Med Health Care and Philos DOI 10.1007/s11019-014-9568-7
SCIENTIFIC CONTRIBUTION
Health-care needs and shared decision-making in priority-setting Erik Gustavsson • Lars Sandman
Springer Science+Business Media Dordrecht 2014
Abstract In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making (SDM) in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. Keywords Needs Health-care needs Shared decisionmaking Desires Priority setting Rationing
E. Gustavsson (&) Division of Health and Society, Department of Medical and Health Sciences, Linko¨ping University, 581 83 Linko¨ping, Sweden e-mail: [email protected] E. Gustavsson L. Sandman The National Center for Priority Setting in Health Care, Department of Medical and Health Sciences, Linko¨ping University, Linko¨ping, Sweden L. Sandman School of Health Sciences, University of Bora˚s, 510 90 Bora˚s, Sweden
Introduction The idea that health care should be distributed according to need is widely endorsed in the discussion of bioethics as well as in official guidelines for resource allocation (Crisp 2002; Hasman et al. 2006; Lindsay and Reidar 2008; Hope et al. 2010; Juth 2013; Swedish Health Care Act 1982: 763, 2 §; The NHS Constitution 2013). The challenges which a plausible principle of need has to meet have recently been subject to discussion (Crisp 2002; Hasman et al. 2006; Hope et al. 2010; Juth 2013), but more work is needed in order to construct such a principle. In the present paper we focus on a particular problem concerning the principle of need which arises because of the increasing emphasis on involving patients in decisions about their care (The NHS Constitution 2013; Swedish Health Care Act 1982: 763; Mead and Bower 2000; Da Silva 2012). To ascribe weight to both the idea of distributing health care according to need, and the idea of allowing the patient’s desires1 to matter in shared decision-making (SDM) within health care give rise to a possible tension. This paper aims to capture this tension and to discuss the implied queries. The structure of the paper is as follows. In the sections ‘‘Health-care needs’’, ‘‘The goal(s) of health care’’ and ‘‘Shared decision-making (SDM) and desires’’ we outline some general characteristics of health-care needs, SDM and desires. In ‘‘Needs and desires’’ section we discuss how to plausibly distinguish between needs and desires for health care. In ‘‘Three cases: the piano player, the chess player and the opera singer’’ section we present three cases which aim to 1 In this paper we employ, following Parfit (2011), the notion of desire in order to denote what a person wants. Hence desires and wants are used interchangeably. There is a current debate about how desires are related to other volitional attitudes such as preferences. See e.g. Schroeder (2009) for a discussion of this issue.
123
E. Gustavsson, L. Sandman
bring out queries which arise due to this double focus and we discuss two ways in which this tension may be conceptualized. Drawing on these cases, ‘‘Tension between SDM and need-based priority setting’’ section aims to bring out and discuss the following points. First, the more room given to a patient’s desires in a decision-making process, the less room is left for the notion of need to do the normative work it was designed to do in the first place. Second, it implies certain difficulties with regard to the accessibility of needs. Third, there are practical implications concerning how to rank patients with regard to needs when it comes to priority-setting. Fourth, SDM opens up for further difficulties for priority setting related to how to understand benefits and implications for evidence-based medicine. In ‘‘Summing up and conclusions’’ section we sum up and conclude.
Health-care needs The distribution of health care according to need is often understood in the following way: the greater one’s need, the higher the priority one should be accorded.2 The conceptual structure of needs can be understood in the following way: a subject x can be benefited by some object y in order to achieve some goal z (henceforth referred to as the xyz model) (Gustavsson 2014). In ordinary language and general guidelines for priority-setting in health care the subject x is traditionally understood, implicitly or explicitly, as an individual or a representative group of individuals.3 The object y is the thing needed. Since this discussion is concerned with need for health care we consider an appropriate term for the object y to be ‘‘health-care intervention’’ (intervention for short). Hence the intervention refers to the object which x needs in order to achieve the goal z. Some need theorists take the proposition that ‘‘x needs y in order to achieve z’’ to mean that y is a necessary condition for x in order to achieve z. As EG has argued elsewhere, we prefer another interpretation: y can benefit x in order to achieve z.4
Whatever goal z one sets for a need in the xyz model it is with a reference to this goal that a need arises. There has to be some difference between a person’s actual state of z and the valued state of z (Liss 1993). For example, a patient may have a low cardiac function which may be associated with a risk for premature death and sometimes a reduced quality of life (QoL). Hence there is a gap between the patient’s actual state of having a low cardiac function and the valued state of having a higher cardiac function. The patient needs a certain drug or other intervention in order to close (fully or partly) the gap between low cardiac function and higher cardiac function. From the xyz analysis it seems clear that when x needs y, x always needs y in order to achieve z, which is to say that all needs are instrumental.5 To say that needs are instrumental is to say that whenever x needs y, x will always need y for the purpose of something else, in order to achieve some goal. Thus, as health-care needs are instrumental they have to be complemented with some theory of human good as its goal z in order to have normative implications.6 Our starting-point here is that whatever such theory one ends up with it will be closely linked to the goal of health care.7 In other words, the most reasonable way to understand z in the xyz model is closely linked to the most reasonable way to understand the goal of health care.8 Furthermore an intervention may carry benefits which go beyond the goal(s) of health care. But what should the goal(s) of health care be? Below we outline some general views on this matter.
The goal(s) of health care Well-being as a goal of health care Some writers argue that the most reasonable position here would be some general theory of well-being (Crisp 2002; and to some extent Juth 2013). A common way to distinguish between theories of well-being is to classify them as
2
In this paper we discuss the reasons needs provide for a certain allocation of resources. There may of course be other relevant aspects (cost-effectiveness, human dignity etc.). 3 In this paper we shall assume that this is the most reasonable approach; however, it may be argued that a collective (such as a couple, a family or even a population) may need a certain intervention as a collective (and not simply as individuals) as well. If one accepts such a possibility the issue at stake in this paper would be far more complex than our discussion suggests. To fully account for such a complicating factor is beyond the scope of this paper. 4 See (Gustavsson 2014), where two versions of ‘‘can’’ are discussed, one strong interpretation where a need can be satisfied in a particular situation s and one weaker interpretation where the ability to satisfy a need may be taught. The former interpretation will depend on what interventions and competences are available in s. When we discuss options for the patient in the following we have this interpretation in mind.
