An 82-year-old competent resident of a long-term care facility who had severe Parkinson's disease, with difficulty swallowing and communicating, began dropping his blood pressure from 80/50 to 60 systolic. His health care providers were unsure whether to transfer him to an acute care facility for hydration or to place a gastrostomy tube for feeding. Nurses sometimes question whether medical interventions such as tube feedings, mechanical ventilation, and CPR aid elders or merely prolong the dying process. This article will explore methods that give voice to the wishes of vulnerable, dying, or incapacitated elders concerning lifesustaining interventions. It will also explore how nurses might assist elders in preparing for the difficult choices surrounding dying.
The most appropriate question to consider when asked to make a health care decision for another person (patient, client, resident, or family member) is if the individual is capable of making and communicating a rational decision. When a person is competent, as the resident with Parkinson's disease was, both legal and ethical principles support the person's right to make decisions concerning his/her own medical care. A competent adult is not required to accept a medical treatment that has little or no chance of benefit (is futile) or is excessively burdensome (e.g., painful, expensive, or distressing). Conversely, a competent adult does not have the right to all treatments that are possible, only to those that would appear to offer some benefit. Thus, a competent adult should be able to accept or decline potentially beneficial medical care during the days, months, and sometimes years prior to death.
Unfortunately, many competent adults, such as the resident described above, are not asked to give voice to their wishes for end-oflife care. Physicians appear to be uncomfortable speaking with their patients about end-of-life care (Cotton, 1993; Support, 1995) and many postpone discussions until patients are no longer able to communicate so that families are required to make end-of-life decisions (Stolman, Gregory, Dunn, & Levine, 1990). Since communication with the resident with Parkinson's disease was very tírne-consuming, his physician made an initial decision about the residenf s care after consulting with die patient's wife and daughter.
This was unfortunate since the resident, like most elders, had considered end-of-life care and wished to discuss end-of-life choices with his physician (Wetle, 1994). However, most elders are reluctant to initiate the discussion and feel it is the responsibility of the physician (Kohn & Menon, 1988). Thus, the reluctance of elders to initiate the discussion and the unwillingness of many physicians to discuss the issue with their patients usually means physicians do not plan end-of-life care with their competent older clients.
Instead, a family member or a nurse might convey the competent elder's concerns to the physician. For example, an 85-year-old woman was hospitalized with heart failure and pneumonia. She was deteriorating despite antibiotics, Lasix, an ACE inhibitor, and oxygen therapy. Although she was awake and responsive, her physician approached the only relative, her grandson, to discuss if she should be intubated and ventilated. The grandson, surprised at the request, wondered why the physician was asking him when his grandmother was fully capable of making her own decisions. Although the grandson urged the physician to speak with his grandmother, the physician refused saying he did not have sufficient time for such a discussion. The grandson eventually explained the situation to his grandmother, determined her wishes, and conveyed the information to the physician. If the grandson had not persisted, the wishes of this competent, older woman would not have been taken into account in her end-of-life care.
Since many family members are not so insistent, nurses should facilitate discussion of end-of-life care between physicians and competent elders. It is important that physicians and competent patients speak directly about end-of-life issues for several reasons. First, several studies have indicated that neither physicians, nurses, nor family members can reliably predict which interventions elders desire (Johns, 1996). Without a discussion, the elder's wishes are not likely to be known. Second, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a large multi-medical center study of seriously ill patients, demonstrated that when specially prepared nurses discussed life sustaining technology with competent, dying clients and described the dying clients' desires to their physicians, the physicians did not alter their intervention plan to coincide with their clients' wishes (Support, 1995). These nurses were unable to serve as intermediaries between the patient and physician and facilitate end-of-life discussion or decisionmaking. However, these nurses were not the patients' primary nurses. Often the patients' or residents' own nurses, by promoting honest, open discussion between physician, family, and competent elder can insure that elders' wishes are voiced, heard, and respected.
