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Decision-making in nephrology: shared decision making?
Patient Education and Counseling 39 (2000) 81–89 www.elsevier.com / locate / pateducou
Decision-making in nephrology: shared decision making? Annique Lelie M.M.S., M.A.* Department of Ethics, Philosophy and History of Medicine, Faculty of Medical Sciences, Catholic University Nijmegen, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands Received 10 January 1999; received in revised form 19 July 1999; accepted 26 July 1999
Abstract Shared decision-making is considered an important ideal for physician–patient interaction. The ideal states that health-related values should be discussed together. It raises two questions: (a) for which decisions is the ideal of shared decision-making relevant? (b) Which aspects of treatment should be discussed? The nephrological practice under consideration in this article answers question (a) as follows: decisions about the type of dialysis are shared decisions, while decisions about the moment to start dialysis are medical decisions that should be taken by nephrologists. This situation can be criticized as important health-related values play a role in decisions about starting dialysis. Question (b) is answered in the nephrological practice under consideration by discussing at least all important health-related aspects that raise uncertainty about its worth for a patient. This approach to question (b) is morally and practically defensible. 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Physician–patient communication; Nephrology; Shared decision-making
1. Introduction Many physicians nowadays subscribe to forms of ‘shared decision-making’ with their patients as the ideal way to come to treatment decisions. Shared decision making means that doctor and patient deliberate about the main aspects of treatment possibilities and finally come to a shared decision. Consequently, sharing a decision bridges the power gap between physicians and patients [1,2]. The changing nature of medical practice from acute to chronic care *Tel.: 1 31-24-3613-104; fax: 1 31-24-3654-0254. E-mail address: annique.lelie@alg / tf.wau.nl (A. Lelie)
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just reinforces the demand for well informed patients, working together with their physicians in order to find the optimal treatment in the abundance of new drugs and therapies [3,4]. However, it is not yet clear what exactly is meant by ‘shared decisionmaking’ [4]. From the perspective of physicians at least two questions arise: (a) for which decisions is the ideal of shared decision-making relevant? (b) When the ideal is deemed relevant, which aspects of treatment should be discussed? Yet, medical practice can not wait for answers. It must find ways to deal with these topics. Central questions in this article, therefore, are: how do nephrologists deal with the ideal of shared decision making and the questions it
2000 Elsevier Science Ireland Ltd. All rights reserved.
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raises, and how can their practice be evaluated? A brief sketch of the ideal of shared decision-making, will be followed by the results of a study on physician–patient interaction in nephrology. It will emerge that both ideal and practice can benefit from the comparison between the stated ideal and norms in nephrological practice.
2. The ideal of shared decision-making In 1956, Szasz and Hollender were among the first to recognize the need for a new model for the physician–patient relationship, especially for patients with chronic diseases. They proposed a model of ‘mutual participation’ in which the physician helps the patient to help himself [5]. Proposals such as this were, however, at first instance superseded by democratic developments stimulating autonomy of patients and contractual approaches to the physician–patient relationship. Only recently critics of ‘the autonomy paradigm’ or ‘contractualism’ and its legalistic aspects picked up the idea of mutual participation and developed it into ideals of shared decision-making [3]. Especially one specific interpretation of contractualism, called the mechanistic, informative or engineering model of physician–patient interaction elicited critical reactions [6]. This model stipulates that a physician should inform a patient as adequately as possible, but leave decision-making entirely to the patient [7]. A strong argument for this model was provided by studies showing that physicians are often poor judges of what their patients want [8,9]. The engineering model raised practical and moral problems, such as: how could one adequately and neutrally inform a patient? It was shown that the way patients are informed highly influences the ‘choices’ they make [10,11]. Another issue was: why is the physician not allowed to advise the patient what he or she thinks best? Physicians may sometimes have a better sense of probabilities and risks [12]. Furthermore, it was shown that while patients might have a high desire for information they do not want to make decisions on their own [13,14]. Questions and criticisms like these paved the way for new models that had an ideal of doctors sharing a decision with patients in common. Well-known defenders of an ideal of shared
decision-making, like Emanuel and co-workers state that patients and physicians have to cooperate by informing each other and discussing all important health related values [1,15]. The aim of a discussion is ‘‘to help the patient determine and choose the best health-related values that can be realized in the clinical situation’’ [1]. A basic assumption of the model is that patients’ preferences are not given but have to be developed during a decision-making process. In the end, patient and physician agree on the right treatment of the patient. This implies that they share responsibility for the final decision [4,15]. The defenders of the various shared decisionmaking models do disagree, however, on the advisory task of the physician: Emanuel and Emanuel state that a physician should aim at moral persuasion of the patient [1]. But Katz emphasizes the task of physicians to help patients choose for themselves what is best instead of persuading them of what the doctor thinks is best [15]. Others are not explicit on this point; they use terms like ‘respect and guidance’ [3]. So, many authors agree that the ideal has validity and offers a good alternative to the engineering model. However, some authors point out that the ideal is difficult to fulfil [12,16]. Sometimes patients or physicians are not completely rational or they refuse to spend time or money on shared decisionmaking. What is more, Deber et al. concluded that many patients prefer to leave the problem solving tasks — such as making a diagnosis and determining risks and probabilities — to their physicians, but only want to participate in choosing between alternative therapeutic options [14].
3. Methods The observations presented here are based on qualitative research on the interactions between nephrologists and patients discussing dialysis therapy for kidney failure. They form part of a larger study on normative aspects in a nephrological practice. The specialty of nephrology was chosen because it concerns a practice area in which physicians often have prolonged relationships and ample opportunity for shared decision-making with their chronically ill kidney patients. The setting is the nephrology out-
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patient clinic of the Academic Hospital Nijmegen St. Radboud in The Netherlands. The nephrology department in this hospital consists of an out-patient clinic (about 3500 visits a year, 300–350 new patients a year), a nephrological ward (18 beds) and a dialysis unit. About 35 hemodialysis patients are treated in this unit, a few patients are on homehemodialysis and about 20 on CAPD (peritoneal dialysis). The out-patient clinic is visited by patients with a kidney disease, patients on peritoneal dialysis and patients with a functioning kidney transplant. In Nijmegen 100–125 kidney transplants are performed each year. Patients with a kidney disease whose kidney function gradually deteriorated and who were expected to start dialysis sooner or later were of interest for this study. Most of these patients were grouped together on one morning per week for consultation by the dialysis resident. The consultations were attended. The methods involved observations and note taking during consultations and weekly patient-discussions, informal questioning of the physicians about the decision-making process immediately after the patient’s visit as well as the study of patient charts, letters and other written material. Patients were not interviewed. Informed consent was obtained through the patient’s physician, immediately before consultation. None of the patients and physicians refused participation. Fifty-nine interactions between patients and nephrologists were thus observed in which dialysis was discussed. Thirty patients, four nephrology residents and one attending nephrologist participated in the interactions. The results described in this paper were obtained in 1994, 1995 and 1996. Identification of general practical rules, norms, and values underlying therapeutic decisions was the aim of this study. It focused on what the physicians consider to be good usual care. Specific attention was paid to evaluative (i.e., normative) utterances during conversation such as: ‘‘you should think about this’’ and ‘‘I should have discussed this earlier’’. Personal opinions of physicians were separated from more commonly held views by studying the behaviour of different physicians in their contacts with the same or similar patients and by comparing the answers of physicians on questions of the observer. The outcome of this fieldwork is a descrip-
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tion of the normativity of decision-making processes concerning dialysis. It does not describe in exact numbers how often things happened, but what the underlying norms were. It also was not an aim of this study to check out how often practice deviated from underlying ideals or norms.