123
5
Even though some writers disagree (Thomson 1987, 2005), see (Crisp 2002; Juth 2013; Gustavsson 2014) for arguments that all needs are instrumental. 6 A complicating factor here is how life-length is to be taken to relate to well-being. As important as this discussion is we shall only partly discuss this issue below. 7 It may be argued that the goals of medicine have changed over time and it may be difficult to distinguish between the goals of different stakeholders (individual professionals, hospital boards, professional medical organizations etc.) (see Fleischhauer and Hermere´n 2006). When we refer to the goal(s) of health care we are concerned with the normative question of what the goal(s) of health care should be, not what it is/they are or has/have been. 8 See Liss (2003) who argues that one should adhere to this position for rational reasons.
Decision-making in priority-setting
either hedonistic theories, preferentist theories or ‘‘objective list theories’’ (Parfit 1984; Sumner 1996; Bru¨lde 1998; Feldman 2004). 1.
2.
3.
Hedonism A key concept in hedonistic theory is pleasure or happiness. A person is living a good life if that person is living a life which contains more pleasure than pain. Hence hedonists often focus on a person’s experiences. Preferentism According to prefentist theory a person is living a good life if that person gets what he or she desires. The important aspect here is thus that a person’s life has a greater fulfillment of positive desires than frustrated desires, or fulfillment of negative desires or aversions. Objective list theories Adherents of these theories argue that to what extent a person’s life goes well is dependent on a number of values. These values are good for a person independently of his or her attitude towards them. Thus a life goes well, according to these theories, to the extent the values on the list are present in that life.9
Health as a goal of health care Others have assumed that the goal of health care should be understood in terms of some theory of health (Liss 1993; Daniels 1995). For present purposes it is enough to roughly distinguish between two perspectives on health: the biomedical and the holistic.10 An influential example of the former is the bio-statistical account of health (BST) according to which a person is healthy if his or her organs and tissues are functioning normally given a statistically normal environment, i.e. making a statistically normal contribution to the person’s survival. This type of theory takes health to be the absence of disease, and whether a person is healthy or not is independent of the person’s attitudes or evaluation (Boorse 1977).11 A dominant holistic theory of health claims that a person is healthy if he or she has the ability to achieve his or her vital goals. The full analysis goes: ‘‘A is healthy if, and only if, A has the ability, given standard circumstances, to realize his vital goals, i.e. the set of goals which are necessary and jointly sufficient for his minimal happiness’’ (Nordenfelt 1995, p. 90).12 In contrast to BST, to what 9
On top of this we might have a number of more or less complex combinations of these three basic theories (see e.g. Bru¨lde 1998). 10 Sometimes other terms are used to mark this distinction: naturalist versus normativist, or analytic versus holistic. 11 See (Nordenfelt 1995, pp. 23–34) for criticism of this view. 12 This, however, should not be interpreted as the goals which a person actually has (Nordenfelt 1995, p. 96). Rather there is some objective relation between a person’s vital goals and minimal
extent a person is healthy according to HTH is partly dependent on that person’s evaluations since one’s minimal happiness will be partly up to one’s own assessment.13 In the next section we shall discuss whether there is reason to employ one of these types of theory rather than the other, given an idea of SDM. The conceptual room for the patient’s desires given different goals of health care Does a belief in the importance of SDM in medical decision-making provide a reason for preferring one of these types of theories over another? For example, one may argue that HTH leaves more room than BST for the patient’s desires in that it takes into account certain individual aspects, via the notion of vital goals and their relation to minimal happiness. As true as this is, it is only true with regard to what room one leaves for individualizing a patient’s need within the notion of health. An adherent of BST may plausibly add one or more goals to health and thereby make room for the patient’s desires to play a part. Simplicity is a virtue when it comes to matters of this kind but it is difficult to see that keeping the ‘‘individualizing component’’ within the notion of health would have any practical implications, given that adherents of BST are pluralists regarding the goal of health care. Hence this is an argument for HTH to the extent that one wishes to maintain a monist position regarding this goal. Furthermore it should be mentioned that none of these theories can fully account for a patient’s desires since one may desire ‘‘less than optimal care’’ according to both theories. We therefore conclude that a preference for this or that theory does not matter for our argument in this paper.14
Shared decision-making (SDM) and desires SDM is often considered to be a preferred approach to medical decision-making in that it takes the patient’s perspective into account but does not make the professional’s Footnote 12 continued happiness. In later publications Nordenfelt rather refers to ‘‘…state of affairs which are necessary…’’ (Our italics. Nordenfelt 2007, p. 93). Either way the plausibility of HTH seems partly to depend on whether one can plausibly (in practice) distinguish between vital goals (or state of affairs) and goals actually set by an individual. 13 See (Bru¨lde 2000a) for criticism of this view. See (Nordenfelt 2000) for a response to (Bru¨lde 2000a), and (Bru¨lde 2000b) for a response to (Nordenfelt 2000). 14 It is only if one takes the position that the goal of health care can be based on BST alone no room is left for the patient’s desires. However, this does not seem as a plausible position—nor does it (to the best of our knowledge) have any adherents. Even a prominent adherent of BST as Boorse (1977) does not adhere to this position.
123
E. Gustavsson, L. Sandman
judgment of how the patient is best benefited superfluous,15 and it has been a trend in recent decades (Da Silva 2012). Sandman and Munthe (2009) argue that there are nine models of SDM where the patient’s desires can influence the decision to different degrees. Furthermore they argue that some models leave room for the patient to exercise autonomy while some do not. The models move ‘‘from classical (Hippocratic) paternalism at one end of the scale…and from a pure form of patient choice at the other end’’ (Sandman and Munthe 2009, p. 291). In classical paternalism the professional decides with a minimal influence from the patient, in pure patient choice the patient decides with a minimal influence from the professional. Thus there are two sides to consider with regard to the decision. First there is the professional’s view of what treatment would be in the patient’s best interest, second there is the patient’s own view of this. It is far from clear how ‘‘patient’s best interest’’ is best understood. The way in which we put it here leaves room for at least two possibilities: (1) that the patient may be wrong about what is in his or her best interest, and (2) that the professional may be wrong about what is in the patient’s best interest. Da Silva (2012) states that ‘‘[s]hared decision making is feasible wherever there is no one best evidence-based course of action’’ (Da Silva 2012, p. 8). However, this seems like a too narrow role for SDM, since even in cases where there is a best evidence-based course of action, the patient and professional might still disagree on the whether the outcome of this course of action is valuable to achieve. Whether SDM should be used or not is therefore primarily a question of values and not about evidence (or lack of evidence). In this paper we do not take a stand concerning which model of SDM is the most reasonable one—it is enough, for present purposes, to say that we are interested in models where the patient’s desire is allowed to influence the outcome (cf. Sandman and Munthe 2009, pp. 291–292), for example that the patient’s desire results in a modification of the treatment. Hence our interpretation of SDM is different from Da Silva’s since it leaves room for the possibility that the treatment with the best evidence base is not necessarily in the patient’s best interest. The important contribution which the patient makes to SDM is his or her desire about his or her situation. SDM is a method designed partly to bring out this desire. To desire an object is, roughly, to have a positive attitude towards that object.16 One may distinguish between telic and instrumental desires. Parfit (2011) suggests that a desire is telic when ‘‘we want some event as an end, or for its own sake’’ (Parfit 2011, p. 44). Such a desire takes the following form: some subject x 15
In this paper we present no argument as to why it is important to include the patient’s desires in the decision-making process (see (Nordin 2000; Sandman et al. 2012) for such arguments). 16 See again Schroeder (2009) for a discussion.
