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Patient control over dying: Responses of health care professionals
Sm. Sci. Med. Vol. 36, No. 6, pp. 151-165, 1993 Printedin Great Britain.All rightsreserved
0277.9536/93 $6.00 + 0.00 Copyright0 1993 Pergamon Press Ltd
PATIENT
OF
CONTROL OVER DYING: RESPONSES HEALTH CARE PROFESSIONALS MERRIJOY J. KELNER
Department
and
IVY L. BOURGEAULT
of Behavioural Science, University of Toronto, McMurrich Building, Room 12 Queen’s Park Crescent West, Toronto, Ontario, Canada MS.5 IA8
109,
Abstract-Decisions concerning how, when and where patients should die have traditionally been the exclusive domain of health care professionals. More recently, patients and their families are demanding increasing control over these decisions. This paper reports on the responses of 20 physicians and 20 nurses in a major teaching hospital regarding the desire of patients to exert more control over the circumstances of their dying. The findings, based on in-depth, semi-structured interviews, suggest that while health care professionals are generally in favour of the principle of patient control over dying, they have reservations about accommodating patients’ wishes in actual clinical situations. Key factors that underly their ambivalence on this point are: (1) specific patient circumstances, such as age, severity of illness and mental competence; (2) moral and legal concerns; and (3) the type of intervention requested by patient. The results indicate that patient control over dying represents a challenge to the clinical judgement of health care professionals; that it runs counter to their perception of their role as healers and supporters; that it raises crucial concerns about their personal ethics and legal liability and that it poses a challenge to their professional autonomy and power. It is likely that health care practitioners will increasingly be pressured to concede their autonomy and enter into a partnership with patients in the decision-making process. Key
words--health
care professionals,
dying,
patient
INTRODUCTION
Decisions concerning how, when and where patients should die have in recent decades been the exclusive domain of health care professionals. Today, however, patients and their families are demanding increasing control over their health care and their ultimate destinies. This desire for more control reflects the pervasive trend in Western society toward individual autonomy. Charmaz [l] claims that this emphasis on control of personal existence “pervades American life.” The rapid development of technology, however, has threatened peoples’ sense of control. Social critics refer to the inability of the average citizen to influence technology, and the resulting sense of powerlessness [2]. For example, in the case of terminally ill patients, new technologies have made it possible to sustain life longer than before, but patients often have little part in the decision to initiate these complex treatments. One of the most striking manifestations of patients’ desire for control has been termed the “revolt of the client” by Haug and Sussman [3]. This challenge has been addressed to the medical profession in particular, by a number of scholars including Haug and Lavin [4] in the United States, and Coburn, Torrance and Kaufert [S] in Canada. On the basis of a survey in the United States in 1980, Haug and Lavin conclude that patient consumerism is increasingly becoming the accepted stance. The authority of the medical profession to make decisions for others on the basis of specialized knowledge is being challenged by a more educated and more egalitarian society. The
control,
decision-making
esteem in which physicians were previously held appears to be diminishing as patients become more alienated from the medical care system [6]. The growing sophistication of the public and the strong influence of the media in popularizing and disseminating medical information have made patients more demanding and more willing to question who should control decisions about their health care [7]. In Canada, medicine has also surrendered some of it’s control over the provision of health care [5]. The public health insurance programs introduced in the late 1950s and 1960s served to transfer financial control of medical services to government, with subsequent limitations on the profession’s ability to govern it’s income levels, the number of hospital beds available, and the allocation of medical technology [8]. At the clinical level, public pressure for greater involvement in decision-making about health care is also having an impact on medical dominance. For example, a recent court decision in Ontario ruled that physicians must not give blood transfusions to unconscious patients who carry a card indicating that they are Jehovah’s Witnesses and therefore reject blood transfusions tinder any circumstances [9]. These changes in the relationship between health care professionals and their patients, while evident, are nevertheless occurring slowly. Haug and Lavin [4] found that physicians seemed reluctant to accommodate to patient preferences in treatment. They found that the majority of physicians studied, especially those who were older, would assert the dominance of their expertise when faced with patient challenges, or resort to persuasion on the basis of their esoteric
758
MERRIJ~YJ. KELNERand
knowledge. It appears that while patients‘ rights to control decisions about their clinical care, and particularly about the circumstances of their dying are receiving increased attention, the issue is far from resolved. A number of reasons have been advanced for the growing concern with the dying process. The explosive advances in biomedical technology since the !92Os have increasingly made dying a matter that requires deliberate decisions [IO]. For almost any life-threatening condition, some medical intervention can now delay dying. The problem is that for many, the life that is prolonged by such interventions may not be the kind of life they would choose. The causes of death have also changed strikingly: communicable diseases have declined dramatically and chronic diseases now predominate. These chronic illnesses, such as heart disease and cancer, tend to occur later in life and are usually progressive for some years before the patient dies. Patients facing death are now more likely to be older, with the important exception of AIDS, and to suffer from illnesses for which therapeutic interventions are available [I I]. Health care professionals are trained to use the technologies that arc available to them. even when the consequences for patients may be painful. debilitating and even dehumanizing. People also die in hospitals more often. One estimate is that 80% of the deaths in the United States take place in hospitals and long-term care institutions [12]. The result is that terminally ill patients have little privacy and often little choice regarding the circumstances of their dying. Death has become bureaucratized, as described by Blauner 1131; the dying process has been subjugated to the hospital’s requirements. Recent studies indicate that most patients want to have an influence on decisions concerning the circumstances of their dying [14-161. Health care professionals are being confronted with new dilemmas in trying to accommodate patients wishes for self-determination during the dying process. and are responding in a variety of ways to this challenge [ 171. In particular, it is the desire of patients to forego life-sustaining treatments that is seen as most problematic by many health care professionals in North America [ 18--221. Many patients are worried about loss of control regarding their dying, and their fears can cause conflicts between health care professionals and patients or their families. Physicians and nurses are finding it difficult to cope with the complex medical, legal and ethical issues involved in utilizing the new technologies that enhance the capacity to sustain life [23]. In addition. the need to curtail spending on health care has prompted questions about the wisdom of keeping patients alive when they no longer wish to have their lives prolonged [24]. Few guidelines and no real agreement exist to guide health care professionals as they strive to respond to
IVY L. BOURGEALJLT
the growing desire of patients over their own dying.
to have more control
Purpose
This paper is the first in a series of reports on a study which examined the responses of physicians and nurses to patients’ desire for control over the dying process. The goal of the study was to identify key factors that influence the knowledge, attitudes and behaviour of health care professionals concerning this issue. The focus of this first paper is specifically on: (1) the reactions of physicians and nurses in a major teaching hospital to the general principle of patient control over dying; (2) the main factors that affect their adherence to this principle in practice; and (3) who they believe should have the final authority for deciding whether to prolong the lives of terminally ill patients. In the study described here, the concept of patient control includes the notions of patient autonomy, empowerment and self-determination. It means that patients have a choice concerning the nature and goals of the treatments they receive from health care professionals. In particular, it means that patients can choose whether they wish to be aggressively treated in order to prolong their lives, or wish to terminate life-sustaining therapies and allow their lives to end sooner than they might otherwise do. The findings to be discussed, while limited in scope, will reveal some of the critical dimensions of health care professional’s responses to the desire of patients to exert control over the circumstances of their dying. Favourable responses will augur well for the growing momentum from patients. If acceptance of patient’s wishes for control is qualified or not indicated, the findings will help to delineate the barriers to professional co-operation. These barriers can then begin to be addressed. METHODS
A purposive sample was used as a basis for establishing patterns of knowledge, attitudes and behaviour. The sample was drawn from 4 distinct clinical specialities in order to reflect the differing perspectives occasioned by different practice contexts. Respondents included 5 physicians and 5 nurses from each of: family and community medicine, oncology. intensive care and geriatric care. These particular specialties were selected because they represent different kinds of clinical settings and thus permit comparative analysis. Intensive care, for example, provides few opportunities for considered decisionmaking, whereas geriatric care affords patients and health care professionals a longer period in which to deliberate their choices regarding the dying process. Oncology often introduces the elements of severe pain and imminent death, whereas family and community medicine is not typically faced with these pressures.
