Nurses are increasingly caring for older persons who have become decisionally incapacitated due to acute or chronic illnesses. A nurse may be called on to share in the decision-making process for the elderly patient or to assist in bringing about a surrogate decision involving the patienfs relatives and the medical team (Cohn, 1983; Guido, 1988; Trandel-Korenchuk, 1982).
All too frequently, however, discussion of medical decision making for incapacitated elderly patients takes place after the fact. Little advance planning is done. The episodes of crisis decision making for family members and health-care professionals when an elderly patient become decisionally incapacitated must be decreased; therefore, an exploratory study was conducted to determine whether hospitalized acutely ill elderly patients would have more interest in planning for possible decisional incapacity than has been reported about nonhospitalized elderly persons (High, 1988; 1990). It was anticipated that acutely ill hospitalized elderly people would want to express their wishes in advance and to complete written directives, such as living wills, or appoint proxy health-care decision makers.
Most states have enacted living will statutes and many states authorize proxy agents to make medical decisions through a durable power of attorney or surrogate decisionmaking instrument. Even though these instruments have been widely advocated (Clark, 1987; President's Commission, 1982; Society, 1985 and 1988; Special Committee, 1987), surveys tend to show that fewer than 10% of older adults are using them ("Many doctors," 1988; Society, 1987; Zweibel, 1988).
Two recent events are having a profound affect on the attention to advance treatment directives: the US Supreme Court decision in Cruzan v. Director of Missouri Department of Health (1990) and the congressional passage of the Patient Self-Determination Act in 1990. Effective December 1, 1991, the latter requires all medical providers who serve Medicare or Medicaid patients, including hospitals and nursing homes, to inform patients of their rights to accept or refuse treatment, provide information about their state's advance directives, and to maintain appropriate records of patients' advance planning. Protocols developed for compliance with the Act signal more, not less, involvement and responsibilities for nurses.
Knowledge and Use of Advance Directives*
What has been missing from the advocacy and policy development is any significant consideration of how hospitalized elderly patients themselves feel about all this, including their preferences and views concerning advance directives and expectations for surrogate decision makers. The research discussed here attempts to take seriously the preferences and views of hospitalized elderly patients and ascertain their actual interests and disinterests in advance planning and preferences for surrogates.
The study used a qualitativeexploratory method involving indepth interviews. Effort was aimed at discovering themes and categories employed by the elderly themselves and generating hypotheses for future study. The interviews, ranging in length from 30 minutes to an hour, were conducted in the privacy of the patient's hospital room using a semi-structured instrument that allowed for open-ended conversations. The participants were encouraged to talk freely, elaborate on, and give reasons for their preferences and expectations regarding the possibility of decisional incapacity, long-term care, and surrogates for health-care decision making. Written consent was obtained from each patient after the study was explained and questions were answered. The subjects were assured that the interview would be suspended any time the patient felt physical discomfort or became fatigued. Family members were not present during the interviews.
The interview instrument distinguished among informal advance directives, such as conversations and writing notes; formal advance directives, such as living will forms; and proxy appointments, such as the use of a durable power of attorney. For purposes of the study, a living will was defined as a written declaration of an individual's wishes to forego life-sustaining treatment in the event of a terrninal illness. A proxy for health-care decision making was defined as an agent for a patient appointed through use of the legal instrument of a power of attorney.
The participants were asked what they knew, what they had done, and what they might want to do in planning for possible decisional incapacity. The latter was understood as a medical rather than judicial determination of a temporary or permanent functional inability to comprehend information, deliberate, and make choices. The participant's health-care history (as selfreported) was obtained to the extent that questions were asked concerning the reason for hospitalization, length of stay, kind of medical treatment within the past year, personal involvement in health-care decision making for self and others, and overall condition of health. These qualitative data assisted the researchers to understand the patient's past experience with medical treatment, hospitalization, and involvement in health-care decision making and to ascertain whether length of stay, reason for hospitalization, and overall health were factors in the patient's attitude toward planning for decisional incapacity and surrogate decision making. Demographic data were obtained on age, gender, marital status, race, living arrangements, place of residence, family (children and siblings), and education.
