetable.” Here aresome more examples:• “You sit in a chair and

don’t do anything all day.”• “You can’t read anymore.”• “You’re just a body with

some life in it.”

If you couldn’t speak foryourself, what would you wantdone for you?Think about the following statements. Do you agreewith any of them? Discussing your answers withothers can help them understand what is importantto you and where you stand with respect to healthcare decisions.

My life should be prolonged as long as it can, no matterwhat its quality, and using any means possible.

I believe there are some situations in which I would notwant treatments to keep me alive.

I'd want my religious advisors to be consulted about allmedical decisions made on my behalf to make surethey are in keeping with my religious teachings.

My personal wishes would not be as important as whatmy family thinks is best for me.

I'd want to have my pain controlled, even if themedications make me sleepy or make it difficult to haveconversations with my family.

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Who will speak for me if Ican't speak for myself?For people with close family members, choosinga spokesperson may seem simple. If you aremarried, your health care providers will ask yourspouse to speak for you. If you are not married,other relatives usually are consulted. However, ifthese people disagree, it can be very difficult forhealth care providers to know whom to listen to.

Sometimes your closest next-of-kin is NOT theperson you would like to speak for you. In that case,you can formally appoint the person of your choiceto be your "voice." You can give this person thelegal authority to make health care decisions for youusing a "durable power of attorney for health care."The following story shows why this is so important.

Larry Roberts assumed his doctor would listen

to his closest friend, Mrs. Alice Jergen, for advice

about his wishes for medical treatment. She'd been

visiting him daily since he entered the final stages of

lung cancer and they talked about it often. Three

days ago, he developed an infection and became

delirious with a high fever. Before making a decision

about whether to start him on antibiotics, Mr.

Roberts' doctor felt it was appropriate to consult his

next-of-kin. This turned out to be his brother Frank,

who lives in another state. Frank and Mrs. Jergen

disagreed about what medical treatment Mr. Roberts

should have. Mr. Roberts never talked about this

with his brother. But because Mrs. Jergen was not

related to Mr. Roberts and had no legal authority, the

doctor followed his brother’s advice.

A durable power of attorneyfor health care ensures thatthe right person will speakfor you when you can’tspeak for yourself.

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Common questions aboutchoosing a spokesperson.Q: What happens if I don’t appoint a spokesperson?

A: Health care providers will consult with someoneclose to you. They will usually contact your next-of-kin, starting with your spouse. If you are marriedand want your spouse to be your proxy, then doingnothing is probably OK. If you are separated fromyour spouse but not divorced, health care providerswill still ask your spouse to make decisions for you.

Q: Can a friend be my spokesperson?

A: Yes, but unless you appoint your friend as yourspokesperson, using a durable power of attorney forhealth care, he or she may not be consulted or maybe overruled by family members.

Q: What happens if some family members don’tagree with my spokesperson about what's best for me?

A: Health care providers usually will give treatmentwhile they try to reach agreement about what to do.The best way to prevent disagreements is tocommunicate with everyone ahead of time to letthem know who you've picked and what you want.

Q: Who is the best person to be my spokesperson?

A: Think about the people in your life and askyourself the questions below.

• Who knows me well?• Who would do a good job representing me?• Who is available to come to my side if needed?

Q: What if I don’t know anyone who I want to bemy spokesperson?

A: Your best choice is to write down your wishesand give a copy to your health care provider. Fill outa legal form, such as a living will, with as muchdetail as possible. Include a personalized statement,such as the exercises from this book, to provide abetter understanding of your wishes.

Q: Do I need to talk to my spokesperson now?

A: Yes, because you need to make sure they arewilling, and to tell them about your wishes so they'llknow what to do for you.

If you are married, yourspouse will be recognized asthe person to make decisionson your behalf, unless youhave a durable power ofattorney for health care thatappoints someone else.

See page 20 ifyou need morehelp decidingwho is the bestperson to beyourspokesperson.

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What else can I do to make mywishes known?It is good idea to write down your wishes for futurehealth care because it gives others the most completepicture of how you feel and what you would want.You can do this by signing an advance directive,which can be either a formal, legal document or aninformal statement of your wishes. There are twotypes of formal directives: proxy and instructional.

A proxy directive uses a legal document called a“durable power of attorney for health care” toappoint a spokesperson who can make health caredecisions on your behalf. It goes into effect whenhealth care decisions need to be made for you andyou can’t communicate or make health care decisionsfor yourself.

Instructional directives, such as a “living will” or“directive to physicians,” are written instructions tophysicians in the event you cannot speak foryourself. They usually tell health care providerswhich treatments you would not want if you becometerminally ill or end up in a permanent coma.

A personalized statement lets you express what ismost important to you. In addition to talking withloved ones and health care providers, you can makethis statement by including the exercises from thisworkbook, writing a letter to your loved ones, ormaking an audio or video tape.

Which directive is best?It depends on your situation. You could completeeither a proxy or instructional directive, both, or justa personal statement. Most health care providers likeproxy directives best because it means they will havesomeone to talk with who knows you well. But noteveryone has a proxy to represent them. In that case,an instructional directive will help your health careproviders decide what’s best for you. Either way,adding a personalized statement helps others feelmore confident that they are doing what you wouldhave wanted them to do.

There are 3 steps to advancecare planning:

1. Think through yourpreferences

2. Talk about your wisheswith others

3. Document your wishesCompleting an advancedirective or writing apersonalized statement areways to accomplish thethird step.

You can personalizeyour advance directivewith exercises from thisworkbook, a letter, oreven a tape.

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Blank copiesof advancedirective formsare locatedin the backpocket of thisworkbook.

Common questionsabout advance directives.Q: Why should I complete an advance directive?

A: Advance directives are legal documents that helpyou keep control over future health care decisions.They can also relieve your loved ones of the burdenof making life and death decisions on your behalf.

Q: When do advance directives go into effect?

A: Only if you become unable to understand yourmedical treatment options or are unable tocommunicate your wishes for medical treatment.

Q: What’s the difference between a “living will”and a regular will?

A: A living will, like all advance directives, isrestricted to decisions about your health care. It goesinto effect while you are still alive but unable tocommunicate. A regular will pertains to your estateand property. It goes into effect after your death.

Q: What should I do with my advance directive afterI’ve signed it?

A: You should give a copy to each person whom youwant to be informed of your wishes, including yourhealth care providers. Keep a list of their names. Putthe original in a place where others can easily find it.Do not put your only copy in a safe-deposit boxbecause it may not be easy to get if someone needsit. You can also fill out the wallet card (in the back)to let people know where they can find a copy.

Q: What if I change my mind about what I wantafter I’ve completed an advance directive?

A: You can always change your directive. Eitherwrite the changes on your existing directive (initialand date the changes), or destroy the old one andwrite a new one. Be sure to give revised copies toeveryone who has a copy of your older version.

Q: I have homes in 2 states. Is my advance directivevalid in both places?

A: States often have different laws and differentforms. It may be best to complete separate forms foreach state. Check with your health care providers ineach place.

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What situations and decisionsdo people commonly face?There are many situations in which people are notable to talk or communicate their wishes because ofillness or injury. The following stories describe thekinds of decisions family members, friends andhealth care providers must make when people can'tspeak for themselves. As you read these stories, tryto think about how you would value the quality ofyour life in each situation and whether you wouldmake the same kinds of decisions for yourself.

• The percent of people withdementia increases with age.At age 65, it's about 5%,at age 75, it's 10-20%, andat age 85, it's about 35%.

• With Alzheimer’s disease themind fails before the body—many people are otherwisehealthy.

• In the advanced stages ofdementia, people typically donot know where they are orrecognize family members.They frequently stop eating,even with help from others.

DementiaLily Chen, an elderly widow, was diagnosed 4 years

ago with Alzheimer's disease, a common form ofdementia. Over time she has gradually been losing herability to think clearly and make decisions. Now shedoesn't remember where she is and she can no longerrecognize her daughter who visits her every day. For thelast 8 months, she has been completely dependent onnurse's aides to bathe and feed her. Recently, shestopped eating altogether. Her daughter has power ofattorney for health care and has to decide whether tohave a long-term feeding tube surgically placed intoher mother's stomach. The surgery is quick and won'tcause much pain, but the real issue is guessing howMrs. Chen would value her current life. If they place thefeeding tube, Mrs. Chen could live for many more yearsin the same or worse condition. If they don't, she willdie in about 2 weeks or less, and probably won't feelhungry or thirsty .