Patient control over dying In-depth, semi-structured interviews were conducted in person by the principal author with a sample of 20 physicians and 20 nurses at a large teaching hospital in Toronto, Canada in the summer of 1991. The interviews averaged about 45 min and included questions concerning physicians’ and nurses’ general thoughts about patient control over dying; their knowledge of specific issues of patient control; their beliefs regarding what they ought to do in response to patient’s wishes for control; and what they actually do in clinical situations when this issue arises. Any respondents who had not actually encountered such situations in their work were asked to imagine how they would likely respond. While interviews followed a structured guide, several questions permitted spontaneous expressions of opinion and recounting of relevant experiences. The questions posed to the nurses and physicians in this study were based on the assumption that they related to patients who were terminally ill. The precise meaning of this term is not clear, however. Definitions vary regarding the length of life-expectancy, the rate at which a person is dying and the signs and symptoms they display. Thus, the term ‘terminally ill’ implies a subjective impression or opinion, rather than a statement of fact [25]. The interviews were tape-recorded and summary notes of the health care professionals’ responses were also taken. The taped interviews were transcribed and entered verbatim into a computer for coding. Various qualitative data analysis procedures, such as content analysis and concept saturation, were used to code and group the health care professionals’ responses into key concepts in the mode of grounded theory as delineated by Glaser and Strauss [26]. Some of the coded data were also analysed with descriptive statistics including frequency- and cross-tabulations. Given the small size of the sample and the nonrandom nature of the strategy for attaining this sample, caution must be taken in attempting to generalize the distribution or frequency of the responses of these health care professionals to others. The properties and the concepts resulting from this analysis, however, should be regarded as transferable, in the sense that it is likely that other health care professionals in other hospitals in North America will also identify similar concepts. Furthermore, the richness of this type of data can yield fruitful insights into the complex issues underlying responses of health care professionals to the current demands of patients to exert more control over dying. FINDINGS
Respondents The characteristics of the 20 physicians and 20 nurses interviewed for this study are depicted in Table 1. The figures indicate that this group of health care professionals were fairly evenly distributed between the categories of both age and years of practice,
159
Table I. Characteristics
of respondents
by profession
Physicians
NUWZS
0 (0%) a (40%) 1(35%) 4 (20%) I (5%)
7 (35%) 3 (15%) 6 (30%) 4 (20%) 0 (0%)
13 (65%) 7 (35%)
0 (0%) 20 (loo%)
Years in practice CL-5 6-10 11-15 It&25 26-t
5 (25%) 5 (25%) 4 (20%) 2 (10%) 4 (20%)
1(35%) I (5%) 3 (15%) 5 (25%) 4 (20%)
Religion Catholic Protestant Jewish Agnostic Other
5 (25%) 8 (40%) 3 (15%) 3 (15%) 1 (5%)
6 (30%) 13 (65%) 0 (0%) I (5%) 0 (0%)
6 (30%) 4 (20%) 10 (50%)
5 (25%) 3(15%) 12 (60%)
N = 20
N = 20
Age 20-29 30-39 4&49 50-59 60+
sex Male Female
Religiosity Not at all Somewhat Very Total
although only nurses appear in the youngest category. This reflects the longer training period required of physicians. The nurses were predominantly Catholic or Protestant, with only one agnostic. The physicians, however, include some Jewish respondents as well as several who describe themselves as agnostic or atheist. In addition to their formal religious affiliation, respondents were also asked whether they considered themselves to be religious. ‘Religious’ in this context was defined as the degree to which religious principles guided their actions. A majority of the nurses (n = 12) and half the physicians (n = 10) said that they regarded themselves as religious in these terms. These proportions seem high in a society that appears to be becoming increasingly secular, but they should be understood in terms of the specific definition respondents were given when asked whether they regarded themselves as “a religious person” (i.e. a person whose actions are guided by religious/moral principles). While the nurse sample is completely female, it is worth noting that the physician sample is 35% female, which is considerably higher than the proportion of women currently in practice in Canada 1271. The Principle of Patient Control At the beginning of the interviews, physicians and nurses in the study were asked to indicate their personal views on the general principle of patient control over the dying process. While most of them focused on the wishes of patients to forego lifesustaining therapies, a few also interpreted patient control as the desire of some patients for aggressive measures to prolong life.
MEKRII~Y J. KELNER and
760
All but one of the physicians and all of the nurses said they believed in the principle that patients should control the circumstances of their own dying. Several said they saw this control as one aspect of a larger movement of patients to assume a key role in their medical
care.
In the words
of one
specializing
in geriatrics
I see it in the same light as patient (P6). Nurses that
were
patients
example,
particularly should
a nurse
control
concurred:
autonomy
positive their
in geriatrics
in all respects.
about own
the dying.
idea For
noted:
Far too often the profession dictates to them. Doctors and nurses have been trained to heal and death is a slap in the face to them. Patients should have more control over their own fate. (NIQ. Another
nurse
in intensive
care
commented:
They should have a say in the way they want their death managed. They know when the effort to live is simply too
much. (N14). Physicians tended to express their approval measured terms. For example, one physician sive care said:
in more in inten-
A lot are caught in a crisis of wanting control, but they need help and someone else to tell them what they should be doing. (PZ). A physician in family practice overseas for some years said:
L.
BOURGEAULT
the effects of gender seem to be less influential than the effects of professional socialization on this particular issue. Factors Aflecting
oncologist:
This is an evolution in medical care and our medical culture; it’s going toward more of a joint decision making. This is just one manifestation of it. (P9).
A physician
IVY
who
had
worked
It’s an extremely culture bound discussion: each culture varies in it’s standards of what is appropriate. (P4). Health care professionals’ overall views of patient control over dying did not differ significantly by the age, years of practice or gender of the respondent. There was, however, a trend in terms of medical speciality across both nursing and medicine. All 10 physicians and nurses in intensive care were unconditionally in favour of patient control as well as 8 of those in geriatrics and 6 in family practice. Those in oncology expressed more reservations in that 6 of the 10 were only conditionally in favour. Perhaps these differences are due to the reality that health care professionals in oncology, more often than the other specialities in this study, confront patients who tend to be in extreme pain and want an end to it. At the other end of the spectrum, physicians and nurses working in intensive care must make very fast decisions concerning whether or not to continue trying to sustain patient’s lives. It may be that they are grateful, in these circumstances. for any guidance they can get from patients or their families on how to proceed. Again, caution should be taken in generalizing from these small differences. It is interesting to note that the responses of female physicians and male physicians did not differ. Thus,
Professional’s Control
Views of Patient
The support expressed by health care professionals for the general principle of patient control over dying was not, however, unqualified. Many respondents expressed reservations about when it was appropriate to accede to patient’s wishes in this respect, and when it was not. In other words, they qualified their general approval by mentioning several key factors that would lead them to reconsider. These factors can be grouped into 3 main categories: (1) patient circumstances; (2) professionals’ moral scruples and legal concerns; and (3) the type of intervention patients might request. (I) Patient circumstances The physicians and nurses in the study identified a number of patient circumstances that affected the extent of the support they were prepared to give to patient control over dying. Among the most frequently mentioned were: access to information; stage of illness; mental competence; age of patient; consistency of requests; and severity of patient’s illness. (a) Leael qf comprehension. A number of health care professionals were concerned that patients might not possess and fully comprehend all the information required to make an informed choice. Some said they would have to be certain that the patient had been provided with “adequate” information and advice. If this were not the case, they said they would not find it acceptable to automatically follow a patient’s wishes. Instead, they favoured a model of “mutual decision-making” between professionals and patients rather than patient control. As one of the oncologists said:
1 have no problem with it whatsoever. provided the patient has a legitimate and reulisric appreciation of what it is they’re going through. (P12). Another
physician
in geriatrics
put
I think that the physician must explain prognosis and recommend the operative patient must agree or disagree. (Pl 1). A nurse Patients
in geriatrics
concurred
it this
way:
the diagnosis and treatment and the
that:
and families need to know what the srtuation
is [in
order] to have some control over it. (N18). These qualifications reflect health care professionals’ concerns that medical care should be given in the way they believe is best for the patient. Terms like ‘adequate’, ‘legitimate’ and ‘realistic’ imply subjuctive judgements about the nature of treatments. Respondents’ comments imply that they believe these kinds of judgements are best made by health care professionals.
Patient control over dying It is important to note here that many of the physicians and nurses in this study expressed a high degree of concern for the welfare of their patients. Their commitment to the best interests of their patients was obvious; this commitment, however, was framed within their own professional perspective. (b) Stage of the illness. Respondents believed that patient control should be established early-ideally before the patient becomes terminally ill. They recommended that discussions about the dying process be initiated with patients during routine office visits. An oncologist said: We should begin these discussions at an early stage-Not discussing death doesn’t help. (P2).
