Your Life Your Choice Death Book

8/14/2019 Your Life Your Choice Death Book

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Your Life

Your Choices Planningfor FutureMedical

Decisions:

How to

Prepare a

Personalized

Living Will


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Your Life

Your Choices

Authored by

Robert Pearlman, MD MPHHelene Starks, MPH

Kevin Cain, PhD

William Cole, PhD

David Rosengren, PhD

Donald Patrick, PhD MSPH

Design & Layout by

Brems Eastman & Partners

Information Design Seattle

Planning forFuture MedicalDecisions:

How to Prepare

a PersonalizedLiving Will


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"What should we dofor Dad?"

Your Life, Your ChoicesTheres only one person w ho is truly qualified totell health care providers how you feel aboutdifferent kinds of health care issuesand thats you.But, w hat if you get sick, or injured so severely thatyou cant com m unicate w ith your doctors or fam ilym em bers? H ave you thought about w hat kinds ofm edical care you w ould w ant? D o your loved onesand health care providers know your w ishes?

M any people assum e that close fam ily m em bersautom atically know w hat they w ant. B ut studieshave show n that spouses guess w rong over half thetim e about w hat kinds of treatm ent their husbandsor w ives w ould w ant.

You can help assure that your w ishes w ill 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 werent 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 w hat kinds ofsituations you m ight face and the options for care.

Write.W rite dow n your w ishes so your loved onesw ill have a record of w hat you told them . This also

helps if no one is around w ho 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 w hat kinds ofcare you w ould w ant indifferent situations.
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Part I: The Basics.This 14-page section introduces and discussesall of the im portant com ponents of advance care planning. Youm ay find it provides enough inform ation for you to figure outw hat you w ant and express yourw ishes to others.

Part II: Resources.Turn to thesesections for additional help andfurther explanation of ideasand topics introduced inThe Basics.

Two ways to use this book.Spend an hour w orking through The B asics.Then com m unicate.

OR

W ork through The Basics.Take another hour or tw o to w orkthrough all or part of Resourcesfor a m ore com plete approach.Then com m unicate.

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

COMMUNICATE

COMMUNICATE


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TABLE OF CONTENTS

The Basics

Why do you need to think now about future healthcare decisions? ......................................................................... 5

Do you have strongly-held beliefs that should guide

your care? ................................................................................ 6If you couldnt speak for yourself, what would you

want done for you? .................................................................. 7

Who will speak for me if I cant speak for myself? ................ 8Common 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 .......................................................................... 13Stroke ......................................................................... 14

Terminal illness .......................................................... 15

Telling others what you want ..................................... 16Writing it down ........................................................... 17

Whats next? ............................................................... 18

Thought-provoking exercisesIntroduction.. ...................................................................... 19

Your Beliefs and ValuesWho should speak for me? .................................................... 20

What makes your life worth living?....................................... 21

Personal and spiritual beliefs ................................................. 22Hope 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? ....................... 24Organ donation and autopsy................................................... 25

Burial arrangements ............................................................... 25Funeral or memorial services ................................................ 26


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Health conditions and treatmentsIntroduction .. ...................................................................... 27

Health conditionsComa........................................................................................ 28

Dementia ................................................................................. 29Serious stroke .......................................................................... 30

Terminal illness ....................................................................... 31

TreatmentsKidney dialysis ........................................................................ 32

CPR-Cardiopulmonary Resuscitation ..................................... 33

Feeding tubes .......................................................................... 34Mechanical ventilators (breathing machines) ......................... 35

Hospice and palliative care ..................................................... 36

Your health care preferencesIntroduction.. ....................................................................... 37

Care preferences under di fferent health condit ionsCurrent health.......................................................................... 38

Permanent coma ..................................................................... 39Severe dementia ..................................................................... 40

Severe stroke .......................................................................... 41

Terminal illness ...................................................................... 42A future situation of concern................................................... 43

How to talk about your wishesIntroduction. ........................................................................ 45

Talking about your wishesStarting the discussion ............................................................ 46Asking 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 ............................................. 48Talking to your health care providers ..................................... 49

Reviewing you wishes ............................................................ 50

Other issuesLegal and ethical issues of advance care planning ................. 51


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Why do you need to thinknowabout future health care decisions?W hether you are young or old, healthy or sick, there

m ay com e a tim e w hen an im portant decision needsto be m ade about your health care. And w hether itstom orrow or five years from now , theres no guaranteethat you w ill be able to express your w ishes foryourself at that tim e. Consider the Larsen fam ily:

Chris Larsen never told his family what kind

of medical measures hed 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 wasnt a quitter, but he wanted to die naturally

he would be horrified to be kept alive this way.

In fact, Trudys view s w ere the closest to M r. Larsens

true opinion. But the fam ily never had a w ay to findthis out. They treated his pneum onia and he livedanother year in the nursing hom e w ithout recoveringhis ability to com m unicate or care for him self.

This story show s w hy it is so im portant to discussyour w ishes. Talking w ith your fam ily and health careproviders ahead of tim e can prevent confusion andhelp ease the burden on them .


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Think ahead. Im agine being in a critical condition

one in w hich you w ere unable to com m unicate yourw ishes. If m edical decisions could m ean the differ-ence betw een life and death, w hat w ould you w antyour loved ones and health care providers to do?

Your strongly-held beliefs can guide these choicesbecause they help others understand w hat you valueabout life. But be sure to explain your beliefs becausepeople often use the sam e w ords to m ean verydifferent things. Consider the cases of M rs. Santiniand M rs. Johnson, both deeply religious w om en.

"I want to be kept alive as long as poss ible,"

Maria Santini has said on many occasions. "Life is

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

"When my time comes , keep m e c omfortable."

Irene Johnsonalso believes life is sacred. However,

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

dont want anything done just to keep me alive."

Because M rs. Santini and M rs. Johnson bothbelieve that life is sacred, m any people w ouldassum e that their view s on being kept alive w ouldbeen the sam e. But, as youve seen, its not thatsim ple.

H ere's another exam ple. H ave you ever heardanyone say, If Im a vegetable, pull the plug?W hat does this m ean to you? W hat's a vegetable?W hat's a plug? Even people w ho live together can

have very different ideas about w hat the sam e w ordsm ean w ithout know ing it. The story of M ay andJohn W illiam s show s how im portant it is to bespecific about w hat you m ean.

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

When you say, pull the plugit could mean a variety ofthings:

Stop the breathing machin 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, its when she cant take care of

herself. John was surprised. For him, being a

"vegetable" is much worse. "Its when my brains not

working but my body is being kept alive by

machines."