Patient advocacy can be defined as the ability to form a human connection with the client and to assist the client to determine the direction of his/her care. It is especially important that nurses listen to the wishes for health care of their vulnerable clients and assist clients with the expression and achievement of their rationally chosen desires. The nurse caring for the resident with Parkinson's disease spent sufficient time communicating with the resident to determine he had made a rational decision not to receive tube feedings or to have his life prolonged. The nurse coordinated a discussion about treatment between the resident, his wife, daughter and the physician. The nurse's assumption of the advocacy role allowed the resident's wishes to be respected and he died peacefully several days later.
Upholding the end-of-life choices of competent elders is difficult, but respecting the desires of those no longer able to state their wishes is even harder. Since 1991, the Patient Self-Determination Act (PSDA), designed to allow patients to guide their medical treatment, should they become incapacitated, has been in effect. This act requires health care institutions (hospitals, long-term care facilities, and HMOs) to provide written information informing clients of their rights to make advance directives. Institutions must determine if a client has an advance directive and document the presence or absence of a directive in the client's record. Institutions may not discriminate in the care provided to a client based on the presence or absence of an advance directive.
Common Types of Advance Directives
Advance directive legislation was developed to protect the moral and legal right of the patient to selfdetermination, diminish uncertainty about what a patient would want done, and reduce conflict among decision-makers (Pellegrino, 1992). Each state has legislation detailing the types of advance directives permitted in that state. The two most common types of advance directives are instructional directives such as living wills or medical directives and proxy designates such as the durable power of attorney for health care purposes. The Table summarizes information about advance directives. Since the majority of Americans (about 80%) have not completed an advance directive, many states also have statutes that designate relatives as proxy decision-makers when no advance directive exists.
Instructional directives specify a client's desires for medical treatment under specific conditions. Living wills were the first of the instructional directives developed. A living will becomes effective when an individual is terminally ill and usually expresses the individual's desire to die without the institution of life prolonging medical interventions. Interventions that would keep the patient comfortable during the dying process are usually encouraged.
Despite initial endorsement by both physicians and medical ethicists, living wills have created as many problems as they were intended to resolve. First, few Americans (only about 9%) have made living wills. People may fear that rejecting life support in the event of terminal illness means rejecting all care. One disadvantage of living wills is they rarely specify which treatments are acceptable to the patient and which are unacceptable.
A more serious problem is confusion over the terminology of living wills. Most living wills only take effect if the patient is terminally ill or the person's death is imminent. However, physicians may disagree or be unsure if a condition is terminal. For example, a 90-year-old woman with COPD developed pneumonia following a mastectomy. Anticipating the woman's death within 24 hours, the physician recommended that her living will be honored and mechanical ventilation and antibiotics not be instituted. Months later, while arranging longterm care placement for the woman, her family wondered if she would have been able to return to her own home if she had been treated more aggressively.
In contrast, an older woman with severe heart failure was being mechanically ventilated and receiving W dobutamine. She had a living will in her hospital record and she kept writing notes to the nursing staff saying, "Please take this away. Let me die." When the nurses notified the cardiologist of the woman's request to withdraw life-sustaining technologies, he refused. The cardiologist insisted the woman was depressed and because she could recover from this episode of heart failure, was not terminally ill. Confusion about what constitutes a terminal illness can lead to disagreement between health care providers, patients, and families over when a living will should come into effect.
Developed in the 1980s, medical directives are the second type of instructional directive. Medical directives attempt to eliminate some of the problems of the living will, vagueness in terminology, lack of ability to request an intervention, and poor communication (Emanuel & Emanuel, 1989). By asking clients what interventions they would choose in various circumstances, medical directives make explicit the person's wishes for medical treatment in those situations. People are asked to indicate if they would desire such interventions as CPR, mechanical ventilation, food or nutrition, and antibiotics in such circumstances as irreversible coma or brain damage with or without a terminal illness.
When questioned, older adults do differentiate between the various scenarios and indicate preferences for specific treatments based on personal preference. In response to specific scenarios, elders were most likely to request life-sustaining treatment during a critical illness and least likely to request it for permanent unconsciousness (Danis et al., 1991). Elders' treatment choices were not affected by depression (Cotton, 1993) and were relatively stable over time (Everhart & Pearlman, 1990).