4. Results In the interactions with patients in end-stage renal disease two central decision-making processes came to the fore: decisions had to be taken about the type of dialysis therapy and about the moment to start dialysis. The underlying normativity of those decision-making processes is worked out in the following. First, major normative aspects will be presented. Subsequently, specific normative evaluations underlying the interactions with different categories of patients are discussed.
4.1. Choice of therapy The Nijmegen nephrologists present the choice of dialysis as a choice the patient him or herself has to make, e.g., by explicitly mentioning that they should make their own choice (twice during the fieldwork) and by emphasizing the importance of a good motivation (twice). To stimulate an informed choice the nephrologists try to find out what a patient’s considerations are by asking whether they have any questions or by asking what they think. The nephrologists prefer to commence the information process many months before the expected actual start of dialysis. Best is, in their view, if the information is gradually conveyed and detailed, especially when it concerns the practical consequences of therapy. Feelings, expectations and views of patients are considered important for making a good choice. If time allows it, patients finally have to attend an extensive information session given by dialysis nurses. In 20 consultations the choice of dialysis therapy was discussed. In five consultations the nephrologist gave rather extensive information because the patient was still in the beginning of the information process. These discussions revealed that in the beginning of the information process the following aspects are
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considered important. Two kinds of dialysis therapy are available: peritoneal dialysis (CAPD) and hemodialysis. CAPD should be performed by the patient him- or herself, four times a day, taking half an hour each time. Hemodialysis should be done in the hospital usually three times a week, taking 3–4 h each time. Hemodialysis treatment will be performed by a nurse. (The option of home-hemodialysis did not have to be mentioned as this is only possible after following an intensive course during several months.) The physician should assess the patient’s need for information and his or her capacity to process information. The physician decides when the following aspects will be discussed. The most important risk of CAPD is peritonitis, which requires immediate treatment with antibiotics. A disadvantage of hemodialysis is that it can cause a hangover, especially during the first weeks of treatment. Patients have to be informed about the small surgical procedure that takes place before treatment can be started: for CAPD a catheter needs to be placed in the belly and for hemodialysis a shunt in one of their arms has to be created. For CAPD the patient’s home usually has to be adapted a little (CAPD requires a separate room and a good hygiene). This, however, is paid by the patient’s insurance company (mentioned only once). (In The Netherlands dialysis treatment is always covered by a patient’s insurance company, so according to the physicians this aspect does not have to be mentioned (during the fieldwork it was never part of the information process). It is considered ‘normal’ that patients do not have to pay for treatments, especially not for in-hospital treatments. However, some patients think that adaptation of their house for CAPD is not covered probably because it does not fit with their concept of treatment.) None of the patients were told that hemodialysis is more expensive than CAPD and that hemodialysis sometimes gives allocation problems as there are a limited number of dialysis machines available. As a consequence patients who choose hemodialysis sometimes have to be treated in another hospital than they prefer. Comparison of the context of the information process — the way information was given and the exact terms used — revealed that the physicians have at least three typical ‘ideal’ approaches to patients
related to three categories of patients: young and otherwise healthy patients (13 patients), older or (almost) terminally ill patients (4 patients) and patients with additional medical problems besides their kidney disease (9 patients). Those approaches will be discussed below. Of course overlap between categories of patients exists which sometimes gives difficulties in categorizing a particular patient. As a result 4 of the 30 patients could not adequately be categorized.
4.2. Relatively young and otherwise healthy kidney patients In the process of discussing dialysis therapy with the group of young patients the major underlying value assessment is usually not made explicit as the following typical example taken from the observations illustrates: Mr R. is 36 years old and known with a gradually declining kidney function not yet necessitating dialysis therapy. As a result of a surgical procedure on a knee, however, his kidney function rapidly decreases. When this appears from the blood examinations his nephrologist calls him at home to tell him that they ‘‘have to think about dialysis’’. He proposes a visit to the dialysis unit for further information and explanation. The patient already knows a little about dialysis from earlier discussions with the nephrologist and says he has a slight preference for peritoneal dialysis. The central underlying value assessment in this physician–patient encounter is that life with the burden of dialysis is better than an early death. This evaluation, however, is not discussed. Instead, the physician says that they have to think about dialysis. This means that the patient will die if he does not follow the dialysis regime. The possibility not to start dialysis is not discussed. The nephrologists and probably most patients would not see this possibility as an alternative needing any consideration. For young patients the nephrologists think CAPD is the best choice of the existing options. This preference is based on their own experiences with patients and on medical literature indicating that quality of life of patients on CAPD is better than of
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comparable patients on hemodialysis [17,18]. Now and then the attending nephrologist tells his residents that CAPD is preferred and stimulates them to let suitable patients choose CAPD. All nephrology residents followed in this study let this preference play a role in the physician–patient communication. The following interaction illustrates this: Mr T, 45 years old, regularly visits the outpatient clinic. He was informed by another physician about CAPD and hemodialysis. His new physician discusses dialysis with him in the following way: Physician: have you made a choice yet? Patient: I think . . . (he raises his arm as a sign that he thinks about a shunt and thus hemodialysis). Physician (surprisedly): Oh yes? We should take some time to talk about that later. Following this, the physician performs a regular checkup which involves discussing complaints, a physical examination and discussing further (drug) treatment. At the end of the consultation the physician returns to the subject of choosing a dialysis therapy in the following way: Physician: concerning CAPD, we should talk about that for a moment . . . and hemodialysis. Do you have questions about that? A short discussion follows, in which the physician answers questions about a shunt. Then she says there are no medical reasons not to choose CAPD. She explains the advantages of CAPD above hemodialysis in the following way. With CAPD Mr. T ‘is his own master’. He can perform the therapy at work. It gives him ‘more freedom’. Another advantage is that CAPD is a gradual process, 24 h a day. A choice for hemodialysis means that he is stuck to three times a week and he can have a hangover from dialysis. At the end of the discussion the physician proposes to have a talk with the CAPD nurse. The conversation with Mr T reveals several ways in which the physician tries to influence the choice of her patient. First, by being surprised and proposing to discuss it again, second by phrasing a choice for CAPD in attractive terms like ‘more freedom’ and ‘being your own master’, and third, by proposing a
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talk with the CAPD nurse. Such guidance of patients by physicians is allowed in this nephrological practice, but outright manipulation is considered a step too far as the following utterance of a nephrologist reveals: Physician (with dislike in his voice) about a patient who finally chose CAPD: ‘‘that man is not merely advised, he has been outright manipulated!’’