123
wants some object y (period).17 On the other hand a desire is instrumental, on this view, when ‘‘we want some event as a means, because this event would or might cause some other event that we want’’ (Parfit 2011, p. 44). It follows, then, that a desire can have the same structure as a need: x wants y in order to achieve z. This is simply to say that x may want y for the sake of something else. In the end there will be, it seems reasonable to say, a z which is desired for its own sake, i.e. the object of a telic desire. One may need y and desire y simultaneously. But it does not necessarily follow from that one needs y that one desire y, nor vice versa. The relation between needs and desires will be further discussed in the next section.
Needs and desires It is often claimed that one may desire what one does not need and that one may need what one does not desire. Meanwhile needs are often considered to have a close relation to, and indeed are sometimes confused with, desires (or wants). For example, in ordinary language needs and desires are sometimes used interchangeably. So, when we say that we badly need a drink, we may be referring to the desire for a drink. Perhaps instrumental desires are the ones most often confused with needs since they take the same formal structure.18 In this section we shall attempt to characterize the suggested difference between the two notions. Frankfurt (1984) suggests that satisfying a need has a moral weight that satisfying a desire does not have. He further claims that this Principle of Precedence is appropriate with regard to the same object. For instance, if Jack needs y and Jill wants y, Jack’s needing y seems to override that Jill wants it. However, as Frankfurt recognizes: ‘‘The moral importance of meeting or of not meeting a need must … be wholly derivative from the importance of the end which gives rise to it’’ (Frankfurt 1984, p. 2). This remark is well in line with the instrumental interpretation of needs presented above. Since we understand needs as being instrumental the normative force will, in our terminology, generally depend on z.19 ¨ sterberg For this idea see further (Parfit 1984; Rabinowicz and O 1996; Bru¨lde 1998). 18 Statements about needs and instrumental desires are often elliptical. That is, they often implicitly presuppose the goal component. 19 There are cases when y will decide the normativity of the question. For example, if there is generally some normative problem with using y, this might influence the normative issue. However, if there are absolute moral rules against using a certain y (for example if y is actively and intentionally killing another person)—this might settle the matter regardless of z. Here we deem these situations to be rare. 17
Decision-making in priority-setting
One way to understand the difference between desire and need is in terms of objectivity.20 A need may be objective in at least two senses: (1) the relation R between the object y and the goal component z is independent of the person’s beliefs about R, (2) the goal component z is something valuable for a person independent of his or her attitudes towards a given z. We take objectivity of the relation R to be a defining characteristic for something to qualify as a need. This seems to be what Wiggins (1998, p. 6) has in mind when he writes: ‘‘…if one wants something because it is F, one believes or suspects that it is F. But if one needs something because it is F, it must really be F, whether or not one believes that it is.’’ Griffin (1986, p. 41) expresses this thought in a similar way: ‘‘…while ‘desire’ is, ‘need’ is not tied to a subject’s perception of the object…’’ As we understand Wiggins and Griffin this is to say that needs are objective in the sense that x may need y independent of what x believes about y and/or the relation between y and a particular z.21 From this sense of objectivity it follows at least two characteristics of needs which make them different from desires. First, one may fail to want what one needs given a certain z. For example, Jill may suffer from pneumonia for which there is an effective intervention I, however, she may lack information about I and therefore she does not want I. Perhaps she does not know that there is an intervention like I at all or she knows that there is such an intervention but not that I has the properties which it actually has. Still it makes perfect sense to say that Jill needs I. Second, one may be mistaken about what one needs. For example, Jill may want a drug D1 because she believes (incorrectly) that D1 will cure her pneumonia but D1 does not have the relevant properties to cure it. Therefore it makes no sense to say that she needs D1, rather she needs D2 which does in fact have the relevant properties for curing her pneumonia. Accordingly whether x needs y or not is a matter of how a given y actually is constituted and how it therefore would affect a given z at a given time.22
Secondly we may consider the objectivity of the goal for which one need something, i.e. the z. Firstly, let us consider a telic desire—something one wants for its own sake. For example, one may have a telic desire to live a long and happy life. Usually we do not think of such an end as valuable because it leads us to something else which we want. It follows from the instrumentality of needs that needs cannot be telic in this sense. We do not need to live a long and happy life in order to achieve something else, rather we may need certain other things in order to live a long and happy life. Secondly, let us consider an instrumental desire—something one wants because it may lead to something else one wants. For example, one may want y (instrumentally) because one believes that y will lead to z for which one has a telic desire. As noted above an instrumental desire has the same formal structure as a need, however, the end-point of an instrumental desire is necessarily something which one wants in some sense. This is different from a need since it makes perfect sense to say that one may need a given intervention in order to achieve, for example, optimal health in a BST sense independently of whether one wants to have optimal health in the BST sense or not. However, needs are not necessarily objective with regard to z. In accordance with Frankfurt (1984) one may distinguish between volitional needs and non-volitional needs. The former would be a need that to some extent is depending on one’s desires. In our terminology: the goal component z is (at least partly) constituted by a desire. A non-volitional need would rather be when one needs a particular y in order to achieve a given z which is good for a person independent of his or her attitudes towards that z. This section suggests that needs are objective in at least one sense which desires are not: objectivity of the relation between y and z. However, the question is still whether they should be understood as objective in the sense that z is valuable for x independent of x’s attitude towards z. As we shall see when we consider three examples, this difference may pull us in different directions; and this may pose difficult questions, some of which we shall discuss below.