Questions to consider:

Do you think Mrs. Chen's daughter should decideabout the feeding tube based on the fact that hermother isn't eating, or based on her mother'smemory problems and dependence on others forcare? Why?

Go to "Moreinformationabout healthconditions andtreatments" forgreater detail.See page 29 fordementia, page34 for feedingtube, page 28for coma (andPVS), and page35 forventilator.

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• People in a coma don’tfeel pain or any othersensations.

• Comas can be caused byinjury, illness, drugoverdoses and heartstoppage. Predicting theoutcome of coma dependson what caused it, howlong the person has beenin coma, and age.

• Doctors say that it can take3-4 weeks to see whethera person will come out ofcoma or go into a relatedcondition, “persistentvegetative state” or PVS.

ComaTom Rice was 29 years old when he was hit by a car

as he was riding his bicycle. He was taken to thehospital where he went into a coma. He lay in bed withhis eyes closed—it looked as if he were asleep, exceptthat he didn't respond when people talked to him and hedidn't wake up. He was put on a ventilator, or breathingmachine, that pumped air into his lungs because hecouldn't breathe on his own. He also had a feeding tubedown his throat so liquid food and fluids could gostraight into his stomach.

Tom was single so his parents were asked to decidewhether to continue the treatments that were keepinghim alive. His doctors thought Tom might come out of itbut that it could take anywhere from one week up to ayear. They said that the longer Tom remained in a coma,the less likely it was that he would ever wake up. Theythought that if he did come out of the coma, he wouldprobably have severe brain damage. He would needhelp taking care of himself and would not be able to livealone.

Tom had never said anything about what he wouldwant if he were in an accident. His parents kept him"hooked up" for weeks and weeks to give him everychance. After 2 months, they decided it was hopelesssince he hadn't changed in all that time. They stoppedall treatment and Tom died that same day.


Do you think Tom's parents kept him alive longenough? Too long? Why do you feel this way?

What if Tom were 69 instead of 29? Would itmake a difference? Why?

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• Risk factors for strokeinclude being over age 55,high blood pressure,heart disease, diabetes,smoking, high cholesteroland family history.

• Stroke is the #1 cause ofadult disability. Impair-ments can be mild,moderate or severe,depending on what part ofthe brain is affected.

• Most recovery of lostsensations or functionoccurs within the first 3-6months after a stroke.

• People who've had astroke have a 5-10%chance of having anotherone. The first few monthsafter their first stroke isthe time when they are atgreatest risk.

See page 30 formore on stroke,page 33 forCPR, page 31for terminalillness andpage 36 forhospice.

StrokeFlora Park woke up one day and couldn't move her

left arm. Her vision was blurred and she was havingdifficulty talking. Her husband called her doctor whotold her to go to the hospital—he suspected a stroke.After a long day of tests, the doctors agreed it was astroke. They started her on medication andrehabilitation therapy. After a few more days, her sightimproved and she was talking clearly again. After twomonths, she could move her arm but it was still a littleclumsy and weak. Her therapist taught her ways tomake the most of her weak arm. She was adjusting toher new situation, but she worried constantly aboutwhat would happen if she had a more serious stroke.

She talked about this with her husband and theirchildren. She said, "This stroke has made me think longand hard about what's important to me. The doctor saidthat even with my medications, I could have anotherstroke and I might not be able to tell you what I want.So I'm telling you now. I love life and don't want to giveup. That's why I'd be willing to go to the hospital andstart rehab again to see whether I can get better. But if Iget to a point where I'll never be able to feed myself ordo anything on my own, then I don't want anythingdone to prolong my life. That means no CPR if my heartstops and no machines. My biggest fear is that I won'tbe able to talk with you or enjoy your company. I'drather die quickly than suffer a long, slow decline."


Do you share Mrs. Park's views about when shewouldn't want treatment to prolong her life?

For you, is there such a thing as unacceptablequality of life? Where would you draw the line?

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• With terminal illness, theunderlying disease canno longer be cured. Mostpeople with a terminalillness are expected to diewithin 6 months.

• Comfort care includesmedications for pain andother symptoms, andkeeping the person clean

and dry. Sometimestreatments such as bloodtransfusions, antibiotics,or chemotheraphy areused to provide comfortby relieving symptoms.

• People who are close todeath often go "in and out"of awareness, being alertonly part of the time.

Terminal illnessCarlos Ruiz had severe heart disease for years. His

doctor said, "Your heart is much worse and it willcontinue to get weaker. Now we need to make somedecisions about your goals for care. One approachwould be to concentrate on supporting your heart, lungand other vital organs to extend your life as long aspossible. Another option would be to make relief of painand discomfort our highest priority, even if it meant youmight not live as long. Which of these approachessounds right for you?"

Mr. Ruiz said, "I've lived with this bad heart for along time. I'm tired of fighting, but I'm not quite readyto give up. I'd try simple treatments, especially if I canbe at home with my family. I'd rather be comfortablethan live a long time."

Mr. Ruiz' doctor gave him a referral to a hospicenurse who started visiting him at home. He got a fewlung infections which made it hard to breathe. He curedthem by taking antibiotic pills at home. Then he gotanother infection that didn't get better, despite takingantibiotic pills. He had a high fever and was so sick thathis wife had to decide what to do. His doctor andhospice nurse said they could put him in the hospital totreat his infection which would relieve his symptomsand might prolong his life. Or he could stay at homewith additional comfort measures until he died.

Mrs. Ruiz sent him to the hospital because shethought he might get better and could return home for alittle while longer.


Do you agree with Mrs. Ruiz's decision to sendher husband to the hospital? Do you think shefollowed his wishes?

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Kenji Nakamura wanted to appoint his daughter

Suzy to be his spokesperson. The first time he tried to

talk to her about this she said, “Dad, you’re going to

live to be 100 years old! We don’t need to talk about

this now.” The next time she came over he eased into

the conversation by talking about the things he was

thankful for, including his health. Then he asked her to

look at the statement of his wishes that he’d been

writing. Suzy was surprised to learn that her dad

never wanted to be kept alive by machines. She said,

“What if you only needed a breathing machine for a

few days?” After talking about it they both had a

clearer understanding of his wishes — he didn’t want

to be kept alive on a ventilator forever, but a short

time would be OK.

For more ideasabout waysto start aconversationabout yourwishes or whatto talk about,turn to page 45.

Telling others what you want.Your loved ones and health care providers need toknow how you feel if they are to carry out yourwishes in the future.

Raising this topic is not always easy. If your familymembers and friends are uncomfortable talking oreven thinking about these issues, consider these ideasto get a discussion started:

• Begin on a positive note by talking about howmuch you value them and their willingness tolisten to you.

• Share one of the stories from this workbook toshow how planning in advance can ease theburden on family members.

• Remind them that accidents can happen toanyone at any time and that you just want to beprepared.

Including others in a discussion about what you wantcan also help clarify your wishes in your own mind.Consider the story of Mr. Nakamura:

17

Writing it down.Even if you’ve talked about your wishes, when thetime comes, stress and strong emotions can causeyour loved ones to forget what you told them orwonder if they are making the right decision. Awritten document can help keep things straight.

You may document your preferences formally usingadvance directives. If you want to fill out either aproxy and/or instructional directive, the forms arein the back of this workbook.

Some people are more comfortable documentingtheir wishes informally in a letter or an audio orvideo tape. It seems more personal. You can alsopersonalize formal advance directives by attachingthese informal statements or any of the exercisesfrom this workbook.

Either way, “writing it down” means you’ve lefta record of your wishes that everyone—family,friends, and health care providers—can use as ageneral guide or as explicit instructions. You won’thave to worry that your wishes will be forgotten ormisunderstood.

“What you say is in the air,what you write is alwaysthere.”Blank advance

directive formsare locatedin the backpocket. Theexercisesthroughout thisworkbook canbe used topersonalizethese forms.

Clip out the wallet cardfrom the back of this bookand carry it with you to letothers know where to findyour advance directive.

Suzy was glad her dad had written his wishes

down when Mr. Nakamura fell and broke his hip.