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

People have very differennotions of what it means be a vegetable. Here ar

some more examples: You sit in a chair and

dont do anything all day You cant read anymore Youre just a body with

some life in it.

If you couldnt speak foryourself, what would you wantdone for you?Think about the follow ing statem ents. D o you agreew ith any of them ? D iscussing your answ ers w ithothers can help them understand w hat is im portantto you and w here you stand w ith 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 what

my family thinks is best for me.

I'd want to have my pain controlled, even if the

medications make me sleepy or make it difficult to have

conversations with my family.


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Who will speak for me if Ican't speak for myself?For people w ith close fam ily m em bers, choosing

a spokesperson m ay seem sim ple. If you arem arried, your health care providers w ill ask yourspouse to speak for you. If you are not m arried,other relatives usually are consulted. H ow ever, ifthese people disagree, it can be very difficult forhealth care providers to know w hom to listen to.

Som etim es your closest next-of-kin is NO T theperson you w ould like to speak for you. In that case,you can form ally appoint the person of your choiceto be your "voice." You can give this person thelegal authority to m ake health care decisions for you

using a "durable pow er of attorney for health care."The follow ing story show s w hy this is so im portant.

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 thiswith his brother. But because Mrs. Jergen was not

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

doctor followed his brothers advice.

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


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Common questions aboutchoosing a spokesperson.Q: What happens if I dont appoint a spokesperson?

A :H ealth care providers w ill consult w ith som eoneclose to you. They w ill usually contact your next-of-kin, starting w ith your spouse. If you are m arriedand w ant your spouse to be your proxy, then doingnothing is probably O K . If you are separated fromyour spouse but not divorced, health care providersw ill still ask your spouse to m ake decisions for you.

Q: Can a friend be my spokesperson?

A: Yes, but unless you appoint your friend as yourspokesperson, using a durable pow er of attorney for

health care, he or she m ay not be consulted or m aybe overruled by fam ily m em bers.

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

A: H ealth care providers usually w ill give treatm entw hile they try to reach agreem ent about w hat to do.The best w ay to prevent disagreem ents is tocom m unicate w ith everyone ahead of tim e to letthem know w ho you've picked and w hat you w ant.

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

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

W ho know s m e w ell? W ho w ould do a good job representing m e? W ho is available to com e to m y side if needed?

Q: What if I dont know anyone who I want to bemy spokesperson?

A: Your best choice is to w rite dow n your w ishesand give a copy to your health care provider. Fill outa legal form , such as a living w ill, w ith as m uchdetail as possible. Include a personalized statem ent,such as the exercises from this book, to provide abetter understanding of your w ishes.

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

A: Yes, because you need to m ake sure they arew illing, and to tell them about your w ishes so they'llknow w hat to do for you.

If you are married, yourspouse will be recognizedthe person to make decis

on your behalf, unless yohave a durable power ofattorney for health care thappoints 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 w rite dow n your w ishes for future

health care because it gives others the m ost com pletepicture of how you feel and w hat you w ould w ant.You can do this by signing an advance directive,w hich can be either a form al, legal docum ent or aninform al statem ent of your w ishes. There are tw otypes of form al directives: proxy and instructional.

A proxy directiveuses a legal docum ent called adurable pow er of attorney for health caretoappoint a spokesperson w ho can m ake health caredecisions on your behalf. It goes into effect w henhealth care decisions need to be m ade for you and

you cant com m unicate or m ake health care decisionsfor yourself.

Instructional directives,such as a living w illordirective to physicians,are w ritten instructions tophysicians in the event you cannot speak foryourself. They usually tell health care providersw hich treatm ents you w ould not w ant if you becom eterminally ill or end up in apermanent coma.

A personalized statementlets you express w hat ism ost im portant to you. In addition to talking w ith

loved ones and health care providers, you can m akethis statem ent by including the exercises from thisw orkbook, w riting a letter to your loved ones, orm aking an audio or video tape.

Which directive is best?It depends on your situation. You could com pleteeither a proxy or instructional directive, both, or justa personal statem ent. M ost health care providers like

proxy directives best because it m eans they w ill havesom eone to talk w ith w ho know s you w ell. B ut noteveryone has a proxy to represent them . In that case,an instructional directive w ill help your health careproviders decide w hats best for you. Either w ay,adding a personalized statem ent helps others feelm ore confident that they are doing w hat you w ouldhave w anted them to do.

There are 3 steps to advancecare planning:

1. Think through yourpreferences

2. Talk about your wisheswith others

3. Document your wishes

Completing an advancedirective or writing apersonalized statement are

ways to accomplish thethird step.

You can personalize

your 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 docum ents that helpyou keep control over future health care decisions.They can also relieve your loved ones of the burdenof m aking life and death decisions on your behalf.

Q: When do advance directives go into effect?

A: O nly if you becom e unable to understand yourm edical treatm ent options or are unable tocom m unicate your w ishes for m edical treatm ent.

Q: Whats the difference between a living will

and a regular will?A: A living w ill, like all advance directives, isrestricted to decisions about your health care. It goesinto effect w hile you are still alive but unable tocom m unicate. A regular w ill pertains to your estateand property. It goes into effect after your death.

Q: What should I do with my advance directive afterIve signed it?

A: You should give a copy to each person w hom youw ant to be inform ed of your w ishes, including your

health care providers. K eep a list of their nam es. Putthe original in a place w here others can easily find it.D onot put your only copy in a safe-deposit boxbecause it m ay not be easy to get if som eone needsit. You can also fill out the w allet card (in the back)to let people know w here they can find a copy.

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

A: You can alw ays change your directive. Eitherw rite the changes on your existing directive (initial

and date the changes), or destroy the old one andw rite a new one. Be sure to give revised copies toeveryone w ho 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 law s and differentform s. It m ay be best to com plete separate form s foreach state. Check w ith your health care providers ineach place.
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What situations and decisionsdo people commonly face?There are m any situations in w hich people are not

able to talk or com m unicate their w ishes because ofillness or injury. The follow ing stories describe thekinds of decisions fam ily m em bers, friends andhealth care providers m ust m ake w hen people can'tspeak for them selves. As you read these stories, tryto think about how you w ould value the quality ofyour life in each situation and w hether you w ouldm ake the sam e kinds of decisions for yourself.

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

With Alzheimers disease tmind fails before the bodymany people are otherwisehealthy.

