MakingChoices

Beginning to Plan forEnd-of-Life Care

Sponsored by the

Florida Department of Elder Affairs in collaborationwith the Florida Partnership for End-of-Life Care

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Making ChoicesBeginning to Plan for End-of-Life Care

Sponsored by theFlorida Department of Elder Affairs in collaboration

with the Florida Partnership for End-of-Life Care

Terry White, SecretaryFlorida Department of Elder Affairs

Jeb Bush, Governor

4040 Esplanade WayTallahassee, Florida 32399-7000

850/414-2000 * FAX 850/414-2004 * TTY 850/414-2001

Internet address: http://elderaffairs.state.fl.us(Spanish) http://elderaffairs.state.fl.us/doea/ancianos.html

June 2002

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Message from Governor BushMessage from Governor BushMessage from Governor BushMessage from Governor BushMessage from Governor Bush

Floridians are living longer today than at any point inour history. And thanks to advances in technology, weare living a better quality of life. With these advancesoften come difficult decisions about end-of-life care, andthe effect it will have on our families and loved ones. Bytalking with family members and planning for our care,we can ease the burden of making some of life’s mostdifficult decisions. Florida is taking the lead in helping

caregivers and individuals prepare for these challenging choices. In aneffort to continue helping our most vulnerable citizens, I encourage allFloridians to begin discussing end-of-life care with your family andloved ones.

Message from Secretary WhiteMessage from Secretary WhiteMessage from Secretary WhiteMessage from Secretary WhiteMessage from Secretary White

One of our goals at the Department of Elder Affairs is toeducate Floridians about every aspect of the aging pro-cess. We have learned that education about futurechoices is most helpful when it occurs long before it isneeded. With this philosophy in mind, advanced plan-ning allows for preparation of medical, legal and spiri-tual decisions. Having a conversation with your family

and friends about your preferences in end-of-life care offers the bestopportunity for making choices.

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These articles first appeared in the Elder Update, a publication of the Florida Depart-ment of Elder Affairs from April 2001 to April 2002. The original articles have beenedited for this volume. The series of 13-articles were developed by the Department ofElder Affairs in collaboration with the Florida Partnership for End-of-Life Care, acommunity and state partnership partially funded by a grant from the Robert WoodJohnson Foundation.

Special acknowledgment is given to the members of Florida Partnershipwho authored these articles.

Florida Hospices and Palliative Care, Inc.

Florida Department of Health

University of Florida, Program of Law, Ethics, and Medical

Professionalism

University of Miami, Ethics Programs

Florida Bioethics Network

Statewide Network of 23 Community Coalitions

The members of the Florida Partnership would like to acknowledge the encourage-ment and support of numerous individuals including State Senator Ron Klein fromBoca Raton, Florida.

The vision of the Department of Elder Affairs is “to lead the nation in providingolder persons with information, choices and opportunities.” The mission of theFlorida Partnership is “to ensure that all Floridians have access to quality end-of-life education and information”.

If you have any questions about the information provided or would like to contribute,call the Department of Elder Affairs at 1-850-414-2000 or the Florida Partnershipoffice at 1-850-878-2632.

AcknowledgmentsAcknowledgmentsAcknowledgmentsAcknowledgmentsAcknowledgments

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Acknowledgments.............................................................................. 3

End-of-Life Choices: An Introduction to this BookletRay Moseley, Ph.D., and Linda Macdonald, M.S. ..................................7

Strategies for Advance Care PlanningGail Austin Cooney, M.D., and William L. Allen, J.D. ........................... 9

Advance Care Planning: Communicating End-of-Life Choicesto Your Physician

Gail Austin Cooney, M.D. .............................................................. 13

Communicating End-of-Life Choices to Family and Loved Ones:Isn’t It Time We Talk About It?

Kathy Brandt, M.S., and Karen Lo, M.S., R.N. ................................... 17

The Moral and Legal Equivalency Between Withholding andWithdrawing of Treatment

Kenneth W. Goodman, Ph.D. ......................................................... 21

“Do Not Resuscitate Orders”: Do They Have to Pose a Dilemma?Ray Moseley, Ph.D. ..................................................................... 25

Emergency Medical Services and the Do Not Resuscitate OrderFreida Travis and Jessica Swanson, M.S.W. ..................................... 29

Understanding Grief To Help Yourself and OthersKathy Brandt, M.S. ..................................................................... 35

Palliative Care: Will You Even Need or Want It?Kathy Brandt, M.S. ..................................................................... 39

Pain Management at the End-of-LifeWilliam L. Allen, J.D. .................................................................. 43

Florida Hospices: Comfort, Care and Compassion When It IsNeeded Most

Samira K. Beckwith A.C.S.W., C.H.E. .............................................. 47

Table of ContentsTable of ContentsTable of ContentsTable of ContentsTable of Contents

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Medicare Hospice Benefit: Everything You Need to KnowSamira K. Beckwith, A.C.S.W., C.H.E. ............................................. 51

Myths About HospiceSamira K. Beckwith A.C.S.W., C.H.E. .............................................. 55

End-of-Life Decisions: Some Final ThoughtsWilliam Allen, J.D....................................................................... 59

Contributors .................................................................................... 63

Resources ........................................................................................ 66

Florida Partnership for End-Of-Life Care Advisory Committee (Founding Members)..................................................................68

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he following series ofarticles covers many of thecrucial issues involved in

end-of-life care. These articlesprovide a good starting place tobegin thinking about the choices wemay have to make about the care atthe end-of-life for ourselves andour loved ones.

This volume begins with threearticles, by Gail Clooney, WilliamAllen, Kathy Brant and Karen Lo,which address the possible choiceswe are faced with in end-of-life careplanning. These choices includethe decision about whether to havean advance directive and what typemay be best for you. These articlesalso discuss the difficulty with, andimportance of, talking to loved onesabout your end-of-life decisions.

Next, Ken Goodman discusses avery common and often verysignificant confusion in end-of-lifedecision-making, namely theconfusion between “withholding”and “withdrawing” life prolongingmedical treatments.

The problems surrounding aperson’s decision to not want to beresuscitated in the event of cardiacarrest are addressed in two articles.The article by Ray Moseleydiscusses the issues with the Do

Not Resuscitate Order in thehospital setting, and the article byFreida Travis and Jessica Swansondiscusses the Florida’s response tothe problem of transportable DoNot Resuscitate Orders, whichallows Emergency Medical Servicesto honor a person’s refusal ofresuscitation in the event of cardiacarrest at home.

The final set of articles address theissues involved with care of thewhole person at the end-of-life andthe care of that person’s family andloved ones. Kathy Brandt discussesthe importance of understandingthe grief process. William Allendiscusses the necessity of effectivepain management. SamiraBeckwith discusses the role ofhospice in effective end-of-life careand answers important questionsabout economic access to hospicecare. She also dispels the numerousmyths about hospice care.

These articles are not designed tobe a complete resource guide toend-of-life care but rather offer animportant starting point for thosewho are beginning to think aboutand plan for end-of-life care forthemselves or for their loved ones.

End-of-Life Choices: Introduction to this BookletEnd-of-Life Choices: Introduction to this BookletEnd-of-Life Choices: Introduction to this BookletEnd-of-Life Choices: Introduction to this BookletEnd-of-Life Choices: Introduction to this BookletRay Moseley, Ph.D., and Linda Macdonald, M.S.

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eciding to havean advancedirective is only

the first of several deci-sions about end-of-lifecare. Once a personmakes this decision, anumber of questions ariseabout the best approach totake. However, the best approach mayvary from one individual to another. Inthis article, we have tried to identifythe benefits as well as the potentialproblems with various approaches.We hope this information will help youdetermine which approach is bestsuited to your situation.

1. Having only a living will.

Advantage

Some people have felt that if theycould be sufficiently clear about theirchoices of treatment limitations in aliving will, they would not need asurrogate decision-maker. In one casea man reported that he deliberatelychose this strategy, so that his wifewould not have the emotional burdenof making decisions or the responsibil-ity for carrying out his choices aboutlimitations or refusals of treatment.

Disadvantages

Most living wills cannot adequatelyforesee all of the clinical circumstancesthat may arise; therefore, some deci-sions may need to be made that thepatient could not have foreseen or

directly addressed inprior instructions.Therefore, what isexpressed in a livingwill often needs to beaugmented by adecision-makerchosen by the patientwho will be able to

interpret what is in the living will orexplain what the patient would havewanted under the circumstances.

2. Having only a health caresurrogate decision-maker.

Advantages

Some groups advise that the best wayto prevent a living will from beinginterpreted in a way that results in anoutcome contrary to your intention isto not write one at all. This strategytries to prevent that misinterpretationby simply naming someone who knowswhat you want and who will expressthose decisions for you, without havinga document that may be ambiguousand therefore used by others to chal-lenge what your surrogate says youwould want.

Disadvantage

Although the risk of the above scenariocannot be ruled out, a written livingwill can also be an important source offormal support for what your surro-gate says you would want when some-one challenges his or her account ofwhat you would have chosen. If your

Strategies for Advance Care PlanningStrategies for Advance Care PlanningStrategies for Advance Care PlanningStrategies for Advance Care PlanningStrategies for Advance Care PlanningGail Austin Cooney, M.D., and William L. Allen, J. D.

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surrogate is challenged by someonewho says, “How can you demonstratethat what you have chosen is what thepatient would have wanted?” writtendocumentation of your choices can beused to show consistency.

3. Having a combination ofliving will and health caresurrogate decision-maker.

Advantages

The key to making this option work foryou is to make sure your surrogate hasread your living will and asked youquestions to clarify remaining ques-tions. If you have both a living willand a surrogate, a challenger will findthat it is his word against yours andyour surrogate’s, instead of his wordagainst your surrogate’s word alone.

A living will might have made a differ-ence in the recent St. Petersburg caseof Terri Schiavo who has spent 11 yearsin a persistent vegetative state sincecollapsing from a cardiac arrest at age26. Her parents’ claim that theirdaughter would want to continue lifesupport could be refuted or supportedby her own words in print rather thansimply her husband’s assertions thatshe would not want treatment.

Disadvantage

If your surrogate hesitates to followyour choices as expressed in the livingwill, it makes it very difficult for thephysician to withdraw treatment thatyou refused in writing.

4. Adding a “values history”.

A “values history” is an idea derivedfrom the term “medical history.”

Just as your medical record, aug-mented by your physician’s elicitationof new information during each en-counter with you, provides a history ofyour health status that guides medicaldiagnosis and recommendations fortesting and treatment, so a values

Values History

To help you develop a values history,the Health Sciences Ethics Program ofthe University of New Mexico hasdeveloped a form that is not copy-righted. This document provides ques-tions to help you clarify your feelingsand identify your thoughts on suchtopics as:

• Overall attitude toward lifeand health

• Personal relationships

• Thoughts about independence andself-sufficiency

• Living environment

• Religious background and beliefs

• Relationships with doctors andother health caregivers

• Thoughts about illness, dying anddeath

• Finances

• Funeral plans

For more information or to obtain acopy, write to:

Health Sciences Ethics ProgramUniversity of New MexicoNursing/Pharmacy Bldg., Room 368Albuquerque, NM 87131Or e-mail requests to pierson@unm.eduCost per hard copy: $3.00(payable to Health Sciences EthicsProgram).

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history is an attempt to elicit yourvalues, feelings, choices, and bio-graphical details that may shed lighton what decision you would make ifyou ever lost the capacity to decide foryourself.

A values history can help your surro-gate and your care providers deter-mine what you would be likely todecide, based on abroad expressionof what has beenand are importantto you. A keycomponent of avalues history isyour own expression of what consti-tutes an acceptable quality of life foryou. This can help your physicians andsurrogate know that if proposed treat-ments cannot restore you to a qualityof life you find acceptable, you wouldrefuse such treatment.

Values history separate from yourliving will legal document:

The conventional wisdom on thisoption has been that the values historyis an autobiographical narrative that isnot appropriate for inclusion in aformal legal document like a livingwill. It is true that the process ofreflection and expression of the per-sonal values that might be relevantmight be too general to be useful in aliving will. However, some of the endresults of the process of expressingone’s personal values on end-of-lifequestions may not be useful and ap-propriate to be integrated into one’sliving will.

Values history as part of the legaldocument:

Although the length and the narrativeelements and generality of some as-pects of a values history may not lendthemselves well to a formal advancedirective intended to be a legal docu-ment, there is no good reason why theoutcomes of a values history process

cannot be incor-porated intoone’s living will.In particular,one’s own per-sonal definitionof the minimally

acceptable quality of life or levels ofexistence that one would find unac-ceptable can be specified in the livingwill to provide further guidance toone’s decision-makers and couldclearly be intended to convey the fullforce of your legal intent.

5. Relying on the proxy decision-maker instead of naming asurrogate decision-maker.

Advantages

If choosing one member of your familyto be your surrogate will hurt thefeelings of others, it may be temptingto simply avoid choosing, especially ifthe list of proxy decision-makersspecified in statute will turn out to bethe same person you would havechosen, anyway.

Health care decisions may be made forthe patient — if the patient has noadvance directive or designatedsurrogate — by any of the following

“Deciding to have an advance

directive is only the first of several

decisions about end-of-life care.”