While he was in the hospital, he got pneumonia and

became confused. His doctors asked Suzy whether

they should put him on a ventilator if he had trouble

breathing. She shared his advance directive with the

doctors and explained her father's fears of being kept

alive forever by a machine. As a result, they decided

to start antibiotic treatment, and if needed, they

would put Mr. Nakamura on a breathing machine for

only a short period of time. If he didn’t seem to be

improving, they would stop the breathing machine

and focus their attention on keeping him comfortable.

Suzy was thankful that her father had insisted on

discussing his wishes.

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What’s Next?Talk about it...Now that you’ve read through “The Basics” ofadvance care planning, you may feel ready to talkabout your wishes with your family and health careproviders. If you need help starting the conversation,see pages 46 to 50 for some ideas.

Learn more...You may still have some questions about advancecare planning. The “Resources” sections that follow

are designed to give you a betterunderstanding of specific topics. Youcan refer to only the sections that

concern you, or read it straightthrough—whichever works for you.

Write about it...Sometimes it helps to have a few thoughts on paper.Try pulling out the forms in the back of the bookand filling them out. Don’t worry about making themperfect—there are two sets of forms so you canalways go back and finalize your thoughts. Theimportant thing is to get started.

For more details:

➡ see page 21

➡ see page 30

➡ see page 34

➡ see page 51

Here’s a sample of the kinds of questions that areanswered in the Resources section:

• What makes life worth living?

• What’s likely to happen if you have a seriousstroke? What do you need to think about inadvance?

• What if someone you love needs a feedingtube? What are the pros and cons?

• What can you do to keep the courts out ofthese advance care planning decisions?

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Thought-provoking exercises.Which exercises should I complete?

You can complete any or all of them. Each of theexercises addresses different issues, including:

1. What to consider when choosing a spokesperson(page 20),

2. Your wishes regarding what makes life worth living(page 21),

3. Your personal and spiritual beliefs that affect medicaldecision making, and your feelings about hope andrisk taking (pages 22-23),

4. Your wishes regarding the way you might spend yourlast weeks or days if you were dying, and other relatedmatters (pages 24-26).

We recommend that you complete at least the exerciseson pages 21-24. These will be the most useful to others ifthey have to make decisions for you.

You may want to ask your religious advisor to help youthink through the questions about quality of life, medicalinterventions, and death and dying. Religions havedifferent philosophies about what to do under thesituations described in these exercises.

I don't like writing in books. Besides, I'm not readyto write down my answers. What should I do?

We have included a copy of these exercises in the back ofthe workbook. You can use these to draft your ideas.

What should I do with these exercises once I'vecompleted them?

• Use them to discuss your values with your loved onesand health care providers.

• Attach them to your advance directive as yourpersonal statement. They will provide greater detailsabout your wishes.

• Put your initials and date on each page so others willknow when you filled them out.

• Review them each year — your answers could changewith time.

20

Nam

es

Initials & Date:Who should speak for me?

Meets the legal criteria in my state for durable power of attorneyfor health care (see the instructions in the back pocket).

Would be willing to speak on my behalf.

Would be able to act on my wishes and separate her/his ownfeelings from mine.

Lives close by or could travel to be at my side if needed.

Knows me well and understands what’s important to me.

Could handle the responsibility.

Will talk with me now about sensitive issues and will listen to mywishes.

Will be available in the future if needed.

Would be able to handle conflicting opinions between familymembers, friends, and/or medical personnel.

Other issues important to me:

Choosing A Spokesperson

Instructions This exercise will help you choose the bestspokesperson for you. On the top of each column, write in thenames of one or more people you’re considering to be yourspokesperson. Place a check mark (✔) in the column for thatperson if the following statements are true. The first twostatements must be true for your spokesperson to have legalauthority to represent you. You should weigh how important theother attributes are to you in deciding your first choice.

21

Instructions To help others make sense out of your answers, think about the following questionsand be sure to explain your answers to your loved ones and health care providers.

If you checked "worth living, but just barely" for more than one factor, would a combination of thesefactors make your life "not worth living?" If so, which factors?

If you checked "not worth living," does this mean that you would rather die than be kept alive?

If you checked "can't answer now," what information or people do you need to help you decide?

a. I can no longer walk but get around in a wheelchair.

b. I can no longer get outside—I spend all day at home.

c. I can no longer contribute to my family's well being.

d. I am in severe pain most of the time.

e. I have severe discomfort most of the time (such asnausea, diarrhea, or shortness of breath).

f. I rely on a feeding tube to keep me alive.

g. I rely on a kidney dialysis machine to keep me alive.

h. I rely on a breathing machine to keep me alive.

i. I need someone to help take care of me all of time.

j. I can no longer control my bladder.

k. I can no longer control my bowels.

l. I live in a nursing home.

m. I can no longer think clearly-I am confused all the time.

n. I can no longer recognize family/friends

o. I can no longer talk and be understood by others.

p. My situation causes severe emotional burden for myfamily (such as feeling worried or stressed all the time).

q. I am a severe financial burden on my family.

r. I cannot seem to “shake the blues.”

s. Other (write in):

What makes your life worth living?

Life like this would be:

difficult, worth not can'tbut living, but worth answer

acceptable just barely living now

Your Beliefs and Values

Initials & Date:

Instructions This exercise will help you think about andexpress what really matters to you. For each row, check (✔)one answer to express how you would feel if this factor byitself described you.

22

I believe that it is always wrong to withhold (not start)treatments that could keep me alive.

I believe that it is always wrong to withdraw (stop)treatments that could keep me alive after they've beenstarted.

I believe it is wrong to withhold (not provide) nutritionand fluids given through tubes, even if I am terminallyill or in a permanent coma.

I do not wish to receive a blood transfusion or anyblood products, such as plasma or red blood cells.

I would like to have my pastor, priest, rabbi, or otherspiritual advisor consulted regarding any difficulthealth care decision that must be made on my behalf.

(write in name)

I believe in other forms of treatment, such as healingthrough prayer, acupuncture, or herbal remedies. Iwant the following treatments included in my care:

I believe that controlling pain is very important, even ifthe pain medications might hasten my death.

I believe that my loved ones should take their owninterests into consideration, as well as mine, whenmaking health care decisions on my behalf.

I believe that it is acceptable to consider the financialburden of treatment on my loved ones when makinghealth care decisions on my behalf.

I believe that my loved ones should follow mydirections as closely as possible.

Initials & Date:

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Yes Not sure No

Additional beliefs and/or explanations for my beliefs:

Instructions Circle yes, not sure, or no to indicate whether you agree with eachstatement. If you do not agree with the "always" statements, this could meanthat you agree with these statements some of the time, but not always. You canuse the space at the bottom of the page to explain and clarify your beliefs.


Personal and spiritual beliefsMany people have special personal or spiritual beliefs that they wantrespected in decision making about life-sustaining treatments. What are yours?

23

Initials & Date:

Weighing pros and cons of treatmentfor different chances of recovery

Hope for recoveryPeople have different feelings about hope that influence what health carethey want. What are your feelings about hope?

Imagine that you are very sick and have been told thatyou will very likely die soon.

I would want all possible treatments, even though mydoctors don't think they will help me, because I wouldhope for a miracle cure that would prolong my life.

Imagine that you have been in a coma for three weeks.The doctors think that the chance that you will everreturn to your previous state of health is very small.

I would want to be kept alive indefinitely because Iwould still hope for a new medical development thatwould help me to recover.

People evaluate the pros and cons of medical treatments in very personalways. This explains why some people choose a treatment and others rejectit. A big question is, how much would you be willing to endure if thechance of regaining your current health was high? What if the chance waslow? Answer the questions below to carefully evaluate your own willingnessto take such risks.

Yes Not sure No

Yes Not sure No

Imagine that you are seriously ill. The doctors are recommendingtreatment for your illness, but the treatments have very severeside effects, such as severe pain, nausea, vomiting, or weaknessthat could last for 2-3 months.