In the advanced stages of

dementia, people typically not know where they are orecognize family membersThey frequently stop eatingeven with help from others

Dementia

Lily Chen, an elderly widow, was diagnosed 4 years

ago with Alzheimer's disease, a common form of

dementia. Over time she has gradually been losing her

ability to think clearly and make decisions. Now she

doesn't remember where she is and she can no longer

recognize her daughter who visits her every day. For the

last 8 months, she has been completely dependent on

nurse's aides to bathe and feed her. Recently, she

stopped eating altogether. Her daughter has power ofattorney for health care and has to decide whether to

have a long-term feeding tubesurgically placed into

her mother's stomach. The surgery is quick and won't

cause much pain, but the real issue is guessing how

Mrs. Chen would value her current life. If they place the

feeding tube, Mrs. Chen could live for many more years

in the same or worse condition. If they don't, she will

die in about 2 weeks or less, and probably won't feel

hungry or thirsty .

Questions to consider:

Do you think Mrs. Chen's daughter should decide

about the feeding tube based on the fact that her

mother isn't eating, or based on her mother's

memory problems and dependence on others for

care? Why?

Go to "Moreinformationabout healthconditions andtreatments" for

greater detail.See page29 fordementia, page34 for feedingtube, page28for coma (andPVS), and page35 forventilator.


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People in a coma dontfeel pain or any othersensations.

Comas can be caused binjury, illness, drugoverdoses and heartstoppage. Predicting thoutcome of coma depeon what caused it, howlong the person has bein coma, and age.

Doctors say that it can 3-4 weeks to see whetha person will come out coma or go into a relatecondition, persistentvegetative state or PVS

Coma

Tom 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 with

his eyes closedit looked as if he were asleep, except

that he didn't respond when people talked to him and he

didn't wake up. He was put on a ventilator, or breathing

machine, that pumped air into his lungs because he

couldn't breathe on his own. He also had a feeding tube

down his throat so liquid food and fluids could go

straight into his stomach.

Tom was single so his parents were asked to decide

whether to continue the treatments that were keeping

him alive. His doctors thought Tom might come out of it

but that it could take anywhere from one week up to a

year. They said that the longer Tom remained in a coma,

the less likely it was that he would ever wake up. They

thought that if he did come out of the coma, he would

probably have severe brain damage. He would need

help taking care of himself and would not be able to livealone.

Tom had never said anything about what he would

want if he were in an accident. His parents kept him

"hooked up" for weeks and weeks to give him every

chance. After 2 months, they decided it was hopeless

since he hadn't changed in all that time. They stopped

all treatment and Tom died that same day.


Do you think Tom's parents kept him alive long

enough? Too long? Why do you feel this way?

What if Tom were 69 instead of 29? Would it

make 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.

Seepage 30 formore onstroke,page 33 forCPR,page 31for terminalillnessandpage 36 forhospice.

Stroke

Flora 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 who

told her to go to the hospitalhe suspected a stroke.

After a long day of tests, the doctors agreed it was a

stroke. They started her on medication and

rehabilitation therapy. After a few more days, her sight

improved and she was talking clearly again. After two

months, she could move her arm but it was still a little

clumsy and weak. Her therapist taught her ways to

make the most of her weak arm. She was adjusting to

her new situation, but she worried constantly about

what would happen if she had a more serious stroke.

She talked about this with her husband and their

children. She said, "This stroke has made me think long

and hard about what's important to me. The doctor said

that even with my medications, I could have another

stroke 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 and

start rehab again to see whether I can get better. But if I

get to a point where I'll never be able to feed myself or

do anything on my own, then I don't want anything

done to prolong my life. That means no CPRif my heart

stops and no machines. My biggest fear is that I won't

be able to talk with you or enjoy your company. I'd

rather die quickly than suffer a long, slow decline."


Do you share Mrs. Park's views about when she

wouldn't want treatment to prolong her life?

For you, is there such a thing as unacceptable

quality of life? Where would you draw the line?


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With terminal illness, underlying disease can

no longer be cured. Mopeople with a terminalillness are expected to within 6 months.

Comfort careincludesmedications for pain another symptoms, andkeeping the person cleand dry. Sometimestreatments such as blootransfusions, antibioticor chemotheraphy areused to provide comforby relieving symptoms.

People who are close todeath often go "in and oof awareness, being aleonly part of the time.

Terminal illness

Carlos Ruiz had severe heart disease for years. His

doctor said, "Your heart is much worse and it will

continue to get weaker. Now we need to make some

decisions about your goals for care. One approach

would be to concentrate on supporting your heart, lung

and other vital organs to extend your life as long as

possible. Another option would be to make relief of pain

and discomfort our highest priority, even if it meant you

might not live as long. Which of these approaches

sounds right for you?"

Mr. Ruiz said, "I've lived with this bad heart for a

long time. I'm tired of fighting, but I'm not quite ready

to give up. I'd try simple treatments, especially if I can

be at home with my family. I'd rather be comfortable

than live a long time."

Mr. Ruiz' doctor gave him a referral to a hospice

nurse who started visiting him at home. He got a few

lung infections which made it hard to breathe. He cured

them by taking antibiotic pills at home. Then he gotanother infection that didn't get better, despite taking

antibiotic pills. He had a high fever and was so sick that

his wife had to decide what to do. His doctor and

hospice nurse said they could put him in the hospital to

treat his infection which would relieve his symptoms

and might prolong his life. Or he could stay at home

with additional comfort measures until he died.

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

little while longer.


Do you agree with Mrs. Ruiz's decision to send

her husband to the hospital? Do you think she

followed 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, youre going to

live to be 100 years old! We dont 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 hed 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 didnt 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 yourw ishes in the future.

Raising this topic is not alw ays easy. If your fam ilym em bers and friends are uncom fortable talking oreven thinking about these issues, consider these ideasto get a discussion started:

Begin on a positive note by talking about howm uch you value them and their w illingness tolisten to you.

Share one of the stories from this w orkbook toshow how planning in advance can ease the

burden on fam ily m em bers.Rem ind them that accidents can happen toanyone at any tim e and that you just w ant to beprepared.

Including others in a discussion about w hat you w antcan also help clarify your w ishes in your ow n m ind.Consider the story of M r. N akam ura:


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Writing it down.Even if youve talked about your w ishes, w hen thetim e com es, stress and strong em otions can causeyour loved ones to forget w hat you told them orw onder if they are m aking the right decision. Aw ritten docum ent can help keep things straight.

You m ay docum ent your preferences form ally usingadvance directives. If you w ant to fill out either aproxy and/or instructional directive, the form s arein the back of this w orkbook.

Som e people are m ore com fortable docum entingtheir w ishes inform ally in a letter or an audio orvideo tape. It seem s m ore personal. You can alsopersonalize form al advance directives by attaching

these inform al statem ents or any of the exercisesfrom this w orkbook.

