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This article was downloaded by: [Northeastern University]On: 30 November 2014, At: 14:29Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,UK
Gerontology & GeriatricsEducationPublication details, including instructions forauthors and subscription information:http://www.tandfonline.com/loi/wgge20
Advance Care Directives andEnd of Life DecisionsRobert McCann MD a , Joshua Chodosh MD b , RichardFrankel PhD c , Paul Katz MD d , Elizabeth NaumburgMD e , Asher Tulsky MD f & William J. Hall MD ga University of Rochester, Independent Living forSeniors , 2066 Hudson Avenue, Rochester, NY, 14617,USAb University of Rochester, Strong Memorial Hospital ,P.O. Boc Med, 601 Elmwood Avenue, Rochester, NY,16424, USAc University of Rochester, Department of Medicine,Highland Hospital , 1000 South Avenue, Rochester,NY, 14662, USAd University of Rochester, Monroe CommunityHospital , 423 East Henrietta Road, Rochester, NY,14620, USAe University of Rochester, Department of FamilyMedicine , 885 South Avenue, Roshester, NY, 14620,USAf University of Rochester, St. Mary's Hospital , 89Genesce Street, Rochester, NY, 14611, USAg University of Rochester, Department of Medicine ,601 Elmwood Avenue, Rochester, NY, 14662, USAPublished online: 11 Oct 2008.
To cite this article: Robert McCann MD , Joshua Chodosh MD , Richard FrankelPhD , Paul Katz MD , Elizabeth Naumburg MD , Asher Tulsky MD & William J. Hall MD(1998) Advance Care Directives and End of Life Decisions, Gerontology & GeriatricsEducation, 18:3, 3-19, DOI: 10.1300/J021v18n03_02
To link to this article: http://dx.doi.org/10.1300/J021v18n03_02
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Advance Care Directives and End of Life Decisions:
An Educational Module Robert McCann, MD Joshua Chodosh, MD Richard Frankel, PhD
Paul Katz, MD Elizabeth Naumburg, MD
Asker Tulsky, MD William J. Hall, MD
ABSTRACT. Discussions about end of life care can be difficult for patients and practitioners. Numerous studies have demonstrated that
Robert McCann is Assistant Professor o f Medicine, University o f Rochestcr, Indcpendent Living for Seniors, 2066 Hudson Avenue, Rochester, NY I461 7; Joshua Chodosh is Assistant Professor o f Medicine, University o f Rochester, P.O. Boc Med, Strong Memorial Ilospital, 601 Elmwood Avcnue, Rochester, NY 16424; Richard Frankel is Professor o f Medicine, University o f Rochester, De- partment of Medicine, Highland Hospital, 1000 South Avcnue, Rochester NY 14662; Paul Katz is Associate Professor o f Medicine, Univcrsity o f Rochester, Monroe Coininunity Hospital, 423 East Henrietta Road, Rochester, NY 14620; Elizabeth Naumburg is Associate Professor o f Mcdicine, University o f Rochester, Department o f Family Mctlicine, 885 South Avenue, Roshcstcr, NY 14620; Asher Tulsky is Instructor in Mcdicine, Univcrsity o f Rochcster, St. Mary’s Hospital, 89 Genesce Street, Rochester, NY 1461 I; and William J. Hall is Professor o f Medi- cine, University o f Rochester, Department o f Medicine, 601 Elmwood Avenuc, Rochestcr, NY 14662.
The authors acknowledgc tlic contributions o f Madelyn Gruber, JD, Rochestcr General I-lospital Ethics Consultant, Kathryn Birke, MSW, Indcpendent Living For Scniors, Director of Social Work, and Lisa Branca MPA, Project Assistant for rlic tlartfortl Grant.
Funding for this project wits provided by 8 griint from thc John A. Hartford Foundat ion, Initiative in Geriatric Tra ini ng Grant .