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individuals, in the following order ofpriority:

• Judicially appointed guardian• Patient’s spouse• Adult child of the patient• Adult sibling of the patient• Adult relative of the patient• Close friend of the patient

See section 765.401, Florida Statutes.

Disadvantages

The problem with this is that a proxy’sdecision may be more easily chal-lenged than a specified surrogate’s. Bynaming a surrogate, you are giving thatperson the legal presumption (inFlorida) that his determination of whatyou would want is correct. Anyonechallenging what your surrogate sayswill have the burden of showing thatperson is wrong. By naming a surro-gate, you place your decision-maker ina much stronger position to prevailagainst anyone who might decide tochallenge him or her.

6. Including “choice of settings”language.

One strategy that may help you im-prove the probability that you willhave your choices honored is to specifyin your advance directive (living willand/or surrogate) your choice of thesetting in which you want to spendyour last days. You may want to rankorder several options to allow for trialsof certain types of treatment thatrequire hospitalization, but specifyingthat if there is not sufficient improve-ment, you choose to be moved to yourhome, or if that is not possible, to aresidential hospice or a nursing facilitynear your home and family or friends.

You may also want to add a statementthat once the conditions of your livingwill are met, you wished to be movedto your home or choice of facilities,even if such a move could increase therisk to your health status.

Reflection on which of these ap-proaches to advance care planning bestsuits you requires careful reflection.But don’t stop with the reflection.Follow up by implementing the ap-proach you choose, and talk with yourphysician(s) and your loved ones aboutwhat you have chosen. This processcan minimize a host of problems later.

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dvance care planning is ajourney. Like preparing formost journeys, it begins with

individual reflection about one’s goals.In this case, it is reflection about thegoals of your health care as you nearthe end of your life. Advance careplanning identifies care which you do,

and do not, wish to receive in varioussituations. This is commonly called a“living will” or “instructional direc-tive.” Advance care planning alsoidentifies those people whom you wantto make health care decisions for you ifyou are unable to communicate yourchoices. This is your “health caresurrogate.”

Ideally, advance care planning is aprocess of structured discussion anddocumentation, woven into yourroutine health care, with regular up-dates and revisions. It is designed to

ensure that your unique wishes will berespected, even if you are unable toparticipate in the decision-making.When the journey of advance careplanning is successful, it fosters asense of control and peace of mind, forboth you and your loved ones. Theprocess of clarifying and documentingyour end-of-life health care goals mayinvolve many people, but it is criticalthat one of these people should be yourphysician.

Why should I talk with myphysician?

Why is the physician’s involvement soimportant? Your physician has thelegal and professional responsibility toensure that your wishes are carriedout. Your physician will be the one atyour bedside, determining the actualmedical orders. But unless you person-ally make your physician aware of yourchoices in advance, your goals of caremay never be known in time to affectyour medical care. Like vaccinationsand regular check ups, advance careplanning is good preventive medicinebecause it avoids future confusion andconflict and ensures that you willreceive the health care that you want.

When should I talk to myphysician?

Communicating your advance careplans with your physician is the bestway to maintain control over your own

Advance Care Planning:Advance Care Planning:Advance Care Planning:Advance Care Planning:Advance Care Planning: Communicating End-of-Life Choices to Your Physician Communicating End-of-Life Choices to Your Physician Communicating End-of-Life Choices to Your Physician Communicating End-of-Life Choices to Your Physician Communicating End-of-Life Choices to Your Physician

Gail Austin Cooney, M.D.

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health care, even if you become unableto make your choices known. When isthe right time to have this discussion?Many people feel they must wait untiltheir physician brings up the topic. Donot wait! The best time to review yourgoals of care is now, when there ap-pears to be no need for the discussion:when your health is good or at leaststable. This is a time when both physi-cians and patients oftenfail to think aboutadvance care plan-ning, but it is theeasiest time toobjectively look atyour personal goalsand choices. It alsoensures that, whenurgent decisionsneed to be made,your values and goalsare already defined and known. Itrelieves your family of the burden ofmaking difficult decisions withoutknowing what you would have chosento do.

How do I get started?

Let your physician know ahead of timethat you want to review your advancecare plan at your next appointment.That way, the physician will be able toschedule enough time for a thoughtfuldiscussion. Bring your health caresurrogate with you to this appoint-ment. A joint meeting between thepatient, physician, and surrogate cancreate a common understanding ofyour goals. This can be invaluable ifyou become incapacitated and yoursurrogate and physician are later facedwith the need to collaborate about aplan of care for you.

What do I say?

Start by telling your physician that youwant to have a frank and realisticdiscussion. You want your physicianto feel comfortable asking you ques-tions. Your physician should comeaway from this appointment with aworking knowledge of your goals forhealth care. The physician needs anunderstanding that can be converted

into appropriatemedical care.

Next, reviewyour living will.This instruc-tional directiverecords yourwishes regard-ing various

types of medicaltreatments so that your desires can beunderstood and respected. UnderFlorida law, a living will, goes intoeffect, when the person becomesincapacitated, and has designated andmeets one or more of three possiblecriteria, Terminal Illness, PersistentVegetative State (PVS) or End-StageCondition. A person must designateone or more of these three criteria intheir living will, that they want metprior to the implementation of theinstructions in their living will. Pa-tients, surrogates, and physicians maydiffer in their interpretation of theterm “terminally ill,” as well as theother criteria. You should be aware ofthe legal definitions of these criteria,and be sure to discuss your individualdefinitions of “terminally ill” or theother criteria if different than the legaldefinitions with your physician. Youshould also discuss and your feelings

“When the journey of advance

care planning is successful, it

fosters a sense of control and

peace of mind, for both you and

your loved ones.”

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about end-of-life care with your physi-cian, so that he or she can correctlycarry out your living will. Your livingwill may also address “heroic mea-sures” or “life support.” Talk with yourphysician about those things that makeyour life “worth living” and what kindsof treatments you want or do not want.Physicians often have a much broaderexperience of the range of clinicalsituations to which your living willmay apply. Help them to understandhow you would weigh the pros andcons for recovery in different situa-tions. You may want to revise theinstructions in your living will in lightof this discussion with your physician.

Involve your surrogate in the discus-sion. Your surrogate should be some-one whom you trust and who is willingto represent your wishes in makingmedical decisions. Remember, yoursurrogate decision-maker does notneed to be a family member or signifi-cant other. Sometimes, the decisionsrequired are toodifficult for peoplethat close to you.They may be overlyinfluenced by theirattachment or by theburdens of care. Asurrogate acts as youwould act, withoutregard to his or herown personal goalsor beliefs. By havingyour surrogatepresent during the discussions withyour physician, you ensure that thetwo will be better equipped to makethe choices that you would make in adifficult end-of-life decision.

During your discussion, be sensitive toissues of individual conscience. Some-times, physicians may make personalmoral choices that are different fromyours. This does not necessarily makeone choice right or wrong. It merelyreflects the different goals that we eachhave for our own health care. Be surethat your physician will not havedifficulty following your living willbecause of his or her own personalfeelings about the end-of-life. FloridaStatutes ensures that your wishes takepriority and allows your physician toinvolve other physicians in your care, ifhe or she cannot fully support yourchoices. Listen to their concerns butremember that your decisions aboutyour health care are what ultimatelymatter.

Continue the Conversation

Be sure to continue the dialogue dur-ing subsequent visits, especially asyour situation changes. Your physi-cian can enter clarifications or changes

into your medicalrecord or you maywant to revise yourliving will. Byrepeating yourcommitment to thegoals of care estab-lished in your ad-vance directive, youreassure your physi-cian that thesedecisions are impor-

tant to you. This also serves to remindyour surrogate and your physician thatthese are accurate and up-to-datedocuments that reflect changes in yourhealth and in your life.

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Just Do It!

Although discussions regarding end-of-life care can be difficult ones, it isimportant to take the initiative andoutline your wishes to ensure that youreceive the care and treatment youdesire. A friend once asked me how tobe certain that her living will would berespected at the end of her life. Myadvice was for her to tell everyonewhat she wanted. And to keep tellingthem, month after month and yearafter year! And that the most impor-tant person to tell was her physician!This same advice applies to anyonewho wants to maintain control of hisor her health care, even up to the end-of-life.

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e are all parents, adult,children, spouses or part-ners, siblings, nieces, neph-

ews, grandchildren or grandparents.No matter what our role, we haveresponsibilities to family. One of themost difficult obligations is the role ofhealth care surrogate. In Florida, if aperson becomes incapacitated andcannot communicate health carewishes/decisions, a health care surro-gate can make those decisions. Whathappens if someone has not selected asurrogate? The responsibility formedical decision-making would fall tofamily members. This means that youcould automatically become a relative’sproxy should something happen tothem.

Would you know their wishes? Like-wise, one of your relatives could be-come your proxy if something hap-pened to you. Would they know yourwishes?

If advance care planning is not done,wonderful relationships may becomestrained for those left to decide medi-cal treatments for someone with anacute or chronic illness, or those at theend-of-life. This is why advance careplanning and advance directives are soimportant. Yet, most adults do nothave an advance directive that statestheir preferences regarding the use ofmedical treatments to prolong life.Many adults are reluctant to even talkabout it.

The Hospice of the Florida Suncoast,in partnership with many local organi-zations, participated in a statewideeffort in 2000, to encourage everyoneto discuss advance care planning andcommunicate wishes to friends andfamilies through conversations, and bycompleting advance directives. The“Isn’t It Time We Talk About It?”campaign focuses on the importance ofthese discussions.

Conversations about end-of-life issuesare not easy to start. Many peoplethink that they do not need to worryabout these issues. However, there arecountless tragic situations in which

Communicating End-of-Life Choices to Family and LovedCommunicating End-of-Life Choices to Family and LovedCommunicating End-of-Life Choices to Family and LovedCommunicating End-of-Life Choices to Family and LovedCommunicating End-of-Life Choices to Family and LovedOnes:Ones:Ones:Ones:Ones:

Isn’t It Time We Talk About It?Isn’t It Time We Talk About It?Isn’t It Time We Talk About It?Isn’t It Time We Talk About It?Isn’t It Time We Talk About It?Kathy Brandt, MS, andKaren Lo, M.S., R.N.W

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family members are fearful of makingdecisions about the care of someonewho did not communicate their ownwishes clearly. The following are tipsto start a conversation about end-of-life preferences.

Explore Personal Beliefs

Ease into the discussion by talkingabout personal values. If you knowsomeone’s values, it will be easier tomake decisions for them if you are everappointed their surrogate. This mightalso help to clarify their feelings priorto talking specifically about medicalcare options. You might considersome of the following questions:

• What would help you live wellat the end-of-life?

• What do you want to accom-plish before you die?

• How will you prepare for yourown death?

• What would you want said foryour eulogy?

• What legacy from your life doyou hope to leave to others?

• What would help you cope withfacing your death or the deathof a loved one?

• Do you have any relationshipsthat need attention, care and/orreconciliation?

Explore Preferences

Some people know what they do notwant, rather than what they do want.If you do not know the answer to amedical question, you can always askyour physician or call your local hos-pice. You might consider some of thefollowing questions:

• Who would be most able toprovide comfort to you?

• Where do you want to spendthe last days of your life?

• What kind(s) of medical care doyou want as the end-of-lifeapproaches?

• Are there specific medicalprocedures that you want tolearn more about before makingcare decisions?

• Are there some procedures youdefinitely do not want?

• Have you discussed these issueswith anyone?

• Have you completed any ad-vance directives such as a livingwill? If so, where is it?

• Are there any issues related todignity or quality of life at theend-of-life that you want toexplore with your family orphysician?

Conversations are important, and needto happen whether or not someoneactually has an advance directive.

Many people find the idea of writingdown their preferences in a living willconfusing and intimidating. Livingwills are written statements in whichan individual expresses his or herdesires for end-of-life care. They

“If advance care planning is not

done, wonderful relationships

may become strained for those

left to decide medical treatments

for someone with an acute or

chronic illness, or those at the

end-of-life.”

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preserve the individual’s right toaccept or decline care — even when heor she may be incapacitated. You donot need a lawyer to complete andexecute an advance directive.

Three Types of AdvanceDirectives

Living will – A living will provideswritten directions regarding life-prolonging procedures to provideguidance and instructions when aperson is no longer able to communi-cate in a life-threatening situation.

Health care surrogate — A healthcare surrogate is an individual youselect to make medical decisions foryou when you are no longer able tomake them yourself.

Durable power of attorney — Adurable power of attorney is a docu-ment that can delegate the authority tomake health, financial and/or legaldecisions on a person’s behalf. It goesinto effect when a person is unable forhimself or herself. The power of attor-ney must specifically state that thedesignated person is authorized tomake health care decisions. Thepower of attorney must be inwriting and must show theperson’s intent to give specifiedpower if the person is incapaci-tated. You, your family and lovedones, your physician, your lawyer and/or your clergy should have copies ofyour advance directives.

We cannot plan when or how we willdie. However, we can ensure that ourwishes are honored at the end-of-life.Let it be a time of peace, where the

greatest burden to your loved ones issaying goodbye — and not determininghow you will die. Is it not time youtalk about end-of-life planning withyour friends, family, and health careproviders?

If you or someone you know needsfurther information about advancedirectives, please refer to the “Re-sources for End-of-Life Choices” atthe back of this booklet.