Either w ay, w riting it dow nm eans youve lefta record of your w ishes that everyonefam ily,friends, and health care providerscan use as ageneral guide or as explicit instructions. You w onthave to w orry that your w ishes w ill be forgotten orm isunderstood.

What you say is in the aiwhat you write is alwaysthere.

Blank advancedirective formsare locatedin the backpocket. Theexercisesthroughout thisworkbook canbe used topersonalizethese forms.

Clipout the wallet cardfrom the back of this booand carry it with you to leothers know where to findyour advance directive.

Suz y was glad her da d had written hiswishes

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 didnt 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.
http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/http://ylyc_advance_directives.doc/


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Whats Next?

Talk about it...N ow that youve read through The B asicsof

advance care planning, you m ay feel ready to talkabout your w ishes w ith your fam ily and health careproviders. If you need help starting the conversation,see pages 46 to 50 for som e ideas.

Learn more...You m ay still have som e questions about advancecare planning. The Resourcessections that follow

are designed to give you a betterunderstanding of specific topics. Youcan refer to only the sections thatconcern you, or read it straightthroughw hichever w orks for you.

Write about it...Som etim es it helps to have a few thoughts on paper.Try pulling out the form s in the back of the bookand filling them out. D ont w orry about m aking themperfectthere are tw o sets of form s so you canalw ays go back and finalize your thoughts. The

im portant thing is to get started.

For more details:

see page 21

see page 30

see page 34

see page 51

H eres a sam ple of the kinds of questions that areansw ered in the Resources section:

W hat m akes life w orth living?

W hats likely to happen if you have a seriousstroke? W hat do you need to think about inadvance?

W hat if som eone you love needs a feedingtube? W hat are the pros and cons?

W hat can you do to keep the courts out ofthese advance care planning decisions?


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Thought-provoking exercises.Which e xercis es should I c omplete?

You can complete any or all of them. Each of the

exercises 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 medical

decision making, and your feelings about hope and

risk taking(pages 22-23),

4. Your wishes regarding the way you might spend your

last weeks or days if you were dying, and other relatedmatters(pages 24-26).

We recommend that you complete at least the exercises

on pages 21-24. These will be the most useful to others if

they have to make decisions for you.

You may want to ask your religious advisor to help you

think through the questions about quality of life, medical

interventions, and death and dying. Religions have

different philosophies about what to do under the

situations described in these exercises.

I don't like writing in books. Bes ides , I'm not ready

to write down my ans wers. What should I do?

We have included a copy of these exercises in the back of

the workbook. You can use these to draft your ideas.

What should I do with these exercises once I've

completed them?

Use them to discuss your values with your loved ones

and health care providers. Attach them to your advance directive as your

personal statement. They will provide greater details

about your wishes.

Put your initials and date on each page so others will

know when you filled them out.

Review them each year your answers could change

with time.


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Names

Initials & Date:

Who should speak for me?

Meets the legal criteria in my state for durable power of attorney

for 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 own

feelings from mine.

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

Knows me well and understands whats 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 family

members, friends, and/or medical personnel.

Other issues important to me:

Choosing A Spokesperson

Instructions This exercise will help you choose the best

spokesperson for you. On the top of each column, write in thenames of one or more people youre considering to be your

spokesperson. Place a check mark () in the column for that

person if the following statements are true. The first two

statements must be true for your spokesperson to have legal

authority to represent you. You should weigh how important the

other attributes are to you in deciding your first choice.


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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 these

factors 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 outsideI 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 as

nausea, 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 my

family (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 Be liefs 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.


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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. I

want 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 financial

burden 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 beliefsM any people have special personal or spiritual beliefs that they w antrespected in decision m aking about life-sustaining treatm ents. W hat are yours?


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Initials & Date:

Weighing pros and cons of treatmentfor different chances of recovery

Hope for recoveryPeople have different feelings about hope that influence w hat health carethey w ant. W hat 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 ever

return 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 m edical treatm ents in very personalw ays. This explains w hy som e people choose a treatm ent and others rejectit. A big question is, how m uch w ould you be w illing to endure if thechance of regaining your current health w as high? W hat if the chance w aslow ? Answ er the questions below to carefully evaluate your ow n w illingnessto 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 severe

side 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



27/5324

a. Avoiding pain and suffering, even if it

means that I might not live as long.

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

c. Being around my family and close

friends.

d. Being able to feel someone

touching me.

e. Having religious or spiritual advisors

at my side when I die.

f. Being able to tell my life story and

leave 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 my

family to get to my bedside to see me

before 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.


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?M any people have strong opinions about w hat w ould be im portant to them atthe very end of their lives. For som e, they w ant to express things they w ouldlike to have happen. O thers w ant to be sure that certain things they dislike or

fear w ill be avoided. W hat are som e of the things that you w ould hope for thatcould m ake your last w eeks, days, or hours the m ost peaceful?


28/532

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 w ould go into effect after your death. W e

include them here because they are related issues that you m ay w ant tocom m unicate to others. There is a list of organizations and other resourceson page 52 if you need m ore inform ation about these related m atters.

Organ donation and autopsySom etim es after death, organs and tissues can be used to help other peoplew ho need them . Fam ily m em bers m ust give consent to transplant yourorgans. You can help them m ake this decision by letting them know how youfeel about this. After an autopsy, the body can be show n and buried.

I want to donate any viable organs/tissues.

If yes, have you filled out an organ

donor card?

Have you told your family?

I consent to the use of all or part of my

body for medical research.

If yes, do you have a preference for

a 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:

Choices about death and dy

Burial arrangementsPeople often leave instructions about w hat they w ant done w ith their bodiesafter they die. Som e w ant to be buried in a particular place, perhaps in acem etery w ith other fam ily. O ther people w ould prefer to be crem ated andhave their ashes put or scattered in a special place. You can indicate yourpreferences by answ ering the questions below .

I would prefer to be: (circle one)

I would like my remains to be placed:

Other preferences:

Buried Cremated No preference


29/5326

Funeral or memorial se rvicesPeople have different ideas about funerals and m em orial services. Theseservices are often very com forting to fam ily and friends as they celebrate andhonor the life of their loved one. Services also can m ake a statem ent about

ones religious faith. W rite in below any thoughts about a funeral or m em orialservice such as w here it should be held, songs or readings to be included,w here donations should be sent, inform ation for an obituary notice, or otherw ishes.

Initials & Date:



30/532

More informationabout health conditions

and treatments

What will I learn from this se ction?

This section is intended to be a reference that will answer

your questions such as,

Whats it like to be in a coma?