I would be willing to endure severe side effects if the chance thatI would regain my current health was:

high (over 80%) Yes Not sure No

moderate (50%) Yes Not sure No

low (20%) Yes Not sure No

very low (less than 2%) Yes Not sure No


24

a. Avoiding pain and suffering, even if itmeans that I might not live as long.

b. Being alert, even if it means I mightbe in pain.

c. Being around my family and closefriends.

d. Being able to feel someonetouching me.

e. Having religious or spiritual advisorsat my side when I die.

f. Being able to tell my life story andleave good memories for others.

g. Reconciling differences and saying“good-bye” to my family and friends.

h. Being at home when I die.

i. Being in a hospital when I die.

j. Being kept alive long enough for myfamily to get to my bedside to see mebefore I die, even if I'm unconscious.

NotImportant

ModeratelyImportant

VeryImportant

ExtremelyImportant

Initials & Date:

Instructions For each row, check (✔) one answer to express how importantthese issues would be to you if you were dying.

Choices about death and dying

k. What are your biggest hopes about the end of your life?

l. What are your biggest fears about the end of your life?

How would you like to spend your last days?Many people have strong opinions about what would be important to them atthe very end of their lives. For some, they want to express things they wouldlike to have happen. Others want to be sure that certain things they dislike orfear will be avoided. What are some of the things that you would hope for thatcould make your last weeks, days, or hours the most peaceful?

25

Other related mattersThe topics that have been covered up to this point have related to decisionsabout your health care in the event you could not speak for yourself. Yourdecisions about the next topics would go into effect after your death. Weinclude them here because they are related issues that you may want tocommunicate to others. There is a list of organizations and other resourceson page 52 if you need more information about these related matters.

Organ donation and autopsySometimes after death, organs and tissues can be used to help other peoplewho need them. Family members must give consent to transplant yourorgans. You can help them make this decision by letting them know how youfeel about this. After an autopsy, the body can be shown and buried.

I want to donate any viable organs/tissues.

If yes, have you filled out an organdonor card?

Have you told your family?

I consent to the use of all or part of mybody for medical research.

If yes, do you have a preference fora research institution?

Have you told your family?

I permit an autopsy.

Yes Not sure No

Yes Not sure No

Yes Not sure No

Instructions Circle one word to express how you feel.

Initials & Date:


Burial arrangementsPeople often leave instructions about what they want done with their bodiesafter they die. Some want to be buried in a particular place, perhaps in acemetery with other family. Other people would prefer to be cremated andhave their ashes put or scattered in a special place. You can indicate yourpreferences by answering the questions below.

I would prefer to be: (circle one)

I would like my remains to be placed:

Other preferences:

Buried Cremated No preference

26

Funeral or memorial servicesPeople have different ideas about funerals and memorial services. Theseservices are often very comforting to family and friends as they celebrate andhonor the life of their loved one. Services also can make a statement aboutone’s religious faith. Write in below any thoughts about a funeral or memorialservice such as where it should be held, songs or readings to be included,where donations should be sent, information for an obituary notice, or otherwishes.

Initials & Date:


27

More informationabout health conditions

and treatments

What will I learn from this section?

This section is intended to be a reference that will answeryour questions such as,

• What’s it like to be in a coma?

• What would happen if you needed CPR?

• Is being on a mechanical ventilator (breathingmachine) like being in an iron lung?

• What are the key things to think about when makingdecisions about life-sustaining treatments?

Where can I get answers to other questions?

If you still have questions after you’ve read these pages,you can:

• Ask your doctor. Take these pages with you to yournext appointment so your doctor can give you morespecific information about what these healthconditions and treatments might mean for you, givenyour current health condition.

• Call one of the organizations listed on page 52.

28

What is it?Coma is a state of unconsciousnessthat persists for some time. It maybe caused by a head injury, a severestroke, bleeding in the head, or asevere illness. A person who isunconscious shows little or nomovement or response to stimulation.It usually looks as though they wereasleep. A related and more seriouscondition is called persistentvegetative state (PVS). A person inPVS is unconscious but sometimesopens his or her eyes and may haveunintentional movements such asyawning, and random movements ofthe head or limbs. PVS usuallydevelops after about a month in acoma.

What’s it like?People who have been in a coma(and then come out of it) usuallysay they have no memory of anyawareness at all during the coma.These people generally report nomemory of pain or discomfort.Those few people who say theywere aware of things going onaround them or hearing what wasbeing said near them were not in atrue coma. Observation of comapatients typically shows no sign thatthe patient is in any pain or distress.People in coma do not get out ofbed, or communicate in any way.They are usually cared for in a

Comahospital or nursing home becausethey need to have all of theirpersonal care done for themincluding being fed through a tube,having their body wastes cleanedup, and being turned every fewhours to prevent bed sores.

What’s likely to happen?Just after a person goes into a coma,it is very hard to predict what willhappen. If and when the personcomes out of a coma depends on hisor her age, what caused it, and hisor her overall health. People havevery little chance of ever coming outof coma that was caused by illnessafter about 3 months, or one thatwas caused by a head injury afterabout 12 months. There are stages ofcoma. A person in a lighter stageof coma has a better chance ofcoming out of it than someone indeeper stages.

What are the key thingsto think about?Would you want to be kept aliveafter the point in time when yourdoctors think that you probablywon't ever come out of the coma?

Would you want to be kept alive ifthe doctors felt sure that if you wereto come out of the coma, you wouldhave permanent brain damage orother severe limitations?

Health Conditions

29

DementiaWhat is it?Dementia is a condition in whichthere is a loss of memory and othermental functions, serious enough toaffect interacting with other people.The most common types ofdementia are due to Alzheimer’sdisease, AIDS, and multiple strokes.Other types of dementia can occuras a result of head injury, heavy useof alcohol, or thyroid problems. Withthe most common forms ofdementia, mental functions getworse over time. These includememory, thinking, talking, problemsolving, and perception.

What’s it like?Some people in the early stage ofAlzheimer's disease maybe aware of their forgetfulness,but as the dementia progresses, theywill become totally unaware of theforgetfulness and other mentaldeficits. They will lose the ability toconcentrate. Later, there may bemood changes whereby they maylose interest in things around them,or become agitated or violent onoccasion even with family members.In still later stages, they becomesless active, less talkative. In the lateststages, they may no longer recognizeclose family or friends, lose theirsense of day and night, and wanderaround the house at odd hours.

What’s likely to happen?Most types of dementia areirreversible and will get worse overtime. Exceptions include dementiacaused by thyroid problems, as well

as memory problems due todepression which are treatable andmay be reversible. The speed ofdeterioration is unpredictable, butsevere dementia from Alzheimer'susually occurs within 5-10 yearsfrom the first signs of memory loss.In later stages, people with dementiabecome incontinent, losing controlof their bowels and bladder. Theyoften require nursing home carebecause they need daily help withfeeding, dressing, and bathing andthis is often more than most familiescan handle. As they lose interest ineating, complications of malnutritionsuch as infections and skin ulcerscan lead to death.

What are the key thingsto think about?If you had severe dementia and thenbecame ill with a reversible illness,such as pneumonia, would you wanttreatment even though the treatmentwould not help your memoryproblems? What if treatmentincluded going to the hospital?

If you were unable to eat enoughand were severely demented wouldyou want to receive your nutritionand fluids through a feeding tubeplaced directly into your stomach?

Some people with dementia seemhappy while others seem sad orupset. If you were severelydemented, how much should otherpeople pay attention to your moodwhen making decisions about whatit best for you?

Health Conditions

30

StrokeWhat is it?Someone who has sustained aninjury to a part of the brain, eitherbecause of a blockage in the bloodvessels, or a burst blood vessel, issaid to have had a stroke. Strokesrank third among all causes of deathand are a major cause of long-termdisability, but not all strokes causedisability. The kind of disability aperson develops depends on whatpart of the brain is damaged andhow severely. A stroke is alsoknown as a “cerebrovascularaccident,” or a CVA.

What’s it like?The most common effects of astroke are: (1) weakness or loss ofmovement and sensation in an arm,a leg, or both on one side of thebody, (2) difficulty speaking, (3)partial loss of sight in one or botheyes,(4) trouble swallowing, and (5)problems understanding what otherpeople are saying. Some peopleexperience changes in their mood orpersonality. Depression is commonamong people who have had astroke, often because of injury tothe brain.