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ights are slippery things.They are difficult to identify,difficult to agree on, and

difficult to protect. Worse, we tossthem around in conversation likepoker chips or sacks of beans:

· Right to life,· Right to health care, or· Right to die.

The point of a right, or entitlement, isthat it seeks to ensure some benefit orto protect us from some harm. Oneright that most everyone correctlyagrees on is the right to bodily integ-rity or the right to control access toone’s body — fundamentally, the rightto say “no” to unwanted touching.

Based on the powerful concept of self-determination or autonomy, this isalso the right to refuse unwantedmedical treatment. Now, there are twotimes one might refuse a medicalintervention: either before it has begunor after it has begun. This has led overthe years to some confusion about thedifference, if any, between withholdingtreatment and withdrawing it.

Well, is there a difference? What kindof difference is it? How does thisquestion matter in discussions of end-of-life care?

For some people, there is a psychologi-cal or emotional difference betweenwithholding and withdrawing life-sustaining treatment: “If we never

start we will not feel like we are givingup.” More importantly, some peoplehave the feeling that the act of with-drawing a tube or turning off a ma-chine is an action that somehow makesthem responsible for a death. This isdespite the fact that what causes deathin such cases is the underlying diseaseor malady.

Additionally, some religions distin-guish between withholding and with-drawing. It is sometimes thought thatthe act of removing life support expe-dites the dying process and is thereforeinappropriate, whereas not starting anintervention may be permissible. Thishas led to cases in which it was judgedunacceptable to terminate treatmentuntil a nutrition or ventilation tubeneeded to be cleaned. Once the tubewas removed for that “necessary”purpose it was judged permissible notto reinsert it.

In other faiths, the act of removing lifesupport may be seen as eliminating aspiritually unnecessary burden.

Is the withdrawing/withholding dis-tinction of any ethical use? Here it ishard to see why it should be, or how itcould be in those cases in which thewithdrawal was requested by thepatient (perhaps in a living will) orthrough a surrogate. To see why mostphilosophers and others contend thereis no useful ethical difference betweenwithdrawing and withholding, we

The Moral and Legal Equivalency BetweenThe Moral and Legal Equivalency BetweenThe Moral and Legal Equivalency BetweenThe Moral and Legal Equivalency BetweenThe Moral and Legal Equivalency BetweenWithholding and Withdrawing of TreatmentWithholding and Withdrawing of TreatmentWithholding and Withdrawing of TreatmentWithholding and Withdrawing of TreatmentWithholding and Withdrawing of Treatment

Kenneth W. Goodman, Ph.D.

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should return to the importance of theright to refuse treatment.

Recall that people may (and probablyshould) say “no” to forms of physicalcontact they find objectionable orundesirable. This right to refusewould be hollow if it did not applyeven when the stakes are high. So, aright to refuse is not a right only whenoffered a cup of tea. It is also a right torefuse cancer treatment, cardiopulmo-nary resuscitation or brain surgery.These are serious interventions. Theymight be life saving; indeed, they oftenare. But if “no means no” in the hospi-tal, there is no sense in which it makesany difference whether the actionbeing refused has commenced or not.

In other words, the right to refusetreatment should be respected whetherthe treatment has been started or not.

It can be quite difficult to decide if aparticular treatment is worthwhile.Reasonable people differ on questionsrelated to dignity, hope, and futility.Individual varia-tions are rich andintimate, andrequire consulta-tions with familymembers, doctors,nurses, clergy, and friends. Given thesame set of facts, the same diagnosis,the same prognosis, two differentpatients might take two differentpaths. This is the essence of freechoice.

It is also worth observing that in somecases, and contrary to expectations,patients sometimes do better whencertain interventions are ceased. For

instance, a growing body of evidencesuggests that artificial nutritionthrough feeding tubes might actuallycause patients to die sooner by aspira-tion.

The right to refuse treatment is notsimple, no matter whether the refusalis before or after a treatment starts. Torefuse treatment, especially life-sus-taining treatment, a patient must fulfillthree requirements. He or she

• Must be adequately informed ofthe consequences of the refusal,as well as alternatives to it.

• Must be capacitated, or compe-tent to understand and appreci-ate the information.

• Must be making the decisionvoluntarily, without coercion orundue influence.

Of course, these requirements are justthe requirements of informed or validconsent, except that here we are askingthem to serve as the criteria for validrefusal. These criteria do not make therefusal of life-sustaining treatment

easier — rather, theyorder it and give itethical credibility.They also serve tounderscore the

lesson we have drawn sofar, namely, that there is not a usefulethical distinction to be found betweenwithdrawing and withholding of treat-ment. For if a patient met these crite-ria and therefore was informed, ca-pacitated and not coerced, there wouldbe no reason to force him or her toendure an unwanted intervention,even if it happened to have beenstarted already. That we would have towithdraw it instead of withhold it is

“Rights are slippery things.”

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seen to have no ethical traction what-soever.

In addition to all these ethical reasonsfor not making too much of the differ-ence between withdrawing and with-holding treatment, there is a verypractical one (with ethical upshots). Itis this. If it was harder or more diffi-cult to stop a treatment than never tocommence it, we should fear the loss ofall those instances in which the healthcare team, including the patient,undertook an intervention for a trialperiod, to see if the results were satis-factory. If you are going to make itmore difficult for me to say “no” after atreatment has started, then I might beless likely to allow it to be started inthe first place. Surely this would be atherapeutic loss.

At its best, applied ethics guides deci-sions so as to make them better, noteasier or happier. It will still be sadwhen the patient dies. But not nearlyas sad as it will be when the patientdies after a period in which we haveignored or overruled her valid refusal.

What is more, by showing that thedifference between withdrawing andwithholding is not ethically significant,we have grounded our intuitions,simplified the decision process andmaybe even improved the chance of agood outcome! It is a measure of theutility of bioethics in end-of-life care:practical, straightforward and respect-ful of the rights we sometimes strugglevery hard to enjoy.

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hould a physician resuscitate apatient if the heart has stoppedbeating? The answer to this

question seems to be obvious. If youask most people, whether they wouldwant their heart restarted if it stopped,the overwhelming answer would be“Yes, of course.” And this answermakes sense. However, the answer isnot so obvious for patients who aresuffering serious life-ending disease, orfrom patients who are actually in thedying process. For these patients therelative benefits of resuscitation,versus the burdens associated withresuscitation are much more debat-able, and where a host of difficult andoften confusing issues for patients andphysicians arise.

In thinking about the issue of resusci-tation, the first thing to note is thatnothing significant happens withpatient care in a hospital without aspecific physician order. Most physi-cian orders are concerned with whichtreatments and medications a patientwill receive. A physician order not toprovide a specific treatment is theexception. It is also contrary to theprevailing medical model of emphasiz-ing cure and medical intervention.Medical education emphasizes activemedical intervention when faced witha patient who is seriously ill. The veryidea that medicine might offer nocurative treatment to a seriously illpatient is difficult for both physiciansand patients to accept. Thus, if no

resuscitation attempt is to be made aspecific physician order in the patient’smedical record is required. Withoutthat Do Not Resuscitate Order(DNRO) the hospital staff will resusci-tate automatically in the event of acardiac arrest.

The question then becomes, whenshould a physician write a DNRO?There are at least four acceptablereasons this order might be written.The first is that in a discussion be-tween a physician and the competentpatient, the patient decides that givenhis/her medical situation, in the eventof a cardiac arrest, the burdens associ-ated with a resuscitation attemptsimply out-weigh the possible benefitsof resuscitation. The second reason isthat the incapacitated patient has anAdvance Medical Directive that saysthat the patient does not want to beresuscitated, given the patient’s cur-rent medical condition. The thirdreason is when the wishes of a cur-rently incapacitated patient, to not beresuscitated, are expressed to thephysician by the patient’s surrogate orproxy. Finally, a physician may write aDNRO, if that physician believes thatany resuscitation attempt would be“medically futile.”

A DNRO based on the patient’s in-formed decision resulting from aconversation between a capacitatedpatient and the patient’s physician isthe least problematic. What should

“Do Not Resuscitate Orders”:“Do Not Resuscitate Orders”:“Do Not Resuscitate Orders”:“Do Not Resuscitate Orders”:“Do Not Resuscitate Orders”:Do They Have to Pose a Dilemma?Do They Have to Pose a Dilemma?Do They Have to Pose a Dilemma?Do They Have to Pose a Dilemma?Do They Have to Pose a Dilemma?

Ray Moseley, Ph.D.

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the patient know before making thisdecision and agreeing to a DNRO?The physician should give clear under-standable information about the medi-cal procedures that take place duringresuscitation. The patient shouldunderstand the likelihood of a “suc-cessful” resuscitation, and the likelymedical/physical condition that wouldbe experienced after resuscitation.Discussion should occur about thepossibility and desirability of furtherresuscitation attempts, if the initialattempt is successful but is followed byanother cardiac arrest. The patientshould also understand whether resus-citation, if attempted, affects the long-term prognosis.

A clear and open discussion between apatient and physician about resuscita-tion is, of course, difficult under eventhe best circumstances. When a pa-tient is incapacitated, making thedecision about whether to resuscitatebecomes an even greater challenge.This is because in this circumstancethe physician must rely on thepatient’s written wishes or thepatient’s surrogate or proxy for guid-ance. If the patient had previouslydiscussed resuscitation with theirphysician, or if she clearly documentedher resuscitation wishes in an AdvanceMedical Directive (Living Will), or ifthe patient’s wishes were specificallymade known to the surrogate or proxy,then the physician would have confi-dence in the appropriateness of writinga DNRO. However, even under these“best” circumstances, the physicianand/or surrogate/proxy may haveuncertainty since the patient might nothave anticipated exactly the medicalcondition being currently experienced,

or had a clear understanding of what isinvolved in resuscitation. (A surrogatedecision-maker is somebody the pa-tient had specifically named to be thedecision-maker in the event of patientincapacity. A proxy decision-maker isrecognized from the hierarchy list instate law, usually a close relative, asthe person to make the decisions forthe incapacitated patient.)

This problem becomes even worsewhen a currently incapacitated pa-tient fails to specifically mention theresuscitation issue in his AdvanceMedical Directive, or make his specificwishes known to the surrogate/proxy.In this case the physician must decideif the general non-treatment wishes ofa patient as expressed in his AdvanceMedical Directive and/or to the surro-gate/proxy is sufficient evidence tojustify the writing of a DNRO. Thisjudgment call can be very uncomfort-able for the physician who wants torespect the patient’s decision-makingautonomy.

Another difficult circumstance ariseswhen a physician concludes that resus-citation will simply not achieve anymedical goal for the patient and thusconclude that resuscitation would bemedically futile. The physician couldthen write a DNRO based on the medi-cal futility of resuscitation. The simpleidea behind this decision is that aphysician should not be obligated toprovide a medical treatment that willnot work. Furthermore, patients wouldnot want to be subjected to treatmentsthat offer no benefit. The problemwith “medical futility” is that it is oftendefined in terms of the personal valuesof physicians and patients. Most of

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these decisions come down to whatburdens one thinks is acceptable forrelatively small and often unknownchance of transitory or limited ben-efits, and this assessment variesgreatly between different people.Because this is often asubjective “value”decision, theconsensus inmedical law andmedical ethics isthat these issuesshould be deter-mined by thepatient’s own values, not the values ofa physician or even of next of kin.Physician decisions about the medicalfutility of resuscitation should bereserved for only medical situationswhere a resuscitation attempt clearlywill not succeed in restarting the heart.Even in this limited circumstance thepatient or the surrogate/proxy shouldbe consulted and informed if thephysician is going to write a DNRO.

Even if resuscitation is correctly deter-mined to be medically futile, it doesnot mean that other medical treat-ments would also automatically bemedically futile. Indeed, some mightbe quite effective, or at least offer someprospects for improvement for thepatient. Whether to accept othertreatments should be consideredjointly by the patient and physicianand independently from the DNRO.

One of the most serious confusionsover the DNROs is caused by thesemultiple sources for the same physi-cian order: A DNRO on a patient’smedical record may be confused with apatient’s Advance Medical Directive.

Medical/nursing staff might see that apatient has a DNRO and presume thatit indicates that the patient also has anAdvance Directive indicating thepatient desires only comfort care.Others might assume that anyone who

would refuseresuscitationwould alsorefuse allother curativemedicalinterventions.This view is

partly heldbecause many health care profession-als see that medical intervention mustbe an “all or nothing” response to apatient’s medical situation. In otherwords, if you are going to try and savea patient, then one should do everypossible medical treatment to do so.This “all or nothing” view, of course,may easily be false. A patient mightwant relatively aggressive medicaltreatment to extend his current qualityof life, while refusing the possibility ofa resuscitation attempt which if at-tempted would only leave him with adiminished quality of life.

In summary, if your physician asksabout the possibility of a DNRO, youshould talk in detail with him or herabout the benefits and burdens of aresuscitation attempt. Your physicianshould be willing to discuss the likeli-hood of a successful resuscitation inthe event of a cardiac arrest, yourpossible medical condition after resus-citation, and the impact on your even-tual prognosis. In addition to thisinformation, if you want to include theresuscitation issue in your AdvanceMedical Directive, you should talk with

“Should a physician resuscitate a

patient if the heart has stopped

beating? The answer to this question

seems to be obvious.”

