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Decision-making in palliative care practice and the need for moral deliberation: a qualitative study
Patient Education and Counseling 56 (2005) 268–275
Decision-making in palliative care practice and the need for moral deliberation: a qualitative study Maaike Hermsen∗ , Henk ten Have Department of Ethics, Philosophy, and History of Medicine, University Medical Centre Nijmegen, 232 EFG, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands Received 15 June 2003; received in revised form 2 March 2004; accepted 15 March 2004
Abstract The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care. It is not clear how caregivers deal with these moral problems. In this article, we focus on the decision whether to continue treatment or to withhold it, and discuss the way caregivers deal with this question amongst themselves and in communication or consultation with the patient. We look at moral deliberation, the process of identifying the crucial arguments for this decision in palliative care. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Palliative care; Decision-making; Moral deliberation
1. Introduction
2. Methods
The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care [1,2]. The multi-professional nature of palliative care, the difficulties of caring for the terminally ill, and the complicated medical and nursing problems involved, combine to foster a particular sensitivity to moral problems in many palliative care professionals [3,4]. Earlier studies [5,6] have identified and explored these moral problems in palliative care. These studies have not made it clear how caregivers deal with the moral problems that arise in health care practice, nor is it known if the decisive arguments differ between health care environments, and—if they do differ—how they differ. In this article, we compare various palliative care environments. We focus on two aspects of the decision to (dis)continue treatment, and discuss the ways in which caregivers deal with these problems. We analyse the considerations and arguments relevant to the (dis)continuation of a treatment. Then, we discuss the way in which the palliative patient is informed about, and takes part in, this discussion. Finally, we analyse the value of, and the need for, moral deliberation, that identifies the arguments that are crucial for each such decision in palliative care.
There are a variety of research methods available to investigate the specific moral considerations and arguments that are crucial to action and decision when palliative caregivers are confronted with moral problems. This contribution describes the results of 15 qualitative, semi-structured interviews with caregivers working in five different environments: the medical oncology ward of a general hospital, the medical oncology ward of a university hospital, a hospice, a nursing home and a general practice. The moral problems mentioned earlier are encountered in all five environments. To get a broad overview of these topics, we not only looked at different environments, but also interviewed a range of professionals (doctors, nurses and attendants). The interviews took place in February and March 2002. The lengths of the interviews varied from 1 to 1.5 h. We constructed a list of relevant topics that were to be covered during the interviews, based on earlier systematic studies [5,6]. In this sort of qualitative research, such a list is called an interview guide [7]. Because this was an open investigation (the sort of data that was going to be necessary to allow us to answer the purpose of the interviews was not clear beforehand), the guide was useful in structuring the interview. The interviews have been analysed as follows. First, the ‘moral reality’ was extracted and reconstructed from the perspectives of the interviewees, expressed in their own language (‘the actor’s point of view’ or ‘the inner perspective’)
∗ Corresponding author. Tel.: +31-24-3615320; fax: +31-24-3540254. E-mail address: [email protected] (M. Hermsen).
0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.03.013
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[7,8]. This involved transcribing the interviews and subsequently attaching specific codes to various segments of the text. The basic question was, what phrases and concepts did the interviewees use to identify ways of dealing with moral problems? This sort of ‘moral reality’ can be unfolded and conceptualized in so called ‘sensitizing concepts’ [9,10]. Meaningful concepts identified by the interviewees had to be classified in terms of the researchers’ (authors’) ideas of morally relevant considerations and arguments. This required repeated analyses of, and reflection about, the research material [8,11,12]. The results of the interviews are described further. Three caregivers per palliative care setting are not enough to allow us to draw reliable and general conclusions about the settings individually. Thus, we first focus on general morally relevant arguments, valid for all environments. Next, we highlight differences between environments. The two hospital environments turned out to be nearly identical, and we have lumped them together. We will first consider the arguments bearing on the (dis)continuation of treatment and proceed to the question of communication with the palliative patient. The discussion is illustrated with quotations from the interviews.
3. Results 3.1. (Dis)continuation of treatment The interviewees mentioned the following general moral arguments as involved in the (dis)continuation of treatment. All the caregivers working in the five different environments thought that it was important to recognise the autonomy of the patients and of their relatives. Access to detailed and clear information is a precondition for the patients and their relatives to be able to make an autonomous decision about the benefit of a certain treatment. After all “the quality of the information available determines the quality of the choice the patient is able to make”, a hospice nurse explained. The interviews made it clear that the autonomy of patients is becoming an increasingly important factor in decision-making in palliative care. Patients are becoming less inhibited about expressing their wishes and preferences, and doctors are paying more attention to the wishes of patients than they did in the past. A general practitioner gave an example where he’d acted as an advocate for a patient with a particular demand. He argues that caregivers should focus on finding out what are crucial values for the patient: [a patient, authors] “was very freedom-loving, he wouldn’t be tied down. I’d mentioned to the internist that the patient was planning to go on holiday and that he wouldn’t accept a regular schedule of visits to the hospital. The internist could bear this in mind.”
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All caregivers working in the five different environments mentioned that the autonomous wishes of patients and their relatives are relevant in decision-making in palliative care. Caregivers working in the nursing home—where patients are more likely to be totally or partially incompetent, tend to lay the emphasis on the wishes the patient would have had when competent. In the next sections, we will focus on the questions about decisions about the futility of a treatment, raised specifically in the various environments. 3.1.1. Hospitals In the hospitals, the crucial factors are the assessment of the medical feasibility of a treatment and the social and psychological capacity of patients on the other hand. The balance of these factors determines whether a treatment will be continued or abandoned. The aims and consequences of a treatment have to be made clear, and it has to be decided what is medically–technically achievable. Then a judgement has to be made about whether the patient will be able to tolerate the treatment; the psychosocial aspects of the patient’s situation have to be clarified. Consequently, “we have to judge whether the patient and their relatives will be able to tolerate a treatment of this intensity. [. . . ]. It is important to regularly evaluate this social and psychological capacity”, a doctor of the general hospital states. Part of this judgement involves regular evaluation of the quality of life of the patient. Patients push out the frontiers all the time because their will to live can be very strong, but eventually further treatment is going to start degrading their quality of life and at that point further treatment is contra-indicated. The interviews made it clear that the question of whether to offer a patient a futile treatment, or the continuation of a futile treatment is an issue for doctors and nurses working in the hospitals. It is also clear that non-medical considerations might motivate specific (non-)treatment decisions. In general, when the treatment is futile—when the probability of remission is minimal—the doctors felt that it should not be offered to the patient as a real possibility. However, sometimes when a treatment is futile the doctors will still offer their patients a last chance. In these cases the motivation is psychological rather than medical; the decision to discontinue the treatment is being postponed in order to give the patient the time to get used to the fact that the treatment is useless. Patients need that last chance because they are clutching at straws. When the patient eventually realises that the treatment is ineffective, they take the initiative in bringing it to an end. In that case “the decision to stop the treatment becomes their own decision and that is an advantage”, as a nurse indicated.