20
For further discussion of the relation between desires and needs see e.g. Wiggins 1998; Thomson 1987; Griffin 1986. 21 These are all theoretical points. Whether we ‘‘know’’ that x needs y or not within the sphere of health care will depend on whether there is good reason to believe that y can benefit x in order to achieve z. Hence in practice the crucial question will not be whether some y really is F but whether we have good reasons to believe that this y is F. 22 One may object here that given that one has a rational or fully informed desire one would not desire D1 but D2. Hence needs may be fully accounted for in terms of e.g. rational desires. One way to approach such an objection would be to say that a person who has rational desires will know what he needs and therefore desire what he needs. As also noted by Wiggins (1998, p. 6): ‘‘There must of course
Three cases: the piano player, the chess player and the opera singer Often when patients’ desires are discussed in the context of priority setting they are discussed in relation to Footnote 22 continued be many other ways of arriving at rational wants than via needs; but insofar as rationality comes into the matter at all—i.e. rationality as conceived independently of given actual motivations—the idea of need surely has to be at least coeval with the idea of want, and should be accorded its own semantic identity.’’
123
E. Gustavsson, L. Sandman
interventions in the following way. Before the professional meets the patient there has been a ranking of different interventions at a patient group level (for example based on need) that could be relevant to use in relation to the patient’s condition. The professional then offers (and sometimes also recommends) the patient one or a set of alternative interventions. Based on the patient’s desires he or she accepts or declines the offer. If a patient declines a given intervention, his or her decision ought to be respected, on the basis of the principle of autonomy.23 However, desires may play a more complex role in this context. We shall now discuss three cases designed to illustrate this.24 1.
2.
The Pianist Consider first the case of Mary, a professional pianist whose hand is injured in a car accident. She wants to have her hand’s function back to the level it had prior to the accident. Since she is a professional pianist, this implies a level of functioning beyond what most people have and make use of. Things may be different in the case of, say, Margaret, a professor who does not depend as much on her hand’s functioning in daily life and will do with normal functioning. The chess player Consider next the case of a chess player, Jesper, who suffers an injury to the anterior cruciate ligament (ACL) of his knee.25 One option for him is to have a new ACL constructed, which would restore the knee to its former level—he will once again have the ability to run, for example. The problem with this option is that the rehabilitation will take a lot of time and effort. He will have to see a physiotherapist every week and do exercises every day. Jesper does not
23
It may be argued that when people decline a certain intervention, it is because they have some problem with the intervention per se. Consider for instance John, a Jehovah’s Witness who refuses a blood transfusion because of his religious beliefs. Though it may seem in such a case that the patient has a desire concerning the intervention y, another way to understand this situation is that he has a desire directed towards the goal component. His desire is not primarily to have optimal health or well-being in this life but to live some other life after this life—or rather, the latter desire overrides the former desire (since he may still desire a life with optimal health and well-being provided that this does not conflict with life on the other side of death). The reason he declines y (the blood transfusion), is because he believes y will frustrate this goal. Thus such cases can often be understood in terms of the desire’s being directed, in the first place, not towards y but towards z. 24 In these examples people desire to modify their treatment for different reasons. One may consider these reasons either more or less appropriate. The question of what reasons it is appropriate to take into account in such situations is a difficult normative one which needs more thorough analysis. It is worth noting here that the notion of ‘‘window of compromise’’ (discussed below) may offer some sort of answer. 25 The human knee has four major ligaments. The anterior cruciate ligament is one of them.
123
3.
want that. He does not desire to be able to run again, it does not matter to him. Jesper’s other option is to simply have the ACL removed. Then the knee will work fine in everyday life but he will not be able to do more demanding things such as running. He does not want to undergo the treatment where they construct a new ACL, for him it is enough to just get the knee to a state where he can sit, stand and walk without pain. Things may be different for, say, a person who likes to run the marathon but now has the same knee trouble. The opera singer Consider William, a patient who is taking a diuretic as part of the treatment for certain heart complications but who wants to reduce his intake in order to avoid constant visits to the toilet and is willing to accept the increased risk involved in such a reduction. Assume that the standard dosage for this kind of patient is 10 pills a day, which gives a 90 % reduction in the risk of future complications. The pills will still have some effect if he takes 5 a day, but 4 or fewer are likely to have no effect. Taking 5 will reduce the risk of future complications by 45 %, not 90. However, taking 5 will also reduce the number of visits to the toilet. William knows that one of the side effects of this diuretic (especially if the dosage is as much as 10 pills) is that one constantly has to go to the toilet. Now, this is unfortunate for him in view of his profession. He is an opera singer and his performances often last up to 4 h. Therefore he strongly desires to avoid constant visits to the toilet, even if the price to pay is increased risk of future complications.26
Unlike his brother who works in an office and has the same sort of heart trouble, William would rather have increased risk of future complications than suffer the side effects of the more potent intervention.27 Two ways to conceptualize these cases: volitional needs and non-volitional needs It may be a difficult task how one should understand these cases in terms of needs and desires since there may be intuitions pulling in different directions. In this section we shall, following Frankfurt’s distinction between non-volitional needs and volitional needs, conceptualize what is going on in the three cases presented above. 26
To provide a patient with 5 rather than 10 pills here may in certain contexts be referred to as ‘‘providing less than optimal care’’ (Lantos et al. 2011). However, such a position presupposes that one does not regard the particular patient’s desires as having anything to do with what is optimal care for him or her. We discuss this further below. 27 The case where x should be given a milder intervention may also derive from strictly medical considerations. For example, x may have other complications than heart failure (kidney trouble, for example) and therefore ought not to take 10 pills.
Decision-making in priority-setting
(A)
(B)
Non-volitional needs Let us start with the piano player. Does her desire to have her hand’s function back to the level it had prior to the accident have any implications on her need? One way to go about this question would be to try to maintain a sharp distinction between needs and desires and accordingly argue that the piano player and the professor have identical non-volitional needs. The difference between them is that they happen to desire different ways of life. In this vein one would most reasonably arrive at the same conclusion regarding the chess player case, Jesper and the marathon runner; they have identical non-volitional needs but different desires. It seems also to follow from this line of reasoning that the opera singer William and his brother have identical non-volitional needs—both of them need 10 pills—but they have different desires. In this way it is possible to maintain a clear distinction between the need and desire of the patients. Volitional needs Does it make sense to say that the opera singer needs 10 pills while this would make him achieve a state that he strongly desires not to achieve? One may find it more reasonable to say that he does not need (given the nature of his life) a 90 % reduction in the risk of future complications in combination with having to constantly go to the toilet. He rather needs, given the interventions available in this situation, the intervention that does not make him visit the toilet constantly but at the same time have the (lower but accepted) effect of only resulting in a 45 % reduction in the risk of future complications.28 Hence he has a different goal z with reference to which we may understand his need for health care. If one argues along these lines the goal of a patient’s need z may be partly or even substantially constituted by the patient’s desire.