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your physician about how to makethose instructions as clear as possible.Equally important you should shareyour views about resuscitation withwhoever will make health care deci-sions for you if you become incapaci-tated. Make sure that they are willingto respect your wishes. If you have notyet identified a specific surrogate tomake decisions for you if you becomeincapacitated, it is a good idea to do so.These steps will go a long way in help-ing insure that your decisions aboutresuscitation will be honored, and thatconfusion over these decisions will beminimized.

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he emergency medical ser-vices (EMS) system deliversrapid out-of-hospital medical

care for victims suffering from suddenillness or injury. Over the last 30 years,new developments in medical technol-ogy and new treatments have im-proved the ability of EMS providers tomobilize care and sustain life in emer-gency situations. Emergency medicaltechnicians (EMT) and paramedicscomplete comprehensive courseworkand are trained to perform highlytechnical life-saving measures usingsophisticated equipment. Standardlevels of care have evolved from closedchest cardiac compressions to defini-tive techniques using equipment suchas automated external defibrillators, inmany instances reversing suddendeath outside the hospital.

Until very recently, there were fewprovisions in emergency medicine forwithholding care from patients whowould not benefit from advances inmedical technology and training —specifically, those who suffer from anend-stage condition, terminal illness orpersistent vegetative state, whereadvanced life-saving measures can bepainful, intrusive and futile. As early as1990, the growing awareness over end-of-life issues and the desire to honor apatient’s wish not to be resuscitated,prompted the Department of Health,Bureau of Emergency Medical Servicesto examine ways to validate a docu-

ment that would allow EMS providersto honor a patient’s last wishes.

In 1992, the first legislation addressingpre-hospital Do Not Resuscitate Or-ders (DNRO) was enacted. The 2000Do Not Resuscitate Order legislationauthorized changes to the form, andalso provided protection from civilliability for criminal prosecution tovirtually every licensed health carefacility honoring the DNRO. Since thattime, the Bureau has consulted withhealth care providers, consumers andother state agencies. In February2000, a revised, yellow DNRO formwas redesigned for simplicity andportability.

The Do Not Resuscitate Order

The development of the DNRO wascritical to EMT’s and paramedics.When an EMT or paramedic arrived onscene they needed to respond immedi-ately by providing immediate care tothe patient in cardiac or respiratoryarrest, unless presented with clearproof of the patient’s wish not to beresuscitated. This situation couldbecome volatile and occasionally led toconflict when family members dis-agreed with the EMT’s decision toattempt resuscitation. Many healthcare facilities would use their ownforms, and doctors would write, “DoNot Resuscitate” in a patient’s chart.However, if a patient was transferred

Emergency Medical Services and theEmergency Medical Services and theEmergency Medical Services and theEmergency Medical Services and theEmergency Medical Services and theDo Not Resuscitate OrderDo Not Resuscitate OrderDo Not Resuscitate OrderDo Not Resuscitate OrderDo Not Resuscitate Order

Freida Travis and Jessica Swanson

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or transported to another facility, theirwishes may or may not have beenhonored.

EMS needed a readily accessible,standardized document that wouldmeet the needs of the patient, but thatwould also be recognized statewide byEMS providers as legal and binding,protecting them from potential civiland criminal liability for honoring theDNRO document.

The revisions in 2000 were made tothe DNRO in an attempt to alleviatepublic and professional concerns thatdo-not-resuscitate orders were confus-ing, hard to access and could not beused when transporting a patientbetween health-care settings. Toassess the extent of these problemsand to identify possible solutions thestate held workshops to collect inputon how the DNRO should look, andhow it could be incorporated through-out the continuum of care. The out-come of these workshops resulted in aform that was easy to identify, met theneeds of the patient, and was portablebetween health care settings. Conse-quently, the DNRO is intended to beused as a tool to record the patient’swishes, reduce conflict on scene andallow EMS personnel to provide com-passionate and appropriate care

The DNRO “Yellow Form”

The DNRO is often referred to as the“yellow form” because it must be eitherthe original on canary-yellow paper, ora copy made onto similar colored-yellow paper. It must be signed by theindividual or the individual’s healthcare representative and by a Florida

licensed physician. According toChapter 64E-2.031, Florida Adminis-trative Code, any previous version ofthe Department of Health Do NotResuscitate Order will be honored, andthere is no need to sign a new form.

The Florida DNRO is only valid inFlorida, and it can be revoked, eitherorally or in writing, at any time by thepatient or the patient’s health carerepresentative.

Patient Identification Device

At the bottom of the DNRO there is apatient identification device that wasincluded and may be removed from theform by cutting on the perforated

NOTE: This form shall be printed onyellow paper (64E-2.031, FloridaAdministrative Code)

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lines, completed and may be lami-nated. To use the Patient IdentificationDevice, the person or the person’shealth care representative and aFlorida licensed physician must signthe device. If laminated, the device canbe worn around the neck, on the wrist,or attached to bedding, clothing orsomewhere else where it can be easilyseen. The Patient Identification Devicewas designed for portability betweensettings.

The device is a card, and does not haveto be completed with the DNRO, Form1896, for the form to be valid. Oncecompleted and removed from theform, the Patient Identification Deviceis equally valid to the DNRO, Form1896. The Patient Identification Deviceshould not be carried as a wallet card.Emergency medical technicians andparamedics are unlikely to have thetime before they attempt resuscitationto search a wallet of someone in car-diac or pulmonary arrest. If using thedevice, it is best to keep it displayed oreasily accessible at all times.

Portability

The yellow DNRO form was rede-signed also with portability in mind,allowing one document to walkthrough many different health caresettings. According to Florida Statutes,the DNRO may now be honored inmost health care settings, includinghospices, adult family care homes,assisted living facilities, emergencydepartments, nursing homes, homehealth agencies and hospitals. It alsoprotects the health care professional,from criminal prosecution or civilliability for the withdrawal or with-

holding of cardiopulmonary resuscita-tion. The significance of portabilitymeans that having one form signed,whether it is the original or a copy, andkeeping a copy with you will protectyour wishes if you are transferredbetween health care settings.

Do Not Resuscitate Orders, LivingWills and Advance Directives

The DNRO is different from a livingwill or other type of advance directive.

A Do Not Resuscitate Order is a spe-cific, physician-directed document thatsays that the individual does not wishto be resuscitated in the event of car-diac or pulmonary arrest. It is usuallywritten for someone who is terminallyill, suffering from an end-stage condi-tion or in a persistent, vegetative state.According to the DNRO, Form 1896,cardiopulmonary resuscitation in-cludes artificial ventilation, cardiaccompression, endotracheal intubationand defibrillation.

Calling 9-1-1

When a person signs a DNRO it is acritical time in his or her life. He or shehas made a personal choice, hopefullywith the support of family, caregiversand health care workers, includinghospice professionals and volunteers.Even if prepared, managing death isdifficult and may not occur instantly.The person may experience a widerange of symptoms, including short-ness of breath, pain, seizure or otherproblems. When this happens, thosecaring for the patient may be unsure ofwhat to do, scared, or just want thesupport of a health care professional.

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This is the time at which many decideto call 9-1-1, the emergency servicestelephone number.

Any family member, caregiver orhealth care provider can call 9-1-1 atany time to attend to the patient with aDNRO. The DNRO only means that inthe event of cardiac or pulmonaryarrest, EMS will not attempt resuscita-tion. A person will still be treated forpain and provided “comfort care”. It isclear that a DNRO does not mean “donot treat for pain”, “do not offer com-fort care measures like oxygen” or, ifthere is a reversible medical problem,“do not treat or transport to anotherfacility”. The State of Florida is under-taking an educational effort to prepareemergency medical technicians andparamedics to better respond to callsinvolving a DNRO so that they are

prepared to treat and comfort patientsand families at the end-of-life.

Emergency Medical Services personnelare there for the family and act as aresource in a difficult time, providingcomfort care or transport to anotherfacility if the need arises. If 9-1-1 iscalled, it is important to communicatea brief description to the dispatch

operator and explain the situation. Forexample, “My family member has aDNRO form, but is convulsing and Idon’t know what to do.” When theemergency medical technician orparamedic arrives, as much informa-tion as possible should be shared withthem so they will be able to provide themost effective and efficient care.

When the emergency medical techni-cians and/or paramedics arrive, it isimportant to have the DNRO availableimmediately, so that they will notdelay treatment while someonesearches through files or drawers forthe proper documents. Make clear thewishes of the patient, specifically thatthey do not want to be in pain or whattype of comfort or care they need orrequest. The emergency respondingEMS professional is there to answerany questions or concerns about treat-ment and care.

Resources

When deciding to complete a Do NotResuscitate Order, it may be best tospeak with your physician, local clergy,or a social worker about your wishes.You should also inform your familymembers or caregivers about yourwish not to be resuscitated. It is impor-tant to reiterate that a Do Not Resusci-tate Order does not mean do not treat,and the provision of comfort caremeasures, such as oxygen or medicinesare available through emergencymedical services. If you have questionsabout the DNRO, Form 1896, contactyour local EMS provider, your physi-cian, local attorney or senior centerprogram. You can also call (850-245-4440, ext. 2731 or 2742) or write to the

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Bureau of Emergency Medical Ser-vices, 4052 Bald Cypress Way, Bin C 18,Tallahassee, Florida 32399-1738 orvisit the Bureau of EMS’s web page athttp://www.doh.state.fl.us. Florida is avery diverse state, and many peoplehave requested translations of theDNRO in their native language. Unfor-tunately, the Bureau of EMS does notprovide translations of the form. Thereare some health care agencies inFlorida that do translate, but to dateonly into Spanish. Emergency medicalservices providers cannot honor thistranslation, and it should be used onlyfor informational purposes. If thepatient or patient’s health care surro-gate signs a Spanish version theyshould also sign the Department ofHealth English version 1896 and keepthe forms together. This ensures that if9-1-1 is called the responding EMT orparamedic can read and honor theEnglish, Department of Health ver-sion, while also assuring that thepatient fully comprehends the docu-ment.

Conclusion

Emergency medical services providersthroughout the state are working intheir communities to provide leader-ship and resources for people at theend-of-life. The DNRO is one toolpeople can use to help ensure thattheir wishes not to be resuscitated willbe honored. The DNRO was rede-signed to be easy to understand, locateand transfer between health caresettings. EMS will work in partnershipwith the community and health carefacilities to provide medically appro-priate and compassionate care, im-proving the quality of end-of-life care.

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Understanding Grief To Help Yourself and OthersUnderstanding Grief To Help Yourself and OthersUnderstanding Grief To Help Yourself and OthersUnderstanding Grief To Help Yourself and OthersUnderstanding Grief To Help Yourself and OthersKathy Brandt, M.S.

G their own ways, and we can providesupport, even providing the opportu-nity for healing and personal growth.

How to Help

The most important thing to do is tokeep in touch through a simple word,touch on the arm, or card in the mailso that the person does not feel iso-lated. Many times people who aregrieving find that friends forget to callduring the days and weeks after afuneral. Often the ability to focus and

accomplish simple tasks disap-pears. Ask how you can help bydoing chores, shopping or otheractivities that might be beyondtheir current capabilities.

A common fear people havewhen reaching out to a grieving

person is “I’m afraid I’ll say the wrongthing.” Simply providing an opportu-nity for the grieving person to talk canhelp. You might say:

• I am sorry for your loss.• I cannot imagine how you feel.• I do not know what to say.• How is your life different?• What is the hardest time for

you?• Is there anything I can do for

you today?

Helping remember the deceased canbe beneficial. Talking about the de-ceased shows that you care and havenot forgotten the loss. Ask the personto tell stories about the deceased or

rief most often occurs when aloved one dies. However, peoplealso grieve other losses. Losing a

pet, home, or job, having a child moveaway, losing a child through miscar-riage or adoption, experiencing adivorce or breakup — all can causeintense grieving. While more than halfof all American adults will experiencethe death of someone they know thisyear, few people understand grief,where to find help, and how to supporta grieving person.

Grief is a normalemotional, spiritual,social and physicalreaction to a signifi-cant loss of any kind.Grief is a life-chang-ing journey that isoften something aperson adjusts to and moves through,rather than gets over. The differenceis significant. Getting over grief impliesthat the symptoms will cease, and theperson will feel the same as before.This is an unrealistic expectation.While we can expect the pain to de-crease, we never “get over” a signifi-cant loss. A more realistic expectationis learning how to adapt.

Each person adjusts to loss differently.One person might need to be isolatedfor a period of time, while someoneelse might prefer to be around people.A person may actively grieve the lossfor weeks, months or years. We mustrecognize that people need to grieve in

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share a memory about the person.Looking at photos and videos allowsthe chance to review life experiences.

Remember, the grieving person maysimply need you to listen with compas-sion. Do not feel you need to “fix” theperson. Quietly spending time with aperson in their grief can be a valuablegift.

If a person seems embarrassed orappears to be choking back tears, itmay be helpful to mention that cryingprovides healthy relief and reflects thesignificance of their loss. Attemptingto distract the bereaved through forcedcheerfulness discounts the person’sfeelings.

Grief can be a long and sometimesisolating journey. As we age, our grieffrom previous losses is remembered.For people who have had multiplelosses over a short time, the grief canintensify with each loss, so it may behelpful to acknowledge all of the losseswhen comforting the grieving person.