Gerontology & Geriatrics Education, Vol. 18(3) 1998 0 1998 by Tlic Haworth Press, Inc. All rights rescrved. 3
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4 GERONTOLOGY Ce GERIATRICS EDUCATION
dying patients often receive care that does not address their suffcring adequately, partly due to inadequate physician-patient coirununica- tion. An educational module was developed for graduate medical residents about the care of dying patients to improve their commu- nication skills, particularly in the area of end of life discussions with patients. The module contains didactic material as well as exercises to provide the teacher and learners with a fiamework to explore personal and patient values, and how those values relate to medical decision making. Portions of. the module have also been utilized at seminars for social workers and nurses. [Article copies available for a f2e j o t n The Haworth Doctinterit Delivery Setvice: 1-800-342-9678. E-niail address: getitfo@awot*rh.cotnJ
INTRODUCTION
All the life of the earth dies all the time, in the same volume as the new life that dazzles us each morning, each spring. All we see of this is the odd stump, the fly struggling on the porch floor in the summer house in October, the fragment on the highway. I have lived all my life with an embarrassment of squirrels in my backyard; they are all over the place, all year long, and I have never seen, anywhere, a dead squirrel. (Thomas, 1973)
The inevitability of death is disconcerting to most people, and caring for dying persons may be one of the most challenging, yet potentially rewarding, tasks of being a practitioner. Physicians caring for older per- sons often participate in end of life care, thus need to communicate effec- tively with patients and families when caring for dying patients. Under- standing our patients’ values is crucial when discussing the bewildering array of medical therapies available to such patients. Developing specific goals in concert with those values, can often clarify very difficult decisions about life-prolonging therapies. Articles in the medical literature consis- tently state that patients want their doctors to talk with them about how they wish to be treated at the end of their lives, or in the event of irrevers- ible, dcbilitating illness (Lo, McLeod, & Saika, 1986). Consistent evidence exists that patients and physicians do not effectively discuss these issues, which may lead to unwanted, harmful, and/or ineffective care (The SUPPORT Investi- gators, 1995). Most of the interventions designed to improve care at the end of life have had lunited effects (Hanson, Tulsky, & Danis, 1997).
This article describes a module on end of life discussions that was preparcd to educate graduate medical residents about the care of dying patients, particularly focusing on communication. This module has becn
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used as a resource for teachers and learners. It has been utilized in small group discussions, and as an adjunct to teaching sessions in which resi- dents review (with faculty) videotapes of themselves talking to older pa- tients about end of life care, Portions of the module have also been used in educational programs for physicians, social workcrs and nurses in the community.
The initial part of the module discukes the importance of end of life issucs to the practitioner, and provides a framework for a small group teaching session. Subsequent parts of the module provide definitions and ethical and legal points. Practical ways to learn about patient values and preferences and ideas on how to communicate with families are then presented. Also, the topics of cardiopulmonary resuscitation (CPR) and artificial feeding offer a discussion of two of the most common therapeutic choices addressed with dying persons. The information in the module has been useful for preparing lectures, as an adjunct to demonstrating optimal communication skills through role plays, and reviewing resident-patient encounters. Residents who have read the module previous to patient en- counters have reported feeling more prepared and comfortable discussing end of life issues.
THE MODULE
Rationale arid Feelings About End of Life Discussions
In the initial part of the module readers are asked, “Why is it important for physicians to discuss advance care directives and end of life decisions effectively with patients?” It is noted that during focus group discussions with residents and practicing physicians, in Rochester, New York, end of life discussions were identified as a topic in which all groups desired more training. Patient focus groups also identified this as something that they wanted their physicians to speak with them about.
In the absence of frank discussions about advance care directives there is an implicit bias in our present medical system towards initiating and continuing therapies. At times, this is not in our patients’ best interests. This is particularly true of CPR. Every person is eligible for CPR in the absence of explicit, prior directives about their not desiring it. Recent work has shown that CPR is relatively ineffective in the frail elderly and with persons who are terminally ill (Gordon & Cheung, 1993; Murphy, Murray, Robinson, & Campion, 1989). The public gets much of their information about CPR from television programs that portray unrealistically positive outcomes of resuscitation (Diem, Lantos, & Tulsky, 1996). There are very
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few other therapies that are delivered without informed consent. While end of life discussions often revolve around the use of CPR and artificial ventilation, many other interventions including artificial feeding, dialysis, transfusions and even hospitalization, represent a formidable array of choices and decisions.
When is the best time for health care professionals to discuss these issues? For hospitalized patients one is meeting for the first time, there is often little choice (a frequent occurrence for residents). In caring for outpatients, it is often useful to include such a discussion as part of an initial or comprehensive assessment. Reserving time at the end one of these meetings is usually best. One should update and document thc dis- cussion as the relationship develops over time. This module provides information and strategies for dealing with some of these issues.
Personal Feelings About Death, and Role Play
“Dying is something we human beings do continuously, not just at the end of our physical lives on this earth” (Kubler-Ross, 1975). Death is part of life. Considering the circumstances of our own death enables us to understand the role that our personal beliefs play in discussions about death.
Exercise
Purpose: To have the learners learn to explore their own values, and how these values might relate to medical decision making, particularly at the end of life.