In the same vein one may argue that it may make better sense to say that a professional pianist has a greater need than a professor would have with the same hand injury. Similarly it would seem that the chess player has a smaller need than the marathon runner who has suffered the identical type of injury. Note that one may arrive at the same normative conclusion about what one should do in a specific situation according to (A) and (B). According to the former it matters what a patient needs and what he or she wants.
These are two independent factors which both should affect a decision. According to (B) a patient’s desire affects the patient’s need in a way that may be relevant for what ought to be done. The issue at stake is whether it makes sense to say that the z component of a need may be partly constituted by a desire. We shall explore some arguments to this effect, however, our main objective in the next section is to highlight some important aspects which need to be discussed in any health care system which wants to practice priority setting according to need and practice SDM. These aspects seem to arise independent of whether one is leaning towards (A) or (B).29
Tension between SDM and need-based priority setting In this section we will analyze more in detail different problematic aspects or queries arising from the tension between desires within SDM and a need-based priority setting. The objectivity and moral force of needs As mentioned above needs may be objective in at least two ways: (1) objectivity of the relation R, (2) objectivity of the goal component z. According to our interpretation of Frankfurt non-volitional needs are objective in both these senses and falls under the principle of precedence. Volitional needs are also objective, however, only in the former sense and they do not fall under this principle (cf. Frankfurt 1984, pp. 4–6). The idea lurking here seems to be that needs to a great extent gain their moral force from this objective characteristic of the goal. To adhere to position (A) may seem to have the advantage of maintaining the distinction between needs and desires. But why would it be important to maintain this distinction? One answer may be that needs have a normative force which desires do not have and to adhere to (A) would help to maintain this normative force of needs. But that cannot be it since the (A) adherent would, by letting desires matter for an outcome (in line with SDM) have to diminish the weight given to needs in priority setting. It follows then that also desires seem to have some kind of normative force which has to be accounted for. In addition one could argue that there may be some needs for which such an analysis cannot account satisfactorily. For example, it may strike some as counter intuitive
28
One may suggest that what the opera singer really needs is an intervention that gives him 100 % reduction in the risk of future complications and no increased urge to go to the toilet. But this is something which health care cannot offer in the present state of affairs. See further footnote 4.
29
Above we have assumed that the goal component z of a need will be closely linked to the goal(s) of health care. It follows from the (A) interpretation, however, that the latter will be wider than the former.
123
E. Gustavsson, L. Sandman
to say that the opera singer needs 10 pills. One reason for that may be the following: many people would agree that the intervention appropriate for William is 5 pills therefore he ought to be given 5 pills. To say that the appropriate intervention would be 10 pills creates some kind of gap between what a person needs and what he or she ought to be given. Given that one rather understands the relation according to (B) the idea that needs are objective in this sense collapses, (B) may account for the patient’s needs in a more reasonable way meanwhile distorting the distinction between needs and desires. But it may also be noted that some needs do not even seem to arise without a desire partly constituting the goal component. For example, the need for assisted reproductive technologies does not seem to arise independent of some desire to become pregnant. Independent of whether one adheres to (A) or (B) it follows that the more a patient’s desire is allowed to influence the decision, the more one moves away from distributing health care according to need and the closer one comes to distributing it according to wants. But again this is not due to one’s choice of (A) or (B) per se, but this is an implication of introducing patient’s desires within SDM in a need-based priority setting. Such an argument suggests again that the idea of distributing health care according to need has some objective characteristic of the goal z lurking in the background. But our discussion suggests that it may be easier to uphold this objective characteristic on a group level (henceforth referred to as the macro level) than on an individual level (henceforth referred to as the micro level).30 This will be developed further in the following. The inaccessibility of needs There is a classical tension between the macro and micro level since patients at the latter level may deviate from assumptions made on the former. This tension arises independently of whether one practices SDM or not, however, it seems that SDM pushes this problem one step further since a patient may now introduce aspects which did not even enter into the equation on a macro level. For example, SDM opens the door to the possibility that the best evidence-based course of action may no longer be the 30
It may be objected that decision-makers are already able to assess people’s needs and their desires on a macro level. QoL (or Health) instruments are used to assess how people are affected by health-care problems and interventions to handle these problems, and the data acquired are then used in priority setting. But the evaluation of the need component of the problem (the effect on the person with no intervention) is less frequently used than how certain interventions affect these factors. Second, these instruments are based on only a rough picture of what kind of desires people usually have.