Over time, look for opportunities toinclude the grieving person in socialactivities. Perhaps start with indi-vidual activities and gradually work upto larger group activities. You canoffer to take the person on a ride, tothe movies, for a walk, out to lunch,anything to help the person ease backinto the world.

Holidays, birthdays and anniversariesare always difficult times. A card in themail, phone call or planned activity toremember the deceased are ways toacknowledge the life that was lost andgrief that is felt. The anniversary of thedeath can often bring about the need

Typical Grief Responses

Physical:

• Hollowness in stomach• Weakness• Muscle tension• Tightness in the chest• Lack of energy or strength• Heart palpitations• Dry mouth• Stomach problems• Over sensitivity to noise• Changes of sexual desire• Breathlessness• Weight gain or loss• Exhaustion• Changes in sleep patterns• Vulnerability to illness

Spiritual:

• Changes in spiritual belief• Ambivalence• Anger directed at God• Questioning• Increased reliance on spiritual hope• Yearning• Change in interest in the after life• Guilt• Need for forgiveness

Emotional:

• Numbness• Anger• Hopelessness• Relief• Guilt• Shame• Sadness• Loneliness• Abandonment• Yearning• Helplessness• Ambivalence• Anxiety• Loss of control• Loss of interest in pleasurable activities• Depression• Despair• Inability to focus

Social:

• Decreased interest in social events• Fear of being alone• Desire to be alone with memories• Change in level of involvement with

friends• Lack of interest in holiday celebrations

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to talk about the deceased and processthe grief again. It can be helpful tomemorialize the deceased at this time.

Finding Help

Often people who are grieving do notknow where to find help. It is impor-tant to know about the resourcesavailable in your community. Bereave-ment groups are a good way to get peersupport. Bereavement groups helppeople to understand that what theyare experiencing is normal, throughlistening to others share their feelings.AARP, the American Cancer Society,churches and synagogues, hospicesand other community organizationshave ongoing bereavement groups thatare facilitated by trained professionals.

Many people find that attending be-reavement groups with people whoexperienced a similar type of loss ishelpful. There are specialized bereave-ment groups for nearly everyone. Forthose who are uncomfortable withbereavement groups or who needindividual counseling there are mentalhealth professionals in most communi-ties who are trained grief and bereave-ment specialists. Every hospice hastrained counselors who can help withthe grieving process, and many offerservices to anyone in the community,even if hospice did not care for thedeceased.

Community clergy members are an-other resource and can offer spiritualand emotional counseling to peopleduring the grieving process. Manypeople question their relationship withGod and the spiritual meaning of lifeand death. For more information, callyour local hospice.

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alliative care is often misun-derstood, yet it is possible youmight want to receive pallia-

tive care at some point. So what is itand who can receive it?

Palliative care focuses on the relief ofphysical, emotional and spiritualdistress. It is most often equated withpain and symptom management andrelief of suffering. To give a simpleexample of palliative care — when youtake a decongestant to relieve a headcold, it will not cure the cold, but itrelieves the symptoms. That is pallia-tive care. The goal is not curing thecold; it is eliminating the symptomsthat you are experiencing.

Most palliative care is done for thosein the last years of life — when a dis-ease or condition can not be cured.However, aggressive palliative care canalleviate the symptoms. Palliative carecan help to minimize suffering frompain, nausea, shortness of breath,wounds, confusion, anxiety and othersigns and symptomsfrom debilitatingillnesses. By concen-trating on relief fromsuffering, people canspend time withloved ones andremain engaged inliving. Improvingquality of life is thegoal of palliative care.

Since quality of life is influenced bymany factors including non-physicalsymptoms, holistic palliative carefocuses on the entire person includingemotional and spiritual needs. Manypeople with an advanced illness haveanxiety, become depressed, feel angryor question their spirituality. Palliativecare counselors and chaplains aretrained to help support the patient towork through feelings and adapt totheir illness and circumstances. Withgood palliative care, people can oftenaccept their illness or condition andenjoy some quality of life.

Ideally palliative care is provided by aninterdisciplinary team, which includesphysicians, nurses, social workers andcounselors, chaplains, home healthaides and volunteers. The team’s job isto work together to focus on the physi-cal, emotional and spiritual needs ofthe patient and family. Care is pro-vided in a patient’s home (which canalso be a nursing facility, senior livingcommunity or hospice residence) or at

the hospital priorto discharge. Thisis the hospicemodel of pallia-tive care.

Hospices in theUnited Stateshave been provid-ing palliative carefor more thantwenty-five years.

Palliative Care:Palliative Care:Palliative Care:Palliative Care:Palliative Care:Will You Ever Need or Want It?Will You Ever Need or Want It?Will You Ever Need or Want It?Will You Ever Need or Want It?Will You Ever Need or Want It?

Kathy Brandt, M.S.

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And while all hospice care is palliativein nature — seeking to improve qualityof life by controlling symptoms — notall palliative care is the same as hos-pice care.

Some palliative care teams or clinicsare medically driven, with care focusedprimarily on the physical symptoms.While this is certainly necessary, thisapproach sometimes discounts thetremendous emotional and spiritualburdens usually associated with ad-vanced illness.

Since palliative care focuses on symp-tom management andrelief, good pallia-tive care canoften help toprevent or reducethe number oftimes someonehas to go to ahospital. Forpatients withchronic conditions,such as heart or lung disease this isparticularly important. If there is asudden onset of symptoms, peopleoften have to go to the hospital if theirphysician is unavailable or the symp-toms are too severe.

Good palliative care is pro-active — itfocuses on managing current symp-toms and preventing new ones. This isdone by teaching patients and theircare givers simple things to reduce thechances that symptoms will get severe.For example, certain things can bedone to make it easier for patients withlung disease to breathe. Putting a fanin the room to increase air circulation,lowering the air temperature, making

sure the patient doesn’t feel claustro-phobic and teaching the caregiver waysto reduce anxiety can help to reducethe severity of breathing difficulty.Helping to reduce the stress of thefamily caregiver can be just as impor-tant in calming the patient. These tipsare taught and reinforced throughvisits to the patient’s home. Nursesalso ensure that patients andcaregivers understand the medicationsprescribed and how and when to takethem.

Recently many hospices and otherhealthcare providers started looking to

expand the availabil-ity of palliativecare and servicesto people in thelast years of life.Some hospices arestarting separateservices for peoplein the last years oflife who may

benefit from goodpalliative care to control symptoms.

Since this expanded hospice model isnew, each community may have differ-ent services available. For examplesome palliative care teams include anadvanced registered nurse practitioner(ARNP), palliative care physicians andsupport from the hospice interdiscipli-nary team of social workers/counse-lors, chaplains, home health aides andvolunteers. With this model the teamworks with the patient’s current physi-cian and the patient and familycaregivers to identify what services areneeded and desired. The ARNP is theprimary “care manager” coordinatingservices among team members to be

“To give a simple example of

palliative care — when you take

a decongestant to relieve a head

cold, it will not cure the cold, but

it relieves the symptoms.”

42

sure all needs are met. Hospices mayoffer different “pre-hospice” palliativeservices, call your local hospice formore information.

Some hospitals and nursing facilitiesare also providing palliative care totheir patients to ensure symptoms arecontrolled. Some have palliative careclinics and others have a palliative carenurse and physician who are broughtin to consult with other physicians tohelp with symptom management.Community partnerships betweenhospices, hospitals and nursing facili-ties, in cooperation with physicians,can ensure that patients and familiesreceive excellent care across caresettings. This new focus on palliativecare can only improve the quality oflife for those experiencing symptomsfrom chronic or life-limiting illnesses.

Hospice care in the United States wasoriginally designed to provide care tocancer patients in the last six monthsof life. Over the past twenty years ashospice services have evolved to carefor all people with a life-limiting ill-ness, the current Medicare HospiceBenefit model of hospice care nolonger meets all the needs of patientswith chronic illnesses. Patients andfamilies are often unable to access careuntil the last days or weeks of care,therefore missing the benefits of thepalliative care team.

Services beyond the traditional hospiceservices offered in the last six monthsof life are not currently part of theMedicare or Medicaid benefits and arenot covered by insurance policies.Programs may use a sliding fee scale,to determine how much is owed to the

hospice for the services. This enablespeople with limited resources to accesscare.

Several demonstration projects areunderway to determine if these ser-vices can actually save Medicaremoney by managing patient’s symp-toms without hospitalization. If thesework, perhaps palliative care willbecome a staple of the Medicare Ben-efit, helping to ensure that peoplereceive quality, holistic care which notonly relieves symptoms but also helpsto support the patient and family whoare living with a chronic or life-limit-ing illness.

Like other aspects of medical care,palliative medicine for people in thelast years of life is a complex medicalspecialty. Until recently, most healthand human service professionalsreceived little training in palliativecare. Most hospices provide extensivetraining to staff to ensure that they areexperts at the art and science of pallia-tive care.

National training programs have beendeveloped to teach physicians andnurses the principles of palliative care.These focus the full experience ofadvanced illness, including physical,emotional and spiritual care to allevi-ate suffering and enhance the end-of-life experience. As the practice ofpalliative care evolves, palliative careprograms will become more prominentin your community. If you or a lovedone has a chronic or life-limitingillness, ask your physician about pal-liative care. We also encourage you tocall your local hospice and ask themwhat services are available.

43

Relief from suffering is a basic humanright. Most symptoms can be relievedwith good palliative care. Together wecan ensure that some of our mostvulnerable citizens receive the carethey need, when they need it. Hope-fully the Medicare Hospice Benefit willexpand to include palliative care foranyone who needs it. For more infor-mation about palliative care, call yourlocal hospice or talk to your physician.

44

he story of Elizabeth Bouvia,although it took place in the1980s, is still relevant today.

Ms. Bouvia was a 28-year-old quad-riplegic from cerebral palsy with severechronic painfrom arthritis.After numer-ous hospitalstays and norelief fromunremittingpain, shedecided torefuse nutritionand hydration. The hospital rejectedher decision and sought court authori-zation to force feed her. Eventually,she was granted the right to declinenutrition and hydration, even if shedied as a result.

As an afterthought, someone providedher with a thorough assessment of herpain. Following this process, physi-cians dramatically improved manage-ment of her pain, and she decided toresume nutrition and hydration.

Providing adequate pain control at theend-of-life might appear simple. Itmight seem that even though modernmedicine cannot extend life indefi-nitely, at least we should enable peopleto die without pain. Yet as many ashalf of patients in the dying process donot have their pain adequately con-trolled. Some of the reasons are sur-prising.

The Need for Pain Assessment

Probably the simplest reason pain isnot adequately controlled is it is notappropriately assessed. It is impossibleto treat an unrecognized condition.

Unlike otherphysicalsymptomsthat usuallylead to testsor otherprocedures todiscover the

nature of theunderlying prob-

lem, pain is subjective, with no objec-tive measurement. Pain is too oftentreated as a mere symptom of the realunderlying disease, and therefore,given inadequate attention.

To remedy this situation, pain assess-ment and control require trust anddialogue in the relationship betweenthe patient and the healthcare pro-vider. Patients have a responsibility todisclose their pain. Providers mustbelieve the patient’s description of hisor her pain and to be persistent inrelieving it.

Pain can have severe psychological andphysiological effects. Uncontrolledpain can even rob a patient of the willto live, as in the example of Ms.Bouvia. From this perspective, pain isnot merely a symptom, it is a devastat-ing disorder in its own right withserious consequences for the patient’s

Pain Management at the End-of-LifePain Management at the End-of-LifePain Management at the End-of-LifePain Management at the End-of-LifePain Management at the End-of-Life

William L. Allen, J.D.

“Success is often seen as enduring pain,

as well: “No pain, no gain”. Giving in to

pain may be seen as a sign of weakness

and a lack of determination to succeed.”

T

45

well being. Medicine was once impo-tent to do much toward curing seriousdiseases, so it was more focused onrelieving suffering. Dramatic advancesin medicine have cultivated a corre-sponding decrease in focusing on reliefof suffering as a primary goal. Thus,recognized accomplishments in medi-cine seem to target advances thatpromise cures rather than managepain.

Fear of Addiction Unwarranted

One of the top reasons for under-treatment of pain is fear of drug addic-tion. Although it is certainly possiblefor persons to become addicted tonarcotics when these substances areabused, such drugs do not createaddictions or addicts when appropri-ately used to control pain.

These drugs can be successfully usedto treat serious pain even for shortperiods without withdrawal syndromesby tapering the dosage as the level ofpain subsides. There is a crucial dis-tinction between addiction and drugdependence. Persons with seriouschronic pain may depend on narcoticpain medications to control constantpain, but this is different from addic-

tion. Persons with diabetes requiredaily shots of insulin, but we wouldnever assert that they are “addicted”.Especially in the context of patients atthe end-of-life, concern about creatinga life-long drug addiction is unwar-ranted.