When physicians were asked, however, whether they routinely discussed control of dying with elderly or very ill patients, only about half said they did. The same oncologist quoted above admitted: It’s hard to find the right time. (P2). Thus, the correct time for patients to express the wish to control their dying appears to relate more to the health care professional’s timetable than to the patient’s need to exert control. (c) Mental competence. Respondents believed that it was central to patient control that the patient be judged mentally competent (i.e. in sound mind and capable of rational thinking). These health care professionals made it clear that this was an essential element of their perspective on this subject. As one family practitioner said: Patients have the right to control their own destiny-if they are mentally competent to make that decision. (P5). Others were concerned that a patient might be in a state of depression, and thus unable to make a rational decision. A physician in geriatrics remarked: It takes a lot of careful work to ascertain whether they’re just depressed. The wish to die is a complex issue. (PIO). Respondents seemed to assume that their of an individual’s competence or state of should constitute the deciding factor. (d) Age of patient. Age was a factor in the extent of the control that could and exercised. Several respondents mentioned was an important consideration for them. practioner said: Age makes a difference younger
A nurse
patients.
here.
We often
estimation depression influencing should be that age One family
try harder
with
(P8).
in family
practice
commented:
If they are old and sick, well, we all have to die sometime. (N3). It seemed easier for these health care professionals to accept the notion of patient control over dying in the case of older patients who had already lived full lives than it was with young people who still had potentially long lives ahead of them. This greater concern for the future of young patients reflects the curative
761
emphasis in the undergraduate programs of most health care professionals. (e) Consistency of requests. Both doctors and nurses said they would be reluctant to honour patient’s requests to refuse life-sustaining therapies if they were not consistent. They emphasized that patients can change their minds when they come close to dying and that the wishes they have indicated earlier, either orally or in a written directive, may not be what they want later on. A physician in geriatrics reported a case in which a patient who had previously requested that no aggressive measures be used “changed her mind after she was given more information.” (P20). The possibility that a patient will change his or her mind makes these care givers distinctly uncomfortable. They run the risk of misinterpreting what it is the patient really wants. This can lead to accusations or even legal actions from families or patients who charge that their wishes were ignored. (f) Severity of patient’s illness. Also important in health care professional’s response to patients’ wishes for control was severity of illness. When a patient seems close to death and further treatment appears futile, most of the respondents agreed that it was easier to accede to requests that aggressive measures be discontinued. One family practitioner put it this way: When a patient is dying and knows they’re dying, I ask them what they’d like to do. (Pl).
A nurse
in family
practice
said:
If it’s something where the end result is terminal and everything that is possible has been done, then I think the
patient should be allowed to be comfortable if that’s what they want. (N2). Once again, these respondents do not question that their assessments of what constitutes a “terminal illness” may be different from the judgements made by their patients. (2) Moral scruples and legal concerns A second set of limiting factors for health care professionals who are requested by patients or their families to cease all life-prolonging therapies are their moral scruples and legal concerns. (a) Moral scruples. A majority of nurses and doctors expressed uneasiness about co-operating with patients who want active treatment stopped, and many indicated their unwillingness to accede to a patient’s request if it violated their own personal moral or ethical codes. One of the family practitioners put it like this: I have to live with myself and I won’t go against my moral code. If a patient wants something that’s against my code of ethics then I will have them see someone else. (P5). Several measures
nurses which
indicated might
ask to be transferred request contravenes
that
if a patient
asked
for
end his or her life, they would
to another case. If a patients’ their personal moral scruples,
162
MERIUJOY J. KELNER and
most nurses said they would refuse to follow that patient’s wishes. As in the case of abortion, another morally sensitive issue, health care professionals are not prepared to violate their own sense of what is ‘right’, in order to accommodate a patient who wishes to control the circumstances of their dying. (b) Legal concerns. Along with personal moral and ethical scruples, respondents also expressed concern about the legality of co-operating with certain kinds of patient requests. When a patient refuses lifesustaining treatment. health care professionals may not feel able to honour the patient’s request due to worries that the legal system will not protect them. As one oncologist put it: The law doesn’t support people who terminate life in our current setting. There’s a very fine distinction.. and it depends on what the person feels the physician is doing. (P2).
This same physician
further
commented
that:
It’s a mine field that people are getting into and I don’t know that any of us know where it’s going to go. (P2). in oncology
A nurse
IVY
L. BOURGEAULT
Many nurses practice said: They should only. (N4).
agreed.
have the right
to request
one in family passive
euthanasia
Almost all the respondents in this study indicated that they would refuse to follow a patient’s wish for an active intervention to hasten their death. They were unwilling or unable to contemplate any form of active euthanasia or physician-assisted suicide. A few physicians focused on the other side of the issue: a patient’s wish that aggressive measures be used to prolong their life even when death seems imminent. As one physician in geriatrics asked: Should patients have the right to demand overly aggressive measures in an era of scarcity?. rationing may be defensible here. (P6).
Another in oncology said if a patient insisted on aggressive treatment “I’d find another physician to take over the case” (P12). Nurses in the study did not raise these issues of resource allocation, perhaps because they are not likely to be held accountable for use of ‘futile’ measures. Final Authority-
This nurse was involved in a case at the time of the interview in which a woman with cancer was in great and seemingly intractable pain. She explained: It’s not her cancer that’s killing her; she months to a year. But she wants to die wants her to die. No one in the hospital responsibility for helping her die because tion for us. It’s very hard. (N7).
could live for six and her husband is willing to take there’s no protec-
Thus, for these health care professionals, personal moral scruples and concerns regarding the legal implications of patient control over the dying process were important factors influencing their attitudes and behaviour. (3) Type of intervention Most physicians and nurses were careful to differentiate between patient control over decisions to withhold or withdraw treatment (often referred to as passive euthanasia) on the one hand, and decisions to end life through an active intervention of some kind (usually regarded as active euthanasia) on the other hand. One physician in intensive care said: I wouldn’t prolong life but I wouldn’t Another
example,
said:
I’d only be comfortable [following a patient’s wishes] if it were legally binding; otherwise we’re not covered or backed up. (N7).
patient
For
[who wants
me] to hasten
physician
in geriatrics
co-operate with a their death. (P19). echoed
this
view:
It’s appropriate for patients to indicate their wishes regarding-withdrawing of therapy or comfort care. But when it comes to active euthanasia I have real trouble. That’s not the role of a physician. (P9).
Who has the Last
Word?
In keeping with their general, overall endorsement of patient control of the dying process, a majority of physicians (14) and half of the nurses (10) said they believed that the final authority to make decisions regarding prolongation of terminally ill patients’ lives belongs to the patient alone. During the course of the interview, however, several respondents acknowledged that they had some ambivalence concerning who had the final authority to make decisions. Some indicated that they were aware that the socially acceptable answer is: “It is the patient alone who should decide,” but they did not always agree. A physician in intensive care put it this way: This is the dogma, demands. (P17).
but the patient
can’t make ‘ridiculous’
A nurse in family practice
said:
I agree patients
their dying, but in some ways
should control
it may just be the popular thing to do. (NI). These types of statements suggest that not all professionals have come to terms with the loss of clinical discretion implied in the principle of patient control. (I) Team decisions Nurses were somewhat more comfortable than physicians with the team approach to decisionmaking. This was reflected not only in the fact that team decision-making was mentioned more often by nurses (9) than by physicians (6), but also in the nature of the comments these nurses made. As one nurse in family practice put it: It’s unfair (N3.
for one person
to have this responsibility
alone.