123
course of action that is in the patient’s best interest. A patient may desire to have ‘‘less and more than optimal care’’. Exactly how difficult these problems will be to handle will depend on the extent to which individual patients will diverge from the ‘‘normal’’ patient. Implications for needs in priority setting When a principle of need is used in priority setting it is generally firstly used at the macro level. By assessing the general need of the group of patients (together with other aspects that should guide the priority setting) we arrive at a certain ranking of a given intervention related to this need. In this assessment of the need of the patient group, we assume a certain objectivity or inter-subjectivity of these needs, i.e. that we can roughly determine the degree of need for a certain patient group’s condition. But when we turn to the individual level there may be several individual deviations. The difficult normative question here is whether, and if so to what extent, the patient’s desire in certain cases should determine his or her ranking on the micro level. Intuitively one may say that it seems reasonable to answer in the affirmative in, for example, the pianist case. According to the (B) interpretation one might add that the reason for why we should prioritize the pianist in favor of the professor is that the pianist has a greater need than the professor. In this vein one could argue that it is given the goal (or, more precisely, given that there are different goals), that the pianist’s need is greater than the professor’s. This line of reasoning suggests that it is worse to be in the pianist’s situation than to be in the professor’s situation—and, similarly, that it is worse to be in the marathon runner’s situation than in the chess player’s situation. According to (A) the size of x’s need may be determined independent of what x wants. One may say according to (A) that what determines how we should prioritize x depends on how badly off one is and what that person wants. But the intuition that we should prioritize the pianist in favor of the professor seems dependent on that it is worse to be in the pianist’s shoes than in the professor’s. That is, her desire to play the piano does not seem to be distinguishable (in any easy way) from how badly off she is. The (B) interpretation captures this intuition. Moving on to the opera singer case, how should we understand the shift from 10 to 5 pills? Here it is difficult to reason in terms of the above-mentioned one dimensional gap when determining the size of the need of the opera singer. This, since we are here dealing with two different dimensions, where William, the opera singer, in a sense has higher demands when it comes to QoL (he does not accept the lowered QoL that would result from 10 pills), but accepts a lower level when it comes to reducing the risk to his longevity. A tentative idea would be to introduce a two
Decision-making in priority-setting
dimensional assessment of the need in terms of a weighing together of QoL and life-length, in line with the qualityadjusted life years (QALY)-measurement. SDM then strongly suggests that it should be up to the patient to decide which one matters more for him or her. Hence, in the opera singer case it will be more complex to assess whether William has a greater need than his brother. To arrive at such a conclusion requires more work on the relationship between QoL and life-length. Further implications for priority setting We have argued that the double focus of needs and desires within SDM poses problems regarding how to understand how badly off a patient is. In this section we shall briefly discuss two further implications for priority setting. First, it may be argued that a plausible interpretation of a need principle should imply that there are stronger reasons to give priority to the office worker rather than the opera singer since the treatment is of greater benefit to him. But this approach only helps if we have a clear-cut definition of what benefitting these people (individually) consists in. According to the (A) interpretation the office worker seems to have been benefited more than the opera singer since he has a risk reduction of 90 % while the opera singer has a risk reduction of 45 %. Accordingly they have identical needs, the only difference is that the opera singer is satisfied with ‘‘less than optimal care’’ for private reasons. But saying that 5 pills is ‘‘less than optimal care’’ for the opera singer presupposes that one does not regard his desire as partly determining what optimal care is for him. Hence it does not seem to capture all that matters for an outcome. Such a conclusion seems to be at odds with the key idea of SDM as well as counter intuitive. In line with the (B) interpretation it may seem that both the opera singer and the office worker have been benefited in a way which make it reasonable to say that their needs are satisfied—but through a dosage of 5 in the case of the first, and 10 in the case of the second. The desires presented within SDM are in different ways and to a differing degree connected to various dimensions of a good life. These dimensions are not easily transferable or easily compared with each other. Hence we no longer have any simple idea about how to understand how a patient is best benefited and especially how to compare a benefit to one with benefit to the other. Second, the idea of benefit has a close relation to the notion of evidence-based medicine for which SDM has implications. These implications have to do with the fact that there will not always be sufficient data connected to all the options patients may desire. In the opera singer case we assume that we know something about what effect different amounts of pills have on a particular heart condition. We
know that 10 pills will reduce the risk of future complications by 90 % while 5 pills will reduce it by 45 %, and we know that 4 pills have no effect (and so on). But for practical reasons the requisite knowledge will seldom be available to professionals and patients.31 In situations where there are rich data, however, we may introduce some room for negotiation, a ‘‘window of compromise’’ (Sandman et al. 2012; Sandman and Munthe 2009).32 For example, in the opera singer case it seems that 5–10 pills would constitute this window of compromise. This would partly answer the question to what extent a patient’s desire should be allowed to influence a medical decision. A well-worked-out idea about the reasonable boundaries for such a window of compromise may strike the appropriate balance between the patient’s and the professional’s opinion.33
Summing up and conclusions In this paper we have explored the relation between a patient’s desires within SDM and the idea of distribution of health care according to need. The discussion throughout this paper suggests that there is a tension between these two ideas which raises the following issues. Firstly, normatively relevant needs are traditionally assumed to be objective. To let a patient’s desire matter for his or her ranking in priority setting is to diminish the role of this traditional idea. It seems, however, easier to uphold this approach to needs on a macro level than on a micro level. Secondly, to move from a macro level to a micro level involves a difficulty to predict what patients one may expect on the latter. To introduce SDM pushes this difficulty one step further. Thirdly, a difficult normative issue arising from this double focus is whether, and if so to what extent, a patient’s desires should have implications for a patient’s ranking in priority setting on a micro level. Furthermore the introduction of SDM may make a patient’s desire not only determine his or her QoL (and/or health) but also how to weigh QoL (and/or health) against life-length.
31
A different, though related, question is how to relate to situations where there is only weak evidence for a given intervention. 32 It is worth noting here, as is also mentioned in (Sandman et al. 2012; Sandman and Munthe 2009), that the size of a reasonable window of compromise is not determined solely by the degree of evidence for a given intervention but also by such factors as access to resources and ethical boundaries for the professional or the healthcare system. 33 Here we assume that the professional will argue for the best evidence-based course of action.
123
E. Gustavsson, L. Sandman
Fourth, the introduction of a patient’s desire in medical decision-making poses further difficulties for priority setting. These difficulties regard how to understand benefits (especially the comparative factor) on a micro level as well as an impact on the availability of evidence for the different options from which patients may choose. These queries need to be thoroughly discussed within any health care system which wants to maintain the idea of priority setting according to need and practice SDM. Acknowledgments We would like to thank Niklas Juth, Lennart Nordenfelt, Ingemar Nordin and Gustav Tingho¨g for helpful discussions and comments on earlier drafts of this paper.
References Boorse, C. 1977. Health as a theoretical concept. Philosophy of Science 44: 542–573. Bru¨lde, B. 1998. The human good. Go¨teborg: Acta Universitatis Gothoburgensis. Bru¨lde, B. 2000a. On how to define the concept of health: A loose comparative approach. Medicine, Health Care and Philosophy 3: 305–308. Bru¨lde, B. 2000b. More on the looser comparative approach to defining ‘‘health’’: A reply to Nordenfelt’s reply. Medicine, Health Care and Philosophy 3: 313–315. Crisp, R. 2002. Treatment according to need: Justice and the British National Health Service. In Medicine and social justice: Essays on the distribution of health care, ed. R. Rhodes, 134–143. New York: Oxford University Press. Da Silva, D. 2012. Evidence: Helping people share decision making—A review of evidence considering whether shared decision making is worthwhile. London: The Health Foundation. Daniels, N. 1995. Just health care. Cambridge: Cambridge University Press. Feldman, F. 2004. Pleasure and the good life—Concerning the nature, varieties, and plausibility of hedonism. Oxford: Calderon Press. Fleischhauer, K., and G. Hermere´n. 2006. Goals of medicine in the course of history and today—A study in the history and philosophy of medicine. Stockholm: Kungl. Vitterhets historie och antikvitets akademien. Frankfurt, H.G. 1984. Necessity and desire. Philosophy and Phenomenological Research 45: 1–13. Griffin, J. 1986. Well-being: Its meaning, measurement, and moral importance. Oxford: Oxford University Press. Gustavsson, E. 2014. From needs to health care needs. Health Care Analysis 22: 22–35.