Addressing Side Effects:Sedation and RespiratoryDepression

Another concern about using narcoticpain medications is the side effect ofsedation. There are ways to counteractthese side effects by taking a pre-scribed stimulant at the same time. Inthis way, a dose sufficient to eliminatethe pain may be taken without sacrific-ing alertness. Fear of respiratorydepression also contributes to under-treatment of pain. Although it canoccur as a side effect of narcotic medi-cations, the fear of its causing death isexaggerated. As tolerance to the anal-gesic effect increases, so does toleranceto the respiratory depression effect.Thus, as the dosage is increased totreat pain, the respiratory depressiondoes not increase at a harmful rate. Ofcourse, if an overdose is given, theeffect of respiratory depression couldbe fatal, but this does not occur whenthe drug is appropriately administeredto match the pain and to account forthe increased tolerance. What deter-mines an overdose is not a particularamount, but the suddenness of a largeincrease. There is no inherent upperlimit to the dosage that can be sus-tained without respiratory depression.

In many cases, patients can control theincreases necessary to take care oftheir pain by using a pump designed to

46

increase the dosage by a set amount atregular intervals. These are safe be-cause they require a patient to pushthe pump, so that if a patient’s dosagewere increased too quickly, the patientwould fall asleep and be unable to self-administer more medication before itcould reach a harmful level.

Cultural Attitudes Affecting PainManagement

Cultural and religious factors can alsocontribute to the lack of aggressiveevaluation and treatment of pain.Patients may decide to not disclosetheir pain or decide to refuse treat-ment for it. Pain may be regarded asdivine punishment, and some personsmay feel they deserve their pain.These factors can also affect the ag-gressiveness providers use to deal withpatients’ pain. Providers sometimesfeel that some patients are perceived tohave brought their condition on them-selves, such as in smokers with lungcancer or those with HIV. This re-sponse can affect their attitudes in howaggressively they attempt to addressthe patient’s pain. Pain is often associ-ated with bravery and heroism. Sincebearing pain may be seen as a reflec-tion of character and inner strength,motivation to assess and treat paineffectively may be undermined. Suc-cess is often seen as enduring pain, aswell: “No pain, no gain”. Giving in topain may be seen as a sign of weaknessand a lack of determination to succeed.

An Institutional Focus on PainManagement

Recent efforts have improved thissituation. The Joint Commission for

Accreditation of Health Care Organiza-tions, which accredits most hospitalsand other health facilities, now evalu-ates whether health care facilities areadequately addressing the pain man-agement needs of their patients. Thenew attention to pain management willhelp to overcome the cultural andregulatory barriers, but such en-trenched factors are not changedovernight. Public demand for betterpain management will expedite suchchanges. Momentum is building. Addyour voice.

47

48

hat wouldyou thinkif someone

told you about a newprogram available tohelp families andcaregivers who aredealing with theserious illness of aloved one? Thisservice, which iscompletely covered by Medicare,involves a time-honored philosophywhich puts the comfort of the patientfirst, honors each person’s dignity,respects each individual’s wishes, andpromotes peace of mind and quality oflife for the entire family.

Furthermore, it combines state-of-the-art medical care with emotional andspiritual reassurance and also providespractical assistance and companion-ship. You might think, “I wish I knewabout this kind of program.” Indeed,many hospice patients and familiessay, “We wish someone would havetold us about hospice sooner.”

As you may have guessed, this is not anew program at all. In fact, the hospiceconcept first came to our shores over30 years ago, during a time when greatnumbers of cancer patients sufferedneedlessly. In those days, the medicalcommunity simply sent dying patientshome and told them that there wasnothing more that could be done tohelp them. In actuality, there was a lot

more that could bedone, and is beingdone, every day byhospices across thecountry.

The United Statesspends more moneyper person on healthcare than any othernation, yet ranks only

37th in access and quality of care. Adisproportionate amount of money isspent delivering hopeless treatmentsthat often disregard the final wishes ofpatients and leave them feeling aban-doned as they spend their final dayssuffering from pain and other distress-ing symptoms.

Hospice Is UniqueHospice is the only health care pro-gram that has been specifically createdto serve the special needs and circum-stances of people facing life-limitingillnesses.

• Hospice care has been extraor-dinarily successful because it:Relieves pain and suffering forthe patient, caregiver, and otherfamily members.

• Respects the unique physical,emotional, and spiritual needsof each person.

• Recognizes the critical impor-tance of a coordinated team ofexperts to help people access avariety of settings including

Florida Hospices:Florida Hospices:Florida Hospices:Florida Hospices:Florida Hospices:Comfort, Care and Compassion When It Is Needed MostComfort, Care and Compassion When It Is Needed MostComfort, Care and Compassion When It Is Needed MostComfort, Care and Compassion When It Is Needed MostComfort, Care and Compassion When It Is Needed Most

Samira K. Beckwith A.C.S.W., C.H.E.

W

49

home, outpatient clinics, hospi-tals, nursing homes, anddoctor’s offices.

• Is cost efficient.

Nowhere is the hospice philosophymore enthusiastically provided than inFlorida. Florida hospices have beenserving residents for 30 years and haveled the nation in providing access andquality of care. They have also beeninvolved in numerous pilot programsfurther elevating the level of careavailable.

Each year, more than one half of allAmericans will be personally affectedby the illness and death of a friend orfamily member. In addition to thegrief they experi-ence from theirloss, many willalso feel frus-trated by today’scomplex andimpersonalhealth caresystem. Thecurrent systemgenerally ignoresthe fundamentalrelationshipbetween body, mind,and spirit. This view reduces illness toa biological function and treats thebody as machinery to be fixed.

Why Hospice Is NeededTwentieth century medicine hasblessed us with a remarkable extensionof the human life span through thedevelopment of miraculous life-savingtechnologies and unimaginable break-throughs. Its continued mechanisticapproach to health, however, preventsit from providing compassionate care

to the millions of aging Americansliving with chronic illness. Eightymillion Americans are suffering withchronic diseases such as cancer, heartdiseases, lung diseases, dementia, andHIV. It is likely that these long-termillnesses will at some point claim theirlives. Living with these diseases alsousually means living with increasingdisabilities over a longer period oftime, adding to the burdens ofcaregivers, and stressing the resourcesof the existing system that is not de-signed for patients who require longerterm care.

The same people who are slowly agingare also slowly dying. Before hospice

came to the US,people oftendied from dis-eases with apredictivecourse over ashorter periodof time. Today,dying is nolonger mea-sured in a weeksor months, but

is often a processthat involves the

progression of disease and disabilityover years. This reality is why hospiceshave become leaders in providingpalliative care — care aimed at reliev-ing pain and suffering.

How will these 80 million Americansdie? Nationally, in 1999, 50 percentdied in hospitals, 25 percent died innursing homes and 25 percent died athome. Ninety percent of Americansprefer to spend their final days athome surrounded by individuals who

“Hospice care is most effective

when the team is given several

months to prepare the patient and

family for the ultimate outcome.

Yet, half of all hospice patients die

within less than one month after

admission.”

50

mean the most to them. Despite this,few people died in their preferredmanner. Fortunately, the picture isbrighter in Florida. In our state,nearly 40 percent had the benefit ofhospice care — unfortunately, somehad it only for a short time.

Too many people with chronic medicalconditions are dying in hospitals andnursing homes. These systems are notadequately prepared to addresspeople’s complex needs although manyare now providing palliative care andare developing relationships withhospices.

Hospice in FloridaFlorida hospices continue to set na-tional standards for end-of-life care,including being the first to offer “com-plimentary therapies,” such as art,music, massage and aromatherapy fora person’s comfort and peace of mind.By operating as an inter-active team,the patient’s physician or a hospicephysician, nurses, pharmacists, coun-selors, social workers, chaplains,personal care aides, volunteers andtherapists work together offeringpatients and families a comprehensivepackage of comfort and compassion.

But, hospice today is experiencing itsown expansion issues. With medicaladvances, it is more difficult to predictthe course of diseases. Also, diseasesare more complex. And, to furthercomplicate matters, today’s caregiversare often more frail and elderly.

Often, individuals are referred far toolate. People need hospice’s comfort,compassion and caring much earlierthan they often get it. Hospice care is

most effective when the team is givenseveral months to prepare the patientand family for the ultimate outcome.Yet, half of all hospice patients diewithin less than one month afteradmission. Of that group, 20 percentdie within one week. While thepatient’s physical pain, anxiety andrestlessness can be alleviated in a fewweeks, little time is provided for meet-ing the emotional, spiritual and finan-cial needs of both the patient and thefamily. More time allows the patientand family to say goodbye as they learnto cope with their grief.

There are many reasons people are notreferred to a hospice program in atimely manner:

• Sometimes physicians hesitateto openly discuss the prognosis.

• Physicians are often unpreparedto deal with a dying patientbecause medical schools trainthem to “cure” their patients.

• Others may try to avoid thesense or feeling of failure or“giving up hope.”

• Family members may not wantto avoid what is happening totheir loved one and may per-suade the physician not to“break the bad news” to thepatient.

• Sometimes the patient himselfmay express feelings of fear orbe in a state of denial and mayoffer signals that he or she isnot ready to hear the truth, eventhough it may be known on adeeper level.

Changed Views About DeathSociety is now looking at death anddying in a different light. There is no

51

question that twentieth century medi-cal advances have been miraculous,but some are wondering if some medi-cal procedures are futile and if allcostly prescriptions are actually in-creasing the quality of life for peoplefacing life-limiting illnesses. Thependulum is beginning to swing backto the center as people realize that anincrease in quantity of life does notnecessarily equate to an increase inquality of life.

Individuals today are beginning to takea more active role by making informedchoices about their care. More andmore people are turning away fromend-of-life medical programs whichonly prolong dying, opting instead forthe traditional comfort and supportfound in palliative care, which is beingviewed as medicine that combines ahigh technology approach with acompassionate nature. Of course, thisis nothing new to the pioneers of thehospice movement, without whosevision, end-of-life palliative care wouldnot exist. As long as medical advancescontinue to become available, hospiceprofessionals will continue to blendthem with the comfort, care and com-passion, which is hospice.

The hospice of tomorrow will providecare to patients and families at anystage of disease, not just the end stage.Newly diagnosed patients will haveimmediate assistance with symptommanagement, decision-making, coun-seling, care planning and palliativecare consultation. The hospice oftomorrow will also reach out to thoseaffected by loss, regardless of thecause, including violent crime, suicideor other catastrophic events.

By broadening their range of services,hospices continue their mission ofcompassionately supporting the evolv-ing needs of people in the community.

52

t happened again just the otherday, during a presentation to acommunity group about hospice

care. The room was initially silent…but as I explained all the care andservices people are entitled to underthe Medicare and Medicaid HospiceBenefit, the questions and commentsstarted flying. “This must be one ofthe best kept secrets!” one womanexclaimed, “Why didn’t anyone tellus?”

It is not a secret! In fact, the Medi-care/Medicaid Hospice Benefit wasfirst offered in 1983. What is astound-ing, though, is the fact that not enoughpeople get the benefits. Everyday, wehear horror stories in the media aboutboth the cost and quality of care, as

well as people not having their choicesfor care respected. In this environ-ment of increasing co-payments andreduced coverage, the Medicare Hos-pice Benefit is truly an underutilizedbenefit for people living with a life-limiting illness.

For people facing serious illness, it isimperative to know that both theappropriate care and the fundingneeded are available to help them. It isjust a matter of spreading the wordand correcting the misunderstandingsthat exist. Patients and families canbenefit from all of the comfort, careand compassion, offered by Hospice,while knowing that all of the relatedexpenses are covered under this spe-cial Hospice Benefit.

Medicare Hospice Benefit:Medicare Hospice Benefit:Medicare Hospice Benefit:Medicare Hospice Benefit:Medicare Hospice Benefit:Everything You Need to KnowEverything You Need to KnowEverything You Need to KnowEverything You Need to KnowEverything You Need to KnowSamira K. Beckwith L.C.S.W., C.H.E.

What is the Hospice Benefit under Medicare and Medicaid?

The Hospice Benefit under Medicare and Medicaid provides for the completepackage of physical, emotional, spiritual and practical care that the hospice com-munity is so well known for. All treatment related to the primary diagnosis iscovered, including the following:

Physical Care Emotional & Spiritual Care Practical CarePhysicians & Nurses Counselors Personal Care AidesInpatient hospitalization Chaplains Specially trained volunteersMedical supplies & equipment Coordinate community resources Inpatient respite careMedications & IV therapy Healthcare system advocacy Light housekeepingSpeech & physical therapy Healthcare system advocacy Assistance with paperworkDietary & occupational therapy Bereavement support Caregiver education

Additionally, Medicare and Medicaid pays hospice directly for services that areprovided. Patients do not have to process complicated paperwork or bills andthere are not any co-payments or deductibles. Also, many hospices offer therapiessuch as massage, pet, aroma, music and art.

I

53

The heartbreaking part is, that be-cause of the misunderstandings aboutthe Hospice Benefit, too many familiesare not pursuing hospice care becausethey assume that they would not beable to pay for it or they think that itmeans giving up hope. When in fact,many of the services included inthe Hospice Benefit, includingmedications and medical sup-plies, are not covered throughany other health care provider,facility or home health agency.Physicians across Florida are realizingthat there is a direct relationshipbetween the time spent in a hospiceprogram and increased quality of lifethat patients and families can experi-ence together. Patients can peacefullyenjoy the company of friends andfamily while having time to handleunfinished details. Caregivers canreceive greatly needed support andfamily members can begin preparingfor the grief and bereavement process.