What would happen if you needed CPR?

Is being on a mechanical ventilator (breathing

machine) 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 youve read these pages,

you can:

Ask your doctor. Take these pages with you to your

next appointment so your doctor can give you more

specific information about what these health

conditions and treatments might mean for you, given

your current health condition.

Call one of the organizations listed on page 52.


31/5328

What is it?Com a is a state of unconsciousness

that persists for som e tim e. It m aybe caused by a head injury, a severestroke, bleeding in the head, or asevere illness. A person w ho isunconscious show s little or nom ovem ent or response to stim ulation.It usually looks as though they w ereasleep. A related and m ore seriouscondition is called persistentvegetative state (PVS). A person inPVS is unconscious but som etim esopens his or her eyes and m ay haveunintentional m ovem ents such asyaw ning, and random m ovem ents ofthe head or lim bs. PVS usuallydevelops after about a m onth in acom a.

Whats it like?People w ho have been in a com a(and then com e out of it) usuallysay they have no m em ory of anyaw areness at all during the com a.

These people generally report nom em ory of pain or discom fort.Those few people w ho say theyw ere aw are of things going onaround them or hearing w hat w asbeing said near them w ere not in atrue com a. O bservation of com apatients typically show s no sign thatthe patient is in any pain or distress.People in com a do not get out ofbed, or com m unicate in any w ay.

They are usually cared for in a

Comahospital or nursing hom e becausethey need to have all of their

personal care done for themincluding being fed through a tube,having their body w astes cleanedup, and being turned every fewhours to prevent bed sores.

Whats likely to happen?Just after a person goes into a com a,it is very hard to predict w hat w illhappen. If and w hen the personcom es out of a com a depends on hisor her age, w hat caused it, and hisor her overall health. People havevery little chance of ever com ing outof com a that w as caused by illnessafter about 3 m onths, or one thatw as caused by a head injury afterabout 12 m onths. There are stages ofcom a. A person in a lighter stageof com a has a better chance ofcom ing out of it than som eone indeeper stages.

What are the key thingsto think about?W ould you w ant to be kept aliveafter the point in tim e w hen yourdoctors think that you probablyw on't ever com e out of the com a?

W ould you w ant to be kept alive ifthe doctors felt sure that if you w ereto com e out of the com a, you w ouldhave perm anent brain dam age orother severe lim itations?

Health Conditions


32/532

DementiaWhat is it?D em entia is a condition in w hich

there is a loss of m em ory and otherm ental functions, serious enough toaffect interacting w ith other people.The m ost com m on types ofdem entia are due to Alzheim ersdisease, AID S, and m ultiple strokes.O ther types of dem entia can occuras a result of head injury, heavy useof alcohol, or thyroid problem s. W iththe m ost com m on form s ofdem entia, m ental functions getw orse over tim e. These includem em ory, thinking, talking, problemsolving, and perception.

Whats it like?Som e people in the early stage ofAlzheim er's disease m aybe aw are of their forgetfulness,but as the dem entia progresses, theyw ill becom e totally unaw are of theforgetfulness and other m entaldeficits. They w ill lose the ability to

concentrate. Later, there m ay bem ood changes w hereby they m aylose interest in things around them ,or becom e agitated or violent onoccasion even w ith fam ily m em bers.In still later stages, they becom esless active, less talkative. In the lateststages, they m ay no longer recognizeclose fam ily or friends, lose theirsense of day and night, and w anderaround the house at odd hours.

Whats likely to happen?M ost types of dem entia areirreversible and w ill get w orse overtim e. Exceptions include dem entiacaused by thyroid problem s, as w ell

as m em ory problem s due todepression w hich are treatable and

m ay be reversible. The speed ofdeterioration is unpredictable, butsevere dem entia from Alzheim er'susually occurs w ithin 5-10 yearsfrom the first signs of m em ory loss.In later stages, people w ith dem entiabecom e incontinent, losing controlof their bow els and bladder. Theyoften require nursing hom e carebecause they need daily help w ithfeeding, dressing, and bathing andthis is often m ore than m ost fam iliescan handle. As they lose interest ineating, com plications of m alnutritionsuch as infections and skin ulcerscan lead to death.

What are the key thingsto think about?If you had severe dem entia and thenbecam e ill w ith a reversible illness,such as pneum onia, w ould you w anttreatm ent even though the treatm ent

w ould not help your m em oryproblem s? W hat if treatm entincluded going to the hospital?

If you w ere unable to eat enoughand w ere severely dem ented w ouldyou w ant to receive your nutritionand fluids through a feeding tubeplaced directly into your stom ach?

Som e people w ith dem entia seemhappy w hile others seem sad or

upset. If you w ere severelydem ented, how m uch should otherpeople pay attention to your m oodw hen m aking decisions about w hatit best for you?

Health Conditions


33/5330

StrokeWhat is it?Som eone w ho has sustained an

injury 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 am ong all causes of deathand are a m ajor cause of long-termdisability, but not all strokes causedisability. The kind of disability aperson develops depends on w hatpart of the brain is dam aged andhow severely. A stroke is alsoknow n as a cerebrovascularaccident,or a CVA.

Whats it like?The m ost com m on effects of astroke are: (1) w eakness or loss ofm ovem ent 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 sw allow ing, and (5)problem s understanding w hat other

people are saying. Som e peopleexperience changes in their m ood orpersonality. D epression is com m onam ong people w ho have had astroke, often because of injury tothe brain.

Whats likely to happen?W ith the m ost m inor of strokes, a

person has a loss of feeling or abilityto m ove a part of the body for lessthan a few days. W ith m oderatestrokes, a person m ay lose the abilityto use one arm , need to w alk w iththe assistance of a cane or w alker,and have som e slurring of speech.W ith serious strokes, a person m ightlose the use of one entire side of thebody, need assistance to get out ofbed and into a chair, or m ay not beable to speak or understand othersat all. W ith the m ost severe strokes,a person often loses consciousnessand falls into a com a. M ost recoveryfrom strokes happens w ithin the firstfew days up to about 3 m onths,though m odest im provem ents m aycontinue up to 12 m onths. After that,w hatever disability rem ains islikely to be perm anent.

What are the key things

to think about?Every stroke is different and so is aperson's ability to adapt to losses infunction and disability. M any peoplefind that w ith tim e and help they canadjust to their new circum stancesafter a stroke. If you had a stroke,w hat level of disability do you thinkyou w ould w ant to live w ith? Arethere som e situations that you w ouldfind unacceptable? If so, w hat

are they?