Format: Small group session with a trained facilitatorheacher. Role play can also be used in this session to have the learners elicit values from one another. For example, one could have a learner play the role of “phy- sician,” another as “patient,” and a third as an observer. It is also useful to invite other learners in the group to switch roles throughout the session.
Questions to Address
What do you most value in life? If you lost some or all of the things that you value would there come a point where life would no longer be worth living for you? Have you communicated these values to anyone? Have you ever discussed these issues with your own physician? Are you familiar with the concept of advance directives? Have you completed a written advance directive?
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How would you communicate your own advance care directives to your physicians and loved ones? What limits, if any, would you ever place on interventions to prolong your life? Are you sure that the person who would speak for you could carry out your wishes regarding health care decisions? (In the event that you did not have capacity.) Have you considered your own death? What would be an “ideal death” for you? Do your religious beliefs affect the way you feel about death? If so how? How do your personal values and thoughts of death affect the way you discuss these issues with patients?
Understanding your own feelings of how you would want to be cared for if you lost the capacity for decision making will give insight into the process in which your patients are involved. It will also givc you a per- spective on how your own feelings can influence the way you frame the discussion with your patients.
Role Play
In this exercise, one person agrees to play the physician, and one the patient. Have the two learners conduct an interview regarding end of life decisions. If other learners are present, have each focus on certain areas, such as windows of opportunity, non-verbal communication, demonstra- tion of empathy, beginning and ending of the discussion during the inter- view. Remind the role players that they may step out of the role any time it becomes uncomfortable or they need help.
Situations (Utilize These or Make Some Up)
A 78 year old female with a history of hypertension. She is indepen- dent and active. A 71 year old male with recently diagnosed metastatic colon cancer. A 65 year old female with severe emphysema and heart failure who has never been intubated and placed on a respirator. The eldest son or daughter of an 85 year old man with severe demen- tia who has recently been placed in a nursing home. He is bedbound and no longer recognizes his children. A 28 year old physician with leukemia which has not responded to chemotherapy.
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8 GERONTOLOGY Ce GERIATRICS EDUCATION
The Developittg Field: Corttniottly Used Terttts atid Concepts
Competence is a judicial determination regarding a person’s decision making ability. Capacity has been ynderstood as a more limited and spe- cific concept that refers to a person’s ability to make a particular decision. Thus, a man with dementia may not be able to manage his finances, but still may have the capacity to make decisions about his health care. All patients are presumed to have capacity until proven otherwise.
The determination of capacity is usually done at the bedside and calls for a commonsense assessment of the patient 5 ability to understand his present situation and the factors involved in a treatment decision. A good litmus test of capacity is to have the patient repeat back, in his own words, his medical condition, and the risks and benefits of treatment options that you have discussed with him. If he cannot do this, he either doesn’t have capacity or you haven’t discussed his situation in a way that he can under- stand. It is not necessary to have a psychiatrist make this determination. When the decision in question is one that involves forgoing of life-sustain- ing treatments, a second physician must also make a determination of incapacity.
A Health Care Proxy (HCP) refers to a document in which a person may designate a surrogate, known as a health care agent (HCA), to repre- sent his health care wishes in the event that he loses capacity for medical decision making. This document must be signed and dated by an adult in the presence of two adult witnesses. When completed appropriately this document bears the weight of the law in the state. One does not need a lawyer to complete this document. A New York State (NYS) Health Care Proxy form is attached to the module (see Appendix).
A Living Will and Durable Power of Attorney for Health Care Deci- sions are other legal documents regarding end of life decisions. The NYS Health Care Proxy law is intended to make these documents unnecessary. New York has no statutes governing living wills. Living wills are not necessary when a Health Care Proxy has been filled out. In New York, the courts have held, however, that living wills can provide the basis of fore- going life-sustaining treatment if the instructions qualify as clcar and convincing evidence of the patient’s wishes.
Under the Durable Power of Attorney (POA) law, activities that could be delegated are business related decisions, not health care decisions. Hcalth care choices are not legally recognized under the Durable POA. As a practical matter, consent of family has been generally accepted without statute authority.
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Ethical and Legal Points
The right of an individual to control hidher own body is deeply em- bedded in our country’s history. The doctrine of informed consent devel- oped as a means to enforce this right of bodily control. Within this doctrine is the right to informed refusal. As a result, a competent adult has the right to accept or refuse any medical treatmeht. That right is not lost by virtue of incompetence. There is no ethical or legal distinction between withholding and withdrawing therapy, however it may be more difficult, psychologi- cally, to withdraw a treatment.