4.3. Older and severely ill patients When patients are older or are severely ill or handicapped, the Nijmegen nephrologists think they should explicitly discuss the option of not starting dialysis. This was the case with 3 patients older than 80 years and 1 younger patient in a bad mental and physical condition. In such situations the physicians did discuss the basic value assessment involved, because they doubted whether life with dialysis is better than death. The following case reveals many aspects of the underlying normativity that usually plays a role in cases of older or severely ill patients: Mr B is 86 years old when time has come ‘to think about dialysis’, as his nephrologist states it. He often visits the out-patient clinic with his son. He is a kind and intelligent person. Then his kidney function decreases rapidly. The nephrologist wants to talk about starting dialysis. At this time, however, Mr B does not understand much of the discussion. From the first question, he gives incoherent answers or starts to talk about an unrelated subject. Intoxication due to kidney failure possibly contributes to his mental state. During the discussion with Mr B and his son the physician phrases the following questions and remarks: ‘‘I would like to talk with you about dialysis. You are not so young anymore . . . ’’ ‘‘Actually, it should be done with everybody, but with people of your age it is more important, that they get acquainted with dialysis. Let’s see whether you feel better. Of course, that is what it is meant for.’’ ‘‘As a matter of fact, you have no choice, because if you do nothing you will die’’ ‘‘You would like to stay here for a while?’’ Mr
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B says yes, but starts to talk about sleeping tablets. ‘‘Of course we can always stop if things turn out badly’’ ‘‘It’s possible that things happen and that you want to stop. It’s good to think about that beforehand’’ ‘‘It is difficult to have a good talk about this now. You are too ill. We should discuss this again in 1 or 2 weeks’’ (when Mr B has probably improved from dialysis). After Mr B and his son have left, the nephrologist says to me that he should have initiated a discussion about dialysis much earlier. Although it immediately is clear that Mr B does not understand the questions and remarks, his nephrologist brings up many subjects. Why? Presumably, the physician wants to make clear to the son which subjects should be thought about in cases of elderly persons. He also reveals his criterium for continuation of dialysis once it is started, namely that Mr B must feel better. By this way, a later discussion about continuation of dialysis therapy is normatively framed before one word is said. For older patients the nephrologists do not have a common preference for one type of dialysis therapy. Much depends on the physicians assessment of a patient’s mental and physical abilities. For performing CAPD minimal visual acuity is required. This often is a problem with patients with diabetic nephropathy. Patients with dementia do not have the mental capacities to perform CAPD. Also the psychological make-up of older patients determines whether a nephrologist has a preference. Relatively independent and otherwise healthy elderly patients will be stimulated to choose CAPD, but older patients who are judged to need lots of social support might be better off with hemodialysis. The weaker the preference of a physician for a type of dialysis therapy the less he or she will try to influence the decision process.
from diabetes and its complications and 3 patients had cardiac problems. CAPD is preferred for these patients. One patient had a hemiparesis and could not perform his own therapy, so CAPD was not possible. Contra-indications are divided by the nephrologists into two groups: absolute and relative. Patients with absolute contra-indications are told that only one type of dialysis therapy is suitable for them, the other is not possible. For example, this is the case for hemodialysis when no access to the bloodstream can be made or for CAPD when no CAPD catheter can be placed. Relative contra-indications are a higher risk for problems with one type of dialysis (e.g., hemodialysis for patients with cardiac problems), a lower effectivity, or a higher chance of failure than usual (e.g., scars in the belly for CAPD). However, sometimes a relative contra-indication is ‘absolutized’ in order to influence the decision process as is the case with the following patient: Mr K, 61 years old, needs to start with dialysis very soon. He is referred to Nijmegen by another hospital. As a result of surgical procedures in the past he has many scars in his belly. CAPD will probably not be successful. In Nijmegen the nephrologists refer the patient for investigation of his cardiac problems. His coronary arteries are severely narrowed. This is a strong (but not absolute) contra-indication for hemodialysis. A little irritated one of the nephrologist explains how the communication with the patient proceeded: ‘‘At first, they [in the other hospital] told him that CAPD was impossible, because of the scars, now it is exactly the other way around. The patient really does not understand it anymore.’’ ‘Absolutization’ of contra-indications is considered wrong by the nephrologists. The severity of a problem or risk should be explained to a patient. According to the nephrologists, patients with relative contra-indications should be advised what to do, but finally have to make their own choice.
4.4. Patients with additional medical problems 4.5. The decision to start dialysis Some medical problems are contra-indications for some form of dialysis therapy. Nine patients could be categorized in this group. Five patients suffered
In 10 of the 59 consultations criteria for starting dialysis were explicitly discussed with either the
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patient or the researcher after the patient’s visit. From the way the physicians discussed this, the following norms are derived. The major normative judgment underlying the decision about starting dialysis is illustrated by the following dialogue: Patient: when does it [dialysis] have to start? Physician: that is very difficult to say . . . Under 5 or 6 we definitely have to start [5 or 6 refers to a measure of the kidney function]. Under 10 it depends on how one feels and on whether the blood results can be adequately controlled. The message of the physician in this dialogue is: blood examinations and symptoms of kidney failure are important for determining the moment of starting. The wishes, fears, preferences or convictions of the patient are irrelevant for this decision. So, it is a medical decision that should be taken by the physician. None of the patients in this study participated in the decision-making about starting dialysis. The physicians try to put off dialysis until they feel it can no longer be postponed without severe complaints for or danger to the patient. This was explicitly defended by 3 physicians. They consider dialysis to be a heavy burden for patients. A later start means a longer life without dialysis. As a consequence the physical condition of patients usually improves when dialysis finally is started. This might be beneficial to some patients as they become better motivated to carry the heavy burden of dialysis. This is a welcome but additional advantage of the policy to postpone dialysis as long as possible. Of course dialysis is an expensive therapy. Although all physicians are aware of this aspect, only one of them explicitly mentioned this as an additional reason to start dialysis as late as possible. However, for diabetics it might be useful to start earlier as this prevents problems related to uremia, such as neuropathy. Severe uremic complaints such as itching, nausea and tiredness also can be a reason to start earlier than necessary on strict medical grounds. The question when to start dialysis is now and then discussed during a formal or informal meeting with colleagues. The motive usually is a conclusion in the medical literature that an early start reduces medical problems [19]. As a consequence, nowadays
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dialysis is started earlier in the disease process than a few years ago.