Patient control over dying They said that even if the patient ultimately makes the final choice, it is important for others to have input into that decision. This perhaps reflects the nurses’ lesser power and greater comfort in sharing responsibility. Nurses liked ward conferences that include the patient, the family and a range of health care practitioners such as social workers, ethicists, psychologists as well as physicians and nurses. This strategy is much more common on geriatric wards where the staff know the patients well and have time to work out these issues than it is in intensive care units where decisions must often be made quickly concerning the fate of patients whose history and wishes are not known to the staff. A few physicians pointed out that it is not always possible to carry out patient’s wishes. In particular, they mentioned those instances where there is ‘no time’ to inform patients of their options, and where professionals must make decisions on the patient’s behalf. In such cases, they said, it is best to have a team decision. The team strategy thus appeared to permit a sharing of the burden of responsibility among health care professionals when they were uncertain about what the patient would want, or when there was disagreement between professional’s views and patients’ views regarding the best course of action. (2) In cases of disagreement The issue of who should have the final word becomes crucial when disagreements emerge between patients (or their families) and health care professionals. When asked about how they deal with such cases, many of the respondents (7 nurses and 11 physicians) said they would follow patients’ wishes. More of the respondents (14 nurses and 9 physicians) said they would try to seek a compromise through persuasion and provision of more relevant information. This kind of “persuasion” would be difficult for patients to resist, backed as it is by the clinical expertise of health care professionals. Still others indicated reluctance to accede automatically to patient’s (or family’s) wishes if they did not agree on the measures that should be taken and said they would “do as they see best” (3 physicians and 2 nurses). A few respondents said they would request removal from the case. Others said they would seek another opinion (7 physicians and 2 nurses). It seems clear that health care professionals are hesitant to completely relinquish final authority over whether or not to forego life-prolonging measures. A related question was addressed specifically to nurses. This time the conflict over decision-making was between the patient who wished to end lifesustaining efforts and the family who resisted. Nurses were asked to indicate how they respond to these situations. Many said they were familiar with this type of conflict and that it occurs frequently. Most of the nurses in the sample said they believe that the patient’s wishes should be paramount in such cases,
163
although half of them added that they would work hard to achieve a compromise. As one in intensive care said: Usually the family wants to keep them alive when the prognosis is poor. I try to explain the situation to them so they can see the real picture. (N6). A few pointed out that it is basically the physician’s responsibility to resolve conflicts of this kind. Only one nurse, who was in oncology, felt that the family’s wishes should take precedence over the patient’s, She said: Sometimes families are bitter afterwards and could bring charges. (N 12). This analysis of views concerning who should have the final word suggests that when faced with concrete situations, health care professionals often moderate their support for the general principle of patient control. In specific clinical situations, they tend to trust their professional judgement over the wishes of the patient. DISCUSSION
Physicians’ and nurses’ responses to the issue of patient control of dying have been shown to be varied, and influenced by a number of factors, including their medical speciality, the specific patient circumstances, their personal moral scruples, legal concerns and the exact type of intervention requested by patients. Underlying their expressions of ambivalence and the qualifications they presented to accepting the principle of patient control lie some critical themes. The first theme that emerges clearly is that patient control represents a challenge to their clinical judgement. They are reluctant to give up the right to use their clinical discretion in the face of a patient’s wish to make the final decision about their own fate. Their professional training emphasizes the obligation to use their skills in the best interests of the patient [28,29]. Good medical care has been based on consideration of each patients’ unique circumstances. The range of patient circumstances identified by these health care professionals were seen as important to their clinical decisions. Health care professionals who want to honour patient’s wishes may have to face the prospect of relinquishing this aspect of their professional identity. A second theme stems from respondents’ views on the type of intervention they would be willing to agree to. At issue is health care professionals’ perception of their role as healer/supporter. The whole thrust of their socialization as caregivers emphasizes the obligation to use whatever technology is available to care for the sick. When patients request that lives be terminated, it almost seems to be an affront to their core task of healing and comforting; in other words, a failure [30]. Respondents made it clear that they see their professional role as supportive of life.
MEKKIJOY J. KELNER and
764
4 third theme applies particularly to physicians whose responses indicated that they feel a challenge to their prqftissional autonomy and poir’er. Physicians have enjoyed a position of respect and dominance over patients in the past. To share this power with patients requires a major shift in attitudes and bchaviour; one which physicians may have difficult) making. Although some respondents appeared to be accommodating to changing societal expectations, there was still reluctance to surrender their clinical autonomy. This was particularly evident in respondents’ comments concerning who should have the final authority to make decisions about the circumstances of a patient’s death. The fourth theme underlying many of the remarks made by respondents relates to concerns about their personal ethics und the potential fiv legal liubilit~~.This theme includes both a moral dimension and concrete legal implications. Respondents made it clear that they would not surrender their own moral code to the pressures of patients. They need to retain their ethical standards and also to protect themselves from potential legal problems. On a number of occasions. both physicians and nurses commented on the risks involved if they were to follow the desire of a patient to shorten or terminate his or her life. In an increasingly litigious society. it is not surprising that health care professionals should be sensitive to the need to practice medicine in a ‘defensive’ manner. If this concern is to be reduced. safeguards will have to be developed that will protect professionals who want to accede to patient’s wishes for control. Health care professionals may react more positively when there is greater clarity about this issue and more guidance from legal precedents. A recent example of this kind of precedent has been provided by the Nancy B. ruling in Quebec. In this case, Nancy B.. a patient suflering from a debilitating neurological disorder that left her paralysed, won the right to have doctors disconnect her respirator. The judge who made the ruling said, “a doctor should not be held liable and accused of careless conduct and criminal negligence for respecting the patient’s right to self determination” [31]. CONCLUSION
Health care professionals are struggling to adapt to the growing demands of patients for more control over decisions and more choice about how and when they will die. They are trying to respond in what they perceive as a responsible manner to the consumer movement in health, of which control over dying is but one aspect. This requires that they concede some of their autonomy, and enter into a partnership with patients in the decision-making process. It means that those with power must agree to share it with those they treat, and surrender certain established rights and responsibilities. The advantage to professionals in this sharing of control is that they no longer bear
IVY L. BOURGEAIXI
the full burden of responsibility for decision-making. They also have the benefit of the patient’s insights and experience. The disadvantage is that they have been trained to rely on their own interpretation of the facts. to take control of clinical situations and to intervene when and how they think it is warranted. It may bc useful to think of the power relationships between health care professionals and patients in the form of a continuum, with the perfectly autonomous patient at one extreme, the all-powerful professional at the other extreme, and a range of shared decisionmaking in the middle. It is this middle range of the continuum that patients are seeking to expand. A degree of tension between the interests of health care professionals who want to practice medicine as they think best, and the emergent consumer movement in health care seems inevitable. It is not likely that such a shift in the norms of practitioner-patient relationships will be accomplished quickly. Nevertheless, in spite of the difficulties in moving toward shared decision-making or a partnership mode of care. we can already observe certain changes. One of the most striking shifts has taken place in patient control of the birthing process. This phenomenon, situated at the opposite end of the life-cycle to the one examined here, suggests that professionals are able to accommodate to the desire of patients to exercise more control over decisions about their own health care. They have made significant changes in the experience of childbirth, in response to the wishes of parents for more direct involvement. In the area of patient control over dying, indications of change are also evident. The Ontario Medical Association. for example, has recently issued guidelines on caring for terminally ill patients which recommend that physicians “incorporate systematically the patient’sifamily’s ideas, feelings, and expectations into long-term clinical decision-making” [32]. As the public in general and patients in particular, continue to press for more control of the dying process. health care professionals may have difficulty in relinquishing this traditional area of their decisionmaking. Nevertheless, new policies and guidelines are currently being developed which will serve to promote a sharing of control and responsibility. New patterns of interaction in the clinical context will have to be negotiated. dc,knoM,/r~Kemmr.F--The research on which this study is based was supported by a grant from the Penta Stolp Foundation. The authors wish to acknowledge the assistance of Dr P. C. Hebert, Dr E. V. Dunn and A. K. Marshall R.N. in the design and execution of the research. The authors also wish to acknowledge the helpful comments made by colleagues on an earlier draft. These include: Dr’s B. Wigdor, K. Yoshida. C. Rosenthal and B. Wellman.
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S. C. Blaming Technology: The Irrational Scapegoats. St Martin’s Press, New York,
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1981. autonomy 3. Haug M. and Sussman M. B. Professional and the revolt of the client. Sot. Probl. 17, 153%161, 1969.
B. Consumerism in Medicine: Authority. Sage Publications, Beverley Hills, California, 1983. 5. Coburn D.. Torrance G. M. and Kaufert J. M. Medical dominance in Canada in historical perspective: The rise and fall of medicine? ht. J. Hlth Sero. 13, 407432, 1983. 6. Twaddle A. C. and Hessler R. M. A Sociology ofHealth. MacMillan, New York, 1987. L. Changing doctor-patient 7. Betz M. and O’Connell relationships and the rise in concern for accountability.
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8. Stevenson H. M. and Williams A. P. Phvsicians and medicare: Professional ideology and Canadian health care policy. In Sociology of Health Care in Canada (Edited by Bolaria B. S. and Dickinson H. D.). Harcourt Brace Jovanovich, Toronto, 1988. 9. Malette vs Shulman. 72 OR (2d) 417 (Ont CA), 1990. for the Study of Ethical Prob10. President’s Commission lems in Medicine and Biomedical and Behavioural Research. Deciding to Forego Life-sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Government Printing Office,
Washington, DC, 1983. 11. Marshall V. W. Last Chapters: A Sociolog.y ofAging and Dying. Brooks Cole Publishing, Monterey, California, 1980. 12. Flynn A. and Stewart D. E. Where do cancer patients die: A review of cancer deaths in Cuyahoga County, Ohio, 1957.-1974. J. Comma&y Hlfh 5, (2), 126&130, 1979.