It is the duty of the physician to diagnose a condition, and to educate the patient about the consequences of any subsequent therapy. The physician can, and should, provide guidance and advice but the ultimate choice belongs to the patient. This emphasis on patient autonomy has grown in contradistinction to a preexisting foundation in paternalism. No physician who has acted in good faith to limit therapies, based on a once-competent patient’s previous wishes or statements, has ever been found guilty of malpractice.
Working with Patients and Families
Eliciting and Recording Patient Wishes and Values
There are countless numbers of therapies and interventions that might be utilized at any given time. It is daunting, if not impossible, to predict all the interventions that one might want, or not want, under a wide array of circumstances. Most people with a good quality of life would limit very few therapies when confronted with an acute illness (with hope of recov- ery). However, when a person’s self-perceived quality of life is poor, or a catastrophic illness occurs that will lead to a poor quality of life, people may choose to limit therapies that will prolong their lives. It is difficult to predict the choices individuals would make under less than extreme cir- cumstances.
Living Wills and other written care directives are limited by much of this unpredictability and often do not capture the array of circumstances and potential therapies that apply in practice. This can result in some written directives being too vague in some circumstances, or too restrict- ing or inflexible in others (leaving the patients, physicians, and families in a ,quandary). The Health Care Proxy form (HCP) takes these problems into account and allows a person to choose someone to make decisions for them based on their previously stated wishes and/or values. If a person’s previous wishes are not known, the health care agent can make decisions
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in accordance with the person’s best interest. The NCP allows a person to bypass the usual chain of surrogates should they so desirc. The hierarchy of choosing a surrogate is usually: spouse, children (over 18 years old), immediate family, or others. The HCP also allows a person to state specif- ic directives should they so wish to (is., a Jehovah’s Witness might state that he or she would never want td have a blood transfusion under any circumstance. The proxy could not countermand such a specific state- ment).
Artificial Feeding and Hydration
If a person wants his health care agent to have the power to make decisions about artificial feeding, it is important to have made explicit statements about this to the agent. If a HCP has been completed, it is best to record these wishes in the document. The Statement can be as simple as, “My proxy knows my wishes regarding artificial feeding.” In the absence of such statements (or the completion of a HCP form), a person’s previous wishes can still be adequately represented by a health care agent (who understands the patient’s explicit wishes) regarding artificial feeding, or has clear and convincing evidence that the patient would not want such treatment. In New York State, the level of evidence needed to demonstrate that a person would not want artificial feedings is high, usually requiring an explicit, clear statement by the person. This statement can be as simple as: “If I were to become so ill that I could not talk meaningfully with my family and the hope of me regaining that ability was small, I would not want artificial feeding.” It is useful to have statements like this included in the Health Care Proxy form, or to state in the form that your health care agent knows your wishes regarding artificial feeding. If a person feels strongly that they would always want to have artificial feeding they should make sure their health care agents know their wishes (and if they have a HCP they should note this on the form).
When we understand our patients ’ values, we can more readily decide what they would want should catastrophic illness befall them, and cause them to lose capacity for medical decision making. In taking a values history, we need to understand what makes life worth living for our patients and under what circumstances (if any), would they no longer value living.
If a patient states that she would no longer want to live if she lost the ability to parlicipate in medical decision making (and had little hope of regaining that capacity), this would be useful in guiding treatment deci- sions. Losing the capacity to make decisions ofren parallels the loss of capacity for communicating about other important aspects of life. Patients with dementia or other cognitive problems may still be able to express
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their values and participate in medical care decisions. Their level of capac- ity to understand the problem at hand needs to be determined on an individual basis.
Beginning the Discussion
Whether performing a comprehensive assessment in an inpatient or outpatient setting, it is usually best to save this discussion for the end of your contact. In a critically ill patient, the discussion will have more immediate importance, and can be done in the context of your prognosis and potential treatment options. In a patient with pulmonary edema, for example, you might state the following (as you discuss treatment plans):
I expect that with these medications and oxygen, that we should be able to get rid of much of that fluid in your lungs and that you will do well. However, it is possible that you will not get better. One option at that point would be to place you on a ventilator that would help you breath in hopes that we could reverse some of the problems that you have.
At this point, you could discuss the pros and cons of ventilation with the patient. It is important in this instance to tell the patient that, regardless of the choice, you will administer medications (i.e., morphine) in doses that will ensure comfort. The patient also needs to know that the choice of being on a ventilator could be reversed should he become unconscious with little hope of recovery.