What’s likely to happen?With the most minor of strokes, aperson has a loss of feeling or abilityto move a part of the body for lessthan a few days. With moderatestrokes, a person may lose the abilityto use one arm, need to walk withthe assistance of a cane or walker,and have some slurring of speech.With serious strokes, a person mightlose the use of one entire side of thebody, need assistance to get out ofbed and into a chair, or may not beable to speak or understand othersat all. With the most severe strokes,a person often loses consciousnessand falls into a coma. Most recoveryfrom strokes happens within the firstfew days up to about 3 months,though modest improvements maycontinue up to 12 months. After that,whatever disability remains islikely to be permanent.

What are the key thingsto think about?Every stroke is different and so is aperson's ability to adapt to losses infunction and disability. Many peoplefind that with time and help they canadjust to their new circumstancesafter a stroke. If you had a stroke,what level of disability do you thinkyou would want to live with? Arethere some situations that you wouldfind unacceptable? If so, whatare they?

Health Conditions

31

What is it?Every illness that causes death has aterminal stage. That stage is definedas the point when treatments can nolonger work to reverse the illness orkeep the disease from getting worse.No matter what treatments are given,the person is going to die within ashort time. It is very hard to predictexactly how much time a person hasto live at this stage, but most doctorsexpect they will live about sixmonths or less.

What’s it like?During a terminal illness peopleoften lose strength and becomeconfined to bed either in their ownhome, or if they need more help, ina hospital, nursing home, or hospice(see page 36). Their bodies willbegin to shut down. This may ormay not be accompanied by pain.Some terminal illnesses, such as thelater stages of cancer, can be painful,although medications can control thepain. Appetite usually diminishes.As people get closer to death theywill almost certainly think andcommunicate less clearly.

What’s likely to happen?Near death there are times whenpeople are not able to express theirwishes clearly. Some peopleexperience short periods of mentalconfusion, for example, they drift in

Terminal illnessand out of awareness over thecourse of a day. Many people lapseinto a coma just before they die. Forexample, they may becomedehydrated or develop an infectionthat, if it is not treated, could causedeath more quickly than theirprimary terminal illness. If thetreatments for these conditions aresuccessful, they would postpone themoment of death and might prolongany suffering or discomfortassociated with the terminal illness.

What are the key thingsto think about?If you had a terminal illness, whatwould be the most important thingfor you: relieving suffering orprolonging life?

What would be your goals fortreatment of any other problems ifyou had a terminal illness? Treatmentfor secondary problems (such asan infection) would not cure theprimary terminal illness (such ascancer or heart disease).

Health Conditions

32

this process, you would receive careto keep you as comfortable aspossible.

What are the good pointsof getting dialysis?Dialysis allows people with kidneydisease the chance to lead a near-normal life. Dialysis can relievesome of the symptoms associatedwith kidney failure. For thosepatients who are eligible for akidney transplant, dialysis can keepthem alive while they wait for adonor.

What are the bad pointsof getting dialysis?Dialysis takes over one of the manyfunctions of your kidneys, so it can'tdo as good a job as a healthykidney. Because of this, wasteproducts build up in your bodybetween dialysis sessions, whichmeans that at times, you may notfeel very well. You will have to becareful about the amount and typesof food you eat. You also will bemore prone to infections, bleedingfrom your stomach or bowel,swelling or bloating, and be easilyfatigued.

You will have to spend at least 12hours a week on a dialysis machine.You may have to travel to a dialysiscenter for care, which will involveadditional time and possibly helpfrom others.

If you have another serious illnessbesides kidney failure, especiallythose involving your lungs, liver,or heart, dialysis treatment may behard to take because of difficultiesregulating your body fluids andwaste products.

What’s the problem?If your kidneys stop functioning,waste products build up in yourbloodstream. As a result, you mayfeel sick to your stomach, tired,weak, have little appetite and haveswelling. In addition, you may havedifficulty breathing or thinkingclearly.

What’s kidney dialysis?Dialysis is a process in which yourblood is circulated outside yourbody into a machine that removeswaste products. A needle is insertedinto one of your veins (usually inyour arm) and an attached tubecarries a steady flow of your bloodinto the machine. After the blood iscleaned, it is returned to your bodythrough a second tube and needlethat is inserted into another part ofyour vein. You lie in a bed next tothe machine during each dialysissession, which usually lasts aboutfour hours. You probably have threesessions a week. If you need long-term dialysis, you have an operationto place a shunt (special bloodvessels) in your arm so the needlescan be inserted repeatedly over timewithout collapsing your veins.

What happens if I decidenot to get dialysis?If the waste products in yourbloodstream continue to accumulate,you will feel worse and worse. Aftersome time you will go into a comaand then (usually within a week),your heart will stop. How quicklythis occurs depends on your overallcondition, but can be between a fewdays to a month. If you go through

Kidney Dialysis

Treatments

33

CPR— Cardiopulmonary ResuscitationWhat’s the problem?During a life-threatening illness ora heart attack, your heart maysuddenly stop beating and you maystop breathing. Or your heart maybeat so irregularly that it no longereffectively pumps blood to yourbrain. These events mostly occurfor people with heart disease, butcan also occur without any knowncause. Soon after blood stopsmoving to your brain you will loseconsciousness and not be awareof anything going on around you.

What’s CPR?CPR involves vigorous pressing onyour chest to keep blood circulatingwhile electrical shock is applied toyour chest to “jump start” your heart.Mouth-to-mouth breathing is usedto restart your own breathing, or abreathing tube is placed into yourwindpipe and air is pumped intoyour lungs to help you breathe.You receive medications througha tube placed in one of your veins.Typically, all this goes on for about15-30 minutes.

What happens if I decidenot to get CPR?With or without CPR, you will almostimmediately lose consciousness.Without CPR, death will follow inabout five to ten minutes.

What are the good pointsof getting CPR?If you are in relatively good healthwhen you need CPR, it can returnyou to roughly the same state youwere in when your heart stopped.

For people with some types of heartdisease, CPR can restore an irregularheart beat. Pain or discomfort isnot an issue while you receive CPRbecause you are not consciousduring the process.

What are the bad pointsof getting CPR?After CPR, however, you could havea sore chest or broken ribs becauseof the electrical shocks and vigorousmassage. In addition, the chestcompressions could result in acollapsed lung, which would requireadditional treatment. Most peoplewho need CPR need a mechanicalventilator to support their breathingafterwards.

The success rate for CPR dependson many things: your overall healthwhen you need it, where you getit (in the community or in the hospi-tal), your age, and how quickly itstarts after your heart stops beating.If you are under age 65, the successrate ranges between 25-40%. If youare over age 65, this rate drops tobetween 1-4%. CPR is rarely success-ful if you already have a chronicillness that affects your vital organs,such as your heart, lungs, liver, orkidneys. Less than ten out of 100hospitalized patients respond to CPRby returning to the state they werein before their heart stopped. Ofthose who survive, many continue tolive, but in a weaker state or withsignificant brain damage becauseblood could not get to their brain intime. CPR could keep you fromdying, but you might live in a comaor be unable to think clearly.

Treatments

34

What’s the problem?You may find yourself unable toswallow food. This could happenafter an accident that damages yourthroat. It could also happen if youare unconscious or have some kindsof brain damage. When this happensyou will be unable to take in enoughfood and water by mouth to keepyourself alive.

What’s a feeding tube?A feeding tube is used to carry liquidnutrition and fluids into your body.One kind of tube goes up your nose,down your throat, and into thestomach. This is called a nasogastrictube. It is about 1/8 of an inch indiameter. Another kind of tube issurgically placed into the wall ofyour stomach. The operation isquick and safe and you will feel littlediscomfort. Once the tube is in placeit is painless.

What happens if I decidenot to get a feeding tube?If you don’t receive any nutrition orfluids you will fall into a state muchlike a deep sleep. This will takeabout one to three weeks, duringwhich time, you will be keptcomfortable. For example, ice chipson your lips will help keep themmoist. Usually, after several days,you will no longer experience thirstor hunger. Also, you will not feelpain as easily as you do now. Withina day or two after you enter thisdeep sleep, your heart will fail anddeath will follow within five to tenminutes.

Feeding Tubes - Artificial deliveryof nutrition and fluids

What are the good pointsof getting a feeding tube?A feeding tube can provide yournutritional and fluid needs. Withadequate nutrition, you will be lesslikely to get bedsores. A feeding tubeis not painful, although the kind thatgoes down your nose (nasogastrictube) can be uncomfortable. Thesurgically placed stomach tube is easyto manage without help from othersas long as you can take care ofyourself. With this kind of tube, youcan pour the liquid nutrition into thetube, move about and bathe, all onyour own. This tube is placed underyour clothes, so other people wouldnot know you have one.