Health Conditions


34/533

What is it?Every illness that causes death has a

term inal stage. That stage is definedas the point w hen treatm ents can nolonger w ork to reverse the illness orkeep the disease from getting w orse.N o m atter w hat treatm ents are given,the person is going to die w ithin ashort tim e. It is very hard to predictexactly how m uch tim e a person hasto live at this stage, but m ost doctorsexpect they w ill live about sixm onths or less.

Whats it like?D uring a term inal illness peopleoften lose strength and becom econfined to bed either in their ow nhom e, or if they need m ore help, ina hospital, nursing hom e, or hospice(see page 36). Their bodies w illbegin to shut dow n. This m ay orm ay not be accom panied by pain.Som e term inal illnesses, such as thelater stages of cancer, can be painful,

although m edications can control thepain. A ppetite usually dim inishes.As people get closer to death theyw ill alm ost certainly think andcom m unicate less clearly.

Whats likely to happen?N ear death there are tim es w henpeople are not able to express theirw ishes clearly. Som e peopleexperience short periods of m ental

confusion, for exam ple, they drift in

Terminal illnessand out of aw areness over thecourse of a day. M any people lapse

into a com a just before they die. Forexam ple, they m ay becom edehydrated or develop an infectionthat, if it is not treated, could causedeath m ore quickly than theirprim ary term inal illness. If thetreatm ents for these conditions aresuccessful, they w ould postpone them om ent of death and m ight prolongany suffering or discom fortassociated w ith the term inal illness.

What are the key thingsto think about?If you had a term inal illness, w hatw ould be the m ost im portant thingfor you: relieving suffering orprolonging life?

W hat w ould be your goals fortreatm ent of any other problem s ifyou had a term inal illness? Treatm entfor secondary problem s (such asan infection) w ould not cure theprim ary term inal illness (such ascancer or heart disease).

Health Conditions


35/5332

this process, you w ould receive careto keep you as com fortable aspossible.

What are the good pointsof getting dia lysis ?D ialysis allow s people w ith kidneydisease the chance to lead a near-norm al life. D ialysis can relievesom e of the sym ptom s associatedw ith kidney failure. For thosepatients w ho are eligible for akidney transplant, dialysis can keepthem alive w hile they w ait for a

donor.

What are the bad pointsof getting dia lysis ?D ialysis takes over one of the m anyfunctions of your kidneys, so it can'tdo as good a job as a healthykidney. B ecause of this, w asteproducts build up in your bodybetw een dialysis sessions, w hichm eans that at tim es, you m ay not

feel very w ell. You w ill have to becareful about the am ount and typesof food you eat. You also w ill bem ore prone to infections, bleedingfrom your stom ach or bow el,sw elling or bloating, and be easilyfatigued.

You w ill have to spend at least 12hours a w eek on a dialysis m achine.You m ay have to travel to a dialysiscenter for care, w hich w ill involve

additional tim e and possibly helpfrom others.

If you have another serious illnessbesides kidney failure, especiallythose involving your lungs, liver,or heart, dialysis treatm ent m ay behard to take because of difficultiesregulating your body fluids andw aste products.

Whats the problem?If your kidneys stop functioning,w aste products build up in yourbloodstream . As a result, you m ayfeel sick to your stom ach, tired,w eak, have little appetite and havesw elling. In addition, you m ay havedifficulty breathing or thinkingclearly.

Whats kidney dialysis?D ialysis is a process in w hich yourblood is circulated outside yourbody into a m achine that rem oves

w aste products. A needle is insertedinto one of your veins (usually inyour arm ) and an attached tubecarries a steady flow of your bloodinto the m achine. 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 m achine during each dialysissession, w hich usually lasts about

four hours. You probably have threesessions a w eek. 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 tim ew ithout collapsing your veins.

What happens if I dec idenot to get dialysis ?If the w aste products in yourbloodstream continue to accum ulate,you w ill feel w orse and w orse. Aftersom e tim e you w ill go into a com aand then (usually w ithin a w eek),your heart w ill stop. H ow quicklythis occurs depends on your overallcondition, but can be betw een a fewdays to a m onth. If you go through

Kidney Dialysis

Treatments


36/533

CPR Cardiopulmonary ResuscitationWhats the problem?D uring a life-threatening illness ora heart attack, your heart m aysuddenly stop beating and you m aystop breathing. O r your heart m aybeat so irregularly that it no longereffectively pum ps blood to yourbrain. These events m ostly occurfor people w ith heart disease, butcan also occur w ithout any know ncause. Soon after blood stopsm oving to your brain you w ill loseconsciousness and not be aw areof anything going on around you.

Whats CPR?CPR involves vigorous pressing onyour chest to keep blood circulatingw hile electrical shock is applied toyour chest to jum p startyour heart.M outh-to-m outh breathing is usedto restart your ow n breathing, or abreathing tube is placed into yourw indpipe and air is pum ped intoyour lungs to help you breathe.

You receive m edications througha tube placed in one of your veins.Typically, all this goes on for about15-30 m inutes.

What happens if I dec idenot to get CPR ?W ith or w ithout CPR, you w ill alm ostim m ediately lose consciousness.W ithout CPR, death w ill follow inabout five to ten m inutes.

What are the good pointsof getting CPR?If you are in relatively good healthw hen you need CPR, it can returnyou to roughly the sam e state youw ere in w hen your heart stopped.

For people w ith som e types of heartdisease, CPR can restore an irregularheart beat. Pain or discom fort isnot an issue w hile you receive CPRbecause you are not consciousduring the process.

What are the bad pointsof getting CPR?After CPR, how ever, you could havea sore chest or broken ribs becauseof the electrical shocks and vigorousm assage. In addition, the chestcom pressions could result in a

collapsed lung, w hich w ould requireadditional treatm ent. M ost peoplew ho need CPR need a m echanicalventilator to support their breathingafterw ards.

The success rate for CPR dependson m any things: your overall healthw hen you need it, w here you getit (in the com m unity 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 betw een 25-40% . If youare over age 65, this rate drops tobetw een 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 w erein before their heart stopped. O f

those w ho survive, m any continue tolive, but in a w eaker state or w ithsignificant brain dam age becauseblood could not get to their brain intim e. CPR could keep you fromdying, but you m ight live in a com aor be unable to think clearly.

Treatments


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Whats the problem?You m ay find yourself unable tosw allow food. This could happenafter an accident that dam ages yourthroat. It could also happen if youare unconscious or have som e kindsof brain dam age. W hen this happensyou w ill be unable to take in enoughfood and w ater by m outh to keepyourself alive.

Whats a feeding tube?