5. Discussion In the medical practice studied here, shared decision-making partly plays a role in how physicians think decisions about dialysis should be taken. According to the nephrologists a decision about a form of dialysis should be a shared decision. Patients are sometimes explicitly invited to participate in the decision process. Medical aspects and major consequences for their lives (four times a day or three times a week, home or hospital, etc.) must be discussed. Moral persuasion is allowed and even viewed positively. Contrary to this, the decision to start dialysis at a certain moment, although an important decision in nephrology, was not regarded as a decision that should be shared. In the decision about the right type of dialysis therapy, not all important underlying value assessments are made explicit. An example of this is the high value of life for relatively young and healthy patients. What is more, discussions often have many normative aspects that are not discussed but function as a normative framework for deliberations with different categories of patients. An example is the one-sidedness of the information about dialysis; only information about the personal consequences of therapy for a patient’s life is revealed. The financial consequences for society or the shortage of organs are not discussed. Other examples of normativity are mentioning the subjects (stopping dialysis) or criteria (improved health after the start of dialysis) worth consideration or presenting one alternative in attractive terms, like ‘more freedom’. Such framing of decisions is supported by other studies [20,21]. Sullivan et al. have found in semi-structured interviews with 15 respirologists about intubation and mechanical ventilation for end-stage COPD patients that all physicians advocated a shared decision-making approach, but 14 of them admitted that they influence the deliberation process in order to guide the patient’s choice [22]. What do the results of this study of a nephrological practice mean for the ideal of shared decision-making? Two important questions will be discussed.
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5.1. For which decisions is the ideal of shared decision-making relevant? The choice of dialysis therapy was viewed as a shared decision. The nephrologists are aware of many non-medical aspects that play a role in this decision. On the other hand, the nephrologists in this study determined when dialysis had to start. The decision to start dialysis is a ‘medical’ decision. Personal experience of the author with a nephrological practice in Canada, however, revealed that the Canadian patients started earlier in their process of illness with dialysis, namely as soon as complaints like itching, nausea and tiredness were bothersome [23]. In Canada an important motivation for an early start was reduction of the physical damages of a low kidney function. The Dutch physicians in this study, however, focused more on the heavy burden of dialysis therapy. A later start is better as it means a longer life without dialysis and it possibly makes it easier for patients to carry on with the therapy. So, not only medical–technical aspects but underlying moral and psychological assessments of the quality of life with and without dialysis, the importance of the prevention of physical damage, and the way the physicians think patients can be motivated for dialysis play a role in determining the moment to start dialysis. Following the ideal of shared decisionmaking these important underlying assessments — as they reflect health related values — should be discussed. An explanation for the gap between ideal and medical practice could be that the importance of medical–technical aspects in the decision to start dialysis hides the non-medical aspects. No doubt that medical expertise is required for the decision about starting dialysis. This, however, does not mean that physicians should also automatically judge the importance of the outcomes of physical examinations and blood results.
5.2. Which aspects of a decision should be discussed? The ideal of shared decision-making states that underlying value assessments should be discussed. Should physicians discuss all evaluative aspects? This seems hardly possible as it will consume lots of time and energy. What is more, it can be doubted
whether this really satisfies a need of patients and physicians. The usual answer to the question which underlying value assessments should be shared is that all important health-related values (or value assessments) involved in the decision should be discussed with the patient [1]. Now, even this ideal is very difficult to fulfill as value assessments often unconsciously influence a decision process. Some important values and their assessments stay implicit, as we have seen in the information about dialysis therapy and in the case of Mr R. Should the physician be criticized for this? I don’t think so. It is unpractical and very difficult for physicians to become aware of all important underlying values especially if these values are not problematic. The following approach seems better. In some situations the physicians are aware of the importance of the values of life and death. This is the case when patients are old or terminally ill. For example, Mr. B’s physician doubts whether life is better than death for him. Uncertainty about an underlying value assessment prompts his physician to discuss it, not the mere presence of values. This is a better approach than the ideal of shared decisionmaking states. Those decisions and underlying value assessments are worth discussing that are possibly problematic for a patient. For example, not only decisions about starting dialysis but also their underlying values should be discussed, as the moment of starting dialysis has important consequences for the physical and psychological condition of patients. The approach to share those value assessments that are possibly problematic might in practice turn out as Deber’s suggestion to separate problem solving from decision-making [14]. An assumption of this approach to underlying values is that usually physician and patient assess many basic values similarly, e.g., the high appreciation of life in the case of Mr R. Time and energy can better be spent to extensively discuss decisions and aspects of decisions about which views might differ, e.g., the moment of starting dialysis, the financial consequences of different treatments, and the consequences of a choice for society and other dialysis patients. In the nephrology practice studied persuasion of patients is allowed or, more correctly, it should play a role in the decision process as long as patients are not coerced. This approach can be defended by the
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argument that physicians might have a better sense of priorities [12] and might better take the changing nature of preferences of patients into account. Many patients fail to appreciate how their preferences will change over time [11]. From a practical viewpoint one could argue that some guidance of patients is inherent to medical practice as the comprehensive normativity of daily practice is very difficult to become aware of.
6. Conclusions and practice implications Those decisions in which non-medical aspects are easily recognised by the physicians, are presented from the beginning as shared decisions. However, important and debatable non-medical assessments strongly and often implicitly influence a ‘medical’ decision about the moment to start dialysis as well. The nephrologists should change practice so that decisions about starting dialysis become shared decisions. Physicians cannot and should not discuss all health-related decisions and aspects of decisions with their patients, as the ideal of shared decision making suggests. They should especially discuss those decisions and aspects that give rise to feelings of uncertainty. This means that nephrologists have good reasons to discuss the importance of life with dialysis with patients who are older or have additional medical problems. From the comparison between the ideal of shared decision making and norms in daily nephrological practice it can be concluded that in some respects practice has to change, in other respects the ideal has to be adapted.