In an outpatient setting, one way to begin the discussion is:
None of us can predict the future. We know that death is inevitable and that sometimes disabling diseases can strike us. If I’m to do a good job as your doctor it will be useful for us to discuss how I should care for you in the event that you lose the capacity to discuss the options with me. One way for us to begin is for you to tell me the things you value most in life and under what (if any) circumstances, life would no longer be worth living for you.
There are other ways to begin the discussion, but focusing on patient values is inuch more useful than only discussing combinations of treat- men t opt ions.
Working with Families and Other Health Care Agents
When a patient has lost capacity for decision making, you will need to identify the appropriate surrogate to speak for the patient. If a health care
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proxy has not been completed, the surrogate is usually (by default) a spouse, immediate family member, or a sibling. At times, the person who has most knowledge of a patient’s wishes may be a good friend, caregiver, or even their pastor. Identifying all potential surrogates early in the pro- cess, and speaking with them together, can identify any discordancc in the group. Identifying and explicitly addressing any discordance, often facili- tates resolution.
For example, in a situation where two very involved siblings disagree about whether to write a DNR order (during a hospitalization for their mother with dementia), you might state the following:
I can see that the two of you have some disagreement about the best course of action to pursue here. I know that the two of you love your mother very much, and want to do what is best for her, as do I. Our duty, together, is to decide what she would want under these circum- stances. I know that neither of you wants to lose her. We have already discussed the pros and cons of CPR, and I have told you what I think is the best course of action. The two of you need to spend some time talking about this, so the three of us can treat your mother in a way that she would want.
If the paticnt’s wishcs regarding CPR are not known or cannot be ascertained, then it is appropriate to decide on the basis of the patient’s best interests.
When discussing the appropriate course of action with the surrogate(s) it is important to separate what treatment the patient would want under the circumstances from what the surrogate might want. Exploring this allows you a better chance of following your patient’s wishes and understanding how the impending loss of a loved one might factor into the health care agent’s thinking. It is often helpful to think of the type of information you are eliciting in three tiers (from most desirable to least desirable):
1. Advance Directives “Did your mother ever talk about death or how she might like to be
treated if she became unconscious? Did she ever talk with you or anyone about her wishes if she became deathly ill? Did she ever make any com- ments when others around her have died on how she might like to be treated under similar circumstances?”
2. Substitute Judgment
“If your father could sit up now what would he tell us? I know that you love your father, and hate the thought of losing him now, but we need to
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McCariri el al. 13
decide what he would want under the present circumstances-not what you or I might want.”
3. Best Interests (When 1 and 2 cannot be surmised.) “Since we cannot decide what your uncle would want, we can judge
what the average person would choose,lto help guide us. When I talk to my patients about this, many of them tell me they would want . . . .” Using one of these three tiers of representation allows the physician and family members to focus on what the patient would want, and not neces- sarily what the family wants. Admittedly, the margins between this dis- tinction can often be blurred.
It is important to tell the heath care agent (HCA) which course of action we (as physicians) think is most appropriate. This should be done with empathy and support. One must be very careful to avoid coercion or an implicit threat of abandonment, should the HCA disagree with our point of view. We allow people to make choices that we might disagree with, in the interest of patient autonomy.
lkeatinent Options
The EsJicacy of Cardiopulmonary Resuscitation (CPR) in Older Persons
The indications for cardiopulmonary resuscitation (CPR) have changed dramatically since its inception in 1960. What was initially a treatment for sudden death in the setting of an acute myocardial infarction, has become a procedure utilized in death from almost any cause. In the absence of a “Do Not Resuscitate” (DNR) order, CPR is often done by default. This is despite a growing body of evidence that indicates CPR is often ineffective, particularly in persons dying of non-cardiac, multisystem diseases.
Several studies have addressed the efficacy of CPR in older persons. In frail older persons who are dependent in their activities of daily living CPR is not particularly effective. Two studies looked at outcomes of patients living in nursing facilities who received resuscitation. They showed that less than 4% of patients survived to hospital discharge, and those that survived were often more debilitated than before experiencing cardiac arrest (Gordon & Cheung, 1993; Murphy et al., 1989). The out- comes of out-of-hospital cardiac arrest are very poor, with a recent large study of 2,329 people of all ages showing a survival of 1.4% (Lombardi, Gallagher, & Gennis, 1994).