A feeding tube is used to carry liquidnutrition and fluids into your body.O ne kind of tube goes up your nose,dow n your throat, and into thestom ach. This is called a nasogastrictube. It is about 1/8 of an inch indiam eter. Another kind of tube issurgically placed into the w all ofyour stom ach. The operation isquick and safe and you w ill feel littlediscom fort. O nce the tube is in place

it is painless.

What happens if I dec idenot to get a feeding tube?If you dont receive any nutrition orfluids you w ill fall into a state m uchlike a deep sleep. This w ill takeabout one to three w eeks, duringw hich tim e, you w ill be keptcom fortable. For exam ple, ice chipson your lips w ill help keep themm oist. U sually, after several days,you w ill no longer experience thirstor hunger. Also, you w ill not feelpain as easily as you do now . W ithina day or tw o after you enter thisdeep sleep, your heart w ill fail anddeath w ill follow w ithin five to tenm inutes.

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. W ithadequate nutrition, you w ill be lesslikely to get bedsores. A feeding tubeis not painful, although the kind thatgoes dow n your nose (nasogastrictube) can be uncom fortable. Thesurgically placed stom ach tube is easyto m anage w ithout help from othersas long as you can take care of

yourself. W ith this kind of tube, youcan pour the liquid nutrition into thetube, m ove about and bathe, all onyour ow n. This tube is placed underyour clothes, so other people w ouldnot know you have one.

What are the bad pointsof getting a feeding tube?H aving a tube dow n your throat w illfeel som ew hat uncom fortable and

unpleasant, although not truly painful.You could aspirate liquid (get it intoyour lungs) w hich can causepneum onia. W ith either tube, you w illnot be able to taste anything.Receiving fluids m ight m ake it harderfor you to control urination if you areconfined to a bed.

If you are already in the term inalstage of an illness, a feeding tubew ill likely postpone your death. Tube

feeding also m akes it possible (insom e cases) to keep people alivew ho are in a com a, have severestrokes, or severe dem entia for a longtim e, even if they m ight not havew anted it.

Treatments


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Whats the problem?You m ay not be able to breathe onyour ow n for a num ber of reasons.Perhaps you have been in anaccident that has dam aged yourairw ays. You m ight have a seriouslung disease, or m aybe you havesuffered brain dam age. You needa m achine 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 m ay be

im possible to tell how long youw ill need it.

Whats a mec hanicalventilator?M echanical ventilators (also calledbreathing m achines or respirators)com pletely take over the task ofbreathing. A tube is placed into yourw indpipe, either through yourm outh or nose or through a sm all

surgical incision at the base of yourneck. The tube is about 3/4 of aninch in diam eter, about as big as adim e. The tube w ill m ake it hard orim possible to talk. M ost patients ona m echanical ventilator are in ahospital, usually in an intensive careunit. They are usually not able to getout of bed. In som e situations, aportable ventilator allow s a patientw ho is com pletely paralyzed to getaround in a specially-equippedw heelchair.

What happens if I dec idenot to get a mec hanica lventilator?W ithout som e external breathingassistance, you w ill die quickly. Ifyou stop breathing, you w ill die

w ithin five m inutes. You could begiven m edications that w ill sedateyou. These m edications help yourelax so you w ill not panic or feellike you are struggling for breath.

What are the good pointsof getting a mec hanicalventilator?M echanical ventilation is a painless,although often uncom fortable, w ay tocontinue your life. It is often needed

for only a short tim e, for exam ple,just long enough to let your bodyrecover from a serious illness. Insom e cases, it can relieve thediscom fort of feeling breathless. Ifyou need a ventilator for a long tim e,it can sustain your life indefinitelyw hen you m ight otherw ise die.

What are the bad pointsof getting a mec hanical

ventilator?Even if you are conscious, you w illnot be able to talk very w ell or at all.You w ill likely be confined to bed.You w ill also be dependent on othersto bathe, feed, and dress you and totake care of your bow els and bladder.N urses w ill also need to suction yourlungs to keep them clear of m ucous.It m ay be hard to tell how long youw ill need to be on a ventilator. If youhave a term inal illness, a m echanicalventilator w ill only prolong dying.

Mechanical Ventilators(Breathing machines)

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discom fort. They are not just forpeople w ho are in the last m onths of

life or w ho are getting hospice care.

What happens if I dec idenot to get hospice care?Your health care providers w illcontinue to treat new sym ptom s orinfections as they occur. They w illtreat you either in or out of ahospital, depending on how m uchcare you need. They tend to focuson relieving discom fort due tophysical sym ptom s. They often do

not focus on addressing theem otional and spiritual needs ofdying people.

What are the good pointsof getting hospice ca re?H ospice care is a holistic approachthat focuses on helping dying peoplem ake the m ost out of each day.

M any people seek hospice care sothey can die at hom e. H ospice cansupport the patient and fam ily tom ake this happen.

What are the bad pointsof getting hospice ca re?Agreeing to hospice usually m eansthat patients m ust recognize andaccept that their illness cannot becured and that they w ill probably diein the next 6 m onths. Som e peopleview this as a failure because they

think it m eans they are giving up.

U sually, getting hospice care athom e m eans that patients m ust havefam ily or friends w ho can providehands-on care up to 24 hours a day.Therefore, som etim es it's easier forpatients, as w ell as their loved ones,to get their final care in a hospital.

Whats hospice care?H ospice is an approach to caring for

people w ith term inal illness. Thegoal of hospice is to provide com fortcare to control pain and otherphysical sym ptom s, and deal w iththe em otional and spiritual needs ofdying persons and their fam ilies inthe last 6 m onths of life.

H ospice care usually involves a teamof professionals, including a nurse, asocial w orker, a doctor (although notalw ays your personal doctor) and a

chaplain or other spiritual advisor.O ther health care providers andvolunteers, such as physicaltherapists and chore w orkers, arecalled in as needed.

H ospice care can be provided in thehom e or in special care units inhospitals and nursing hom es. Thehom e hospice team usually com es tothe house 1-3 tim es a w eek, but isavailable by phone 24 hours a day.

What are palliative c are a ndcomfort care?The term s palliative care andcom fort care are both used to m eanrelieving sym ptom s and m inim izingdiscom fort. Exam ples includem edications and other treatm ents tocontrol pain, nausea, fatigue andshortness of breath. They alsoinclude nursing care to keep you

clean, dry, and com fortable.Som etim es, curative treatm ents, suchas antibiotics, blood transfusions,chem otherapy, or even surgery, areoffered to patients as palliative carebecause these treatm ents can m akethem m ore com fortable.