What are the bad pointsof getting a feeding tube?Having a tube down your throat willfeel somewhat uncomfortable andunpleasant, although not truly painful.You could aspirate liquid (get it intoyour lungs) which can causepneumonia. With either tube, you willnot be able to taste anything.Receiving fluids might make it harderfor you to control urination if you areconfined to a bed.

If you are already in the terminalstage of an illness, a feeding tubewill likely postpone your death. Tubefeeding also makes it possible (insome cases) to keep people alivewho are in a coma, have severestrokes, or severe dementia for a longtime, even if they might not havewanted it.

Treatments

35

What’s the problem?You may not be able to breathe onyour own for a number of reasons.Perhaps you have been in anaccident that has damaged yourairways. You might have a seriouslung disease, or maybe you havesuffered brain damage. You needa machine to breathe for you, eitherfor the short term (a few hoursto a few days) or for the long term(the rest of your life). It may beimpossible to tell how long youwill need it.

What’s a mechanicalventilator?Mechanical ventilators (also calledbreathing machines or respirators)completely take over the task ofbreathing. A tube is placed into yourwindpipe, either through yourmouth or nose or through a smallsurgical incision at the base of yourneck. The tube is about 3/4 of aninch in diameter, about as big as adime. The tube will make it hard orimpossible to talk. Most patients ona mechanical ventilator are in ahospital, usually in an intensive careunit. They are usually not able to getout of bed. In some situations, aportable ventilator allows a patientwho is completely paralyzed to getaround in a specially-equippedwheelchair.

What happens if I decidenot to get a mechanicalventilator?Without some external breathingassistance, you will die quickly. Ifyou stop breathing, you will die

within five minutes. You could begiven medications that will sedateyou. These medications help yourelax so you will not panic or feellike you are struggling for breath.

What are the good pointsof getting a mechanicalventilator?Mechanical ventilation is a painless,although often uncomfortable, way tocontinue your life. It is often neededfor only a short time, for example,just long enough to let your bodyrecover from a serious illness. Insome cases, it can relieve thediscomfort of feeling breathless. Ifyou need a ventilator for a long time,it can sustain your life indefinitelywhen you might otherwise die.

What are the bad pointsof getting a mechanicalventilator?Even if you are conscious, you willnot be able to talk very well or at all.You will likely be confined to bed.You will also be dependent on othersto bathe, feed, and dress you and totake care of your bowels and bladder.Nurses will also need to suction yourlungs to keep them clear of mucous.It may be hard to tell how long youwill need to be on a ventilator. If youhave a terminal illness, a mechanicalventilator will only prolong dying.

Mechanical Ventilators(Breathing machines)

Treatments

36

discomfort. They are not just forpeople who are in the last months oflife or who are getting hospice care.

What happens if I decidenot to get hospice care?Your health care providers willcontinue to treat new symptoms orinfections as they occur. They willtreat you either in or out of ahospital, depending on how muchcare you need. They tend to focuson relieving discomfort due tophysical symptoms. They often donot focus on addressing theemotional and spiritual needs ofdying people.

What are the good pointsof getting hospice care?Hospice care is a holistic approachthat focuses on helping dying peoplemake the most out of each day.

Many people seek hospice care sothey can die at home. Hospice cansupport the patient and family tomake this happen.

What are the bad pointsof getting hospice care?Agreeing to hospice usually meansthat patients must recognize andaccept that their illness cannot becured and that they will probably diein the next 6 months. Some peopleview this as a failure because theythink it means they are giving up.

Usually, getting hospice care athome means that patients must havefamily or friends who can providehands-on care up to 24 hours a day.Therefore, sometimes it's easier forpatients, as well as their loved ones,to get their final care in a hospital.

What’s hospice care?Hospice is an approach to caring forpeople with terminal illness. Thegoal of hospice is to provide comfortcare to control pain and otherphysical symptoms, and deal withthe emotional and spiritual needs ofdying persons and their families inthe last 6 months of life.

Hospice care usually involves a teamof professionals, including a nurse, asocial worker, a doctor (although notalways your personal doctor) and achaplain or other spiritual advisor.Other health care providers andvolunteers, such as physicaltherapists and chore workers, arecalled in as needed.

Hospice care can be provided in thehome or in special care units inhospitals and nursing homes. Thehome hospice team usually comes tothe house 1-3 times a week, but isavailable by phone 24 hours a day.

What are palliative care andcomfort care?The terms palliative care andcomfort care are both used to meanrelieving symptoms and minimizingdiscomfort. Examples includemedications and other treatments tocontrol pain, nausea, fatigue andshortness of breath. They alsoinclude nursing care to keep youclean, dry, and comfortable.

Sometimes, curative treatments, suchas antibiotics, blood transfusions,chemotherapy, or even surgery, areoffered to patients as palliative carebecause these treatments can makethem more comfortable.

Palliative and comfort care should begiven to all people experiencing

Hospice and Palliative (Comfort) Care

Treatments

37

Your specific health carepreferences

Why should I fill these out?

• These forms are very specific about your wishes. Youcan attach them to your advance directive to provide adetailed picture of your preferences.

• In conditions when you can't speak for yourself, healthcare providers want to know how you feel aboutdifferent treatments, especially CPR, mechanicalventilators, and feeding tubes. These forms will makeit easier for your family and health care providers togive you the care you want.

Why are there 3 parts to each page?

The 3 parts reinforce each other. Treatment decisions areoften based on thoughts about quality of life. Forexample, if people think that life with severe dementiawould be difficult but acceptable, they might want sometreatments but not others that would keep them alive.

• Part A lets you express your feelings about the qualityof life for each of the different health conditions. This ishelpful for your loved ones and caregivers.

• Part B gives a clear message about each treatment.This is very useful to health care providers.

• Part C gives you room to explain your reasons forParts A & B, such as why you would want sometreatments but not others.

Why does comfort care have a checkmark (✔)?

Because no matter what else you decide, your health careproviders will alway try to give you medications and careto keep you clean and comfortable.

38

Current HealthThe information on this page could help others make decisions for you ifyou become unable to speak for yourself. The first part will give others anoverall sense of how you view your current health situation.

Part A: Feelings about quality of life

Part B: Preferences for different life-sustaining treatmentsImagine that you develop a life-threatening illness and couldn't speak foryourself. The doctors feel there is a good chance you would recover to yourcurrent health, but you might need one or more of the following treatments.

Check the answerthat best describeshow you feel aboutyour current health.

My life rightnow is worthliving, but just

barely

My liferight now

is justfine

My liferight now isdifficult, butacceptable

My liferight now is not worth

living

Part C: Reasons for my decisions or other comments

I wouldwant toreceive

thistreatment

I wouldrather die

naturally andnot have this

treatment

I don’tknow/can’t

answerright now

Check an answer for each treatmentthat best reflects what you would want.

Antibiotics

CPR

Feeding tube: for a short time

for the rest of my life

Dialysis: for a short time


Mechanical ventilator: for a short time


Comfort care

Other treatments: (fill in)✔

Initials & Date:

Specific Health Care Preferences

39

Permanent ComaImagine you are in a permanent coma (see pg. 28 for details). This means you:• do not think, hear, or see anything• are not in any pain• are confined to a bed because you cannot move• need 24-hour nursing care for bowel and bladder functions and skin care

Check the answer thatbest describes how youwould feel about beingin a coma for the rest ofyour life.

Part B: Preferences for different life-sustaining treatmentsImagine that while you are in a coma, you develop a life-threatening illness.The doctors feel that no matter what treatment you receive, you will remain ina coma, but the treatment will keep you from dying.


Life like thiswould be worthliving, but just

barely

Life like thiswould be

difficult, butacceptable

Life like thiswould notbe worth

living



thistreatment

I wouldrather die


treatment


answerright now


Antibiotics

CPR







Comfort care


Initials & Date:


40

Severe Dementia

Check the answer thatbest describes how youwould feel about havingsevere dementia for therest of your life.