Functionally active older persons with primarily cardiac disease, who
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suffer a witnessed arrest in the hospital, may fare better. One study of 78 hospitalized oldcr patients suffering cardiac arrest showed a survival rate of 26%. Some of the patients were more fbnctionally dependent after the arrest (Tresch et al. 1994). When people begin to develop functional disability, and accrue chronic illnesses, their survival drops precipitously, regardless of age. I
Research has demonstrated that older people use information about the efficacy of CPR when advance directives are discussed, usually resulting in their declining this therapy (Murphy et al., 1994). Unfortunately, much of the information people get regarding CPR comes from television dramatizations that often present CPR as a procedure akin to jump-starting a car, and almost always save the patient! Despite this distortion, surveys show that most older people want their doctors to speak to them about CPR (Lo et al., 1986).
The Utility of Artificial Feeding Near the End of Lfe
Food is an essential requirement of life and without it death is certain. The symbolic nature of food is very powerful and firmly rooted in our culture and religious beliefs. It is little wonder that the decision to not provide food is often a difficult one. The delivery of food through artificial means is viewed as a medical therapy. It may be instituted, withdrawn, or refused like any other medical treatment.
Much of the information about what happens to people when they decide to forego artificial feeding comes from the hospice literature and studies of patients with cancer. Scholars in this area claim that their pa- tients suffer very little because of not eating. One prospective descriptive study showed that dying patients, who chose not to have foods delivered by artificial means, did not suffer from hunger and thirst. Those patients that experienced hunger and thirst had their symptoms relieved with mouth care and small amounts of food and fluids that they chose to eat (McCann, Hall, & Groth-Juncker, 1994).
Studies in the oncology literature have shown that cancer patients, in the groups that received aggressive artificial feeding, had a higher mortal- ity and morbidity than those that did not (Clamon, Feld, & Evans, 1985; Koretz, 1984; Nixon, Moffitt, & Lawson, 1981). In a study of 37 patients with strokes who were fed with gastrostomy tubes, thc median time of survival was 53 days (range 2-528 days), with only 12% of the patients surviving for more than three months (Wanklyn, Cox, & Belfield, 1995).
Indeed, no study has shown that dying patients live longer, or are more comfortable, as a result of artificial feeding. Enteral tube feedings are not without side effects. One of these side effects is aspiration pneuinonia,
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which occurred up to 50% of the time in two studies. When feeding tubes are used in patients with conhsion or dementia, self-extubation is com- mon and often results in the use of restraints (Ciocon, Silverstone, Graver, & Foley, 1988; Quill, 1989).
Some Rules of Thumb to Keep in Mind Regarding Feeding
1. Dying patients should choose what they want to eat, when they want to eat and the amounts of food that they want to eat.
2. For some patients, the fantasy of eating is still important even though they may eat only very small amounts of the food presented to them.
3. Almost all dietary restrictions should be lifted in dying persons. 4. Food should be fed but never forced. 5. Education of family and caregivers is very important. 6. Food should never be withheld from a dying patient who desires it. 7. Artificial feeding carries substantial risks, especially aspiration and
self-extubation, that often results in the use of restraints. 8. To date, no studies have demonstrated that artificial feeding im-
proves morbidity or mortality in dying patients. 9. None of the predominant religions in the United States demand that
artificial feeding be administered to dying patients. All are firm however, that food never be withheld from a patient who wants it, even though it may cause pain or death.
10. Not eating seems to be part of the dying process, no matter what the cause. Organ function slows and metabolic processes shut down.
DISCUSSION
In graduate medical education, much effort is spent documenting that residents have acquired procedural skills such as starting intravenous lines, performing lumbar punctures and thoracentesis. However, little time is spent observing residents interviewing patients, particularly about end of life issues. Most residents report that they have never been observed and critiqued talking with a patient about these issues.
The present educational module on advance care directives and end of life decisions has been integrated into our curriculuin at various residency programs in Rochester, New York. The uses have ranged from the module serving as an adjunct to videotaped reviews of resident-patient end of life discussions, to use in educational conferences, and it has been used with small groups of residents.
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Much of our teaching takes place in a long term care facility. It has been most useful to instruct residents to begin end of life discussions by ascer- taining how a patient spends her day, and what she values most in life. The resident then explores any situations where life would not be worth living to the patient, and how this might relate to medical options. The most optimal sequence of events, we belidve, is when the resident first reads tlie module, then participates in a small group session where personal values are explored, interviews a patient while being videotaped, and then re- views the videotape with a faculty member. Our faculty members have undergone the same sequence of training with other faculty members who provided similar feedback.
Residents who have experienced this sequence have been very positive about it, although many have been reticent at first to be videotaped and reviewed. They have especially enjoyed the small group sessions and role play. We are currently evaluating whether this process has led to a change in attitudes and behavior of the residents who have gone through it.