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Decision-making in nephrology: shared decision making? Annique Lelie M.M.S., M.A.* Department of Ethics, Philosophy and History of Medicine, Faculty of Medical Sciences, Catholic University Nijmegen, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands Received 10 January 1999; received in revised form 19 July 1999; accepted 26 July 1999
Abstract Shared decision-making is considered an important ideal for physician–patient interaction. The ideal states that health-related values should be discussed together. It raises two questions: (a) for which decisions is the ideal of shared decision-making relevant? (b) Which aspects of treatment should be discussed? The nephrological practice under consideration in this article answers question (a) as follows: decisions about the type of dialysis are shared decisions, while decisions about the moment to start dialysis are medical decisions that should be taken by nephrologists. This situation can be criticized as important health-related values play a role in decisions about starting dialysis. Question (b) is answered in the nephrological practice under consideration by discussing at least all important health-related aspects that raise uncertainty about its worth for a patient. This approach to question (b) is morally and practically defensible. 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Physician–patient communication; Nephrology; Shared decision-making
1. Introduction Many physicians nowadays subscribe to forms of ‘shared decision-making’ with their patients as the ideal way to come to treatment decisions. Shared decision making means that doctor and patient deliberate about the main aspects of treatment possibilities and finally come to a shared decision. Consequently, sharing a decision bridges the power gap between physicians and patients [1,2]. The changing nature of medical practice from acute to chronic care *Tel.: 1 31-24-3613-104; fax: 1 31-24-3654-0254. E-mail address: annique.lelie@alg / tf.wau.nl (A. Lelie)
0738-3991 / 00 / $ – see front matter PII: S0738-3991( 99 )00093-2
just reinforces the demand for well informed patients, working together with their physicians in order to find the optimal treatment in the abundance of new drugs and therapies [3,4]. However, it is not yet clear what exactly is meant by ‘shared decisionmaking’ [4]. From the perspective of physicians at least two questions arise: (a) for which decisions is the ideal of shared decision-making relevant? (b) When the ideal is deemed relevant, which aspects of treatment should be discussed? Yet, medical practice can not wait for answers. It must find ways to deal with these topics. Central questions in this article, therefore, are: how do nephrologists deal with the ideal of shared decision making and the questions it
2000 Elsevier Science Ireland Ltd. All rights reserved.
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raises, and how can their practice be evaluated? A brief sketch of the ideal of shared decision-making, will be followed by the results of a study on physician–patient interaction in nephrology. It will emerge that both ideal and practice can benefit from the comparison between the stated ideal and norms in nephrological practice.
2. The ideal of shared decision-making In 1956, Szasz and Hollender were among the first to recognize the need for a new model for the physician–patient relationship, especially for patients with chronic diseases. They proposed a model of ‘mutual participation’ in which the physician helps the patient to help himself [5]. Proposals such as this were, however, at first instance superseded by democratic developments stimulating autonomy of patients and contractual approaches to the physician–patient relationship. Only recently critics of ‘the autonomy paradigm’ or ‘contractualism’ and its legalistic aspects picked up the idea of mutual participation and developed it into ideals of shared decision-making [3]. Especially one specific interpretation of contractualism, called the mechanistic, informative or engineering model of physician–patient interaction elicited critical reactions [6]. This model stipulates that a physician should inform a patient as adequately as possible, but leave decision-making entirely to the patient [7]. A strong argument for this model was provided by studies showing that physicians are often poor judges of what their patients want [8,9]. The engineering model raised practical and moral problems, such as: how could one adequately and neutrally inform a patient? It was shown that the way patients are informed highly influences the ‘choices’ they make [10,11]. Another issue was: why is the physician not allowed to advise the patient what he or she thinks best? Physicians may sometimes have a better sense of probabilities and risks [12]. Furthermore, it was shown that while patients might have a high desire for information they do not want to make decisions on their own [13,14]. Questions and criticisms like these paved the way for new models that had an ideal of doctors sharing a decision with patients in common. Well-known defenders of an ideal of shared
decision-making, like Emanuel and co-workers state that patients and physicians have to cooperate by informing each other and discussing all important health related values [1,15]. The aim of a discussion is ‘‘to help the patient determine and choose the best health-related values that can be realized in the clinical situation’’ [1]. A basic assumption of the model is that patients’ preferences are not given but have to be developed during a decision-making process. In the end, patient and physician agree on the right treatment of the patient. This implies that they share responsibility for the final decision [4,15]. The defenders of the various shared decisionmaking models do disagree, however, on the advisory task of the physician: Emanuel and Emanuel state that a physician should aim at moral persuasion of the patient [1]. But Katz emphasizes the task of physicians to help patients choose for themselves what is best instead of persuading them of what the doctor thinks is best [15]. Others are not explicit on this point; they use terms like ‘respect and guidance’ [3]. So, many authors agree that the ideal has validity and offers a good alternative to the engineering model. However, some authors point out that the ideal is difficult to fulfil [12,16]. Sometimes patients or physicians are not completely rational or they refuse to spend time or money on shared decisionmaking. What is more, Deber et al. concluded that many patients prefer to leave the problem solving tasks — such as making a diagnosis and determining risks and probabilities — to their physicians, but only want to participate in choosing between alternative therapeutic options [14].
3. Methods The observations presented here are based on qualitative research on the interactions between nephrologists and patients discussing dialysis therapy for kidney failure. They form part of a larger study on normative aspects in a nephrological practice. The specialty of nephrology was chosen because it concerns a practice area in which physicians often have prolonged relationships and ample opportunity for shared decision-making with their chronically ill kidney patients. The setting is the nephrology out-
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patient clinic of the Academic Hospital Nijmegen St. Radboud in The Netherlands. The nephrology department in this hospital consists of an out-patient clinic (about 3500 visits a year, 300–350 new patients a year), a nephrological ward (18 beds) and a dialysis unit. About 35 hemodialysis patients are treated in this unit, a few patients are on homehemodialysis and about 20 on CAPD (peritoneal dialysis). The out-patient clinic is visited by patients with a kidney disease, patients on peritoneal dialysis and patients with a functioning kidney transplant. In Nijmegen 100–125 kidney transplants are performed each year. Patients with a kidney disease whose kidney function gradually deteriorated and who were expected to start dialysis sooner or later were of interest for this study. Most of these patients were grouped together on one morning per week for consultation by the dialysis resident. The consultations were attended. The methods involved observations and note taking during consultations and weekly patient-discussions, informal questioning of the physicians about the decision-making process immediately after the patient’s visit as well as the study of patient charts, letters and other written material. Patients were not interviewed. Informed consent was obtained through the patient’s physician, immediately before consultation. None of the patients and physicians refused participation. Fifty-nine interactions between patients and nephrologists were thus observed in which dialysis was discussed. Thirty patients, four nephrology residents and one attending nephrologist participated in the interactions. The results described in this paper were obtained in 1994, 1995 and 1996. Identification of general practical rules, norms, and values underlying therapeutic decisions was the aim of this study. It focused on what the physicians consider to be good usual care. Specific attention was paid to evaluative (i.e., normative) utterances during conversation such as: ‘‘you should think about this’’ and ‘‘I should have discussed this earlier’’. Personal opinions of physicians were separated from more commonly held views by studying the behaviour of different physicians in their contacts with the same or similar patients and by comparing the answers of physicians on questions of the observer. The outcome of this fieldwork is a descrip-
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tion of the normativity of decision-making processes concerning dialysis. It does not describe in exact numbers how often things happened, but what the underlying norms were. It also was not an aim of this study to check out how often practice deviated from underlying ideals or norms.