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15. Zweibel N. R. and Cassel C. K. Treatment choices at the end of life: A comparison of decisions by older patients and their physician-selected proxies, Geronlologisr 29, 615621, 1989.
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16. Molloy D. W. and Guyatt G. H. A comprehensive health care directive in a home for the aged. Can. Med. Ass. J. 145, 3077311, 1991. 17. Uhlman R. F.. Pearlman R. A. and Cain K. C. Understanding of elderly patients’ resuscitation preferences by physicians and nurses. Wesfern J. Med. 150, 705-707, 1989. It’s over Debbie. J. Am. Med. Ass. 259, 18. Anonymous. 272, 1988. 19. Gaylin W., Kass L. R.. Pelligrino E. D. and Siegler M. Doctors must not kill. J. Am. Med. Ass. 259,2139~2140, 1988. 20. Kass L. R. Neither for love nor money: Why doctors must not kill. Public Interest 94, 2546, 1989. 21. Quill T. E. Death and dignity: A case of individualized decision making. N. Engf. J. Med. 324, 691694, 1991. 22. Vaux K. L. Debbie’s dying: Mercy killing and the good death. J. Am. Med. Ass. 259, 214@2141, 1988. 23. Crane D. The Sanctity of Social Life: Physicians’ Treat menf of Critically Ill Patients. Russell Sage Foundation, New York, 1975. 24. Sprung C. L. Changing attitudes and practices in foregoing life-sustaining treatments. J. Am. Med. Ass. 263, 221 I-2215,
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0277.9536/93 $6.00 + 0.00 Copyright0 1993 Pergamon Press Ltd
PATIENT
OF
CONTROL OVER DYING: RESPONSES HEALTH CARE PROFESSIONALS MERRIJOY J. KELNER
Department
and
IVY L. BOURGEAULT
of Behavioural Science, University of Toronto, McMurrich Building, Room 12 Queen’s Park Crescent West, Toronto, Ontario, Canada MS.5 IA8
109,
Abstract-Decisions concerning how, when and where patients should die have traditionally been the exclusive domain of health care professionals. More recently, patients and their families are demanding increasing control over these decisions. This paper reports on the responses of 20 physicians and 20 nurses in a major teaching hospital regarding the desire of patients to exert more control over the circumstances of their dying. The findings, based on in-depth, semi-structured interviews, suggest that while health care professionals are generally in favour of the principle of patient control over dying, they have reservations about accommodating patients’ wishes in actual clinical situations. Key factors that underly their ambivalence on this point are: (1) specific patient circumstances, such as age, severity of illness and mental competence; (2) moral and legal concerns; and (3) the type of intervention requested by patient. The results indicate that patient control over dying represents a challenge to the clinical judgement of health care professionals; that it runs counter to their perception of their role as healers and supporters; that it raises crucial concerns about their personal ethics and legal liability and that it poses a challenge to their professional autonomy and power. It is likely that health care practitioners will increasingly be pressured to concede their autonomy and enter into a partnership with patients in the decision-making process. Key
words--health
care professionals,
dying,
patient
INTRODUCTION
Decisions concerning how, when and where patients should die have in recent decades been the exclusive domain of health care professionals. Today, however, patients and their families are demanding increasing control over their health care and their ultimate destinies. This desire for more control reflects the pervasive trend in Western society toward individual autonomy. Charmaz [l] claims that this emphasis on control of personal existence “pervades American life.” The rapid development of technology, however, has threatened peoples’ sense of control. Social critics refer to the inability of the average citizen to influence technology, and the resulting sense of powerlessness [2]. For example, in the case of terminally ill patients, new technologies have made it possible to sustain life longer than before, but patients often have little part in the decision to initiate these complex treatments. One of the most striking manifestations of patients’ desire for control has been termed the “revolt of the client” by Haug and Sussman [3]. This challenge has been addressed to the medical profession in particular, by a number of scholars including Haug and Lavin [4] in the United States, and Coburn, Torrance and Kaufert [S] in Canada. On the basis of a survey in the United States in 1980, Haug and Lavin conclude that patient consumerism is increasingly becoming the accepted stance. The authority of the medical profession to make decisions for others on the basis of specialized knowledge is being challenged by a more educated and more egalitarian society. The
control,
decision-making
esteem in which physicians were previously held appears to be diminishing as patients become more alienated from the medical care system [6]. The growing sophistication of the public and the strong influence of the media in popularizing and disseminating medical information have made patients more demanding and more willing to question who should control decisions about their health care [7]. In Canada, medicine has also surrendered some of it’s control over the provision of health care [5]. The public health insurance programs introduced in the late 1950s and 1960s served to transfer financial control of medical services to government, with subsequent limitations on the profession’s ability to govern it’s income levels, the number of hospital beds available, and the allocation of medical technology [8]. At the clinical level, public pressure for greater involvement in decision-making about health care is also having an impact on medical dominance. For example, a recent court decision in Ontario ruled that physicians must not give blood transfusions to unconscious patients who carry a card indicating that they are Jehovah’s Witnesses and therefore reject blood transfusions tinder any circumstances [9]. These changes in the relationship between health care professionals and their patients, while evident, are nevertheless occurring slowly. Haug and Lavin [4] found that physicians seemed reluctant to accommodate to patient preferences in treatment. They found that the majority of physicians studied, especially those who were older, would assert the dominance of their expertise when faced with patient challenges, or resort to persuasion on the basis of their esoteric
758
MERRIJ~YJ. KELNERand
knowledge. It appears that while patients‘ rights to control decisions about their clinical care, and particularly about the circumstances of their dying are receiving increased attention, the issue is far from resolved. A number of reasons have been advanced for the growing concern with the dying process. The explosive advances in biomedical technology since the !92Os have increasingly made dying a matter that requires deliberate decisions [IO]. For almost any life-threatening condition, some medical intervention can now delay dying. The problem is that for many, the life that is prolonged by such interventions may not be the kind of life they would choose. The causes of death have also changed strikingly: communicable diseases have declined dramatically and chronic diseases now predominate. These chronic illnesses, such as heart disease and cancer, tend to occur later in life and are usually progressive for some years before the patient dies. Patients facing death are now more likely to be older, with the important exception of AIDS, and to suffer from illnesses for which therapeutic interventions are available [I I]. Health care professionals are trained to use the technologies that arc available to them. even when the consequences for patients may be painful. debilitating and even dehumanizing. People also die in hospitals more often. One estimate is that 80% of the deaths in the United States take place in hospitals and long-term care institutions [12]. The result is that terminally ill patients have little privacy and often little choice regarding the circumstances of their dying. Death has become bureaucratized, as described by Blauner 1131; the dying process has been subjugated to the hospital’s requirements. Recent studies indicate that most patients want to have an influence on decisions concerning the circumstances of their dying [14-161. Health care professionals are being confronted with new dilemmas in trying to accommodate patients wishes for self-determination during the dying process. and are responding in a variety of ways to this challenge [ 171. In particular, it is the desire of patients to forego life-sustaining treatments that is seen as most problematic by many health care professionals in North America [ 18--221. Many patients are worried about loss of control regarding their dying, and their fears can cause conflicts between health care professionals and patients or their families. Physicians and nurses are finding it difficult to cope with the complex medical, legal and ethical issues involved in utilizing the new technologies that enhance the capacity to sustain life [23]. In addition. the need to curtail spending on health care has prompted questions about the wisdom of keeping patients alive when they no longer wish to have their lives prolonged [24]. Few guidelines and no real agreement exist to guide health care professionals as they strive to respond to
IVY L. BOURGEALJLT
the growing desire of patients over their own dying.
to have more control
Purpose
This paper is the first in a series of reports on a study which examined the responses of physicians and nurses to patients’ desire for control over the dying process. The goal of the study was to identify key factors that influence the knowledge, attitudes and behaviour of health care professionals concerning this issue. The focus of this first paper is specifically on: (1) the reactions of physicians and nurses in a major teaching hospital to the general principle of patient control over dying; (2) the main factors that affect their adherence to this principle in practice; and (3) who they believe should have the final authority for deciding whether to prolong the lives of terminally ill patients. In the study described here, the concept of patient control includes the notions of patient autonomy, empowerment and self-determination. It means that patients have a choice concerning the nature and goals of the treatments they receive from health care professionals. In particular, it means that patients can choose whether they wish to be aggressively treated in order to prolong their lives, or wish to terminate life-sustaining therapies and allow their lives to end sooner than they might otherwise do. The findings to be discussed, while limited in scope, will reveal some of the critical dimensions of health care professional’s responses to the desire of patients to exert control over the circumstances of their dying. Favourable responses will augur well for the growing momentum from patients. If acceptance of patient’s wishes for control is qualified or not indicated, the findings will help to delineate the barriers to professional co-operation. These barriers can then begin to be addressed. METHODS
A purposive sample was used as a basis for establishing patterns of knowledge, attitudes and behaviour. The sample was drawn from 4 distinct clinical specialities in order to reflect the differing perspectives occasioned by different practice contexts. Respondents included 5 physicians and 5 nurses from each of: family and community medicine, oncology. intensive care and geriatric care. These particular specialties were selected because they represent different kinds of clinical settings and thus permit comparative analysis. Intensive care, for example, provides few opportunities for considered decisionmaking, whereas geriatric care affords patients and health care professionals a longer period in which to deliberate their choices regarding the dying process. Oncology often introduces the elements of severe pain and imminent death, whereas family and community medicine is not typically faced with these pressures.