The study participants were 43 decisionally capable patients hospitalized at a tertiary care center. Ages of the participants ranged from 66 to 89 years, with a mean age of 74 years. Thirty-three respondents were women and 10 were men. Twenty-four were married, 14 widowed, 4 single, and 1 divorced. Twenty-two of the participants perceived themselves to be in excellent or good health; 21 were in fair or poor health. Twenty-seven were hospitalized for myocardial infarction or chronic heart disease, 10 for orthopedic care, 5 for general surgery, and 1 for diabetes. Fourteen had been hospitalized for a week or more; 29 a week or less. Twelve of the participants lived alone. All but 5 of the sample had living children and 33 had living brothers and sisters. Among the participants, 7 had completed a college education, 13 had completed a high school degree, and 22 had completed 9 or fewer years of education.
Preferences Regarding Surrogate Decision Makers*
Patients' Knowledge and Use of Advanced Directives
Each participant was asked "Have you ever talked to anyone about what you would want in medical care if you were terminally ill, say for example, if you had terminal cancer?" A similar question was asked about long-term care. As indicated in Table 1, fewer than half of the participants responded affirmatively to the first question and only 37% had talked about long-term care issues. Not surprisingly, very few (three and two, respectively) had written any instructions on either matter and only a few additional persons (five and two) had considered writing any instructions. Typical of those who had discussed the possibility of a terminal illness was a 75-year-old married woman who said, "I've told both my daughters (and husband). . . not to keep me alive but to pull the plug and let me go. I don't want to stay here if there's nothing here." However, most responded like a 70-year-old married woman: "Well, no I haven't. But I have thought about it. I'm just hoping that it will never happen."
Disturbingly, only 37% of the participants responded affirmatively to the question "Have you ever heard of something called a 'living will'?" By judgment of the interviewers, only five (12%) people understood it. Two people had signed a living will, but only two more were interested in signing one. The lack of interest in a living will, even after a brief explanation, and sometimes outright rejection of it was exemplified by the comments of a 75-year-old married woman: 'T want my family to make the decisions. . . . You don't know what's out there to treat you. You can't tell. My living will may not fit into what needs to be done at the time."
By contrast, 81% (35) of the participants had heard of a power of attorney and most of those (31) understood it. However, only 28% had heard of the use of such proxies for health-care decisions. Five people indicated that they had appointed someone and 10 more indicated that they might wish to appoint a proxy. There was considerably more interest in appointing a proxy than in completing a living will document (35% to 10%) when we combined the responses of those who have used and those who might wish to use the documents. Commented a 78-year-old widow when asked if she would want to appoint someone as a proxy decision maker: "Be my daughters. They'd do anything in the world for me." Rejecting the idea, a 68-yearold married woman said, "No, I guess we're just assuming that our children will come forward and meet those responsibilities." Similarly, a 76-year-old eighth-grade-educated married man commented, "No, I don't want that. I never did think nothing about that." He went on to make it clear that he wanted to rely on his wife and daughter.
Preferences for Surrogate Decision Makers
The participants were asked "Is there someone who knows you well enough that you would trust him or her to make health-care decisions on your behalf in the event you could not make them for yourself?" Responses were followed by probes for explanations and reasons for choices. The participants were later asked, "If you were too sick to make an important decision about your health care, who would you want to make the final decision for you?" As shown in Table 2, elderly hospitalized patients consistently express preferences for family members to serve as surrogates, despite the availability of nurses and doctors.
For both questions 95% (41) of the study group chose relatives. Ten married women chose children, especially their daughters, over their spouses, or they chose children together with spouses primarily because their spouses were older, ill, or disabled. Widowed patients who had children unhesitatingly preferred that their children serve as surrogates, if needed. Married men typically expected their wives to serve as surrogates, as expressed by a 79-year-old man: "If I got down where I couldn't take care of myself [and make decisions], I first would want my wife to do it. She knows it all, and they would have to reckon with her." A 68-year-old married man commented similarly: "Presently it would be my wife. In the long term it would be my sons, if something happens to my wife." A 66-yearold married woman, who has a son and daughter, explained why she preferred her daughter: "My daughter, she can read and all. She is more educated. My husband and son are not educated." A 76-year-old married woman, said: "That would be my daughter because my husband is older [than me]." A 73-year-old widow expressed a preference for her daughter over her son by offering that "My daughter thinks like I do, and she will know what I want done."