One advantage of medical directives in this era of health care cost containment is that a client may affirm that s /he desires certain medical interventions. Unlike the living will, a medical directive allows a client to choose that certain interventions be administered if clinical conditions warrant them (Emanuel & Emanuel, 1989). Clients who fear increased barriers to health care and restrictions on health care delivery may use medical directives to express preferences to be treated under certain circumstances.
There are significant limitations to the effectiveness of medical directives, however. First, new therapeutic options that the person had not considered might emerge or the patient's actual condition might be different from anticipated (Pellegrino, 1992). Second, the interests of the patient might have changed since the time when the directive was written. For example, a 76-year-old gentleman executed a medical directive stating he wished CPR in the event of cardiac arrhythmia. Four years later, after being defibrillated twice for ventricular fibrillation following an MI, he announced to his family he no longer wished to be resuscitated; unfortunately, he did not revise his medical directive.
The preceding example highlights two additional concerns about medical directives. First, not all clients want their advance directives followed strictly. In a study by Sehgal and colleagues (1992), over half of the subjects wanted their advance directives to be overridden in certain circumstances such as when they were in pain or suffering or if mere were quality of life concerns. Second, although oral directives are often discounted by health care providers as untrustworthy, many patients think they should carry the same weight as written ones. Older adults are more likely to prefer an informal discussion with family members or physician about their end-of-life preferences as opposed to a formal, written medical directive (High, 1993; Sachs, 1994).
Finally, a medical directive is of little use if the individual has merely completed the form without engaging in a discussion of his/her desires with family and physician. It is the discussion of the patient's goals, values, and desires during the preparation of the directive that allows the family and health care provider to ascertain what the patient would have wished if the actual situation does not exactly match the anticipated scenario. When medical directives were initially proposed, it was assumed that such discussion would necessarily result.
Unfortunately, such a discussion does not occur easily or frequently. Although more than 90% of elders want to discuss advance directives with their physician, elders are reluctant to initiate the discussion. Physicians are also uncomfortable with initiating discussions of advance directives. They cite such constraints as lack of time and inadequate reimbursement. Emanuel suggests a one time third party reimbursement for each patient with whom a physician discusses an advance directive (Emanuel & Emanuel, 1989).
Physicians also have a variety of fears about initiating discussion of end-of-life planning including: that the patient will become depressed, mat die patient will be so stressed that s /he will have a cardiac arrest, mat it will convey hopelessness to the patient, or that the physician will appear to be giving up on the patient (Cotton, 1993). Studies have demonstrated no negative effects on elders from discussing death-related issues (Cotton, 1993). In contrast to the physician's fears, "Patients are very much relieved when someone talks to them about what they want at the end of life. Patients are afraid they are going to enter an institution and lose all their ability to make decisions, that things are going to be done for them" (Meyer, 1993). Still, the reluctance of patient and physician to initiate the discussion means that only 10% to 20% of patients have discussed end-of-life care or done any advance care planning with their physician.
While few elders have discussed end-of-life care with their physicians, about two-thirds of patients say that they have discussed such issues with their families, at least in general terms (High, 1993). Many elders desire their family members to make decisions for them in the event they cannot. A formal mechanism that permits an individual to choose someone else to make decisions for them is a proxy designation.
Health care proxies, such as the Durable Power of Attorney for Health Care Purposes, allow an individual to designate an agent to make health care decisions for the individual under specific circumstances (usually incompetence, incapacity or terminal illness). The agent must be independent of any health care institution with which the individual is affiliated. Instead of the elder's treatment preferences being detailed in a directive, another individual, often a family member, is entrusted by the elder with making treatment decisions for him or her. Proxy directives have the advantages of greater flexibility with more relevance to the actual situation and personal involvement of the decision-maker.