123
Hasman, A., T. Hope, and L.P. Østerdal. 2006. Health care need: Three interpretations. Journal of Applied Philosophy 23: 145–156. Hope, T., L.P. Østerdal, and A. Hasman. 2010. An inquiry into the principles of needs-based allocation of health care. Bioethics 24: 470–480. Juth, N. 2013. Challenges for principles of need in health care. Health Care Analysis. doi:10.1007/s10728-013-0242-7. Lantos, J., A.M. Matlock, and D. Wendler. 2011. Clinician integrity and limits to patient autonomy. JAMA 305: 495–499. Lindsay, M.S., and L.K. Reidar. 2008. Priority setting in health care: Lessons from the experiences of eight countries. International Journal for Equity in Health. doi:10.1186/1475-9276-7-4. Liss, P.-E. 1993. Health care need—Meaning and measurement. Aldershot: Avebury. Liss, P.-E. 2003. The significance of the goal of health care for the setting of priorities. Health Care Analysis 11: 161–169. Mead, N., and P. Bower. 2000. Patient-centredness: A conceptual framework and review of the empirical literature. Social Science and Medicine 51: 1087–1110. Nordenfelt, L. 1995. On the nature of health: An action-theoretic approach. Dordrecht: Kluwer. Nordenfelt, L. 2000. On the comparative approach to defining health: A reply to Bru¨lde. Medicine, Health Care and Philosophy 3: 309–312. Nordenfelt, L. 2007. Action, ability and health—Essays in the philosophy of action and welfare. Dordrecht: Kluwer. Nordin, I. 2000. Expert and non-expert knowledge in medical practice. Medicine, Health Care and Philosophy 3: 295–302. Parfit, D. 1984. Reasons and persons. New York: Oxford University Press. Parfit, D. 2011. On what matters. New York: Oxford University Press. ¨ sterberg. 1996. Value based on desires. Rabinowicz, W., and J. O Philosophy and Economics 12: 1–15. Sandman, L., and C. Munthe. 2009. Shared decision-making and patient autonomy. Theoretical Medicine and Bioethics 30: 289–310. Sandman, L., B.B. Granger, I. Ekman, and C. Munthe. 2012. Adherence, shared decision-making and patient autonomy. Medicine, Health Care and Philosophy 15: 115–127. Schroeder, T. 2009. Desire. Stanford encyclopedia of philosophy. http://plato.stanford.edu/entries/desire/. Accessed 3 Oct 2013. Sumner, L.W. 1996. Welfare, happiness & ethics. New York: Oxford University Press. Swedish Health Care Act. (1982: 763), 2 §. The NHS Constitution for England. 2013. https://www.gov.uk/govern ment/publications/the-nhs-constitution-for-england. Accessed 25 Sept 2013. Thomson, G. 1987. Needs. New York: Routledge and Kegan Paul. Thomson, G. 2005. Fundamental needs. In The philosophy of need, ed. S. Reader, 175–186. Cambridge: Cambridge University. Wiggins, D. 1998. Needs, values, truth, 3rd ed. Oxford: Clarendon Press.
SCIENTIFIC CONTRIBUTION
Health-care needs and shared decision-making in priority-setting Erik Gustavsson • Lars Sandman
Springer Science+Business Media Dordrecht 2014
Abstract In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making (SDM) in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and discuss a number of queries which seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. Keywords Needs Health-care needs Shared decisionmaking Desires Priority setting Rationing
E. Gustavsson (&) Division of Health and Society, Department of Medical and Health Sciences, Linko¨ping University, 581 83 Linko¨ping, Sweden e-mail: [email protected] E. Gustavsson L. Sandman The National Center for Priority Setting in Health Care, Department of Medical and Health Sciences, Linko¨ping University, Linko¨ping, Sweden L. Sandman School of Health Sciences, University of Bora˚s, 510 90 Bora˚s, Sweden
Introduction The idea that health care should be distributed according to need is widely endorsed in the discussion of bioethics as well as in official guidelines for resource allocation (Crisp 2002; Hasman et al. 2006; Lindsay and Reidar 2008; Hope et al. 2010; Juth 2013; Swedish Health Care Act 1982: 763, 2 §; The NHS Constitution 2013). The challenges which a plausible principle of need has to meet have recently been subject to discussion (Crisp 2002; Hasman et al. 2006; Hope et al. 2010; Juth 2013), but more work is needed in order to construct such a principle. In the present paper we focus on a particular problem concerning the principle of need which arises because of the increasing emphasis on involving patients in decisions about their care (The NHS Constitution 2013; Swedish Health Care Act 1982: 763; Mead and Bower 2000; Da Silva 2012). To ascribe weight to both the idea of distributing health care according to need, and the idea of allowing the patient’s desires1 to matter in shared decision-making (SDM) within health care give rise to a possible tension. This paper aims to capture this tension and to discuss the implied queries. The structure of the paper is as follows. In the sections ‘‘Health-care needs’’, ‘‘The goal(s) of health care’’ and ‘‘Shared decision-making (SDM) and desires’’ we outline some general characteristics of health-care needs, SDM and desires. In ‘‘Needs and desires’’ section we discuss how to plausibly distinguish between needs and desires for health care. In ‘‘Three cases: the piano player, the chess player and the opera singer’’ section we present three cases which aim to 1 In this paper we employ, following Parfit (2011), the notion of desire in order to denote what a person wants. Hence desires and wants are used interchangeably. There is a current debate about how desires are related to other volitional attitudes such as preferences. See e.g. Schroeder (2009) for a discussion of this issue.
123
E. Gustavsson, L. Sandman
bring out queries which arise due to this double focus and we discuss two ways in which this tension may be conceptualized. Drawing on these cases, ‘‘Tension between SDM and need-based priority setting’’ section aims to bring out and discuss the following points. First, the more room given to a patient’s desires in a decision-making process, the less room is left for the notion of need to do the normative work it was designed to do in the first place. Second, it implies certain difficulties with regard to the accessibility of needs. Third, there are practical implications concerning how to rank patients with regard to needs when it comes to priority-setting. Fourth, SDM opens up for further difficulties for priority setting related to how to understand benefits and implications for evidence-based medicine. In ‘‘Summing up and conclusions’’ section we sum up and conclude.