Patient control over dying In-depth, semi-structured interviews were conducted in person by the principal author with a sample of 20 physicians and 20 nurses at a large teaching hospital in Toronto, Canada in the summer of 1991. The interviews averaged about 45 min and included questions concerning physicians’ and nurses’ general thoughts about patient control over dying; their knowledge of specific issues of patient control; their beliefs regarding what they ought to do in response to patient’s wishes for control; and what they actually do in clinical situations when this issue arises. Any respondents who had not actually encountered such situations in their work were asked to imagine how they would likely respond. While interviews followed a structured guide, several questions permitted spontaneous expressions of opinion and recounting of relevant experiences. The questions posed to the nurses and physicians in this study were based on the assumption that they related to patients who were terminally ill. The precise meaning of this term is not clear, however. Definitions vary regarding the length of life-expectancy, the rate at which a person is dying and the signs and symptoms they display. Thus, the term ‘terminally ill’ implies a subjective impression or opinion, rather than a statement of fact [25]. The interviews were tape-recorded and summary notes of the health care professionals’ responses were also taken. The taped interviews were transcribed and entered verbatim into a computer for coding. Various qualitative data analysis procedures, such as content analysis and concept saturation, were used to code and group the health care professionals’ responses into key concepts in the mode of grounded theory as delineated by Glaser and Strauss [26]. Some of the coded data were also analysed with descriptive statistics including frequency- and cross-tabulations. Given the small size of the sample and the nonrandom nature of the strategy for attaining this sample, caution must be taken in attempting to generalize the distribution or frequency of the responses of these health care professionals to others. The properties and the concepts resulting from this analysis, however, should be regarded as transferable, in the sense that it is likely that other health care professionals in other hospitals in North America will also identify similar concepts. Furthermore, the richness of this type of data can yield fruitful insights into the complex issues underlying responses of health care professionals to the current demands of patients to exert more control over dying. FINDINGS
Respondents The characteristics of the 20 physicians and 20 nurses interviewed for this study are depicted in Table 1. The figures indicate that this group of health care professionals were fairly evenly distributed between the categories of both age and years of practice,
159
Table I. Characteristics
of respondents
by profession
Physicians
NUWZS
0 (0%) a (40%) 1(35%) 4 (20%) I (5%)
7 (35%) 3 (15%) 6 (30%) 4 (20%) 0 (0%)
13 (65%) 7 (35%)
0 (0%) 20 (loo%)
Years in practice CL-5 6-10 11-15 It&25 26-t
5 (25%) 5 (25%) 4 (20%) 2 (10%) 4 (20%)
1(35%) I (5%) 3 (15%) 5 (25%) 4 (20%)
Religion Catholic Protestant Jewish Agnostic Other
5 (25%) 8 (40%) 3 (15%) 3 (15%) 1 (5%)
6 (30%) 13 (65%) 0 (0%) I (5%) 0 (0%)
6 (30%) 4 (20%) 10 (50%)
5 (25%) 3(15%) 12 (60%)
N = 20
N = 20
Age 20-29 30-39 4&49 50-59 60+
sex Male Female
Religiosity Not at all Somewhat Very Total
although only nurses appear in the youngest category. This reflects the longer training period required of physicians. The nurses were predominantly Catholic or Protestant, with only one agnostic. The physicians, however, include some Jewish respondents as well as several who describe themselves as agnostic or atheist. In addition to their formal religious affiliation, respondents were also asked whether they considered themselves to be religious. ‘Religious’ in this context was defined as the degree to which religious principles guided their actions. A majority of the nurses (n = 12) and half the physicians (n = 10) said that they regarded themselves as religious in these terms. These proportions seem high in a society that appears to be becoming increasingly secular, but they should be understood in terms of the specific definition respondents were given when asked whether they regarded themselves as “a religious person” (i.e. a person whose actions are guided by religious/moral principles). While the nurse sample is completely female, it is worth noting that the physician sample is 35% female, which is considerably higher than the proportion of women currently in practice in Canada 1271. The Principle of Patient Control At the beginning of the interviews, physicians and nurses in the study were asked to indicate their personal views on the general principle of patient control over the dying process. While most of them focused on the wishes of patients to forego lifesustaining therapies, a few also interpreted patient control as the desire of some patients for aggressive measures to prolong life.
MEKRII~Y J. KELNER and
760
All but one of the physicians and all of the nurses said they believed in the principle that patients should control the circumstances of their own dying. Several said they saw this control as one aspect of a larger movement of patients to assume a key role in their medical
care.
In the words
of one
specializing
in geriatrics
I see it in the same light as patient (P6). Nurses that
were
patients
example,
particularly should
a nurse
control
concurred:
autonomy
positive their
in geriatrics
in all respects.
about own
the dying.
idea For
noted:
Far too often the profession dictates to them. Doctors and nurses have been trained to heal and death is a slap in the face to them. Patients should have more control over their own fate. (NIQ. Another
nurse
in intensive
care
commented:
They should have a say in the way they want their death managed. They know when the effort to live is simply too
much. (N14). Physicians tended to express their approval measured terms. For example, one physician sive care said:
in more in inten-
A lot are caught in a crisis of wanting control, but they need help and someone else to tell them what they should be doing. (PZ). A physician in family practice overseas for some years said:
L.
BOURGEAULT
the effects of gender seem to be less influential than the effects of professional socialization on this particular issue. Factors Aflecting
oncologist:
This is an evolution in medical care and our medical culture; it’s going toward more of a joint decision making. This is just one manifestation of it. (P9).
A physician
IVY
who
had
worked
It’s an extremely culture bound discussion: each culture varies in it’s standards of what is appropriate. (P4). Health care professionals’ overall views of patient control over dying did not differ significantly by the age, years of practice or gender of the respondent. There was, however, a trend in terms of medical speciality across both nursing and medicine. All 10 physicians and nurses in intensive care were unconditionally in favour of patient control as well as 8 of those in geriatrics and 6 in family practice. Those in oncology expressed more reservations in that 6 of the 10 were only conditionally in favour. Perhaps these differences are due to the reality that health care professionals in oncology, more often than the other specialities in this study, confront patients who tend to be in extreme pain and want an end to it. At the other end of the spectrum, physicians and nurses working in intensive care must make very fast decisions concerning whether or not to continue trying to sustain patient’s lives. It may be that they are grateful, in these circumstances. for any guidance they can get from patients or their families on how to proceed. Again, caution should be taken in generalizing from these small differences. It is interesting to note that the responses of female physicians and male physicians did not differ. Thus,
Professional’s Control
Views of Patient
The support expressed by health care professionals for the general principle of patient control over dying was not, however, unqualified. Many respondents expressed reservations about when it was appropriate to accede to patient’s wishes in this respect, and when it was not. In other words, they qualified their general approval by mentioning several key factors that would lead them to reconsider. These factors can be grouped into 3 main categories: (1) patient circumstances; (2) professionals’ moral scruples and legal concerns; and (3) the type of intervention patients might request. (I) Patient circumstances The physicians and nurses in the study identified a number of patient circumstances that affected the extent of the support they were prepared to give to patient control over dying. Among the most frequently mentioned were: access to information; stage of illness; mental competence; age of patient; consistency of requests; and severity of patient’s illness. (a) Leael qf comprehension. A number of health care professionals were concerned that patients might not possess and fully comprehend all the information required to make an informed choice. Some said they would have to be certain that the patient had been provided with “adequate” information and advice. If this were not the case, they said they would not find it acceptable to automatically follow a patient’s wishes. Instead, they favoured a model of “mutual decision-making” between professionals and patients rather than patient control. As one of the oncologists said:
1 have no problem with it whatsoever. provided the patient has a legitimate and reulisric appreciation of what it is they’re going through. (P12). Another
physician
in geriatrics
put
I think that the physician must explain prognosis and recommend the operative patient must agree or disagree. (Pl 1). A nurse Patients
in geriatrics
concurred
it this
way:
the diagnosis and treatment and the
that:
and families need to know what the srtuation
is [in
order] to have some control over it. (N18). These qualifications reflect health care professionals’ concerns that medical care should be given in the way they believe is best for the patient. Terms like ‘adequate’, ‘legitimate’ and ‘realistic’ imply subjuctive judgements about the nature of treatments. Respondents’ comments imply that they believe these kinds of judgements are best made by health care professionals.