The ethical standards or principles used to guide the agent when making health care decisions are of concern to many ethicists and proxies. When an elder has clearly expressed his/her wishes either orally or in a medical directive then these instructions ought to be followed if they relate to the situation. For example, a 72-year-old man with cirrhosis from 12 years of chronic active hepatitis was bleeding profusely from gastritis and esophageal varices. He was unresponsive but had both a medical directive stating he did not wish life support in the event of coma and had appointed his son as durable power of attorney for health care purposes. The son and physician had little difficulty agreeing that the goal of the man's care ought to be comfort rather man cure and no life support measures were instituted.
When the elder has appointed a proxy but has left neither written nor verbal instructions, the proxy might use substituted judgment or best interests standards to decide what care to provide. The substituted judgment standard directs the agent to use available knowledge of the elder's values and wishes to determine what the elder would have chosen had s /he been able to make the decision. For example, an 89year-old woman had a severe left hemispheric CVA that left her speechless, unable to move her right side, unable to swallow, and responsive only to noxious stimuli. The son, who had proxy decision-making power, was asked if his mother should be tube fed. Previously, the woman had been fiercely independent and private, refusing to move from her home or accept help from others. She had repeatedly stated that she never wanted to have other people care for her; she said it would kill her. The son had little difficulty recognizing that his mother would not desire tube feeding.
When the agent is unaware of the elder's wishes or desires, the best interests standard might be invoked. The best interests standard directs the proxy to choose the intervention that best promotes and protects the elder's interests. Usually the agent selects the intervention that most reasonable or prudent people would choose under the circumstances. Some etbicists argue that this standard may be appropriate even if the elder has left prior instructions since this standard reflects what is best for the elder at the time of the decision that might be different from what the elder had anticipated when leaving instructions.
Elders overwhelmingly prefer to have family members make decisions for them about end-of-life care (High, 1993) using a best interests standard. For example, an 82-yearold man had selected his niece as health care proxy. When she informed him that she needed to discuss his wishes so that she could make appropriate decisions for him, he told her he had chosen her because he trusted her to use her judgment to make decisions in his best interests. He knew he could not foresee all of the treatment options so he did not wish to discuss them. He wanted treatments if they had potential to return him to his current level of functioning but did not desire interventions that would leave hint permanently dependent on others. He also stated he wanted her to spend his money wisely. He instructed his niece to use her best judgment to have his medical care meet these interests.
In most cases, a proxy decisionmaker or a close family member will make appropriate decisions (Brock, 1994). However, there are problems with proxy decision-makers. Sometimes the elder has not discussed what proxy decision-making entails with his/her agent. One older man with early Alzheimer's had signed a durable power of attorney for health care when making his estate will. He had appointed a friend as his health care proxy. During the elder's terminal illness, his friend stopped visiting and was unreachable for long periods of time, usually when a decision needed to be made.
Occasionally when elders are forced to choose only one person as a health care proxy they make surprising choices. One 80-year-old man with early Alzheimer's chose his older, more responsible son to be the executor of his estate will. Not wanting to make his younger, 45year-old son feel left out, the elder named the second son his health care proxy. The younger son had never moved from home, never held more than a part-time job, and was unable to perform such activities as washing his own clothes. When asked to make a decision about tube feeding and continuing long-term care for his father, the younger son would take not action and could not make a decision. Yet he persisted in saying it was his job and would not allow his brother to help.
Sometimes when making substituted judgments, proxy decisionmakers will incorporate their own beliefs or will misinterpret or not recognize the wishes of the elder. A study of long-term care residents indicated proxies tended to express certainty regarding resident preferences without a clear rationale (Diamond, Jernigan, Moseley, Messina, & McKeown; 1989). Other studies have demonstrated inconsistencies between resident and proxy decisions in hypothetical situations (Johns, 1996; Sugarman, 1994). Proxies may also have difficulty determining what would be in the elder's best interests when there are financial or emotional conflicts. However, unless the proxy's decision is in sharp conflict with a prior statement from the elder or the designated proxy is clearly no longer an agent the elder would want, the designated proxy or family member is probably the most appropriate decision-maker (Brock, 1994).