REFERENCES Ciocon, J., Silverstone, F., Graver, L. M., & Foley, C. (1988). Tube feeding in
elderly patients. Archives of Internal Medicine, 148,429-433. Clamon, G., Feld, R., & Evans, W. (1985). Effect of adjuvant central IV
hyperalimentation on the survival and response to treatment of patients with small cell lung cancer randomized trial. Cancer 7keatntent, 69, 167-176.
Diem, S. J., Lantos, J. D., & Tulsky, J. A. (1996). Cardiopulmonary resuscita- tion on television: Miracles and misinformation. The New England Joiirnal of Medicine, 334(26), 1778-82.
Gordon, M., & Cheung, M. (1993). Poor outcome of on-site CPR in a multi- level geriatric facility: Three and a half years experience at the Baycrest Centre for geriatric care. Journal of the American Medical Association, 41, 163- 166.
Hanson, L., Tulsky, J., & Danis, M. (1997). Can clinical interventions change care at tlie end of life? Annals of biterttal Medicine, 126 (9,381-388.
Koretz, R. (1984). Parenteral nutrition: Is it oncologically logical? Joiirnal of Cliiiical Oncology, 2,534-538.
Kubler-Ross, E. (1975), The Final stage ofgrowth. Philadelphia: Prentice Hall Press.
Lo, B,. McLeod, G., & Saika, G. (1986). Patient attitudes to discussing life- sustaining treatment. Archives of Intertial Medicine, 146, I6 I3- I6 15.
Lombardi, G., Gallagher, J., & Gennis, P. (1994). Outcome of out-of-hospital cardiac arrest in New York City. The pre-hospital arrcst survival evaluation (PHASE) study. Journal of the Atnericari Medical Associatioit, 271(9):678-683.
McCann, R., Hall, W. J., & Groth-Juncker, A. (1994). Comfort care in termi- nally ill patients. The appropriate use of nutrition and hydration. Journal of the Ainericari Medical Association, 272( I6), 1263- 1266.
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Murphy, D., Burrows, D., Santilli, S. Kemp, A., Tenner, S., Kreling, B., & Teno, J. (I 994). The influence o f the probability o f survival on patient preferences regarding cardiopulmonary resuscitation. The New England Jotrrnal of Medicine,
Murphy, D., Murray, A., Robinson, B., & Campion, E. (1989). Outcomes o f cardiopulmonary resuscitation in the elderly. Annals of Internal Medicine, 111,
Nixon, D. W., Moffitt, S., & Lawson, D. H. (1981). Total parenteral nutrition as an adjunct to chemotherapy o f metastatic colonorectal cancer. Cancer neat- men& 65: 121-128.
Quill, T. (1989). Utilization o f nasogastric feeding tubes in a group o f chroni- cally ill, elderly patients in a community hospital. Archives of Internal Medicine,
The SUPPORT Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognosis, preferences for outcomes and risks o f treatments. Journal of the American Medical Associa- tion, 274(20), 1591-1598.
Thomas, L. (1973). Notes o f a biology-watcher. Death in the open. The New England Jotirnal of Medicine, 288(2), 92-93.
Tresch, D., Heubert, G., Kutty, K., Ohlert, J., VanBeek, K., & Masi, A. (1994). Cardiopulmonary resuscitation in elderly patients hospitalized in the 1990s: A favorable outcome. Journal of the American Geriatrics Society, 42, 137- I 4 I .
Wanklyn, P., Cox, N., & Belfield, P. (1995). Outcome in patients who require a gastrostomy after stroke. Age and Ageing, 24,s 10-5 14.
330(8), 545-549.
199-205. I
149, 1937-1941.
APPENDIX
Health Care Proxy Form
(your name) (1) 1,
hereby appoint (name, home address and telephone number of proxy)
as m health care agent to make any and all health care decisions for me, exce t to the ex- tent ttat I state otherwise.This proxy shall take effect when and if I become unagle to make my own health care decisions. (2) Optional instructions: I direct my proxy to make health care decisions in accord with my wishes and limitations as stated below, or as he or she otherwise knows. Note that unless your agent knows our wishes about artificial nutrition and hydration (feeding tubes), your agent will not be allowed to make decisions about artificial nutrition and hydration. (Attach additional pages il necessary.)
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APPENDIX (continued) (3) Name of substitute or fill-in proxy il the person I appoint above is unable, unwilling or unavailable to act as my health care agent.