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In practice, patients rarely ask for treatment to be stopped. Thus, the effect of this ‘last chance policy’—and this is a recent development, as one of the nurses of the general hospital explained—is that treatment is rarely discontinued and patients nowadays die while still being treated. 3.1.2. Hospice In the hospice the crucial factor in the (dis)continuation of a treatment has been described by one of the interviewees as the ‘readiness to die’. A reason to continue a treatment would that a patient and their partner had not had the opportunity to say goodbye to each other. Caregivers were more often inclined to give a patient a blood transfusion when they had yet not accepted that they were going to die. In the hospice, the question whether or not to treat and manage pain and other symptoms is a frequently recurring issue. Because effective pain relief and similar symptomatic treatments can shorten a patient’s life, decisions about whether to treat pain and other symptoms or whether to (dis)continue a treatment have to be made very carefully. These decisions involve very difficult discussion with patients and their relatives. 3.1.3. Nursing home As mentioned earlier, during the interviews all caregivers emphasised the importance of the autonomous wishes of the patient in making decisions about the futility of a treatment. However, the majority of the psycho-geriatric patients admitted to the nursing home are partially or totally incompetent. This complicates the decision about whether to continue a treatment. The caregivers working in the nursing home explained that there are, nevertheless several ways to determine whether continuing a treatment is appropriate. Intensive observation of the patient can be useful; trying to interpret the reactions of a patient to determine whether it is worthwhile to continue treating an infection or to give an injection, for example. The aim is to estimate the quality of life of the patient as they degenerate. It is also possible to reconstruct the wishes of the patient from what is known about the patient’s wishes expressed when they were competent. The aim is to make a well-considered decision for the good of the patient in consultation with the patient, the doctor, the attendants, and the relatives of the patient. Age can be an important criterion in determining whether to continue a treatment; active treatment is more likely for the vital young patients than it is for the older patient who is exhausted and close to death. A nursing home doctor explained that it is important not to act too ‘situationally’; it is necessary to take account of the possibilities for amelioration and of the perspective of the patient. “Both psycho-geriatric patients, and somatic patients, lose the will to live when they have fallen ill.” Bystanders— relatives of the patient as well as nurses—become scep-
tical about whether you should treat the patient. “But my experience is that when people finally do recover, they do want to live longer.” That is why you should not acting too situationally. “You always have to look for treatable causes; for example, depression can often be treated very effectively and may not be an expression of a well-founded wish for death.” In literature this discussion about acting not too ‘situationally’ is known as the ‘no lose’ philosophy [13,14]. In the nursing home the debate about (dis)continuing treatment takes a different form than it does in hospitals, though the logic is much the same. In the nursing home an assessment of the medical feasibility of a treatment takes place at admission. At this point it is determined what kind of policy will be pursued—curative, palliative or symptom management. This sort of anticipation is a necessary part of planning the long-term care of the patient. A nursing home doctor explained it as follows: “when a patient comes in septic shock, I am not worried if the patient has been assigned to symptom-management. It is clear that the patient is to be allowed to die. The only thing I do in that case is to find out whether the patient is comfortable or not.” This decision is made at admission, when similar decisions are also made about advance directives and about resuscitation policy. 3.1.4. General practice The following specific moral arguments for the (dis)continuation of a treatment are identifiable in the interviews with general practitioners. The general practitioners mentioned striving for the highest possible quality of life as an important consideration. The interviews did suggest that the general practitioner is more reluctant than the hospital specialist to propose that the whole technological armoury be brought into play in pursuit of the highest possible quality of life. The general practitioner is modest about his own role; what can he do? Is he able to endure the emotional demands of the situation? The general practitioner also has to assess the capacities of the relatives of the patient; are they equal to the situation; what can they manage? The general practitioner has an overview of the situation in the patient’s home that the hospital internist lacks; he is familiar with the family of the patient who are often his patients as well. This familiarity enables him to make a better assessment of the emotional capacity of the relatives than is available to hospital specialists. 3.2. Communication In this section, we concentrate on communication with palliative patients. First we identify the general points made by all the caregivers. Then we highlight specific arguments.
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Five general points could be identified: preliminary work, the right to information, breaking bad news, the persons present and the importance of education. Preliminary work is required before it is possible to make any decisions in communication with palliative patients (for example, are the caregivers to inform the patient about his illness? And if so, in what way?). It is necessary to find out how much the patients already know about their own illness and to get some idea of their background. What has the patient already endured? It is also important to make an assessment of what the patients would like to know, what their expectations are, whether these expectations are realistic and what are their powers of comprehension. The interviewees also emphasised the importance of assessing of the extent to which the patients have accepted their illness—are they in denial, angry or resigned? Informing the palliative patient is another important preliminary to making a decision in communication with the palliative patient. In general, caregivers are inclined to consider it their duty to inform patients about their illness, although some caregivers provide more information than others. One of the nurses from the academic hospital claimed that the patient has to be fully informed about his illness and about treatment options: “the patients have to have this information before they can make a rational decisions.” The patients should be told everything they would like to know about their situation. After all, when caregivers fail to discuss all possible scenarios with patients, they take away the patient’s right to autonomy. Other caregivers were more reserved in giving all information to patients. A hospice doctor explained it as follows: “communication is the same as medication: it is not good when you give too much. When a patient has got a stomach bleed you are not going to tell them that one of the complications of cancer can be that subsequent metastases could cause blindness, deafness, etc. You do not have to tell the patient everything.” Most caregivers claimed that they opted for a middle course. Caregivers have to offer patients realistic treatment options and alternatives; they present the patient with a limited selection from the total range of possibilities. It is not necessary to give all available information to patients; patients are quite capable of making an autonomous choice between a feasible set of options. Some patients indicate that they do not want to be informed about their situation. In that case the patient’s autonomy is invested in the right not to know. The process of breaking bad news and informing patients about their prognosis is closely related to the patient’s right to information. In general, caregivers are cautious about breaking bad news. They emphasise the need to be realistic and not to give the patient false hope, but caregivers often
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do not themselves know the course of the illness and do not have to take away the patient’s last hope. This is why caregivers tend to be cautious and restrict themselves to vague generalities. Several of the interviewees remarked that bad news conversations often have to be followed up with worse news conversations. This can happen when the clinical situation gets worse and new decisions have to be made or when the relatives who take care of the patient are no longer able to cope. These conversations are always influenced by the way the patient deals with his own deterioration and loss of function. A nurse from the general hospital described an unsatisfactory bad news conversation as one that takes place in a four-person room rather than a private room, in amongst the normal daily activities. All interviewees agreed that these conversations should not be restricted to just the doctor and the patient. They felt that the patient’s relatives and a nurse or attendant should also be involved. The specific role of nurses or attendants was frequently emphasised. After the doctor has given the medical information to the patient, the nurses or attendants can, for example, repeat the message at a more comprehensible level using less technical language. In most cases, nurses are more approachable and accessible to patients and relatives than are doctors, and patients tend to direct their questions to nurses rather than to doctors. In addition to this, nurses act as guardians for the patient; they are present when appointments are being made and can make sure that the persons involved stick to their promises. One of the nurses working in the general hospital: “You are more or less the partner of that patient. You take part in the conversation in that role. [. . . ]. You find yourself almost going to sit beside the patient. To support them.” Nurses explained during the interviews that it was easier to take care of patients when they had been present when the doctor had told the patient about their situation. One frequently mentioned point was the importance for caregivers of education in communication skills. Aspects of this education are learning to break bad news, how to confront the patient with the changing scenario from curative to palliative, learning how to listen to the patients’ wishes from the patients’ point of view and learning how to ask open questions. The broader skills of supporting the patients in their coping process and in managing their so-called ‘unfinished business’ were also seen as needing to be developed. The technique for working together with colleagues in a multidisciplinary team came up as another skill where instruction could be useful—the importance of reporting thoroughly was frequently underlined. Several of the interviewees felt that more attention should be paid to these subjects in education and training. These aspects of communication were mentioned in all five environments. Other aspects were specific to the hospice, to the nursing home or to general practice.