Part B: Preferences for different life-sustaining treatmentsImagine that while you have this dementia, you develop a life-threateningillness. The doctors feel that no matter what treatment you receive, you willremain demented, but the treatment will keep you from dying.



barely




living

Part C: Reasons for my decisions or other commentsWould your answers be different if you seemed happy most of the time? Yes NoWould your answers be different if you seemed unhappy most of the time? Yes NoHow?


thistreatment

I wouldrather die


treatment


answerright now


Antibiotics

CPR







Comfort care


Initials & Date:


Imagine you have severe dementia (see pg. 29 for details). This means you:• cannot think or talk clearly, are confused and no longer recognize family members• seem uninterested in what's happening around you• are not in any pain• are able to walk, but get lost without supervision• need help with getting dressed, bathing, and bowel and bladder functions

41

Severe StrokeImagine you have had a severe stroke (see pg. 30 for details). This means you:• are able to think, but your ability to understand what is said to you and

communicate with others is severely limited• have aches and pains that make you uncomfortable most of the time• are able to walk with a walker, but most of the time you get around in a wheelchair• need help with getting dressed, bathing, and bowel and bladder functions

Part B: Preferences for different life-sustaining treatmentsImagine that in addition to the stroke, you develop a life-threatening illness. Thedoctors feel that no matter what treatment you receive, you will still have yourstroke-related problems, but the treatment will keep you from dying.


Check the answer thatbest describes how youwould feel about a severestroke for the rest ofyour life.


barely




living



thistreatment

I wouldrather die


treatment


answerright now


Antibiotics

CPR







Comfort care


Initials & Date:


42

Terminal IllnessImagine you are expected to die within the next two months (see pg. 31 fordetails about terminal illness). This means you:• have days when you drift in and out of awareness• have a lot of discomfort that requires medication• are in bed most of the time due to weakness• need help with getting dressed, bathing, and bowel and bladder functions

Part B: Preferences for different life-sustaining treatmentsImagine that in addition to the terminal illness, you develop a life-threateningillness. The doctors feel that no matter what treatment you receive, you will getweaker and die in about 2 months, but the treatment will keep you from dyingimmediately.


Check the answer thatbest describes how youwould feel about havinga terminal illness.


barely




living



thistreatment

I wouldrather die


treatment


answerright now


Antibiotics

CPR







Comfort care

Hospice

Other treatments: (fill in)

✔

Initials & Date:


43

A future situation of concernwhen I might not be able to express my wishesMy doctor has told me that given my particular circumstances, I could end up like(write in a description of possible future situations):


Check the answer thatbest describes how youwould feel about thissituation.


barely




living



thistreatment

I wouldrather die


treatment


answerright now


Antibiotics

CPR







Comfort care


Initials & Date:


Part B: Preferences for different life-sustaining treatmentsImagine that in addition to the situation described above, you develop alife-threatening illness and are unable to communicate. The doctors feel thatno matter what treatments you receive, you will still have the problemsdescribed above, but the treatmentswill keep you from dying.

45

How to talk aboutyour wishes

How can this section help me?

• Talking about end-of-life issues is often difficult, bothfor you and your family. We've included some samplescripts to give you specific ideas about how to startand get family and care providers to listen to you.

• This section also gives you tips on how to make surethat your family and health care providers not onlyhear you, but understand you.

• There is a list of nine issues to discuss, so you'll besure to cover all the important points.

• The last page has questions and answers about legaland ethical issues to consider as well.

46

Perhaps the single most importantstep in advance care planning istalking about your wishes withwhomever might be called upon tospeak for you. Whether or not youcomplete a formal advance directive,you still need to express yourpreferences clearly to your lovedones and health care providers.

Talking with your loved ones andhealth care providers can also helpyou think about what you want.Often they will ask you questions ortell you things that will make youthink about your wishes in anotherway. The more thoroughly andclearly you communicate, the easierit will be for everyone to do theright thing.

Starting the discussionThere is no "right" way to start thisconversation. Nor is there a "right"time. The best thing to do is make atime and get started. But what ifloved ones resist? What if they makeexcuses like, “You’ve got a lot of lifeleft in you—why do we have to talkabout this now?” Here are somesuggestions for getting started:

• Relate a story from this book.If there was a story from the firstpart of this book that got yourattention, it may also get theattention of the person you want totalk to. Share this story with them tolet them know what you areconcerned about and why this isimportant to you.

Talking about your wishes.• Remind them of a situationsomeone else experienced.Another way to introduce the topic isto think about stories of friends orrelatives who experienced an illnessand faced a difficult situation. Youcould start the conversation saying,

“Do you remember what happened toso-and-so and what his family wentthrough? I don’t want you to have togo through that with me. That’s why Iwant to talk about this now, while wecan.”

• Be firm and straightforward. Ifsomeone puts you off out of theirown discomfort, you could say,

“I know this makes you feeluncomfortable, but I need you to bearwith me and hear what I have to saybecause it’s very important to me.”

• Point out the possibleconsequences of not talking now.Someone may be more willing to talkif you start by saying something like,

“If we don’t talk about this now, wecould both end up in a situation thatis even more uncomfortable. I’d reallylike to avoid that if I could.”

• Use a letter, tape, or videorecording. It may be easier forpeople to hear what you have to sayinitially if you aren’t there. So youcould ask them to read a personalletter, listen to a tape, or watch avideo in which you express yourfeelings and preferences. Afterwards,they may be more ready to sit downand talk with you.

Communicating Your Wishes

47


Asking someoneto be your spokespersonWhen you ask someone to be yourspokesperson, you are asking themto assume a big responsibility thatyou both want to be comfortablewith. To ease into the conversation,you might ask questions like:

“Would you be willing to representmy views about medical decisions if Ican’t speak for myself?”

“Can you make decisions for me thatare based on my values, preferences,and wishes—even if they’re not likeyours?”

You do not want this person toagree to be your spokesperson ifthey really have strong misgivingsabout it. So be sure to tell them thatyou will not be offended or hurt ifthey feel they cannot do this for you.

If the person agrees to be yourspokesperson, you can reassurethem that you are not expectingthem to be “superhuman” or all-knowing. Give them explicit per-mission to make decisions for you,especially for those situations thatyou haven’t discussed or couldn’tpredict.

Who else should you talk to?Think about the people who play animportant part in your life. Then tryto imagine a time when you areeither seriously ill or injured andunable to communicate. Whowould you want to be around atsuch a time? These are the peopleyou should make a point of sharing

your feelings with now. They mightinclude:

• Your spokesperson • Family

• Health care providers • Friends

• Other caregivers • Clergy

You do not need to speak to every-one at the same time. However, itcan be helpful to talk to your familyas a group so that they all hear whatyou have to say in the same way.

What if you don’t haveclose family or friends?Your best option is to write downyour wishes, either in an advancedirective or personalized statement, orboth. You could also make a tape orvideo recording of your wishes. Thenbe sure to share it with your healthcare providers.

48

Nine importantissues to discussWe recommend that you talk aboutthe following issues. Discussingthem will help avoid confusion,conflict, and hurt feelings betweenloved ones and care providers.

1. Your Choice of aSpokesperson—Let your lovedones and care providers know whoyou have chosen to be your spokes-person—and why. This is especiallyimportant if your spokesperson isnot a member of the family. Youmight say something like this:

“I’ve asked so-and-so to be myspokesperson in case I need medicalcare but can’t speak for myself. Mychoice is not a reflection of myrelationship with you. But aftercareful thought, I feel that he/she isthe right person to handle thisresponsibility for these reasons...”

2. Your Beliefs—Tell those close toyou what it is that makes life worthliving, as well as what would make itunbearable—and why. If you havefears about being a burden, explorethese feelings with those who willcare for you. Family members oftenview caring for loved ones as anhonor—not a burden. Use theexercises in this workbook to helpyou talk about these issues.

3. Health Conditions—Share howyou feel about being kept alive inconditions that could leave youunable to speak for yourself.

4. Life-sustaining Treatments—Share how you'd feel about differentmedical treatments, includinghospice, and under whatcircumstances you would or wouldnot want to receive them.


5. Your Vision Of A Good Death—Ifyou hope to die in a certain way—whether it’s at home, in your sleep,with family by your side, or free ofpain—tell people.

6. Organ Donation—If you’d likeothers to benefit from your healthyorgans after your death, make sureyou family understands this becausethey must give their permission.