As the community group discussioncontinued, several key questions wereposed. By the end of the presentation,a new understanding about severalend-of-life care issues came to light.The following questions highlight thekey points of that discussion:

Would my physician still beinvolved with my care if I electedthe Medicare Hospice Benefit?

Yes! Choosing this benefit does notaffect the individual relationshipbetween the patient and the attendingphysician. In fact, your physician isencouraged to be an active part of thehospice care team. Your doctor par-ticipates in the establishment of the

plan of care and works with the hos-pice team in everyday matters. Hos-pice physicians, who are experts inpalliative or “comfort” medicine, arealso available to consult on matters ofspecialized pain and symptom controlat the patient’s or physician’s request.

Does this benefit affect myregular Medicare or Medicaidbenefits?

No. In fact, the two benefits workconcurrently. As mentioned before,the Hospice Medicare Benefit coversall of the treatments and servicesassociated with your life-limitingdiagnosis. In the case where there isan unrelated medical need, your regu-lar Medicare or Medicaid coverageremains in effect. It would act in thesame manner as it always has, with thesame deductibles and co-paymentsthat you are accustomed to.

Would I receive the same cover-age from another health careprovider such as a hospital facil-ity or home health agency?

No. The Medicare / Medicaid HospiceBenefit is unique. Your Medicare-certified hospice can provide comfortand compassion in the comfort of yourown home or other place of residencesuch as an assisted living facility ornursing home. Under the HospiceBenefit, hospice continues to providecare to you and your family as youmove from setting to setting. Someexamples include those in the chart onthe next page.

54

Who is eligible for the HospiceBenefit?

Hospice care is available to any patientwhose focus of care has shifted from“cure” to “comfort”. Furthermore,many people do not realize that thisincludes people with a variety of dis-eases such as: Alzheimer’s, cardiacdiseases, neurological disorders, renalor liver disease, AIDS, pulmonarydisease, and of course, cancer. Anyoneunder the care of a Medicare-certifiedhospice can elect the benefit simply bycompleting an election statement. The

physician indicates that, the end-of-lifemay come in six months or so if thedisease follows an average course.

What happens if the six-monthtime limit passes?

As we all know, it is virtually impos-sible to accurately predict a person’slife expectancy, no matter what thephysical condition. Physicians canoffer educated guesses based on re-search and experience, but quite oftenthe human spirit defies the odds andsurvives well beyond expectations.

Examples of coverage and types of care Hospice Hospital Home Health

Payment for prescription medications at home to control pain and other symptoms.

YES NO NO

Services are provided even if the patient is not homebound. YES NO NO

Inpatient respite care for a period of relief for care givers.

YES NO NO

Continuous nursing care at home during periods of medical crises. YES NO NO

Inpatient care provided for pain control or symptom management without a deductible or co-payment.

YES NO NO

Payment of consulting physician fees without deductible or co-payment. YES NO NO

Coverage of durable medical equipment and medical supplies without a deductible or co-payment.

YES NO NO

Counseling services at home for patient and family with no deductible or co-payment.

YES NO NO

Homemakers. YES NO NO

Bereavement counseling and support groups. YES NO NO

Volunteers with specialized training. YES NO NO

Nurses, social workers and chaplains available On-call 24 hours a day, 7 days a week for patients and families.

YES NO NO

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In fact, many people experience aphysical improvement after beginninghospice because their pain and symp-toms are under control and they havebegun receiving the emotional andspiritual support that may have beenmissing. Fortunately, it is reassuringto know that there is no penalty toeither patients or physiciansif a person outlives theirpredicted life expectancy. Aslong as the plan of care ispalliative in nature, focusedon comfort care and thepatient continues to qualifyfor the Medicare benefitperiods, the patient willcontinue to be covered.Patients have been cared forby hospice for years and stillmeet the criteria.

What are the benefit periods?

The benefit periods are structured intotwo 90-day periods followed by anUNLIMITED number of 60-day peri-ods. There are times, in fact, when aperson can enjoy hospice care forseveral years.

What happens if I get better?

Time and time again, we are pleasantlysurprised when a serious illness takes aturn for the better. Sometimes, peopleunder the care of hospice improve tothe point that they no longer qualifyfor the Medicare Hospice Benefit.When this happens, the patient is“discharged” from hospice care andgoes back to being covered solely bytheir regular Medicare benefit. Ifneeded, a person can re-enter hospicecare by re-electing the Hospice Benefit

at a later date and receive all of thesame treatments and benefits with thesame convenience they were previ-ously accustomed to.

In closing, it is widely known thathospice is the only model of care thateffectively and compassionately treats

the whole person… mind,body and soul, while at thesame time, supporting thecaregiver and family mem-bers. Experts, such as theAmerican Medical Associa-tion and others, agree thatpatients and families whospend more time in a hos-pice program at the end-of-life, experience a higherquality of life during thattime, than those who do nothave full access to hospicecare. The Medicare/Medic-

aid Hospice Benefit makes this pos-sible for anyone who qualifies forMedicare or Medicaid and whosecourse of treatment focuses on com-fort, rather than cure. Furthermore,many people do not realize that hos-pices also provide care to people withprivate insurance. The ultimate win-ners are, of course, the growing num-ber of people and their families whoare living with serious illness, becausethey now know that this is no longer asecret.

A special man once told me, “Now thatI have hospice care, I’m at peace, andI’m ready to go… but that doesn’tmean that I’m getting on the next bus.”We cared for him for 8 months andwhen he did “go” the journey was lessdifficult because he truly lived eachday as fully as possible.

56

eferrals to hospice are oftennot made because of the manymyths and misunderstandings

about hospice which exist on the partof both the patient and physician.

MYTH: Only terminal cancer pa-tients are eligible for hospice care.

FACT: While this was true years ago,today, people in the late stage of otherdiseases, such as Alzheimer’s disease,Parkinson’s disease, Multiple Sclerosis,ALS (Lou Gehrig’s disease), AIDS,respiratory diseases, cardiac diseases,and liver and kidney diseases canbenefit from hospice. No matter whatthe illness, if the focus of the person’scare is palliative (comfort) in natureand the patient is in the end stages ofthe disease, the patient will most likelybe approved for admission into ahospice program.

MYTH: Only individuals over the ageof 65 are eligible for hospice care.

FACT: Hospice is appropriate for anyperson of any age with any disease thatmeets the requirements. Unfortu-nately, today’s physicians are seeing anincrease in cases of serious disease inyoung people. While it can be heartwrenching to come to terms that achild may die, it is just as unfair to puta young person through end-lesshopeless procedures. Several hospicesin Florida have been leaders in thedevelopment of special pediatric pro-grams, which provides palliative care

to children while helping the familydeal with the illness and eventual loss.

MYTH: Hospice can only be called induring the final week of life.

FACT: One of the most commonmyths involves a confusing Federalgovernment “timeline” which regulateshospice admissions of Medicare orMedicaid patients. The guideline that

Myths About HospiceMyths About HospiceMyths About HospiceMyths About HospiceMyths About HospiceSamira K. Beckwith L.C.S.W., C.H.E.

Hospice also helps

to care for caregivers.

Nearly 26 million Americans

spend an average of 18 hours a

week taking care of frail relatives

or friends suffering from

progressive chronic medical

conditions.

Approximately 73 percent of

these caregivers are women who

devote between 4 and 10 years

caring for their loved one.

31 percent of these individuals

experience significant physical,

emotional and spiritual stress,

and can have a 63 percent

higher mortality risk than

persons not involved in

care giving.

R

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physicians must consider when refer-ring their patient to hospice is that“the prognosis may be six months orless if the disease follows its expectedcourse.” This is often misunderstood,keeping untold numbers of deservingpatients from the hospice care they areentitled to receive.

The reality is that many individuals,once under the special program ofhospice care, actually notice a physicalimprovement and remain in the hos-pice program for much longer than sixmonths. This happens after the physi-cal pain is relieved and the emotionaland spiritual concerns are addressed.There are many reasons some patientslive longer than expected. The humanspirit is unique and physicians oftenhave difficulty predicting specificprognosis timeframes, which oftenprevent patients from access to timelycare. Since it is so difficult to predicttimeframes, another approach wouldbe for the physician to ask the ques-tion, “Would I be surprised if thepatient died during the next year?”This can be an appropriate way tothink about the special needs of eachperson and allow more families to takeadvantage of all that hospice has tooffer.

MYTH: Hospice is mostly aboutdying and giving up hope.

FACT: The opposite is true. Hospice isabout making the most of life each day.

Most of us do not know how muchtime we have here on earth. The termi-nally ill have a better idea that the endof their life is approaching. It is duringthis time that miracles can happen.

Individuals have said that they did nottruly begin to live until their diseasereminded them how precious everymoment was. Outlooks change, rolesswitch and priorities shift when peoplerealize that their time is limited. Hos-pice professionals help patients andfamilies sort through all of these chal-lenges.

They can also help families understandthe complex health care system andensure that all available communityresources are provided. Manycaregivers have said that it was such arelief to have had the hospice advo-

cates on their side. Both patient andcaregivers often look forward to thehospice team home visits. Familiesrecognize that hospice is about living,

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not dying. That is why so many fami-lies and caregivers say that they wishthey had known about hospice sooner.

MYTH: Hospice is the same as anyother home health agency.

FACT: While it is true that hospicecare is often provided in the home,that is where the similarity ends. Thecomplete range of services that hospiceoffers and the team approach to caretruly puts it in a class of its own.

MYTH: Hospice requires that I use ahospice physician, instead of my own.

FACT: Hospice understands andrespects the bond between an indi-vidual and his/her own physician.Hospice encourages physicians tocontinue being involved with the careof their patient. In fact, the physicianis viewed as an integral part of the careteam. Hospice physicians can offerassistance as needed on a case-by-casebasis. Since they are experts in pallia-tive medicine, they are often consultedso that the patient has the best of bothworlds.

MYTH: I would never be able toafford high quality hospice care.

FACT: Fortunately, there are manyoptions for people who are concernedabout their ability to pay for hospicecare. Individuals who are entitled toMedicare or Medicaid can take advan-tage of a separate Hospice Medicarebenefit that covers all of the costsassociated with the life-limiting illness.This includes nursing, counseling andpersonal care aide visits, as well ashome medical equipment, prescrip-tions and volunteer support. Also, for

those who are not Medicare or Medic-aid eligible, more and more privateinsurance companies are adding hos-pice coverage to their policies. Finally,at Florida hospices, families are notdenied services simply because of aninability to pay. Organizations offsetun-reimbursed care so that they canfocus on their true mission, regardlessof financial issues.

Hospice also helps to care forcaregivers.

• Nearly 26 million Americansspend an average of 18 hours aweek taking care of frail rela-tives or friends suffering fromprogressive chronic medicalconditions.

• Approximately 73 percent ofthese caregivers are women whodevote between 4 and 10 yearscaring for their loved one.

• 31 percent of these individualsexperience significant physical,emotional and spiritual stress,and can have a 63 percenthigher mortality risk thanpersons not involved in caregiving.

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e are beginning to hear orread about the criticalillnesses of public figures

with who are not expected to live.However, we more frequently learn oftheir illnesses only after their deaths.A remarkable exception was the newscoverage of James Michener’s decisionto discontinue kidney dialysis at age90. Such an announcement illustratesa fact of contemporary life: Death caninvolve decisions we either make forourselves or have others make for us.

Of course, death is something wecannot simply choose to avoid. Thetiming of death, as well as the circum-stances and quality of life we endure asit approaches, are becoming matters ofchoice. Life sustaining technology hasblurred the transition between life anddeath, forcing us to distinguish be-tween physiological func-tions, like breathing,that sustain life andour perceptions ofthe quality, value,and dignity of life.Our anxiety aboutthe blurring distinc-tion between life anddeath crystallized inthe cases of KarenAnn Quinlan in the’70s and NancyCruzan in the ’80s.Both were youngaccident victims inpermanent vegetative

states, whose families were forced togo to court to have life support with-drawn.

In the ’90s, however, this fact of lifebecame so clear that news coverage ofthe deaths of public figures like Rich-ard Nixon and Jackie Onassis reportedthat they left instructions about theirchoices to limit medical treatment atthe end-of-life.

Effects of Technology

Prior to the development of dialysismachines, ventilators, feeding tubes,cardiopulmonary resuscitation, andother medical technologies, death maynot have been welcomed, but at leastindividuals were not often required tomake decisions about it. Death justhappened and there was not muchanyone could do to delay it. Being

End-of-Life Decisions:End-of-Life Decisions:End-of-Life Decisions:End-of-Life Decisions:End-of-Life Decisions:Some Final ThoughtsSome Final ThoughtsSome Final ThoughtsSome Final ThoughtsSome Final Thoughts

William Allen, J.D.

To our grandparents, death was a more accepted part

of the life cycle. Family members were cared for in the

home, surrounded by friends and loved ones. With the

advances of modern medicine, society allowed the

medicalization of the end-of-life. Now, blending this

traditional approach with the highest quality medical

care ensures the patient’s needs are met. The underlying

belief is that the end-of-life should be as special as the

beginning of life, and that it, too, is a family event.

—Samira Beckwith

W

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confronted with this new phenomenonof choices about dying is not some-thing most people have welcomed.

Facing death is hard enough when wecan no longer evade its approach. Itseems even more onerous, somehow,that we must dwell on it far enough inadvance to make crucial decisionsabout the terms of encountering andenduring it.