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3.2.1. Hospice In the hospice, the transition from sickbed to deathbed has already been made; so breaking bad news has a different character than it does in the hospital; patients are already aware of their diagnosis and prognosis. An example of breaking bad news in the hospice would involve telling the patient that more metastases had been found. In the hospice, the ‘unfinished business’ aspect of the communication with the patient comes up more frequently. Subjects that have been left undiscussed in the hospital (like talking about impending death) or in the family (such as unresolved quarrels with children or siblings) often come up at the deathbed. According to a hospice nurse, people have to “finish such business” before they are ready to die. Another aspect of communication that is characteristic of the hospice is the search for connectedness between caregivers and patients at the end of life. Caregivers feel powerless when patients reject contact. It is also difficult for caregivers when dying patients are unready to accept their death; acceptance is a part of the idea of the good death in the hospice and caregivers try to communicate this to the patients. Lack of time can be a problem in the hospice. When communication and personal contact does not go well—for example, when a patient is playing nurses off one against the other—caregivers do not have the time to adjust to this situation. One of the hospice nurses: “I think that we are sometimes too sweet about this. Actually, that [playing out nurses to one and another, authors] is not pleasant, and you have to do something about it. When the prognosis is for longer survival, we work at it seriously, in a way that we can’t when the patient is going downhill rapidly.” 3.2.2. Nursing home In the nursing home, the limited competence of patients is the crucial factor in communication. Depending on the competence of the patient, caregivers have to react and communicate very differently. One of the caregivers distinguished between providing information to patients and their relatives on the one hand and social contact and caring for patients on the other hand. When providing information, caregivers communicate either with patients themselves or with a representative of the patient (in most cases a member of their family), or with both. Breaking bad news is inherent in providing information, but in the nursing home this has specific characteristics. An example of breaking bad news in the nursing home is telling the relatives that a patient who was admitted to the hospital with a broken leg or hip after a fall is no longer eating and drinking or has to be restrained to manage their restlessness. Caregivers explained that you can never be sure that the incompetent (or the partially competent) patient has understood the information given. Having the patient repeat the information can be helpful. In the somatic wards of the
nursing home, information is always given in the presence of the patient. Because patients are residents of the nursing home, there is often a long-standing relationship between them and their caregivers, which can extend to the relatives of the patient. Relatives are indispensable; they are often the only people who can provide information about a severely demented patient. One of the nursing home attendants explained: “family are very important; we have to rely on them for a lot of the information we need. They are a continuation of the resident.” In the nursing home, social contact and caring for patients are determined by specific care policies. Basically speaking, a difference can be made between ‘reality-oriented training’ on the one hand and ‘validation’ (empathising with disoriented patients) on the other. It can be difficult for caregivers to assess how to deal with disoriented patients, due shortages of time and personnel that can require that patients be physically or pharmacologically restrained. One of the caregivers mentioned that over the course of the day the restlessness of patients increases and the number of personnel available decreases. This degrades patient care; the resources available have to be concentrated on primary care. 3.2.3. General practice In general practice the typically long-standing contact between general practitioner, the patients and their relatives leads to specific communication patterns. The general practitioner’s assessment of the situation is part of the process which determines how much information is communicated to the patient. One of the general practitioners mentioned that he used to tell patients the whole truth, but that he is more reserved nowadays. “For many people the whole truth can be very hard to grasp, so I adjust my words to the particular situation. [. . . ]. I make an assessment of how much people are able to bear. That assessment may lead to situations where I might tell patients nothing. [. . . ]. Sometimes I make the decision for the patient, by presenting one option as the best one. [. . . ]. This has to do with the way that I remember patients dealing with difficult situations in the past.” There are several ways such long-standing contact can influence the breaking of bad news to the patient. One of the general practitioners explained that he rarely told a patient about the diagnosis until the patient asked for it. The only exception was to inform the patient of the diagnosis when the general practitioner thought that the diagnosis suggested that the patient’s activities in the community might be disrupted. If the patient owned a big store, for example, he would want to arrange things in advance to avoid unexpected problems for his partner or his widow. One of the general practitioners preferred that the specialist gave the patient the bad news. Not only is the specialist better able to present the diagnosis to the patient, but
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this keeps the general practitioner out of focus at a stressful time, which makes it easier for a dying patient to count on the general practitioner for support to the end of life. The relationship between the general practitioner and the partner or relatives of the patient is an important factor in preferences for a particular communication pattern. It may lead to confusing situations when the partner or relatives of the patient decide not to pass the information on to the patient. Another aspect of this relationship is that the partner or relatives of the patient are frequently also patients of the general practitioner. When the general practitioner visits the patient at home, the relatives may also be there. Sometimes it is necessary for the general practitioner to invite the relatives of the patient to come to the practice alone, for example, when they are no longer able to deal with the situation. 3.3. Moral deliberation in palliative care What moral arguments are involved in labelling a treatment medically futile and what relevant arguments can be distinguished in the communications with palliative patients? These issues have been discussed earlier. It is important to understand these moral arguments, because they form the basis of the decision. It is equally important to focus on the shared process of decision-making—nobody makes these decisions on their own and it is universally accepted that they have to be made jointly, after careful deliberation. Moral deliberation can be seen as a method of thorough decision-making in palliative care because it focuses both on making arguments and considerations explicit, and on the shared process of decision-making. Deliberation can be considered as the process of reflecting upon decisions in a way that will eventually lead to a wise and prudent choice. It is a dialog based on mutual respect. “The deliberation process requires careful listening [. . . ], an effort to understand the situation at hand, analysis of the values involved, rational argument of the possible courses of action and of the most appropriate one [. . . ]” ([15], p. 230). By analysing the case and thoroughly weighing up the factors relevant to a specific patient, the various team members can come to a well-considered decision. The interviews suggest that caregivers see a need for moral deliberation in palliative care. The majority of the caregivers (87%) favour moral deliberation. They believe that it can offer a contribution for the following reasons. For example, in the urgency of an acute situation, decisions are often taken hastily, without careful justification. One of the general practitioners explained that the reality was often over-simplified in order to justify hasty, ill-founded decisions: “the reality has been simplified and redefined to make problems easier to solve.” The expectation is that moral deliberation can facilitate and improve decision-making processes in palliative care practice. By explicitly reflecting on personal values, emo-
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tions and prejudices it is possible to clarify moral choices and set them on a firm foundation. Further, caregivers expect that communication between colleagues, and with patients and relatives, will be improved if caregivers are better equipped to justify their decisions. One of the hospice nurses expected that formalising moral deliberation would make caregivers better prepared for case discussions, better listeners, more likely agree amongst themselves and would lead to smoother interactions. These expectations have support in the literature [16,17]. Moral deliberation—in which attention has been paid not only to medical factors but also to the nursing, ideological and organisational factors relevant to the case—offers the possibility of doing justice to a patient’s narrative, in which all relevant facets are taken into account. All caregivers in favour of moral deliberation had the impression that with training, (post-graduate) courses, clinical lessons, theme or case discussions, it should be possible to demonstrate and learn the methods and principles of moral deliberation in palliative care practice. The only argument against implementing moral deliberation would seem to be the time it consumes. Two caregivers were sceptical about the implementing of moral deliberation in palliative care practice. They did not consider it a necessary improvement because the choices and decisions that were being made in palliative care practice were already well founded: “it is always clear why we choose a certain policy”, a nursing home attendant explained. “All the decisions have been made for the right reasons; the communication is good. That is why we do not need moral deliberation on the shop floor.”