7. Funeral Arrangements—Shareyour thoughts about what you wantto be done with your remains. Ifyou have ideas about what youwould like for a memorial serviceor how you’d like an obituary to read,talk about that too.

8. Documentation Of YourWishes—If you’ve decided tocomplete an advance directive orwrite a personalized statement, tellpeople where they can find thisinformation in the future.

9. Helping others use yourpersonalized directive—Instructional directives and personalstatements can be understood eitheras specific instructions, or as generalguidelines. You can help othersinterpret your written wishes byincluding something like this in yourdocument:

“I would like the statements in mypersonalized directive followed tothe letter.”

“I would like the statements in mypersonalized directive to be used asa general guide.”

“I want those statements that I’vemarked with a star (*) followed tothe letter because I feel very stronglyabout them. Use the rest of mystatements as a general guide.”

49

Talking to your health careprovidersHere are a few reasons why it isimportant to talk to your health careproviders about advance careplanning:

• They need to know that you’vedocumented your wishes in anadvance directive or personalizedstatement. Without this knowledge,your health care providers couldmake treatment decisions that maynot agree with your wishes.

• You want to be sure that they willinterpret your wishes or youradvance directive in the way youintend. If they believe your wordsmean one thing, while yourspokesperson or family membersinterpret it differently, you'llprobably get treatment until they canresolve their differences.

• Your health care providers cananswer questions you may haveabout different health conditions,treatments, and your prognosis.

Make a special appointmentTo make sure you've got theirattention, make a specialappointment with your health careprovider to talk about this. Healthcare providers are people too—someare uncomfortable talking aboutend-of-life issues, or have otherthings on their mind. You don'twant to be in a hurry when youhave this conversation.

If your health care provider wants tojust file your advance directive inyour chart without discussing it,don’t let that happen! Make surethey know why you feel the wayyou do. This will make it easier forthem to understand and follow yourwishes.

What to sayTo help you organize your thoughtsand cover all the important issues,bring a copy of your advancedirective and any exercises youcompleted from this workbook,particularly those on pages 20-24and 38-43. Also during thisappointment, you may want to asksome or all of these questions:

“Given my current health, am I atrisk of facing a situation when Imight not be able to communicate?”

“Is there anything about my currenthealth that would compromise thelikelihood of success of differenttreatments?”

“Can I count on you to respect mywishes and contact my spokespersonif I’m unable to speak for myself?"

“What if you’re not the health careprovider who’s there when I needcare? How will the other health careproviders know about my wishes?”


50


Reviewing your wishesWith all the advances in medicineand health care, it's a good idea toreview your wishes from time totime. Values and preferences forhealth care often change with age orwhen there are changes in yourhealth condition. When and howoften you review your wishesdepends on your circumstances.

Changes in your familysituationIf your spokesperson moves, you geta divorce, or a family member dies,you may need to rethink who willspeak for you.

When you are healthyWhen you're healthy, a periodicreview prepares you and your familyfor emergency situations, such as acar accident or a sudden illness.Here are some ideas about goodtimes to schedule these reviews.

• Just before an annual check-upwith your health care provider.You'll refresh your memory aboutwhat you said last year, and then beready to talk about new questions orconcerns at your appointment.

• Special anniversary dates.Some people pick dates such as abirthday or the first day of spring.By picking the same date every year,it gets on your "to do" list andbecomes a part of your routine.

• Holidays or other familygatherings. Others like to do thisduring these times so they can takeadvantage of having everyonetogether in the same place. Thismakes it easier to share their viewswith everyone all at once.

When your health changesAnother important time to think aboutyour wishes is if your healthcondition changes, especially if ittakes a turn for the worse. Here aresome things to think about in thesecircumstances.

• Adjusting to new limitations.People often think that if they hadphysical or mental limitations their lifewould be terrible. But some peopleadjust to limitations and disability andfind that life still has a lot to offerthem. After you've given yourselfsome time to get used to your newsituation, take another look at theexercise on page 21 to see if yourthoughts have changed about whatmakes life worth living.

• Concerns about being a burden.It's normal for people with newlimitations to feel like they are aburden because they need more helpfrom others. But be sure to ask yourfamily members what it means tothem to be a burden before you"spare" them. You may be takingaway their chance to return the gift ofthe love and care that you've giventhem.

When you are dyingAfter people learn they are dying,they often rethink their priorities.Their attention often shifts to makingthe most of the time they have left.The exercise on page 24 can help youfocus on what's important at this time.

51

Legal and ethical issuesof advance care planningQ: What do I need to do to makesure my advance directive is a legaldocument?

A: Generally speaking, you needto sign your advance directive andhave it witnessed. There areinstructions with the forms in theback pocket that cover the steps youneed to take to make your directivea legal document.

Q: Will my advance directive belegal in all 50 states?

A: The laws vary from state to state,but most states will recognize theintent of an advance directive. If youhave a home in more than one state,check with your health care provideror a lawyer in each state—one formmight work for all places.

Q: Do health care providers have tofollow my advance directive?

A: Yes, but if they disagree with thepreferences you indicate in youradvance directive, they should referyour care to another provider. In aminority of cases, providers have“overruled” patient directivesbecause they felt that thecircumstances at the time did notmatch what was written.

Q: What if family members and/orproviders disagree about how tointerpret my directive?

A: Most health care facilities havean Ethics Committee who can helpresolve disagreements betweenfamily members or family membersand providers. Talking with yourcaregivers ahead of time can helpavoid future conflicts.

Q: Is withdrawing treatmentconsidered suicide?

A: Most people would say "no."Withdrawing or stopping a treatmentafter it has been started, is one waythat patients can exercise their rightto refuse treatment especially if thetreatment does not seem to beachieving the desired goal. However,some religions believe otherwise.You may want to check with yourreligious advisor to be sure.

Q: What is the difference betweenwithholding and withdrawingtreatment?

A: From an ethical and legalstandpoint, there is no differencebetween these two: both are ways tostop unwanted or ineffectivetreatments. However, not allreligions agree with this view—again, you should check with yourclergy. Also, some people feel it isharder to withdraw treatment once itis started than to withhold it. Buthaving the option to withdrawtreatments means that doctors cangive treatments a try, then stop themif they aren't working.

Q: Can I specify that I want assistedsuicide in my directive?

A: No. Assisted suicide is currentlyillegal. However, even if it becomeslegal, the person making the requestwould have to be competent andable to change their mind at the timeof the suicide. Advance directivesonly go into effect when you are nolonger competent to make decisions.

Legal and Ethical Issues

52

Other ResourcesContact any of the following organizations for more information about topicscovered in this workbook. Many of the national organizations have localchapters. Call the numbers listed for a referral to the chapter nearest you.Each organization also has a wealth of information on the World Wide Web,with links to other sites and organizations. Visit them at the internet addresseslisted below.

Disease-related groupsAlzheimer's Association(800) 272-3900Internet: www.alz.org

American Cancer Society(800) 227-2345 (800-ACS-2345)Internet: www.cancer.org

American Diabetes Association(800) 342-2383 (800-DIABETES)Internet: www.diabetes.org

American Heart Association(800) 227-8721 (800-AHA-USA1)Internet: www.americanheart.org

American Lung Association(800) 586-4872 (800-LUNGUSA)Internet: www.lungusa.org

National Kidney Foundation(800) 622-9010Internet: www.kidney.org

National Stroke Association(303) 649-9299Internet: www.stroke.org

Advance directivesChoice in Dying(800) 989-9155 (800-989-WILL)Internet: www.choices.org

HospiceNational Hospice Organization(703) 243-5900Internet: www.nho.org

Organ & Tissue DonationCoalition on Organ & Tissue

Donation(800) 355-7427 (800-355-SHARE)Internet: www.infi.net/%7Edonation

Funerals & CremationNational Funeral Directors Association(800) 228-6332Internet: www.nfda.org

Neptune Society (cremation)(800) 201-3315www.neptunesociety.com

http://www.neptunesociety.com

http://www.alz.org

http://www.cancer.org

http://www.diabetes.org

http://www.choices.org

http://www.nho.org

http://www.infi.net/%7Edonation

http://www.americanheart.org

http://www.lungusa.org

http://www.kidney.org

http://www.stroke.org

http://www.nfda.org

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