One of the characteristics discovered about the choices of surrogates was a pattern of hierarchical ordering. Of the married participants, 63% (15) chose their adult children, some with their spouses, as first order preferred surrogates. In all, 88% (38) had living children. Four participants, including three who were single, had no living children: one chose a spouse; two chose other relatives; one divided the choices on the questions between a lawyer and a doctor. Only one participant, a widow, who had living children opted for another relative, a granddaughter, over her children.
Next in order were spouses. All but one of the married men chose their spouses as surrogates. Siblings, a granddaughter, and nieces completed the order of preferences among family members. There was essentially no interest in choosing friends, doctors, lawyers, and nurses as primary surrogate decision makers. In general, the participants preferred to depend on family members prior to anyone else. A 71-year-old married woman put it just that way: "Family first! But, there are a couple of friends I would trust. Maybe a priest."
More than a third of the participants (16) expressed a proclivity for group decision making. All of them had more than one child. Four had a spouse and expected the children and spouse to make decisions together. In elaborating on preferred decision makers, a 68-year-old married woman remarked, "I have two grown children and my husband is still here and still in charge of all his mental faculties." Or, as an 89-year-old widow put it, '7My three daughters together." When the interviewer asked, "Which one would make the decisions?" she empiratically responded, "They'd make them together. They'd just stick together." While recognizing that one individual may be designated the primary surrogate, some of the participants indicated that they trusted any of their family members. Said an 84year-old widow: "One of my children. I would trust any of my children."
Families will likely remain as the largest group of substitute decision makers with whom nurses of elderly patients have contact.
As exploratory and qualitative, the study attempted to discover themes and generate hypotheses. We anticipated that elderly persons hospitalized under the threat of a serious medical crisis would be receptive to completing advance directives and planning for surrogate decision makers. We further anticipated that elderly patients in an acute care institution might prefer to use health-care professionals to assist them in making decisions. For that reason, we specifically asked whether nurses may be involved in the decisionmaking process.
Our anticipations were not fulfilled even though the findings revealed several significant themes:
* Elderly persons of our sample did not have an urgent interest in completing advance directives. Length of hospital stay, or the reason for it, such as myocardial infarction or surgery, did not increase urgency or interest.
* Despite a serious illness, many elderly persons did not expect or anticipate that decisional incapacity would happen to them. Decisional incapacity was either something that had not been thought about or was avoided ("I don't like to think about things like this") or dismissed as something that would not happen to them personally ("I hope to be able to make my own decisions all my life").
* Procrastination about advance planning for surrogate decision making is widespread. Not only are last wills and testaments victims of things "you just put off," but so are living wills and powers of attorney for health care.
Level of education was clearly a factor concerning the study participants' knowledge of and interest in advance directives and planning for decisional incapacity. More than half of the sample completed less than 9 years of education. Those with high school or college education were more likely to have heard of a living will and appointment of a proxy for health care and were less suspicious of completing such documents for planning. The low level of education may also have affected the actual use of advance directives, but because other studies show a low rate of use nationally ("Many doctors," 1988; Society, 1987; Zweibel, 1988) the margin of difference may be too small to be significant.
The lack of use of advance directives and resistance to planning appears not to be unique to our cohort of participants. Younger and nonhospitalized persons are doing no more plarining. However, it is possible as younger, more educated people age, and public education about advance directives increases, there could be more use of advance directives among elderly hospitalized patients.
Our findings further suggest the hypothesis that elderly people prefer and expect to rely informally on family members to make surrogate healthcare decisions even in the face of actual medical crises. Such a hypothesis is consistent, too, with the views of those participants who flatly rejected the idea of signing a living will or legally appointing a proxy. Suggested also is the hypothesis that the elderly's choices of family members to serve as surrogate decision makers are hierarchically ordered. Generally, elderly patients, if married, prefer their spouse and adult children to make choices for them when the need arises. Children may be placed first on the hierarchy because "they are younger." Or, as one woman put it, "I've made decisions for others and now ifs the next generation's time to do it." Elderly patients clearly place siblings and other relatives lower in the hierarchy of preferred surrogates. Following these exploratory findings, we would further hypothesize that elderly patients prefer to have more than one person involved in surrogate decision making. If more than one adult child is available, many elderly patients would like for all of the children to decide together in consultation with health-care professionals.