4. Conclusion and discussion 4.1. Conclusion The general and specific characteristics and arguments underlying decision-making, communication and the need for moral deliberation are listed in summary in Tables 1 and 2. Table 1 General characteristics and arguments underlying treatment decisions and communication Hospital/hospice/nursing home/general practice Treatment decisions
Respecting the autonomous/reconstructed wish
Communication
Preliminary work: advanced knowledge, expectations and background of the patient Right to information Breaking bad news Persons present Education in communication skills
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Table 2 Specific characteristics and arguments underlying treatment-decisions, communication and the need for moral deliberation, classified per environment Hospital
Hospice
Nursing home
General practice
Specific characteristics
Admission for a short period
Admission for the last days/weeks
(Partial) incompetence/ nursing home residents instead of patients
Long-standing contact with patients and relatives
Treatment decisions
Assessment of: Medical feasibility
‘Readiness to die’ (acceptance of death)
Reluctant to pursue the highest possible quality of life
Social and psychological capacity
Pain and symptom management: what happens in long run?
Alternative ways to determine the feasibility of a treatment (e.g. intensive observation) Preliminary decisions at the moment of admission
Communication depends on competence: (a) Information (relatives)
Assessment and overview of the home situation Relationship with relatives
Assessment of the emotional capacity of relatives
Evaluating quality of life Offering or continuing a futile treatment? Communication
Moral deliberation
Information about treatment options Breaking bad news about a diagnosis and poor prognosis
Positive
‘Unfinished business’ Search for connectedness/acceptance of death Lack of time
Positive
4.2. Discussion In this qualitative study, we examined how caregivers deal with moral problems in palliative care practice. Fifteen qualitative interviews with caregivers working in five environments were used to collect the data for this study. The moral arguments underlying (dis)continuation of treatment and the basis of communication strategies with palliative patients have been identified. From the results of the interviews it can be seen that many of these considerations and arguments are the same in the different environments. Several factors which can lead to a treatment being labelled medically futile, or to influence choices in the communication are equally decisive in all five environments (for example, respect for the autonomous wishes of the patient, and the right to information). Decisive arguments about treatment and communication that are specific to the different environments have also been identified. Some of the moral problems confronting palliative caregivers in daily health care are intrinsic to the environments where palliative care is provided [18], and the morally relevant arguments underlying these problems and motivating practical decisions are also intrinsic to these environments. In the hospital, patients are generally admitted for a short period to undergo a treatment. In this environment assessment and evaluation of the medical–technological possibility of a treatment and of the social and psychological capacity of patients is the crucial factor in making decisions about the futility of a treatment. How to break bad news about a poor prognosis is a determinant in making choices
(b) Social contact and caring (reality oriented training or validation) Positive
Positive
in the communication with palliative patients admitted to the hospital. Because a hospice is a place in which patients spend their last days or weeks, the ’readiness to die’, the comfort of patients (keeping them pain- and symptom-free), and the little time left are examples of decisive considerations and arguments for treatment and communication. The (partial) incompetence of patients living in a nursing home influences the decision whether a treatment is futile or not and also influences decision-making in communication; the relatives of the patient play a crucial role in the transfer of information. In general practice the general practitioners’ often long-standing contact with patients and their additional obligation to deal with the relatives of the patient tend to be crucial. Finally, the contributive role of, and the need for, moral deliberation, which identifies arguments that play a crucial role in practical decision-making in palliative care, have been analysed. The majority of the caregivers emphasised the need for moral deliberation. One of our findings is that many of the considerations and arguments underlying moral problems and motivating practical decisions are specific to the environment. Because moral deliberation makes these morally relevant considerations and arguments explicit, we conclude that moral deliberation probably can facilitate and improve decision-making in palliative care practice. 4.3. Practice implications Because palliative care is expanding rapidly and—as a consequence—traditional ways of working sometimes have
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to be modified, caregivers are being continuously challenged to be creative in taking decisions. When cure is no longer possible, it is important to consider all the available treatment options and to make the policy transparent for patients, relatives and colleagues. Striving for the highest quality of life at the end of life is best facilitated by a shared process of decision-making. In a follow-up study moral deliberation will be implemented in various palliative care environments. We hope to be able to find clear evidence to support the hypothesis that moral deliberation does facilitate and improve decision-making in palliative care practice.
Acknowledgements We would like to thank the Dutch Ministry of Health, Welfare and Sport for funding the COPZ (Centre for Development of Palliative Care) Project, which sponsored the research project ‘Practical Ethics of Palliative Care’, of which this paper forms a part. The authors are grateful to Valesca Hulsman and Bill Sloman for constructive comments in editing this manuscript.
References [1] Janssens R. Palliative care. Concepts and ethics. Nijmegen: Nijmegen University Press; 2001. [2] Ten Have H, Clark D, editors. The ethics of palliative care. European perspectives. Buckingham, Philadelphia: Open University Press; 2002.