4. Results In the interactions with patients in end-stage renal disease two central decision-making processes came to the fore: decisions had to be taken about the type of dialysis therapy and about the moment to start dialysis. The underlying normativity of those decision-making processes is worked out in the following. First, major normative aspects will be presented. Subsequently, specific normative evaluations underlying the interactions with different categories of patients are discussed.
4.1. Choice of therapy The Nijmegen nephrologists present the choice of dialysis as a choice the patient him or herself has to make, e.g., by explicitly mentioning that they should make their own choice (twice during the fieldwork) and by emphasizing the importance of a good motivation (twice). To stimulate an informed choice the nephrologists try to find out what a patient’s considerations are by asking whether they have any questions or by asking what they think. The nephrologists prefer to commence the information process many months before the expected actual start of dialysis. Best is, in their view, if the information is gradually conveyed and detailed, especially when it concerns the practical consequences of therapy. Feelings, expectations and views of patients are considered important for making a good choice. If time allows it, patients finally have to attend an extensive information session given by dialysis nurses. In 20 consultations the choice of dialysis therapy was discussed. In five consultations the nephrologist gave rather extensive information because the patient was still in the beginning of the information process. These discussions revealed that in the beginning of the information process the following aspects are
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considered important. Two kinds of dialysis therapy are available: peritoneal dialysis (CAPD) and hemodialysis. CAPD should be performed by the patient him- or herself, four times a day, taking half an hour each time. Hemodialysis should be done in the hospital usually three times a week, taking 3–4 h each time. Hemodialysis treatment will be performed by a nurse. (The option of home-hemodialysis did not have to be mentioned as this is only possible after following an intensive course during several months.) The physician should assess the patient’s need for information and his or her capacity to process information. The physician decides when the following aspects will be discussed. The most important risk of CAPD is peritonitis, which requires immediate treatment with antibiotics. A disadvantage of hemodialysis is that it can cause a hangover, especially during the first weeks of treatment. Patients have to be informed about the small surgical procedure that takes place before treatment can be started: for CAPD a catheter needs to be placed in the belly and for hemodialysis a shunt in one of their arms has to be created. For CAPD the patient’s home usually has to be adapted a little (CAPD requires a separate room and a good hygiene). This, however, is paid by the patient’s insurance company (mentioned only once). (In The Netherlands dialysis treatment is always covered by a patient’s insurance company, so according to the physicians this aspect does not have to be mentioned (during the fieldwork it was never part of the information process). It is considered ‘normal’ that patients do not have to pay for treatments, especially not for in-hospital treatments. However, some patients think that adaptation of their house for CAPD is not covered probably because it does not fit with their concept of treatment.) None of the patients were told that hemodialysis is more expensive than CAPD and that hemodialysis sometimes gives allocation problems as there are a limited number of dialysis machines available. As a consequence patients who choose hemodialysis sometimes have to be treated in another hospital than they prefer. Comparison of the context of the information process — the way information was given and the exact terms used — revealed that the physicians have at least three typical ‘ideal’ approaches to patients
related to three categories of patients: young and otherwise healthy patients (13 patients), older or (almost) terminally ill patients (4 patients) and patients with additional medical problems besides their kidney disease (9 patients). Those approaches will be discussed below. Of course overlap between categories of patients exists which sometimes gives difficulties in categorizing a particular patient. As a result 4 of the 30 patients could not adequately be categorized.
4.2. Relatively young and otherwise healthy kidney patients In the process of discussing dialysis therapy with the group of young patients the major underlying value assessment is usually not made explicit as the following typical example taken from the observations illustrates: Mr R. is 36 years old and known with a gradually declining kidney function not yet necessitating dialysis therapy. As a result of a surgical procedure on a knee, however, his kidney function rapidly decreases. When this appears from the blood examinations his nephrologist calls him at home to tell him that they ‘‘have to think about dialysis’’. He proposes a visit to the dialysis unit for further information and explanation. The patient already knows a little about dialysis from earlier discussions with the nephrologist and says he has a slight preference for peritoneal dialysis. The central underlying value assessment in this physician–patient encounter is that life with the burden of dialysis is better than an early death. This evaluation, however, is not discussed. Instead, the physician says that they have to think about dialysis. This means that the patient will die if he does not follow the dialysis regime. The possibility not to start dialysis is not discussed. The nephrologists and probably most patients would not see this possibility as an alternative needing any consideration. For young patients the nephrologists think CAPD is the best choice of the existing options. This preference is based on their own experiences with patients and on medical literature indicating that quality of life of patients on CAPD is better than of
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comparable patients on hemodialysis [17,18]. Now and then the attending nephrologist tells his residents that CAPD is preferred and stimulates them to let suitable patients choose CAPD. All nephrology residents followed in this study let this preference play a role in the physician–patient communication. The following interaction illustrates this: Mr T, 45 years old, regularly visits the outpatient clinic. He was informed by another physician about CAPD and hemodialysis. His new physician discusses dialysis with him in the following way: Physician: have you made a choice yet? Patient: I think . . . (he raises his arm as a sign that he thinks about a shunt and thus hemodialysis). Physician (surprisedly): Oh yes? We should take some time to talk about that later. Following this, the physician performs a regular checkup which involves discussing complaints, a physical examination and discussing further (drug) treatment. At the end of the consultation the physician returns to the subject of choosing a dialysis therapy in the following way: Physician: concerning CAPD, we should talk about that for a moment . . . and hemodialysis. Do you have questions about that? A short discussion follows, in which the physician answers questions about a shunt. Then she says there are no medical reasons not to choose CAPD. She explains the advantages of CAPD above hemodialysis in the following way. With CAPD Mr. T ‘is his own master’. He can perform the therapy at work. It gives him ‘more freedom’. Another advantage is that CAPD is a gradual process, 24 h a day. A choice for hemodialysis means that he is stuck to three times a week and he can have a hangover from dialysis. At the end of the discussion the physician proposes to have a talk with the CAPD nurse. The conversation with Mr T reveals several ways in which the physician tries to influence the choice of her patient. First, by being surprised and proposing to discuss it again, second by phrasing a choice for CAPD in attractive terms like ‘more freedom’ and ‘being your own master’, and third, by proposing a
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talk with the CAPD nurse. Such guidance of patients by physicians is allowed in this nephrological practice, but outright manipulation is considered a step too far as the following utterance of a nephrologist reveals: Physician (with dislike in his voice) about a patient who finally chose CAPD: ‘‘that man is not merely advised, he has been outright manipulated!’’