It is not only decisions about our owndeaths we wish to avoid, but mostpeople want to avoid being a surrogatedecision-maker for someone else.No one wants to heartheir loved ones talkabout dying, much lessassume the responsibilityof actually implementingtheir choices.

That is why Michener’sannouncement before hisdeath was so striking.Richard Nixon’s andJackie Onassis’s choicesabout their deaths weremore abstract when welearned about them afterthey were already gone.Michener’s decision to stop dialysis,and the recognition that he was stillalive and aware of his approachingdeath, produced a concrete existentialecho in our own psyches that wasimpossible to ignore.

Having this type of choice thrust uponour era is ironic because it results fromthe development and widely used life-sustaining technologies. When suchmeasures can restore a life that wouldotherwise be lost, we welcome them.However, it dawns on us that having

such technology also forces upon ushard choices about when to use themor when to stop using them, asMichener did.

The Importance of MakingDecisions

One wonders, when Michener chose tobegin dialysis, if he anticipated what itwould be like to decide to stop it.Accepting a life sustaining medicalprocedure often seems preferable to itsalternative. Eventually, however, suchmeasures may no longer offer anacceptable quality of life.

We may try to avoid suchdifficult choices by refus-ing to consider them.After all, federal andFlorida law prohibitanyone from being forcedto sign a living will or toappoint a surrogatedecision-maker. Wecannot be forced torefuse medically appro-priate treatment. Inreality, however, sinceimplementation of lifesustaining procedures

has become standard, they are usuallyapplied unless specifically refused by acompetent patient. Thus, especially inthe case of patients who are incapableof making their own decisions aboutcare, failure to refuse treatment isessentially a choice for treatment. Notto decide against treatment is, ineffect, to decide for it.

Many of us do have definite prefer-ences about such choices. Some wantto exhaust every sliver, while othershave a horror of the dying process

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being prolonged. In facing the diffi-culty of anticipating death, many havefound the process of actually makingtheir choices about quality of life to bea liberating or enlightening experience.

Yet we need not embrace death withindifference to make choices abouthow and when it occurs. We may even“rage against the dying of the light,” asDylan Thomas urged, but still choosethe setting and terms of the inevitablesurrender. At first glance it may seemcontradictory to say, “I do not want todie, but I do refuse life sustainingtreatment.” In reality, how-ever, it issimply saying, “Although I want tolive, the quality of life that life supportcan bring is not worth the burdens itforces me to endure.”

Confronting Mortality

Confronting our own mortality isnothing new to the human condition.Life-sustaining devices and the inevi-table choices about using them have,however, conjured up a new confronta-tion with our mortality. In the end,such choices are not only about dying;they are about living, too. Since wehave spent most of our lives distractingourselves from the reality of death, weare not generally prepared to decidehow to live as we approach death.

Therefore, reflection on how we wishto live during the time we are dying iswell worth doing. Moreover, discus-sion of our choices with those weentrust to carry out our decisions (ifwe are unable) is crucial.

As a society, we can profit from thepoignant example of James Michenerand others who have struggled with

such decisions. We have not yet devel-oped adequate symbols and rituals tohelp us through this new rite of pas-sage. Nor do we have an adequatesense of making these hard decisionsin spite of our reluctance. We need torecognize that in carrying out others’decisions to forego life support, weperform a noble service for them,rather than shrinking from the role asif we had been asked to be the hoodedexecutioner.

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Florida Hospice and Palliative Care – Overall coordination of the grant project, formation of a statewide coalition of end-of-life care leaders, development and maintaining community coalitions and activitiesof coalitions, palliative care initiative, development of educational materials andprofessional education and training.

Samira Beckwith, L.C.S.W., C.H.E, Principal Investigator for the project, is alsoPresident and CEO of Hope Hospice.

Susanne F. Homant, M.B.A., Executive Director for Florida Hospice and PalliativeCare, Inc.

Robyn Chase, Project Coordinator

Florida Department of Elder Affairs– Establishment of culturally sensitive end-of-life materials, development of relatededucational programs for the public and professionals, regulatory initiatives andeducation particularly in the area of advance directives, distribution of advancedirectives and information, and awareness survey on end-of-life care issues.

Linda Macdonald, M.S., Office of General Counsel. She is responsible for the coordi-nation of the Department’s end-of-life care activities including policy development,hospice rule writing and legislatively mandated workgroups. She is a member of theNational Advisory Committee for “Transforming Caregiving at Life’s End”.

Horacio Soberon-Ferrer, Ph.D., Research Director

Florida Department of Health– Involved with regulatory initiatives and education particularly in the area of DNROand end-of-life education for EMS personnel, training and educational programs,development of educational materials for the public and professionals, professionaleducation and training, distribution of advance directives and information.

Freida Travis is the Administrator for the Operations Sections within the Bureau ofEmergency Medical Services. She is a certified emergency medical technician andhas 25 years of experience with the Bureau of EMS in a variety of positions. Ms.Travis served as an advisor to the End-of-Life Care Panel created in 1998.

Jessica Swanson, M.S.W., is a Systems Analyst for the Bureau of Emergency MedicalServices. She completed her Masters in Social Work at Florida State University and

ContributorsContributorsContributorsContributorsContributors

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earned her Certificate of Gerontology from the Pepper Institute on Aging and PublicPolicy.

Florida Agency for Health Care Administration – Involved with regulatory initiatives and end-of-life care public education.

Anne Menard, M.S.W., is the Supervisor of Home Care and Hospice Programs, Bu-reau of Health Facility Compliance and responsible for grant activities.

University of FloridaProgram of Law, Ethics, and Medical Professionalism– Assists with regulatory initiatives, coordination of professional education for law-yers and clergy, ethics training and education, development of educational materialsfor the public and professionals.

William L. Allen, J.D., M.Div., is the Co-Investigator for the project. He serves on theShands Hospital Ethic’s Committee, the Health Science Centers Human SubjectsInstitutional Review.

Ray Moseley, Ph.D., is Director of the Medical Humanities Program (M.H.P.) in theCollege of Medicine at the University of Florida and is an Associate Professor in theDepartment of Community Health and Family Medicine. He specializes in ethicaland legal issues in end-of-life care.

University of Florida, College of Pharmacy– Involved with Pain management initiatives.

David Brushwood, R.Ph., J.D., is a professor of Pharmacy Health Care Administra-tion at the University of Florida College of Pharmacy. He serves as co-principalinvestigator on an NIH grant, Conquering Pain: Enabling Dialogue Through CD-ROM/WEB. His participation in the Florida Partnership will result in the creation ofa statewide network of clinical pharmacist pain management specialists.

University of Miami, Ethics Programs– Public information and ethics training and education, professional education andtraining.

Kenneth W. Goodman, Ph.D., is the Director of the University of Miami Ethics Pro-gram and co-director of the statewide Florida Bioethics Network. He was an advisorto the Panel for the Study of End-of-Life Care which crafted changes to key parts ofFlorida’s advance directive law. Recent articles written have addressed living wills,end-of-life legislation, and the use of computers to predict mortality.

Rallying Points Regional Resources CenterKathy Brandt, M.S., Director of The Hospice of the Florida Suncoast Rallying PointsRegional Resources Center, an initiative of The Robert Wood Johnson Foundations

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Last Acts Campaign. She serves on the board of the Florida Counsel on Aging and isan active member of Florida Hospices and Palliative Care, Inc.

Hospice of Palm Beach CountyGail Austin Cooney, M.D., has been the Medical Director of Hospice of Palm BeachCounty since 1997. She graduated from the Mayo Medical School in 1978 andtrained in Internal Medicine and Neurology at Emory University. She is a member ofthe Board of Directors of Hospice of Palm Beach County and the Area Agency onAging. She is an active participant in the Omega Project, focusing on educatinghealth care professionals to better care for older people.

The Hospice of the Florida SuncoastKaren Lo, M.S., B.A., R.N., curriculum specialist, trainer and consultant at TheHospice of the Florida Suncoast and with K-Lo Training & Associates, Inc.

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American Association of Retired Persons (AARP)National Office601 E St., North WestWashington, DC 20049Phone: 1-800-424-3410Website Address: www.aarp.org/

American Association of Retired Persons (AARP)Florida Office200 West College AvenueTallahassee, Florida 32301Phone: (850) 222-7344Website Address: www.aarp.org/endoflife

Aging with DignityP.O. Box 11180Tallahassee, Florida 32302-3180Phone: (850) 681-2010; toll free 1-888-594-7437Website Address: www.agingwithdignity.org

Americans for Better Care of the DyingPhone: (202) 895-9485Website Address: www.abcd-caring.org

Florida Department of Business and Professional RegulationBoard of Funeral Directors and EmbalmersTallahassee, FloridaPhone: (850) 488-8690Website Address: www.myflorida.com

Florida Bioethics NetworkP.O. Box 016960 (M-825)Miami, Florida 33101Phone: (305) 243-5723Website Address: www.med.ufl.edu/chfm/ethics/fbn/

Florida Department of Health (DNRO Form- English version)Bureau of Emergency Medical Services4052 Bald Cypress Way, Bin C 18Tallahassee, Florida 32399-1738Phone: (850) 245-4440Website Address: www.doh.state.fl.us

Resources for End-of-Life ChoicesResources for End-of-Life ChoicesResources for End-of-Life ChoicesResources for End-of-Life ChoicesResources for End-of-Life Choices

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Florida Funeral Directors Association150 South Monroe StreetTallahassee, Florida 32301Phone: (850) 224-1969Website Address: www.ffda.org

Florida Hospices and Palliative Care, Inc.1616- D Metropolitan CircleTallahassee, Florida 32303(850) 878-2632Website Address: www.floridahospices.org

Partnership for CaringPhone: Toll free – 1-800-989-9455; (202) 296-8071Website Address: www.partnershipforcaring.org

Project GRACE (Guidelines for Resuscitation and Care at End-of-Life)1311 North Westshore Blvd., Suite 107Tampa, Florida 33607Phone: (813) 281-2324; Toll-Free 1-877-99-GRACEWebsite Address: www.P-Grace.org

United States Department of Health and Human ServicesAdministration on Aging330 Independence Avenue, SWWashington, DC 20201Telephone:

- (800) 677-1116 (Eldercare Locator - to find services for an older personin his or her locality)

- (202) 401-4541 (Office of the Assistant Secretary for Aging) (Congres-sional and Media Inquiries)

- Federal Relay Services - 1-800-877-8339 - toll free relay service to callAoA and other federal agencies from TTY devices— useful for personswith hearing impairments (off-site)

Website Address: www.aoa.gov/

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Bill Allen, J.D., M.Div., DirectorProgram in Bioethics, Law, and Medical ProfessionalismUniversity of Florida College of MedicineP.O. Box 100222Gainesville, FL 32610-0222Phone: (352) 848-1109

Samira K. Beckwith, L.C.S.W., C.H.E., President & C.E.O.Hope Hospice & Palliative Care9470 HealthPark CircleFort Myers, FL 33908Phone: (941) 489-9140

David B. Brushwood, R.Ph., J.D.Pharmacy-HealthCare AdministrationUniversity of Florida - P.O. Box 100496Gainesville, FL 32610-0496Phone: (352) 392-2472

Ken Goodman, Ph.D., DirectorUniversity of Miami Ethics ProgramP.O. Box 016960 (M-825)Miami, FL 33101Phone: (305) 243-5723

Linda Macdonald, M.S.Department of Elder Affairs4040 Esplanade Way, Suite 315LTallahassee, FL 32399-7000Phone: (850) 414-2000

Anne Menard, M.S.W., AHCA AdministratorAgency for Health Care Administration2727 Mahan Drive, Building 1Tallahassee, FL 32308Phone: (850) 414-6010

Florida Partnership for End-Of-Life CareFlorida Partnership for End-Of-Life CareFlorida Partnership for End-Of-Life CareFlorida Partnership for End-Of-Life CareFlorida Partnership for End-Of-Life CareAdvisory Committee (Founding Members)Advisory Committee (Founding Members)Advisory Committee (Founding Members)Advisory Committee (Founding Members)Advisory Committee (Founding Members)

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Ray Moseley, Ph.D., Program in Bioethics, Law, and Medical ProfessionalismUniversity of Florida College of MedicineP.O. Box 100222Gainesville, FL 32610-0222Phone: (352) 392-4321

Horacio Soberon-Ferrer, Ph.D., Director of Research and PlanningDepartment of Elder Affairs4040 Esplanade Way, Suite 280LTallahassee, FL 32399-7000Phone: (850) 414-2000

Jessica Swanson, M.S.W.Department of Health4052 Bald Cypress Way, BIN C18Tallahassee, FL 32399-1738Phone: (850) 245-4440

Freida B. Travis, Program AdministratorBureau of Emergency Medical ServicesDepartment of Health4052 Bald Cypress Way, BIN C18Tallahassee, FL 32399-1738Phone: (850) 245-4440

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For More Information, Please Contact:For More Information, Please Contact:For More Information, Please Contact:For More Information, Please Contact:For More Information, Please Contact:

Florida Department of Elder Affairs4040 Esplanade Way

Tallahassee, FL 32399-7000850/414-2000

Internet address: http://elderaffairs.state.fl.us/