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[3] Clark D, Hockley J, Ahmedzai S, editors. New themes in palliative care. Buckingham, Philadelphia: Open University Press; 1997. [4] Clark D, Seymour J. Reflections on palliative care. Buckingham, Philadelphia: Open University Press; 1999. [5] Hermsen MA, Ten Have HAMJ. Moral problems in palliative care journals. Palliat Med 2001;15:425–31. [6] Hermsen MA, Ten Have HAMJ. Euthanasia in palliative care journals. J Pain Symptom Manage 2002;23:517–25. [7] Wester F. Strategieën voor kwalitatief onderzoek [Strategies for qualitative research]. Bussum: Coutinho; 1995. [8] Glaser BG, Strauss AL. The discovery of grounded theory. Chicago: Aldine; 1967. [9] Blumer H. Symbolic interactionism. Perspective and method. Englewood Cliffs: Prentice-Hall; 1969. [10] Nooij ATJ. Sociale methodiek. Normatieve en beschrijvende methodiek in grondvormen [Social methodology. The basics of normative and descriptive methodology]. Leiden, Antwerpen: Stenfert Kroese; 1990. [11] Rubin HJ, Rubin IS. Qualitative interviewing: the art of hearing data. Thousand Oaks: Sage; 1995. [12] Patton MQ. Qualitative evaluation and research methods. Newbury Park: Sage; 1990. [13] Galbraith S. The ‘no lose’ philosophy in medicine. J Med Ethics 1978;4:61–3. [14] Siegler M. Pascal’s wager and the hanging of crepe. N Engl J Med 1975;293:853–7. [15] Gracia D. Ethical case deliberation and decision making. Med Health Care Philos 2003;6:227–33. [16] Akkerman AE, Evers WJM, Ten Have HAMJ, Kollée LAA, Gordijn B. Evaluatie van ethisch overleg in de neonatologie. Moreel beraad nader onderzocht. [Evaluation of moral deliberations at a neonatology ward. Moral deliberation: a closer investigation]. Tijdschr Geneesk Ethiek 2001;11:40–5. [17] Steinkamp N, Gordijn B. Ethical case deliberation on the ward. A comparison of four methods. Med Health Care Philos 2003;6:235–46. [18] Hermsen MA, Ten Have HAMJ. Moral problems in palliative care practice: a qualitative study. Med Health Care Philos 2003;6:263–72.
Decision-making in palliative care practice and the need for moral deliberation: a qualitative study Maaike Hermsen∗ , Henk ten Have Department of Ethics, Philosophy, and History of Medicine, University Medical Centre Nijmegen, 232 EFG, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands Received 15 June 2003; received in revised form 2 March 2004; accepted 15 March 2004
Abstract The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care. It is not clear how caregivers deal with these moral problems. In this article, we focus on the decision whether to continue treatment or to withhold it, and discuss the way caregivers deal with this question amongst themselves and in communication or consultation with the patient. We look at moral deliberation, the process of identifying the crucial arguments for this decision in palliative care. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Palliative care; Decision-making; Moral deliberation
1. Introduction
2. Methods
The development of palliative care is increasing the interest in the moral problems that arise in the practice of palliative care [1,2]. The multi-professional nature of palliative care, the difficulties of caring for the terminally ill, and the complicated medical and nursing problems involved, combine to foster a particular sensitivity to moral problems in many palliative care professionals [3,4]. Earlier studies [5,6] have identified and explored these moral problems in palliative care. These studies have not made it clear how caregivers deal with the moral problems that arise in health care practice, nor is it known if the decisive arguments differ between health care environments, and—if they do differ—how they differ. In this article, we compare various palliative care environments. We focus on two aspects of the decision to (dis)continue treatment, and discuss the ways in which caregivers deal with these problems. We analyse the considerations and arguments relevant to the (dis)continuation of a treatment. Then, we discuss the way in which the palliative patient is informed about, and takes part in, this discussion. Finally, we analyse the value of, and the need for, moral deliberation, that identifies the arguments that are crucial for each such decision in palliative care.
There are a variety of research methods available to investigate the specific moral considerations and arguments that are crucial to action and decision when palliative caregivers are confronted with moral problems. This contribution describes the results of 15 qualitative, semi-structured interviews with caregivers working in five different environments: the medical oncology ward of a general hospital, the medical oncology ward of a university hospital, a hospice, a nursing home and a general practice. The moral problems mentioned earlier are encountered in all five environments. To get a broad overview of these topics, we not only looked at different environments, but also interviewed a range of professionals (doctors, nurses and attendants). The interviews took place in February and March 2002. The lengths of the interviews varied from 1 to 1.5 h. We constructed a list of relevant topics that were to be covered during the interviews, based on earlier systematic studies [5,6]. In this sort of qualitative research, such a list is called an interview guide [7]. Because this was an open investigation (the sort of data that was going to be necessary to allow us to answer the purpose of the interviews was not clear beforehand), the guide was useful in structuring the interview. The interviews have been analysed as follows. First, the ‘moral reality’ was extracted and reconstructed from the perspectives of the interviewees, expressed in their own language (‘the actor’s point of view’ or ‘the inner perspective’)
∗ Corresponding author. Tel.: +31-24-3615320; fax: +31-24-3540254. E-mail address: [email protected] (M. Hermsen).
0738-3991/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.03.013
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[7,8]. This involved transcribing the interviews and subsequently attaching specific codes to various segments of the text. The basic question was, what phrases and concepts did the interviewees use to identify ways of dealing with moral problems? This sort of ‘moral reality’ can be unfolded and conceptualized in so called ‘sensitizing concepts’ [9,10]. Meaningful concepts identified by the interviewees had to be classified in terms of the researchers’ (authors’) ideas of morally relevant considerations and arguments. This required repeated analyses of, and reflection about, the research material [8,11,12]. The results of the interviews are described further. Three caregivers per palliative care setting are not enough to allow us to draw reliable and general conclusions about the settings individually. Thus, we first focus on general morally relevant arguments, valid for all environments. Next, we highlight differences between environments. The two hospital environments turned out to be nearly identical, and we have lumped them together. We will first consider the arguments bearing on the (dis)continuation of treatment and proceed to the question of communication with the palliative patient. The discussion is illustrated with quotations from the interviews.
3. Results 3.1. (Dis)continuation of treatment The interviewees mentioned the following general moral arguments as involved in the (dis)continuation of treatment. All the caregivers working in the five different environments thought that it was important to recognise the autonomy of the patients and of their relatives. Access to detailed and clear information is a precondition for the patients and their relatives to be able to make an autonomous decision about the benefit of a certain treatment. After all “the quality of the information available determines the quality of the choice the patient is able to make”, a hospice nurse explained. The interviews made it clear that the autonomy of patients is becoming an increasingly important factor in decision-making in palliative care. Patients are becoming less inhibited about expressing their wishes and preferences, and doctors are paying more attention to the wishes of patients than they did in the past. A general practitioner gave an example where he’d acted as an advocate for a patient with a particular demand. He argues that caregivers should focus on finding out what are crucial values for the patient: [a patient, authors] “was very freedom-loving, he wouldn’t be tied down. I’d mentioned to the internist that the patient was planning to go on holiday and that he wouldn’t accept a regular schedule of visits to the hospital. The internist could bear this in mind.”