Nurses can have a vital role in providing the needed information to patients, especially because the Patient Self-rjetermination Act requires hospitals and nursing homes to advise patients of their rights to refuse or accept treatment and to formulate advance directives. Consequently, nurses should be thoroughly familiar with advance directives as provided by their state laws and should be willing to discuss them with their patients. On the other hand, if other studies of hospitalized elderly patients confirm what our exploratory study suggests, then nurses need to be aware that there is little or no interest in placing surrogate decision making authority in the hands of lawyers, doctors, friends, or nurses themselves. This is already consistent with the findings presented by other studies concerning nonhospitalized elderly patients (Gamble, 1991; High, 1988; 1990). It is further consistent with our findings that in the event a cognitively impaired elderly person does not have a formally executed advance directive, nurses and other health-care professionals should appeal to family members as surrogate decision makers.
The elderly patient's reliance on family for health-care decision making in the event of decisional incapacity is pervasive and will likely persist. Consequently, families will likely remain as the largest group of substitute decision makers with whom nurses of elderly patients have contact. Of course, professionals can and should assist family members to make decisions, but it should never be assumed that the elderly prefer, for example, a medical professional to make decisions for them instead of family. Nurses and other health-care professionals should guard against paternalistic attitudes and practices. Discussion of care decisions, whether with the patient or surrogate, should be clearly informative and without coercion. The nurse can always help to ensure that the best communication possible takes place among surrogates and all health-care professionals.
Documentation of discussions with family surrogates will prove essential. In the event there is disagreement among family members about a decision or a disagreement between a health-care professional and the family, the nurse, even if not involved in the decision directly, can assist in ensuring that the disagreements have not resulted from a lack or a misunderstanding of information. Here, as with other decision making processes, it should be recognized that no formal, adversarial procedure, even with completed advance directives, can take the place of the character and good faith of family surrogate decision makers and the nurse's effective communication and quality patient care.
- Clark, P.G. Individual autonomy, cooperative empowerment, and planning for longterm care decision making. Journal of Aging Studies 1987; 1(1):65-76.
- Cohn, S.D. The living will from the nurse's perspective. Law,Med,Hlth Care 1983; 11(6): 121-124, 136.
- Cruzan v. Director, Missouri Department of Health, 110 S.Ct. 2841 (1990).
- Gamble, E.R., McDonald, P.J., Lichstein, P.R. Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch of Intern Med 1991; 151(2): 277-280.
- Guido, G.W. Legal issues in nursing. Norwalk, CT: Appleton & Lange, 1988.
- High, D.M. All in the family: Extended autonomy and expectations in surrogate health care decision-making. Gerontologist 1988; 28(suppl):46-51.
- High, D.M. Who will make health care decisions for me when I can't? Journal of Aging and Health 1990; 2(3): 291-309.
- Many doctors favor end of life-support gear in some cases. Wall Street Journal, 1988; June 9, pp. 95.
- President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions, vol. 1. Washington, DC: US Government Printing Office, 1982.
- Society for the Right to Die. Supplement to the physician and the hopelessly ill patient. New York: Author, 1988.
- Society for the Right to Die. Newsletter. 1987; Spring:1-8.
- Special Committee on Aging, US Senate. A matter of choice: Planning ahead for health care decisions. Washington, DC: US Government Printing Office, 1987.
- Trandel-Korenchuk, D.M. Patient participation in decision making. Nurse Pract 1982; 7(5):46-52.
- Zweibel, N.R., Cassel, C.K. Treatment choices at the end of life: A comparison of decisions by older patients and their physicianselected proxies. Gerontologist 1988; 29(5): 615-621.
Knowledge and Use of Advance Directives*
Preferences Regarding Surrogate Decision Makers*