EFFEQS OF ADVANCE DIRECTIVES
Only a small percentage of American adults, between 15% and 25%, have formal advance directives. Education about the purpose and use of advance directives by health care providers usually does not dramatically increase the number of elders who complete them (High, 1993). Although elders are interested in discussing end-of-life care with family and health care providers, they put off and avoid completion of formal advance directives. Most elders say their present health does not require formal endof-life planning or they are confident they can rely on their family to make an appropriate decision when the time comes (High, 1993).
Even if an elder does complete an advance directive, especially a medical directive or living will, there is no assurance that it will affect endof-life care. (Dresser, 1994; Support, 1995). In one study, only 45 of 735 patients who reported having an advance directive had its existence acknowledged in the medical record (Lynn & Teno, 1993). Advance directives created in the long-term care setting are often left behind when the resident is transferred to an acute care hospital (Danis, 1994).
Even if the directives are available with the medical record, patients' preferences as expressed in an advance directive may be ignored. Physicians may refuse to follow advance directives because of concerns about legal implications or conflicting moral values (Grant, 1993; Pollard, 1991). Advance directives lead to care consistent with the elder's wishes when a relative or proxy vigorously asserts the validity of the directive or the health care provider and elder have come to an understanding about treatment during the preparation of the directive (Danis, 1994). When physicians appreciate the rationales for their patients' choices, they may be less likely to have misplaced concerns about moral or legal implications.
Some ethicists are beginning to question the value of advance directives. Teno, Hill and O'Connor (1994) state "What seems to remain a good idea is not working as well in practice as we anticipated." High (1993) suggests that since most elders prefer to trust the decisions of their family members, advance directives might only be necessary when a person chooses to have someone other than his/her immediate family make treatment decisions. Other ethicists believe the advance directive process can be too legalistic (Pellegrino, 1992) or irrelevant (Dresser, 1994). They believe more humane and responsible care will result from a discussion among the family, health care providers, and patient or proxy about the goals of therapy than from reliance on a pre-established form. However, if there is no trusted family member or if the patient has very specific desires, advance directives may provide essential guidance.
If end-of-life care was in accordance with patients' choices, then the lack of advance directives would not be a concern. However, SUPPORT (1995) documented problems with end-of-life care for seriously ill patients in American hospitals. According to Lo (1995), "Patients in the study experienced considerable pain: one half of the patients had moderate to severe pain during most of the final three days of life. Communication between physicians and patients was poor: only 41% reported talking to their physicians about prognosis or cardiopulmonary resuscitation (CPR). Physicians mistook patients' preferences regarding CPR in 80% of cases. Furthermore, physicians did not implement patients' refusals of interventions."
NURSES' POTENTIAL TO IMPAQ END-OF-UFE CARE
Nurses can impact end-of-life decision-making in a variety of ways. First, they can prepare people to think about end-of-life decisionmaking for themselves and their family members. As the professionals who provide care for clients during their last days, nurses have an interest in seeing that end-of-life decisions are thoughtfully made. There are several topics nurses might include during public education about end-of-life decision-making. First, nurses might explain a competent adult's right to accept or refuse potentially beneficial medical treatment Next, nurses are well-prepared to describe the effects of such life-prolonging interventions as CPR, dialysis, mechanical ventilation, and tube feeding. Then, nurses ought to encourage people to discuss their thoughts about goals of medical care and life-prolonging interventions with their families and health care providers. Finally, nurses should provide people with information about the health care directives available in their state.
Facilitation of Discussion of a Person's Desires
Fortunately, merely providing people with information about advance directives does not dramatically increase the number of directives completed. An authentic advance directive requires careful thought about goals and values in end-of-life care. Additionally advance directives are unlikely to have an effect on care if a health care provider, proxy, or family member does not support and advocate for following the person's wishes. Therefore, it is extremely important that advance directive planning include discussion of the person's wishes with health care provider, proxy, or family members. Nurses should facilitate such discussion among the general public, hospitalized patients, and residents of longterm care facilities.