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All caregivers working in the five different environments mentioned that the autonomous wishes of patients and their relatives are relevant in decision-making in palliative care. Caregivers working in the nursing home—where patients are more likely to be totally or partially incompetent, tend to lay the emphasis on the wishes the patient would have had when competent. In the next sections, we will focus on the questions about decisions about the futility of a treatment, raised specifically in the various environments. 3.1.1. Hospitals In the hospitals, the crucial factors are the assessment of the medical feasibility of a treatment and the social and psychological capacity of patients on the other hand. The balance of these factors determines whether a treatment will be continued or abandoned. The aims and consequences of a treatment have to be made clear, and it has to be decided what is medically–technically achievable. Then a judgement has to be made about whether the patient will be able to tolerate the treatment; the psychosocial aspects of the patient’s situation have to be clarified. Consequently, “we have to judge whether the patient and their relatives will be able to tolerate a treatment of this intensity. [. . . ]. It is important to regularly evaluate this social and psychological capacity”, a doctor of the general hospital states. Part of this judgement involves regular evaluation of the quality of life of the patient. Patients push out the frontiers all the time because their will to live can be very strong, but eventually further treatment is going to start degrading their quality of life and at that point further treatment is contra-indicated. The interviews made it clear that the question of whether to offer a patient a futile treatment, or the continuation of a futile treatment is an issue for doctors and nurses working in the hospitals. It is also clear that non-medical considerations might motivate specific (non-)treatment decisions. In general, when the treatment is futile—when the probability of remission is minimal—the doctors felt that it should not be offered to the patient as a real possibility. However, sometimes when a treatment is futile the doctors will still offer their patients a last chance. In these cases the motivation is psychological rather than medical; the decision to discontinue the treatment is being postponed in order to give the patient the time to get used to the fact that the treatment is useless. Patients need that last chance because they are clutching at straws. When the patient eventually realises that the treatment is ineffective, they take the initiative in bringing it to an end. In that case “the decision to stop the treatment becomes their own decision and that is an advantage”, as a nurse indicated.
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In practice, patients rarely ask for treatment to be stopped. Thus, the effect of this ‘last chance policy’—and this is a recent development, as one of the nurses of the general hospital explained—is that treatment is rarely discontinued and patients nowadays die while still being treated. 3.1.2. Hospice In the hospice the crucial factor in the (dis)continuation of a treatment has been described by one of the interviewees as the ‘readiness to die’. A reason to continue a treatment would that a patient and their partner had not had the opportunity to say goodbye to each other. Caregivers were more often inclined to give a patient a blood transfusion when they had yet not accepted that they were going to die. In the hospice, the question whether or not to treat and manage pain and other symptoms is a frequently recurring issue. Because effective pain relief and similar symptomatic treatments can shorten a patient’s life, decisions about whether to treat pain and other symptoms or whether to (dis)continue a treatment have to be made very carefully. These decisions involve very difficult discussion with patients and their relatives. 3.1.3. Nursing home As mentioned earlier, during the interviews all caregivers emphasised the importance of the autonomous wishes of the patient in making decisions about the futility of a treatment. However, the majority of the psycho-geriatric patients admitted to the nursing home are partially or totally incompetent. This complicates the decision about whether to continue a treatment. The caregivers working in the nursing home explained that there are, nevertheless several ways to determine whether continuing a treatment is appropriate. Intensive observation of the patient can be useful; trying to interpret the reactions of a patient to determine whether it is worthwhile to continue treating an infection or to give an injection, for example. The aim is to estimate the quality of life of the patient as they degenerate. It is also possible to reconstruct the wishes of the patient from what is known about the patient’s wishes expressed when they were competent. The aim is to make a well-considered decision for the good of the patient in consultation with the patient, the doctor, the attendants, and the relatives of the patient. Age can be an important criterion in determining whether to continue a treatment; active treatment is more likely for the vital young patients than it is for the older patient who is exhausted and close to death. A nursing home doctor explained that it is important not to act too ‘situationally’; it is necessary to take account of the possibilities for amelioration and of the perspective of the patient. “Both psycho-geriatric patients, and somatic patients, lose the will to live when they have fallen ill.” Bystanders— relatives of the patient as well as nurses—become scep-
tical about whether you should treat the patient. “But my experience is that when people finally do recover, they do want to live longer.” That is why you should not acting too situationally. “You always have to look for treatable causes; for example, depression can often be treated very effectively and may not be an expression of a well-founded wish for death.” In literature this discussion about acting not too ‘situationally’ is known as the ‘no lose’ philosophy [13,14]. In the nursing home the debate about (dis)continuing treatment takes a different form than it does in hospitals, though the logic is much the same. In the nursing home an assessment of the medical feasibility of a treatment takes place at admission. At this point it is determined what kind of policy will be pursued—curative, palliative or symptom management. This sort of anticipation is a necessary part of planning the long-term care of the patient. A nursing home doctor explained it as follows: “when a patient comes in septic shock, I am not worried if the patient has been assigned to symptom-management. It is clear that the patient is to be allowed to die. The only thing I do in that case is to find out whether the patient is comfortable or not.” This decision is made at admission, when similar decisions are also made about advance directives and about resuscitation policy. 3.1.4. General practice The following specific moral arguments for the (dis)continuation of a treatment are identifiable in the interviews with general practitioners. The general practitioners mentioned striving for the highest possible quality of life as an important consideration. The interviews did suggest that the general practitioner is more reluctant than the hospital specialist to propose that the whole technological armoury be brought into play in pursuit of the highest possible quality of life. The general practitioner is modest about his own role; what can he do? Is he able to endure the emotional demands of the situation? The general practitioner also has to assess the capacities of the relatives of the patient; are they equal to the situation; what can they manage? The general practitioner has an overview of the situation in the patient’s home that the hospital internist lacks; he is familiar with the family of the patient who are often his patients as well. This familiarity enables him to make a better assessment of the emotional capacity of the relatives than is available to hospital specialists. 3.2. Communication In this section, we concentrate on communication with palliative patients. First we identify the general points made by all the caregivers. Then we highlight specific arguments.