Palliative and com fort care should begiven to all people experiencing

Hospice and Palliative (Comfort) Care

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Your specific health carepreferences

Why should I fill these out? These forms are very specific about your wishes. You

can attach them to your advance directive to provide a

detailed picture of your preferences.

In conditions when you can't speak for yourself, health

care providers want to know how you feel about

different treatments, especially CPR, mechanical

ventilators, and feeding tubes. These forms will make

it easier for your family and health care providers to

give you the care you want.

Why are there 3 parts to each page?

The 3 parts reinforce each other. Treatment decisions are

often based on thoughts about quality of life. For

example, if people think that life with severe dementia

would be difficult but acceptable, they might want some

treatments but not others that would keep them alive.

Part A lets you express your feelings about the quality

of life for each of the different health conditions. This is

helpful 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 for

Parts A & B, such as why you would want some

treatments but not others.

Why does comfort ca re have a c heckma rk ()?

Because no matter what else you decide, your health careproviders will alway try to give you medications and care

to keep you clean and comfortable.


41/5338

Current HealthThe inform ation on this page could help others m ake decisions for you ifyou becom e unable to speak for yourself. The first part w ill give others anoverall sense of how you view your current health situation.

Part A: Feelings about quality of life

Part B: Preferenc es for different life-sustaining treatme ntsIm agine that you develop a life-threatening illness and couldn't speak foryourself. The doctors feel there is a good chance you w ould recover to yourcurrent health, but you m ight need one or m ore of the follow ing treatm ents.

Check the answerthat best describes

how you feel aboutyour current health.

My life right

now is worth

living, but just

barely

My life

right now

is just

fine

My life

right now is

difficult, but

acceptable

My life

right now is

not worth

living

Part C: Reas ons for my dec isions or other c omments

I wouldwant toreceive

thistreatment

I wouldrather die

naturally andnot have this

treatment

I dontknow/cant

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 careOther treatments: (fill in)

Initials & Date:

Spe cific Health Care Preferences


42/533

Permanent ComaIm agine you are in a perm anent com a (see pg. 28 for details). This m eans you:do not think, hear, or see anythingare not in any pain

are confined to a bed because you cannot m oveneed 24-hour nursing care for bow el and bladder functions and skin care

Check the answer thatbest describes how youwould feel about being

in a coma for the rest ofyour life.

Part B: Preferenc es for different life-sus taining treatmentsIm agine that w hile you are in a com a, you develop a life-threatening illness.The doctors feel that no m atter w hat treatm ent you receive, you w ill rem ain ina com a, but the treatm ent w ill keep you from dying.


Life like this

would be worth

living, but just

barely

Life like this

would be

difficult, but

acceptable

Life like this

would not

be worth

living

Part C: Reas ons for my decis ions or other c omments


thistreatment

I wouldrather die


treatment

I dontknow/cant

answerright now


Antibiotics

CPR








Initials & Date:

Spec ific Health C are Preference s


43/5340

Severe Dementia

Check the answer thatbest describes how youwould feel about having

severe dementia for therest of your life.

Part B: Preferenc es for different life-sus taining treatmentsIm agine that w hile you have this dem entia, you develop a life-threateningillness. The doctors feel that no m atter w hat treatm ent you receive, you w illrem ain dem ented, but the treatm ent w ill keep you from dying.


Life like this

would be worth

living, but just

barely

Life like this

would be

difficult, but

acceptable

Life like this

would not

be worth

living


Would your answers be different if you seemed happy most of the time? Yes No

Would your answers be different if you seemed unhappy most of the time? Yes No

How?


thistreatment

I wouldrather die


treatment

I dontknow/cant

answerright now


Antibiotics

CPR








Initials & Date:


Im agine you have severe dem entia (see pg. 29 for details). This m eans you:cannot think or talk clearly, are confused and no longer recognize fam ily m em bersseem uninterested in w hat's happening around you

are not in any painare able to w alk, but get lost w ithout supervisionneed help w ith getting dressed, bathing, and bow el and bladder functions


44/534

Severe StrokeIm agine you have had a severe stroke (see pg. 30 for details). This m eans you:are able to think, but your ability to understand w hat is said to you andcom m unicate w ith others is severely lim ited

have aches and pains that m ake you uncom fortable m ost of the tim eare able to w alk w ith a w alker, but m ost of the tim e you get around in a w heelchairneed help w ith getting dressed, bathing, and bow el and bladder functions

Part B: Preferenc es for different life-sustaining treatme ntsIm agine that in addition to the stroke, you develop a life-threatening illness. Thedoctors feel that no m atter w hat treatm ent you receive, you w ill still have yourstroke-related problem s, but the treatm ent w ill keep you from dying.


Check the answer thatbest describes how youwould feel about a severe

stroke for the rest ofyour life.

Life like this

would be worth

living, but just

barely

Life like this

would be

difficult, but

acceptable

Life like this

would not

be worth

living



thistreatment

I wouldrather die


treatment

I dontknow/cant

answerright now


Antibiotics

CPR








Initials & Date:



45/5342

Terminal IllnessIm agine you are expected to die w ithin the next tw o m onths (see pg. 31 fordetails about term inal illness). This m eans you:have days w hen you drift in and out of aw areness

have a lot of discom fort that requires m edicationare in bed m ost of the tim e due to w eaknessneed help w ith getting dressed, bathing, and bow el and bladder functions

Part B: Preferenc es for different life-sustaining treatme ntsIm agine that in addition to the term inal illness, you develop a life-threateningillness. The doctors feel that no m atter w hat treatm ent you receive, you w ill getw eaker and die in about 2 m onths, but the treatm ent w ill keep you from dyingim m ediately.


Check the answer thatbest describes how youwould feel about having

a terminal illness.

Life like this

would be worth

living, but just

barely

Life like this

would be

difficult, but

acceptable

Life like this

would not

be worth

living



thistreatment

I wouldrather die


treatment

I dontknow/cant

answerright now


Antibiotics

CPR







Comfort care

Hospice

Other treatments: (fill in)

Initials & Date:



46/534

A future situation of concernwhen I might not be able to express my wishesM y doctor has told m e that given m y particular circum stances, I could end up like

(w rite in a description of possible future situations):


Check the answer thatbest describes how youwould feel about this

situation.

Life like this

would be worth

living, but just

barely

Life like this

would be

difficult, but

acceptable

Life like this

would not

be worth

living



thistreatment

I wouldrather die


treatment

I dontknow/cant

answerright now


Antibiotics

CPR








Initials & Date:


Part B: Preferenc es for different life-sus taining treatmentsIm agine that in addition to the situation described above, you develop alife-threat

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