Patient control over dying It is important to note here that many of the physicians and nurses in this study expressed a high degree of concern for the welfare of their patients. Their commitment to the best interests of their patients was obvious; this commitment, however, was framed within their own professional perspective. (b) Stage of the illness. Respondents believed that patient control should be established early-ideally before the patient becomes terminally ill. They recommended that discussions about the dying process be initiated with patients during routine office visits. An oncologist said: We should begin these discussions at an early stage-Not discussing death doesn’t help. (P2).
When physicians were asked, however, whether they routinely discussed control of dying with elderly or very ill patients, only about half said they did. The same oncologist quoted above admitted: It’s hard to find the right time. (P2). Thus, the correct time for patients to express the wish to control their dying appears to relate more to the health care professional’s timetable than to the patient’s need to exert control. (c) Mental competence. Respondents believed that it was central to patient control that the patient be judged mentally competent (i.e. in sound mind and capable of rational thinking). These health care professionals made it clear that this was an essential element of their perspective on this subject. As one family practitioner said: Patients have the right to control their own destiny-if they are mentally competent to make that decision. (P5). Others were concerned that a patient might be in a state of depression, and thus unable to make a rational decision. A physician in geriatrics remarked: It takes a lot of careful work to ascertain whether they’re just depressed. The wish to die is a complex issue. (PIO). Respondents seemed to assume that their of an individual’s competence or state of should constitute the deciding factor. (d) Age of patient. Age was a factor in the extent of the control that could and exercised. Several respondents mentioned was an important consideration for them. practioner said: Age makes a difference younger
A nurse
patients.
here.
We often
estimation depression influencing should be that age One family
try harder
with
(P8).
in family
practice
commented:
If they are old and sick, well, we all have to die sometime. (N3). It seemed easier for these health care professionals to accept the notion of patient control over dying in the case of older patients who had already lived full lives than it was with young people who still had potentially long lives ahead of them. This greater concern for the future of young patients reflects the curative
761
emphasis in the undergraduate programs of most health care professionals. (e) Consistency of requests. Both doctors and nurses said they would be reluctant to honour patient’s requests to refuse life-sustaining therapies if they were not consistent. They emphasized that patients can change their minds when they come close to dying and that the wishes they have indicated earlier, either orally or in a written directive, may not be what they want later on. A physician in geriatrics reported a case in which a patient who had previously requested that no aggressive measures be used “changed her mind after she was given more information.” (P20). The possibility that a patient will change his or her mind makes these care givers distinctly uncomfortable. They run the risk of misinterpreting what it is the patient really wants. This can lead to accusations or even legal actions from families or patients who charge that their wishes were ignored. (f) Severity of patient’s illness. Also important in health care professional’s response to patients’ wishes for control was severity of illness. When a patient seems close to death and further treatment appears futile, most of the respondents agreed that it was easier to accede to requests that aggressive measures be discontinued. One family practitioner put it this way: When a patient is dying and knows they’re dying, I ask them what they’d like to do. (Pl).
A nurse
in family
practice
said:
If it’s something where the end result is terminal and everything that is possible has been done, then I think the
patient should be allowed to be comfortable if that’s what they want. (N2). Once again, these respondents do not question that their assessments of what constitutes a “terminal illness” may be different from the judgements made by their patients. (2) Moral scruples and legal concerns A second set of limiting factors for health care professionals who are requested by patients or their families to cease all life-prolonging therapies are their moral scruples and legal concerns. (a) Moral scruples. A majority of nurses and doctors expressed uneasiness about co-operating with patients who want active treatment stopped, and many indicated their unwillingness to accede to a patient’s request if it violated their own personal moral or ethical codes. One of the family practitioners put it like this: I have to live with myself and I won’t go against my moral code. If a patient wants something that’s against my code of ethics then I will have them see someone else. (P5). Several measures
nurses which
indicated might
ask to be transferred request contravenes
that
if a patient
asked
for
end his or her life, they would
to another case. If a patients’ their personal moral scruples,
162
MERIUJOY J. KELNER and
most nurses said they would refuse to follow that patient’s wishes. As in the case of abortion, another morally sensitive issue, health care professionals are not prepared to violate their own sense of what is ‘right’, in order to accommodate a patient who wishes to control the circumstances of their dying. (b) Legal concerns. Along with personal moral and ethical scruples, respondents also expressed concern about the legality of co-operating with certain kinds of patient requests. When a patient refuses lifesustaining treatment. health care professionals may not feel able to honour the patient’s request due to worries that the legal system will not protect them. As one oncologist put it: The law doesn’t support people who terminate life in our current setting. There’s a very fine distinction.. and it depends on what the person feels the physician is doing. (P2).
This same physician
further
commented
that:
It’s a mine field that people are getting into and I don’t know that any of us know where it’s going to go. (P2). in oncology
A nurse
IVY
L. BOURGEAULT
Many nurses practice said: They should only. (N4).
agreed.
have the right
to request
one in family passive
euthanasia
Almost all the respondents in this study indicated that they would refuse to follow a patient’s wish for an active intervention to hasten their death. They were unwilling or unable to contemplate any form of active euthanasia or physician-assisted suicide. A few physicians focused on the other side of the issue: a patient’s wish that aggressive measures be used to prolong their life even when death seems imminent. As one physician in geriatrics asked: Should patients have the right to demand overly aggressive measures in an era of scarcity?. rationing may be defensible here. (P6).
Another in oncology said if a patient insisted on aggressive treatment “I’d find another physician to take over the case” (P12). Nurses in the study did not raise these issues of resource allocation, perhaps because they are not likely to be held accountable for use of ‘futile’ measures. Final Authority-
This nurse was involved in a case at the time of the interview in which a woman with cancer was in great and seemingly intractable pain. She explained: It’s not her cancer that’s killing her; she months to a year. But she wants to die wants her to die. No one in the hospital responsibility for helping her die because tion for us. It’s very hard. (N7).
could live for six and her husband is willing to take there’s no protec-
Thus, for these health care professionals, personal moral scruples and concerns regarding the legal implications of patient control over the dying process were important factors influencing their attitudes and behaviour. (3) Type of intervention Most physicians and nurses were careful to differentiate between patient control over decisions to withhold or withdraw treatment (often referred to as passive euthanasia) on the one hand, and decisions to end life through an active intervention of some kind (usually regarded as active euthanasia) on the other hand. One physician in intensive care said: I wouldn’t prolong life but I wouldn’t Another
example,
said:
I’d only be comfortable [following a patient’s wishes] if it were legally binding; otherwise we’re not covered or backed up. (N7).
patient
For
[who wants
me] to hasten
physician
in geriatrics
co-operate with a their death. (P19). echoed
this
view:
It’s appropriate for patients to indicate their wishes regarding-withdrawing of therapy or comfort care. But when it comes to active euthanasia I have real trouble. That’s not the role of a physician. (P9).
Who has the Last
Word?
In keeping with their general, overall endorsement of patient control of the dying process, a majority of physicians (14) and half of the nurses (10) said they believed that the final authority to make decisions regarding prolongation of terminally ill patients’ lives belongs to the patient alone. During the course of the interview, however, several respondents acknowledged that they had some ambivalence concerning who had the final authority to make decisions. Some indicated that they were aware that the socially acceptable answer is: “It is the patient alone who should decide,” but they did not always agree. A physician in intensive care put it this way: This is the dogma, demands. (P17).
but the patient
can’t make ‘ridiculous’
A nurse in family practice
said:
I agree patients
their dying, but in some ways
should control
it may just be the popular thing to do. (NI). These types of statements suggest that not all professionals have come to terms with the loss of clinical discretion implied in the principle of patient control. (I) Team decisions Nurses were somewhat more comfortable than physicians with the team approach to decisionmaking. This was reflected not only in the fact that team decision-making was mentioned more often by nurses (9) than by physicians (6), but also in the nature of the comments these nurses made. As one nurse in family practice put it: It’s unfair (N3.
for one person
to have this responsibility
alone.