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Five general points could be identified: preliminary work, the right to information, breaking bad news, the persons present and the importance of education. Preliminary work is required before it is possible to make any decisions in communication with palliative patients (for example, are the caregivers to inform the patient about his illness? And if so, in what way?). It is necessary to find out how much the patients already know about their own illness and to get some idea of their background. What has the patient already endured? It is also important to make an assessment of what the patients would like to know, what their expectations are, whether these expectations are realistic and what are their powers of comprehension. The interviewees also emphasised the importance of assessing of the extent to which the patients have accepted their illness—are they in denial, angry or resigned? Informing the palliative patient is another important preliminary to making a decision in communication with the palliative patient. In general, caregivers are inclined to consider it their duty to inform patients about their illness, although some caregivers provide more information than others. One of the nurses from the academic hospital claimed that the patient has to be fully informed about his illness and about treatment options: “the patients have to have this information before they can make a rational decisions.” The patients should be told everything they would like to know about their situation. After all, when caregivers fail to discuss all possible scenarios with patients, they take away the patient’s right to autonomy. Other caregivers were more reserved in giving all information to patients. A hospice doctor explained it as follows: “communication is the same as medication: it is not good when you give too much. When a patient has got a stomach bleed you are not going to tell them that one of the complications of cancer can be that subsequent metastases could cause blindness, deafness, etc. You do not have to tell the patient everything.” Most caregivers claimed that they opted for a middle course. Caregivers have to offer patients realistic treatment options and alternatives; they present the patient with a limited selection from the total range of possibilities. It is not necessary to give all available information to patients; patients are quite capable of making an autonomous choice between a feasible set of options. Some patients indicate that they do not want to be informed about their situation. In that case the patient’s autonomy is invested in the right not to know. The process of breaking bad news and informing patients about their prognosis is closely related to the patient’s right to information. In general, caregivers are cautious about breaking bad news. They emphasise the need to be realistic and not to give the patient false hope, but caregivers often
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do not themselves know the course of the illness and do not have to take away the patient’s last hope. This is why caregivers tend to be cautious and restrict themselves to vague generalities. Several of the interviewees remarked that bad news conversations often have to be followed up with worse news conversations. This can happen when the clinical situation gets worse and new decisions have to be made or when the relatives who take care of the patient are no longer able to cope. These conversations are always influenced by the way the patient deals with his own deterioration and loss of function. A nurse from the general hospital described an unsatisfactory bad news conversation as one that takes place in a four-person room rather than a private room, in amongst the normal daily activities. All interviewees agreed that these conversations should not be restricted to just the doctor and the patient. They felt that the patient’s relatives and a nurse or attendant should also be involved. The specific role of nurses or attendants was frequently emphasised. After the doctor has given the medical information to the patient, the nurses or attendants can, for example, repeat the message at a more comprehensible level using less technical language. In most cases, nurses are more approachable and accessible to patients and relatives than are doctors, and patients tend to direct their questions to nurses rather than to doctors. In addition to this, nurses act as guardians for the patient; they are present when appointments are being made and can make sure that the persons involved stick to their promises. One of the nurses working in the general hospital: “You are more or less the partner of that patient. You take part in the conversation in that role. [. . . ]. You find yourself almost going to sit beside the patient. To support them.” Nurses explained during the interviews that it was easier to take care of patients when they had been present when the doctor had told the patient about their situation. One frequently mentioned point was the importance for caregivers of education in communication skills. Aspects of this education are learning to break bad news, how to confront the patient with the changing scenario from curative to palliative, learning how to listen to the patients’ wishes from the patients’ point of view and learning how to ask open questions. The broader skills of supporting the patients in their coping process and in managing their so-called ‘unfinished business’ were also seen as needing to be developed. The technique for working together with colleagues in a multidisciplinary team came up as another skill where instruction could be useful—the importance of reporting thoroughly was frequently underlined. Several of the interviewees felt that more attention should be paid to these subjects in education and training. These aspects of communication were mentioned in all five environments. Other aspects were specific to the hospice, to the nursing home or to general practice.
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3.2.1. Hospice In the hospice, the transition from sickbed to deathbed has already been made; so breaking bad news has a different character than it does in the hospital; patients are already aware of their diagnosis and prognosis. An example of breaking bad news in the hospice would involve telling the patient that more metastases had been found. In the hospice, the ‘unfinished business’ aspect of the communication with the patient comes up more frequently. Subjects that have been left undiscussed in the hospital (like talking about impending death) or in the family (such as unresolved quarrels with children or siblings) often come up at the deathbed. According to a hospice nurse, people have to “finish such business” before they are ready to die. Another aspect of communication that is characteristic of the hospice is the search for connectedness between caregivers and patients at the end of life. Caregivers feel powerless when patients reject contact. It is also difficult for caregivers when dying patients are unready to accept their death; acceptance is a part of the idea of the good death in the hospice and caregivers try to communicate this to the patients. Lack of time can be a problem in the hospice. When communication and personal contact does not go well—for example, when a patient is playing nurses off one against the other—caregivers do not have the time to adjust to this situation. One of the hospice nurses: “I think that we are sometimes too sweet about this. Actually, that [playing out nurses to one and another, authors] is not pleasant, and you have to do something about it. When the prognosis is for longer survival, we work at it seriously, in a way that we can’t when the patient is going downhill rapidly.” 3.2.2. Nursing home In the nursing home, the limited competence of patients is the crucial factor in communication. Depending on the competence of the patient, caregivers have to react and communicate very differently. One of the caregivers distinguished between providing information to patients and their relatives on the one hand and social contact and caring for patients on the other hand. When providing information, caregivers communicate either with patients themselves or with a representative of the patient (in most cases a member of their family), or with both. Breaking bad news is inherent in providing information, but in the nursing home this has specific characteristics. An example of breaking bad news in the nursing home is telling the relatives that a patient who was admitted to the hospital with a broken leg or hip after a fall is no longer eating and drinking or has to be restrained to manage their restlessness. Caregivers explained that you can never be sure that the incompetent (or the partially competent) patient has understood the information given. Having the patient repeat the information can be helpful. In the somatic wards of the
nursing home, information is always given in the presence of the patient. Because patients are residents of the nursing home, there is often a long-standing relationship between them and their caregivers, which can extend to the relatives of the patient. Relatives are indispensable; they are often the only people who can provide information about a severely demented patient. One of the nursing home attendants explained: “family are very important; we have to rely on them for a lot of the information we need. They are a continuation of the resident.” In the nursing home, social contact and caring for patients are determined by specific care policies. Basically speaking, a difference can be made between ‘reality-oriented training’ on the one hand and ‘validation’ (empathising with disoriented patients) on the other. It can be difficult for caregivers to assess how to deal with disoriented patients, due shortages of time and personnel that can require that patients be physically or pharmacologically restrained. One of the caregivers mentioned that over the course of the day the restlessness of patients increases and the number of personnel available decreases. This degrades patient care; the resources available have to be concentrated on primary care. 3.2.3. General practice In general practice the typically long-standing contact between general practitioner, the patients and their relatives leads to specific communication patterns. The general practitioner’s assessment of the situation is part of the process which determines how much information is communicated to the patient. One of the general practitioners mentioned that he used to tell patients the whole truth, but that he is more reserved nowadays. “For many people the whole truth can be very hard to grasp, so I adjust my words to the particular situation. [. . . ]. I make an assessment of how much people are able to bear. That assessment may lead to situations where I might tell patients nothing. [. . . ]. Sometimes I make the decision for the patient, by presenting one option as the best one. [. . . ]. This has to do with the way that I remember patients dealing with difficult situations in the past.” There are several ways such long-standing contact can influence the breaking of bad news to the patient. One of the general practitioners explained that he rarely told a patient about the diagnosis until the patient asked for it. The only exception was to inform the patient of the diagnosis when the general practitioner thought that the diagnosis suggested that the patient’s activities in the community might be disrupted. If the patient owned a big store, for example, he would want to arrange things in advance to avoid unexpected problems for his partner or his widow. One of the general practitioners preferred that the specialist gave the patient the bad news. Not only is the specialist better able to present the diagnosis to the patient, but