Health care institutions are required by the PSDA to inquire if people have an advance directive when they are admitted to the facility. The facility must also provide information to clients about their rights to make an advance directive. The institution can choose who is responsible for carrying out these duties. When an admissions clerk includes the questions as part of the admitting process, the opportunity for discussion is often lost.
Nurses in some institutions query patients about advance directives as part of the admission nursing assessment. Most nurses indicate a 5minute discussion is adequate to determine if the patient has an advance directive and provide the initial information. Some nurses believe the primary care provider should be required to ask patients if they have advance directives since the question can stimulate a discussion about treatment goals and endof-life planning.
If an elder has an advance directive, the nurse should ask the elder if a copy is available for the medical record. The nurse should obtain a copy of the directive from the patient or old medical record, read it, and place a copy in the current medical record. The nurse should discuss with the elder what s /he understands the directive to mean and how strictly the elder wants the directive followed. The nurse should determine that the directive is current and consistent with the patient's expressed desire for care. The nurse should also ask if the family, proxy, and other health care providers know about and understand the directive.
If the elder is transferred to another facility, the nurse ensures that a copy of the directive is transferred with the elder. This is especially important when a resident is transferred from a long-term care facility to a hospital or medical center to prevent undesired treatment from being instituted. It is helpful if a family member or health care provider is available to explain and advocate for continued use of the directive at the new facility.
Since most elders do not have advance directives, the ANA recommends nurses ask clients in their care die following three questions: Do you have basic information about advance directives, including living wills and durable power of attorney? Would you like more information? Do you wish to initiate an advance directive (ANA, 1996)? If the patient wishes to initiate an advance directive, the nurse should notify the appropriate person at the institution, often a social worker or chaplain, who is responsible for assisting clients with completion of advance directives.
The nurse might consider asking several additional questions to clarify the wishes of elders who have not executed an advance directive. The nurse might ask if the elder has ever talked with anyone about the extent of medical treatment s /he would prefer, whom s /he spoke with, and what they discussed. The nurse might also ask whom the elder would trust to make a medical decision for him / her if s /he were unable to make one.
Nurses must remember that advance care directives only take effect when a patient is determined to lack decision-making capacity. The nurse should actively promote the involvement of decisionally capable elders in decision-making about their care as long as the elders wish to have a voice. The nurse may also assume an important role in determining elders' decision-making capacity and ability to communicate a decision.
Most importantly, nurses must remember that end-of-life decisionmaking is not about filling out a form, rather it is about a decisionmaking process. To facilitate the process, the nurse should encourage a collaborative discussion between physician, family, and proxy or competent older adult. A discussion of the prognosis, as much as it is known, and goals for treatment based on an elder's expressed desires or best interests is important. Nurses, by initiating and coordinating such dialogues, can assure that the wishes of elders for end-of-life care are voiced and heard.
The daughter of an 87-year-old non-verbal, hémiplégie woman with multi-infarct dementia approached the head nurse of her mother's longterm care unit. The daughter was concerned because her mother was eating very little and was losing weight despite being fed and receiving nutritional supplements. She wanted to speak with the physician about instituting tube feeding. The resident did not have an advance directive. The resident's physician had only cared for her for the past year and stated he would be willing to obtain a consultation for insertion of a gastrostomy tube if the daughter desired it.
During the subsequent 2 weeks, the nurses in the long-term care facility pointed out to the daughter that her mother was neither hungry nor thirsty, that she enjoyed drinking her coffee, that she liked the flavor and texture of her foods, and she appreciated the human contact during meal time. Finally, they asked the daughter what additional benefit she thought her 89-year-old mother would obtain from tube feeding. The daughter decided not to request insertion of a gastrostomy tube and the physician complied with her decision. The resident's weight loss subsided. Two years later, the resident awoke one morning, surprised her caregiver by speaking and thanking him for treating her so well and died smiling at the woman who had often fed her.
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Common Types of Advance Directives