(name, home address and telephone number of substitute) I
(4) Unless I revoke it, this proxy shall remain in effect indefinitely, or until the date or condi- tions stated below. This proxy shall expire (specilic date or conditions, i f desired): (5) Signature Dale of Birth: Address
Statement by Witnesses (must be 18 or older) I declare that the person who signed this document is ersonally known to me and appears tobeol sound mindandactingof hisor herown freewii. Heorshesigned(oraskedanother to sign for him or her) this document in my presence. Witness 1
Witness 2 Address The person you appoint as your health care agent cannot sign as a witness. Please inform the person you choose that he or she will be your heallh care agent.
About the Health Care Proxy Form
This is an impotlanl legal form. Before signing this You can choose any adult (over 18), including a lamily lorm, you should undersland the lollowing lack member, or close Iriend, to be your agent. II you select
a doctor as your agenl, he or she may have lo choose 1. This lorm gives Ihe person you choose as your between acting as your agent or as your attending
agent Ihe authorily to make all health care doclor; a physician cannot do both at the same lime. decisions lor you, eXCepl to Ihe extenl you say Also, il you are a patienl or residenl 01 a hospital, olhewise in this lorm. "Heath Care" means any nursinghomeormenlal heallhfacilii,therearespecial Irealmenl, serviceor procedure lo diagnoseor treal restrictions about naming someone who works for lhat your physical or mental conditions. lacilir/ as your agent. You should ask stall at the lacility
to exolain lhose restrictions. 2. Unless you say olherwise, your agent will be
allowed to make all health care decisions lor you, you should 'ell Ihe person you choose that he Or
discuss your heallh carewlshesand this form wllh vour agent. Be sure to give him or her a slaned life-sustaining trealmenl.
including decisions to remove or she Wi l l be your health Care agent. YOU Should
- - 3. Unless your agent knows your wishes abut COPY* Your agent cannoi be sued for
arlilicial nulrilion and hydration (nourishment and decisions made In good faith' waterprovidedbyaleeding tube), heor shewillnot Even after you have signed this lorm, you have the be allowed lo reluse lhose measures lor you. right lo make health care decisions lor yoursell as long
as you are able lo do so, and lreatment cannot be given 4. Your agent will starl making decisionsfor you when to you or stopped il you objecl. You can cancel the
doctors decide lhal you are not able to make heallh control given lo your agenl by telling him or her or your care decisions lor yoursell. heallh care provider orally or in wriling.
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McCaJin el al. 19
APPENDIX (continued) You may write on this form any information about lnstruclions for Fillina Out A Proxv . Form treatmenl that you do not desire andlor those treatments that you want to make sure you receive.
written) when making decisions for you. (1) your name and the name, home Your must your inslruclions (Oral and address and telephone number ofthe person you are
selecting as your agenl. - . - II you want to give your agent wriHen instruclions, do ltem(2) II you havespecial instructionslor youragent, so riiht on Ihe form. For example, you could Say: you should write them here. Also, if you wish to limil
"/l/becomefermina/~i/l, ldddon'fwanlforeceive your aaent's authority in any wav. YOU should sav so fhe /o//owing lrealmenfs: ..."
' I / / I am in a coma or unconscious, wifh no hope or recovery, fhen ldddon'f wanf..."
"/I I have brain damage or a brain disease lhal makes me unable fo reoognize people or speak and fhere is no hope lhal my condifion will improve, I da/don'f wanf ..." Examplesol medical treatments about which you may wish to give your agent special instruclions are listed here. This is not a complete list of the treatments about which you may leave instructions. These indvde Mi- cia1 respiration, artiliiial nutrition and hydration (nour- ishment and water provided by feeding tube), cardiilmonary resuscitation, anliycholic medim lion, electric shodc therapy, antibiotics, psychosur- gery. dialysis, transplantalion, blood translusions, abortions, and sterilizalions.
Talk about choosing an agent with your lamily andlor close Iriends. You should discuss this forin with a doctor or another heallh care professional, such as a nurse or social worker, before you sign it to make sure that you understand the types of decisions that may be made for you. You may also wish to give your doctor a signed copy. You do not need a lawyer to lill out this lorm.
here. ljyoudo not stde any iimitations, yourageni will be allowed to make all health care decisions lhal you could have made, including the decision to consent to or reluse lile-sustaining treatment.
Item (3) You may write the name, home address and telephone number 01 an allemate agenl.
Item (4) This form will remain valid indelinilely unless you set an expiration date or condilion for its expiration. This selection is optional and should be lilted in only il you want the health care proxy to expire.
Item (5) You must date andslgn the proxy lorm. II you are unable to sign yourself, you may direcl someone else to sign in your presence. Be sure to include your address.
Two witnesses at least 18 years 01 age must sign your proxy lorm. The person who is appointed agent or alternate agent cannot sign as a witness.
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