4.3. Older and severely ill patients When patients are older or are severely ill or handicapped, the Nijmegen nephrologists think they should explicitly discuss the option of not starting dialysis. This was the case with 3 patients older than 80 years and 1 younger patient in a bad mental and physical condition. In such situations the physicians did discuss the basic value assessment involved, because they doubted whether life with dialysis is better than death. The following case reveals many aspects of the underlying normativity that usually plays a role in cases of older or severely ill patients: Mr B is 86 years old when time has come ‘to think about dialysis’, as his nephrologist states it. He often visits the out-patient clinic with his son. He is a kind and intelligent person. Then his kidney function decreases rapidly. The nephrologist wants to talk about starting dialysis. At this time, however, Mr B does not understand much of the discussion. From the first question, he gives incoherent answers or starts to talk about an unrelated subject. Intoxication due to kidney failure possibly contributes to his mental state. During the discussion with Mr B and his son the physician phrases the following questions and remarks: ‘‘I would like to talk with you about dialysis. You are not so young anymore . . . ’’ ‘‘Actually, it should be done with everybody, but with people of your age it is more important, that they get acquainted with dialysis. Let’s see whether you feel better. Of course, that is what it is meant for.’’ ‘‘As a matter of fact, you have no choice, because if you do nothing you will die’’ ‘‘You would like to stay here for a while?’’ Mr
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B says yes, but starts to talk about sleeping tablets. ‘‘Of course we can always stop if things turn out badly’’ ‘‘It’s possible that things happen and that you want to stop. It’s good to think about that beforehand’’ ‘‘It is difficult to have a good talk about this now. You are too ill. We should discuss this again in 1 or 2 weeks’’ (when Mr B has probably improved from dialysis). After Mr B and his son have left, the nephrologist says to me that he should have initiated a discussion about dialysis much earlier. Although it immediately is clear that Mr B does not understand the questions and remarks, his nephrologist brings up many subjects. Why? Presumably, the physician wants to make clear to the son which subjects should be thought about in cases of elderly persons. He also reveals his criterium for continuation of dialysis once it is started, namely that Mr B must feel better. By this way, a later discussion about continuation of dialysis therapy is normatively framed before one word is said. For older patients the nephrologists do not have a common preference for one type of dialysis therapy. Much depends on the physicians assessment of a patient’s mental and physical abilities. For performing CAPD minimal visual acuity is required. This often is a problem with patients with diabetic nephropathy. Patients with dementia do not have the mental capacities to perform CAPD. Also the psychological make-up of older patients determines whether a nephrologist has a preference. Relatively independent and otherwise healthy elderly patients will be stimulated to choose CAPD, but older patients who are judged to need lots of social support might be better off with hemodialysis. The weaker the preference of a physician for a type of dialysis therapy the less he or she will try to influence the decision process.
from diabetes and its complications and 3 patients had cardiac problems. CAPD is preferred for these patients. One patient had a hemiparesis and could not perform his own therapy, so CAPD was not possible. Contra-indications are divided by the nephrologists into two groups: absolute and relative. Patients with absolute contra-indications are told that only one type of dialysis therapy is suitable for them, the other is not possible. For example, this is the case for hemodialysis when no access to the bloodstream can be made or for CAPD when no CAPD catheter can be placed. Relative contra-indications are a higher risk for problems with one type of dialysis (e.g., hemodialysis for patients with cardiac problems), a lower effectivity, or a higher chance of failure than usual (e.g., scars in the belly for CAPD). However, sometimes a relative contra-indication is ‘absolutized’ in order to influence the decision process as is the case with the following patient: Mr K, 61 years old, needs to start with dialysis very soon. He is referred to Nijmegen by another hospital. As a result of surgical procedures in the past he has many scars in his belly. CAPD will probably not be successful. In Nijmegen the nephrologists refer the patient for investigation of his cardiac problems. His coronary arteries are severely narrowed. This is a strong (but not absolute) contra-indication for hemodialysis. A little irritated one of the nephrologist explains how the communication with the patient proceeded: ‘‘At first, they [in the other hospital] told him that CAPD was impossible, because of the scars, now it is exactly the other way around. The patient really does not understand it anymore.’’ ‘Absolutization’ of contra-indications is considered wrong by the nephrologists. The severity of a problem or risk should be explained to a patient. According to the nephrologists, patients with relative contra-indications should be advised what to do, but finally have to make their own choice.
4.4. Patients with additional medical problems 4.5. The decision to start dialysis Some medical problems are contra-indications for some form of dialysis therapy. Nine patients could be categorized in this group. Five patients suffered
In 10 of the 59 consultations criteria for starting dialysis were explicitly discussed with either the
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patient or the researcher after the patient’s visit. From the way the physicians discussed this, the following norms are derived. The major normative judgment underlying the decision about starting dialysis is illustrated by the following dialogue: Patient: when does it [dialysis] have to start? Physician: that is very difficult to say . . . Under 5 or 6 we definitely have to start [5 or 6 refers to a measure of the kidney function]. Under 10 it depends on how one feels and on whether the blood results can be adequately controlled. The message of the physician in this dialogue is: blood examinations and symptoms of kidney failure are important for determining the moment of starting. The wishes, fears, preferences or convictions of the patient are irrelevant for this decision. So, it is a medical decision that should be taken by the physician. None of the patients in this study participated in the decision-making about starting dialysis. The physicians try to put off dialysis until they feel it can no longer be postponed without severe complaints for or danger to the patient. This was explicitly defended by 3 physicians. They consider dialysis to be a heavy burden for patients. A later start means a longer life without dialysis. As a consequence the physical condition of patients usually improves when dialysis finally is started. This might be beneficial to some patients as they become better motivated to carry the heavy burden of dialysis. This is a welcome but additional advantage of the policy to postpone dialysis as long as possible. Of course dialysis is an expensive therapy. Although all physicians are aware of this aspect, only one of them explicitly mentioned this as an additional reason to start dialysis as late as possible. However, for diabetics it might be useful to start earlier as this prevents problems related to uremia, such as neuropathy. Severe uremic complaints such as itching, nausea and tiredness also can be a reason to start earlier than necessary on strict medical grounds. The question when to start dialysis is now and then discussed during a formal or informal meeting with colleagues. The motive usually is a conclusion in the medical literature that an early start reduces medical problems [19]. As a consequence, nowadays
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dialysis is started earlier in the disease process than a few years ago.