Patient control over dying They said that even if the patient ultimately makes the final choice, it is important for others to have input into that decision. This perhaps reflects the nurses’ lesser power and greater comfort in sharing responsibility. Nurses liked ward conferences that include the patient, the family and a range of health care practitioners such as social workers, ethicists, psychologists as well as physicians and nurses. This strategy is much more common on geriatric wards where the staff know the patients well and have time to work out these issues than it is in intensive care units where decisions must often be made quickly concerning the fate of patients whose history and wishes are not known to the staff. A few physicians pointed out that it is not always possible to carry out patient’s wishes. In particular, they mentioned those instances where there is ‘no time’ to inform patients of their options, and where professionals must make decisions on the patient’s behalf. In such cases, they said, it is best to have a team decision. The team strategy thus appeared to permit a sharing of the burden of responsibility among health care professionals when they were uncertain about what the patient would want, or when there was disagreement between professional’s views and patients’ views regarding the best course of action. (2) In cases of disagreement The issue of who should have the final word becomes crucial when disagreements emerge between patients (or their families) and health care professionals. When asked about how they deal with such cases, many of the respondents (7 nurses and 11 physicians) said they would follow patients’ wishes. More of the respondents (14 nurses and 9 physicians) said they would try to seek a compromise through persuasion and provision of more relevant information. This kind of “persuasion” would be difficult for patients to resist, backed as it is by the clinical expertise of health care professionals. Still others indicated reluctance to accede automatically to patient’s (or family’s) wishes if they did not agree on the measures that should be taken and said they would “do as they see best” (3 physicians and 2 nurses). A few respondents said they would request removal from the case. Others said they would seek another opinion (7 physicians and 2 nurses). It seems clear that health care professionals are hesitant to completely relinquish final authority over whether or not to forego life-prolonging measures. A related question was addressed specifically to nurses. This time the conflict over decision-making was between the patient who wished to end lifesustaining efforts and the family who resisted. Nurses were asked to indicate how they respond to these situations. Many said they were familiar with this type of conflict and that it occurs frequently. Most of the nurses in the sample said they believe that the patient’s wishes should be paramount in such cases,
163
although half of them added that they would work hard to achieve a compromise. As one in intensive care said: Usually the family wants to keep them alive when the prognosis is poor. I try to explain the situation to them so they can see the real picture. (N6). A few pointed out that it is basically the physician’s responsibility to resolve conflicts of this kind. Only one nurse, who was in oncology, felt that the family’s wishes should take precedence over the patient’s, She said: Sometimes families are bitter afterwards and could bring charges. (N 12). This analysis of views concerning who should have the final word suggests that when faced with concrete situations, health care professionals often moderate their support for the general principle of patient control. In specific clinical situations, they tend to trust their professional judgement over the wishes of the patient. DISCUSSION
Physicians’ and nurses’ responses to the issue of patient control of dying have been shown to be varied, and influenced by a number of factors, including their medical speciality, the specific patient circumstances, their personal moral scruples, legal concerns and the exact type of intervention requested by patients. Underlying their expressions of ambivalence and the qualifications they presented to accepting the principle of patient control lie some critical themes. The first theme that emerges clearly is that patient control represents a challenge to their clinical judgement. They are reluctant to give up the right to use their clinical discretion in the face of a patient’s wish to make the final decision about their own fate. Their professional training emphasizes the obligation to use their skills in the best interests of the patient [28,29]. Good medical care has been based on consideration of each patients’ unique circumstances. The range of patient circumstances identified by these health care professionals were seen as important to their clinical decisions. Health care professionals who want to honour patient’s wishes may have to face the prospect of relinquishing this aspect of their professional identity. A second theme stems from respondents’ views on the type of intervention they would be willing to agree to. At issue is health care professionals’ perception of their role as healer/supporter. The whole thrust of their socialization as caregivers emphasizes the obligation to use whatever technology is available to care for the sick. When patients request that lives be terminated, it almost seems to be an affront to their core task of healing and comforting; in other words, a failure [30]. Respondents made it clear that they see their professional role as supportive of life.
MEKKIJOY J. KELNER and
764
4 third theme applies particularly to physicians whose responses indicated that they feel a challenge to their prqftissional autonomy and poir’er. Physicians have enjoyed a position of respect and dominance over patients in the past. To share this power with patients requires a major shift in attitudes and bchaviour; one which physicians may have difficult) making. Although some respondents appeared to be accommodating to changing societal expectations, there was still reluctance to surrender their clinical autonomy. This was particularly evident in respondents’ comments concerning who should have the final authority to make decisions about the circumstances of a patient’s death. The fourth theme underlying many of the remarks made by respondents relates to concerns about their personal ethics und the potential fiv legal liubilit~~.This theme includes both a moral dimension and concrete legal implications. Respondents made it clear that they would not surrender their own moral code to the pressures of patients. They need to retain their ethical standards and also to protect themselves from potential legal problems. On a number of occasions. both physicians and nurses commented on the risks involved if they were to follow the desire of a patient to shorten or terminate his or her life. In an increasingly litigious society. it is not surprising that health care professionals should be sensitive to the need to practice medicine in a ‘defensive’ manner. If this concern is to be reduced. safeguards will have to be developed that will protect professionals who want to accede to patient’s wishes for control. Health care professionals may react more positively when there is greater clarity about this issue and more guidance from legal precedents. A recent example of this kind of precedent has been provided by the Nancy B. ruling in Quebec. In this case, Nancy B.. a patient suflering from a debilitating neurological disorder that left her paralysed, won the right to have doctors disconnect her respirator. The judge who made the ruling said, “a doctor should not be held liable and accused of careless conduct and criminal negligence for respecting the patient’s right to self determination” [31]. CONCLUSION
Health care professionals are struggling to adapt to the growing demands of patients for more control over decisions and more choice about how and when they will die. They are trying to respond in what they perceive as a responsible manner to the consumer movement in health, of which control over dying is but one aspect. This requires that they concede some of their autonomy, and enter into a partnership with patients in the decision-making process. It means that those with power must agree to share it with those they treat, and surrender certain established rights and responsibilities. The advantage to professionals in this sharing of control is that they no longer bear
IVY L. BOURGEAIXI
the full burden of responsibility for decision-making. They also have the benefit of the patient’s insights and experience. The disadvantage is that they have been trained to rely on their own interpretation of the facts. to take control of clinical situations and to intervene when and how they think it is warranted. It may bc useful to think of the power relationships between health care professionals and patients in the form of a continuum, with the perfectly autonomous patient at one extreme, the all-powerful professional at the other extreme, and a range of shared decisionmaking in the middle. It is this middle range of the continuum that patients are seeking to expand. A degree of tension between the interests of health care professionals who want to practice medicine as they think best, and the emergent consumer movement in health care seems inevitable. It is not likely that such a shift in the norms of practitioner-patient relationships will be accomplished quickly. Nevertheless, in spite of the difficulties in moving toward shared decision-making or a partnership mode of care. we can already observe certain changes. One of the most striking shifts has taken place in patient control of the birthing process. This phenomenon, situated at the opposite end of the life-cycle to the one examined here, suggests that professionals are able to accommodate to the desire of patients to exercise more control over decisions about their own health care. They have made significant changes in the experience of childbirth, in response to the wishes of parents for more direct involvement. In the area of patient control over dying, indications of change are also evident. The Ontario Medical Association. for example, has recently issued guidelines on caring for terminally ill patients which recommend that physicians “incorporate systematically the patient’sifamily’s ideas, feelings, and expectations into long-term clinical decision-making” [32]. As the public in general and patients in particular, continue to press for more control of the dying process. health care professionals may have difficulty in relinquishing this traditional area of their decisionmaking. Nevertheless, new policies and guidelines are currently being developed which will serve to promote a sharing of control and responsibility. New patterns of interaction in the clinical context will have to be negotiated. dc,knoM,/r~Kemmr.F--The research on which this study is based was supported by a grant from the Penta Stolp Foundation. The authors wish to acknowledge the assistance of Dr P. C. Hebert, Dr E. V. Dunn and A. K. Marshall R.N. in the design and execution of the research. The authors also wish to acknowledge the helpful comments made by colleagues on an earlier draft. These include: Dr’s B. Wigdor, K. Yoshida. C. Rosenthal and B. Wellman.
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