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this keeps the general practitioner out of focus at a stressful time, which makes it easier for a dying patient to count on the general practitioner for support to the end of life. The relationship between the general practitioner and the partner or relatives of the patient is an important factor in preferences for a particular communication pattern. It may lead to confusing situations when the partner or relatives of the patient decide not to pass the information on to the patient. Another aspect of this relationship is that the partner or relatives of the patient are frequently also patients of the general practitioner. When the general practitioner visits the patient at home, the relatives may also be there. Sometimes it is necessary for the general practitioner to invite the relatives of the patient to come to the practice alone, for example, when they are no longer able to deal with the situation. 3.3. Moral deliberation in palliative care What moral arguments are involved in labelling a treatment medically futile and what relevant arguments can be distinguished in the communications with palliative patients? These issues have been discussed earlier. It is important to understand these moral arguments, because they form the basis of the decision. It is equally important to focus on the shared process of decision-making—nobody makes these decisions on their own and it is universally accepted that they have to be made jointly, after careful deliberation. Moral deliberation can be seen as a method of thorough decision-making in palliative care because it focuses both on making arguments and considerations explicit, and on the shared process of decision-making. Deliberation can be considered as the process of reflecting upon decisions in a way that will eventually lead to a wise and prudent choice. It is a dialog based on mutual respect. “The deliberation process requires careful listening [. . . ], an effort to understand the situation at hand, analysis of the values involved, rational argument of the possible courses of action and of the most appropriate one [. . . ]” ([15], p. 230). By analysing the case and thoroughly weighing up the factors relevant to a specific patient, the various team members can come to a well-considered decision. The interviews suggest that caregivers see a need for moral deliberation in palliative care. The majority of the caregivers (87%) favour moral deliberation. They believe that it can offer a contribution for the following reasons. For example, in the urgency of an acute situation, decisions are often taken hastily, without careful justification. One of the general practitioners explained that the reality was often over-simplified in order to justify hasty, ill-founded decisions: “the reality has been simplified and redefined to make problems easier to solve.” The expectation is that moral deliberation can facilitate and improve decision-making processes in palliative care practice. By explicitly reflecting on personal values, emo-
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tions and prejudices it is possible to clarify moral choices and set them on a firm foundation. Further, caregivers expect that communication between colleagues, and with patients and relatives, will be improved if caregivers are better equipped to justify their decisions. One of the hospice nurses expected that formalising moral deliberation would make caregivers better prepared for case discussions, better listeners, more likely agree amongst themselves and would lead to smoother interactions. These expectations have support in the literature [16,17]. Moral deliberation—in which attention has been paid not only to medical factors but also to the nursing, ideological and organisational factors relevant to the case—offers the possibility of doing justice to a patient’s narrative, in which all relevant facets are taken into account. All caregivers in favour of moral deliberation had the impression that with training, (post-graduate) courses, clinical lessons, theme or case discussions, it should be possible to demonstrate and learn the methods and principles of moral deliberation in palliative care practice. The only argument against implementing moral deliberation would seem to be the time it consumes. Two caregivers were sceptical about the implementing of moral deliberation in palliative care practice. They did not consider it a necessary improvement because the choices and decisions that were being made in palliative care practice were already well founded: “it is always clear why we choose a certain policy”, a nursing home attendant explained. “All the decisions have been made for the right reasons; the communication is good. That is why we do not need moral deliberation on the shop floor.”
4. Conclusion and discussion 4.1. Conclusion The general and specific characteristics and arguments underlying decision-making, communication and the need for moral deliberation are listed in summary in Tables 1 and 2. Table 1 General characteristics and arguments underlying treatment decisions and communication Hospital/hospice/nursing home/general practice Treatment decisions
Respecting the autonomous/reconstructed wish
Communication
Preliminary work: advanced knowledge, expectations and background of the patient Right to information Breaking bad news Persons present Education in communication skills
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Table 2 Specific characteristics and arguments underlying treatment-decisions, communication and the need for moral deliberation, classified per environment Hospital
Hospice
Nursing home
General practice
Specific characteristics
Admission for a short period
Admission for the last days/weeks
(Partial) incompetence/ nursing home residents instead of patients
Long-standing contact with patients and relatives
Treatment decisions
Assessment of: Medical feasibility
‘Readiness to die’ (acceptance of death)
Reluctant to pursue the highest possible quality of life
Social and psychological capacity
Pain and symptom management: what happens in long run?
Alternative ways to determine the feasibility of a treatment (e.g. intensive observation) Preliminary decisions at the moment of admission
Communication depends on competence: (a) Information (relatives)
Assessment and overview of the home situation Relationship with relatives
Assessment of the emotional capacity of relatives
Evaluating quality of life Offering or continuing a futile treatment? Communication
Moral deliberation
Information about treatment options Breaking bad news about a diagnosis and poor prognosis
Positive
‘Unfinished business’ Search for connectedness/acceptance of death Lack of time
Positive
4.2. Discussion In this qualitative study, we examined how caregivers deal with moral problems in palliative care practice. Fifteen qualitative interviews with caregivers working in five environments were used to collect the data for this study. The moral arguments underlying (dis)continuation of treatment and the basis of communication strategies with palliative patients have been identified. From the results of the interviews it can be seen that many of these considerations and arguments are the same in the different environments. Several factors which can lead to a treatment being labelled medically futile, or to influence choices in the communication are equally decisive in all five environments (for example, respect for the autonomous wishes of the patient, and the right to information). Decisive arguments about treatment and communication that are specific to the different environments have also been identified. Some of the moral problems confronting palliative caregivers in daily health care are intrinsic to the environments where palliative care is provided [18], and the morally relevant arguments underlying these problems and motivating practical decisions are also intrinsic to these environments. In the hospital, patients are generally admitted for a short period to undergo a treatment. In this environment assessment and evaluation of the medical–technological possibility of a treatment and of the social and psychological capacity of patients is the crucial factor in making decisions about the futility of a treatment. How to break bad news about a poor prognosis is a determinant in making choices
(b) Social contact and caring (reality oriented training or validation) Positive
Positive
in the communication with palliative patients admitted to the hospital. Because a hospice is a place in which patients spend their last days or weeks, the ’readiness to die’, the comfort of patients (keeping them pain- and symptom-free), and the little time left are examples of decisive considerations and arguments for treatment and communication. The (partial) incompetence of patients living in a nursing home influences the decision whether a treatment is futile or not and also influences decision-making in communication; the relatives of the patient play a crucial role in the transfer of information. In general practice the general practitioners’ often long-standing contact with patients and their additional obligation to deal with the relatives of the patient tend to be crucial. Finally, the contributive role of, and the need for, moral deliberation, which identifies arguments that play a crucial role in practical decision-making in palliative care, have been analysed. The majority of the caregivers emphasised the need for moral deliberation. One of our findings is that many of the considerations and arguments underlying moral problems and motivating practical decisions are specific to the environment. Because moral deliberation makes these morally relevant considerations and arguments explicit, we conclude that moral deliberation probably can facilitate and improve decision-making in palliative care practice. 4.3. Practice implications Because palliative care is expanding rapidly and—as a consequence—traditional ways of working sometimes have
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to be modified, caregivers are being continuously challenged to be creative in taking decisions. When cure is no longer possible, it is important to consider all the available treatment options and to make the policy transparent for patients, relatives and colleagues. Striving for the highest quality of life at the end of life is best facilitated by a shared process of decision-making. In a follow-up study moral deliberation will be implemented in various palliative care environments. We hope to be able to find clear evidence to support the hypothesis that moral deliberation does facilitate and improve decision-making in palliative care practice.
Acknowledgements We would like to thank the Dutch Ministry of Health, Welfare and Sport for funding the COPZ (Centre for Development of Palliative Care) Project, which sponsored the research project ‘Practical Ethics of Palliative Care’, of which this paper forms a part. The authors are grateful to Valesca Hulsman and Bill Sloman for constructive comments in editing this manuscript.
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