5. Discussion In the medical practice studied here, shared decision-making partly plays a role in how physicians think decisions about dialysis should be taken. According to the nephrologists a decision about a form of dialysis should be a shared decision. Patients are sometimes explicitly invited to participate in the decision process. Medical aspects and major consequences for their lives (four times a day or three times a week, home or hospital, etc.) must be discussed. Moral persuasion is allowed and even viewed positively. Contrary to this, the decision to start dialysis at a certain moment, although an important decision in nephrology, was not regarded as a decision that should be shared. In the decision about the right type of dialysis therapy, not all important underlying value assessments are made explicit. An example of this is the high value of life for relatively young and healthy patients. What is more, discussions often have many normative aspects that are not discussed but function as a normative framework for deliberations with different categories of patients. An example is the one-sidedness of the information about dialysis; only information about the personal consequences of therapy for a patient’s life is revealed. The financial consequences for society or the shortage of organs are not discussed. Other examples of normativity are mentioning the subjects (stopping dialysis) or criteria (improved health after the start of dialysis) worth consideration or presenting one alternative in attractive terms, like ‘more freedom’. Such framing of decisions is supported by other studies [20,21]. Sullivan et al. have found in semi-structured interviews with 15 respirologists about intubation and mechanical ventilation for end-stage COPD patients that all physicians advocated a shared decision-making approach, but 14 of them admitted that they influence the deliberation process in order to guide the patient’s choice [22]. What do the results of this study of a nephrological practice mean for the ideal of shared decision-making? Two important questions will be discussed.
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5.1. For which decisions is the ideal of shared decision-making relevant? The choice of dialysis therapy was viewed as a shared decision. The nephrologists are aware of many non-medical aspects that play a role in this decision. On the other hand, the nephrologists in this study determined when dialysis had to start. The decision to start dialysis is a ‘medical’ decision. Personal experience of the author with a nephrological practice in Canada, however, revealed that the Canadian patients started earlier in their process of illness with dialysis, namely as soon as complaints like itching, nausea and tiredness were bothersome [23]. In Canada an important motivation for an early start was reduction of the physical damages of a low kidney function. The Dutch physicians in this study, however, focused more on the heavy burden of dialysis therapy. A later start is better as it means a longer life without dialysis and it possibly makes it easier for patients to carry on with the therapy. So, not only medical–technical aspects but underlying moral and psychological assessments of the quality of life with and without dialysis, the importance of the prevention of physical damage, and the way the physicians think patients can be motivated for dialysis play a role in determining the moment to start dialysis. Following the ideal of shared decisionmaking these important underlying assessments — as they reflect health related values — should be discussed. An explanation for the gap between ideal and medical practice could be that the importance of medical–technical aspects in the decision to start dialysis hides the non-medical aspects. No doubt that medical expertise is required for the decision about starting dialysis. This, however, does not mean that physicians should also automatically judge the importance of the outcomes of physical examinations and blood results.
5.2. Which aspects of a decision should be discussed? The ideal of shared decision-making states that underlying value assessments should be discussed. Should physicians discuss all evaluative aspects? This seems hardly possible as it will consume lots of time and energy. What is more, it can be doubted
whether this really satisfies a need of patients and physicians. The usual answer to the question which underlying value assessments should be shared is that all important health-related values (or value assessments) involved in the decision should be discussed with the patient [1]. Now, even this ideal is very difficult to fulfill as value assessments often unconsciously influence a decision process. Some important values and their assessments stay implicit, as we have seen in the information about dialysis therapy and in the case of Mr R. Should the physician be criticized for this? I don’t think so. It is unpractical and very difficult for physicians to become aware of all important underlying values especially if these values are not problematic. The following approach seems better. In some situations the physicians are aware of the importance of the values of life and death. This is the case when patients are old or terminally ill. For example, Mr. B’s physician doubts whether life is better than death for him. Uncertainty about an underlying value assessment prompts his physician to discuss it, not the mere presence of values. This is a better approach than the ideal of shared decisionmaking states. Those decisions and underlying value assessments are worth discussing that are possibly problematic for a patient. For example, not only decisions about starting dialysis but also their underlying values should be discussed, as the moment of starting dialysis has important consequences for the physical and psychological condition of patients. The approach to share those value assessments that are possibly problematic might in practice turn out as Deber’s suggestion to separate problem solving from decision-making [14]. An assumption of this approach to underlying values is that usually physician and patient assess many basic values similarly, e.g., the high appreciation of life in the case of Mr R. Time and energy can better be spent to extensively discuss decisions and aspects of decisions about which views might differ, e.g., the moment of starting dialysis, the financial consequences of different treatments, and the consequences of a choice for society and other dialysis patients. In the nephrology practice studied persuasion of patients is allowed or, more correctly, it should play a role in the decision process as long as patients are not coerced. This approach can be defended by the
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argument that physicians might have a better sense of priorities [12] and might better take the changing nature of preferences of patients into account. Many patients fail to appreciate how their preferences will change over time [11]. From a practical viewpoint one could argue that some guidance of patients is inherent to medical practice as the comprehensive normativity of daily practice is very difficult to become aware of.
6. Conclusions and practice implications Those decisions in which non-medical aspects are easily recognised by the physicians, are presented from the beginning as shared decisions. However, important and debatable non-medical assessments strongly and often implicitly influence a ‘medical’ decision about the moment to start dialysis as well. The nephrologists should change practice so that decisions about starting dialysis become shared decisions. Physicians cannot and should not discuss all health-related decisions and aspects of decisions with their patients, as the ideal of shared decision making suggests. They should especially discuss those decisions and aspects that give rise to feelings of uncertainty. This means that nephrologists have good reasons to discuss the importance of life with dialysis with patients who are older or have additional medical problems. From the comparison between the ideal of shared decision making and norms in daily nephrological practice it can be concluded that in some respects practice has to change, in other respects the ideal has to be adapted.
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