Health-care needs The distribution of health care according to need is often understood in the following way: the greater one’s need, the higher the priority one should be accorded.2 The conceptual structure of needs can be understood in the following way: a subject x can be benefited by some object y in order to achieve some goal z (henceforth referred to as the xyz model) (Gustavsson 2014). In ordinary language and general guidelines for priority-setting in health care the subject x is traditionally understood, implicitly or explicitly, as an individual or a representative group of individuals.3 The object y is the thing needed. Since this discussion is concerned with need for health care we consider an appropriate term for the object y to be ‘‘health-care intervention’’ (intervention for short). Hence the intervention refers to the object which x needs in order to achieve the goal z. Some need theorists take the proposition that ‘‘x needs y in order to achieve z’’ to mean that y is a necessary condition for x in order to achieve z. As EG has argued elsewhere, we prefer another interpretation: y can benefit x in order to achieve z.4
Whatever goal z one sets for a need in the xyz model it is with a reference to this goal that a need arises. There has to be some difference between a person’s actual state of z and the valued state of z (Liss 1993). For example, a patient may have a low cardiac function which may be associated with a risk for premature death and sometimes a reduced quality of life (QoL). Hence there is a gap between the patient’s actual state of having a low cardiac function and the valued state of having a higher cardiac function. The patient needs a certain drug or other intervention in order to close (fully or partly) the gap between low cardiac function and higher cardiac function. From the xyz analysis it seems clear that when x needs y, x always needs y in order to achieve z, which is to say that all needs are instrumental.5 To say that needs are instrumental is to say that whenever x needs y, x will always need y for the purpose of something else, in order to achieve some goal. Thus, as health-care needs are instrumental they have to be complemented with some theory of human good as its goal z in order to have normative implications.6 Our starting-point here is that whatever such theory one ends up with it will be closely linked to the goal of health care.7 In other words, the most reasonable way to understand z in the xyz model is closely linked to the most reasonable way to understand the goal of health care.8 Furthermore an intervention may carry benefits which go beyond the goal(s) of health care. But what should the goal(s) of health care be? Below we outline some general views on this matter.
The goal(s) of health care Well-being as a goal of health care Some writers argue that the most reasonable position here would be some general theory of well-being (Crisp 2002; and to some extent Juth 2013). A common way to distinguish between theories of well-being is to classify them as
2
In this paper we discuss the reasons needs provide for a certain allocation of resources. There may of course be other relevant aspects (cost-effectiveness, human dignity etc.). 3 In this paper we shall assume that this is the most reasonable approach; however, it may be argued that a collective (such as a couple, a family or even a population) may need a certain intervention as a collective (and not simply as individuals) as well. If one accepts such a possibility the issue at stake in this paper would be far more complex than our discussion suggests. To fully account for such a complicating factor is beyond the scope of this paper. 4 See (Gustavsson 2014), where two versions of ‘‘can’’ are discussed, one strong interpretation where a need can be satisfied in a particular situation s and one weaker interpretation where the ability to satisfy a need may be taught. The former interpretation will depend on what interventions and competences are available in s. When we discuss options for the patient in the following we have this interpretation in mind.
123
5
Even though some writers disagree (Thomson 1987, 2005), see (Crisp 2002; Juth 2013; Gustavsson 2014) for arguments that all needs are instrumental. 6 A complicating factor here is how life-length is to be taken to relate to well-being. As important as this discussion is we shall only partly discuss this issue below. 7 It may be argued that the goals of medicine have changed over time and it may be difficult to distinguish between the goals of different stakeholders (individual professionals, hospital boards, professional medical organizations etc.) (see Fleischhauer and Hermere´n 2006). When we refer to the goal(s) of health care we are concerned with the normative question of what the goal(s) of health care should be, not what it is/they are or has/have been. 8 See Liss (2003) who argues that one should adhere to this position for rational reasons.
Decision-making in priority-setting
either hedonistic theories, preferentist theories or ‘‘objective list theories’’ (Parfit 1984; Sumner 1996; Bru¨lde 1998; Feldman 2004). 1.
2.
3.
Hedonism A key concept in hedonistic theory is pleasure or happiness. A person is living a good life if that person is living a life which contains more pleasure than pain. Hence hedonists often focus on a person’s experiences. Preferentism According to prefentist theory a person is living a good life if that person gets what he or she desires. The important aspect here is thus that a person’s life has a greater fulfillment of positive desires than frustrated desires, or fulfillment of negative desires or aversions. Objective list theories Adherents of these theories argue that to what extent a person’s life goes well is dependent on a number of values. These values are good for a person independently of his or her attitude towards them. Thus a life goes well, according to these theories, to the extent the values on the list are present in that life.9
Health as a goal of health care Others have assumed that the goal of health care should be understood in terms of some theory of health (Liss 1993; Daniels 1995). For present purposes it is enough to roughly distinguish between two perspectives on health: the biomedical and the holistic.10 An influential example of the former is the bio-statistical account of health (BST) according to which a person is healthy if his or her organs and tissues are functioning normally given a statistically normal environment, i.e. making a statistically normal contribution to the person’s survival. This type of theory takes health to be the absence of disease, and whether a person is healthy or not is independent of the person’s attitudes or evaluation (Boorse 1977).11 A dominant holistic theory of health claims that a person is healthy if he or she has the ability to achieve his or her vital goals. The full analysis goes: ‘‘A is healthy if, and only if, A has the ability, given standard circumstances, to realize his vital goals, i.e. the set of goals which are necessary and jointly sufficient for his minimal happiness’’ (Nordenfelt 1995, p. 90).12 In contrast to BST, to what 9
On top of this we might have a number of more or less complex combinations of these three basic theories (see e.g. Bru¨lde 1998). 10 Sometimes other terms are used to mark this distinction: naturalist versus normativist, or analytic versus holistic. 11 See (Nordenfelt 1995, pp. 23–34) for criticism of this view. 12 This, however, should not be interpreted as the goals which a person actually has (Nordenfelt 1995, p. 96). Rather there is some objective relation between a person’s vital goals and minimal
extent a person is healthy according to HTH is partly dependent on that person’s evaluations since one’s minimal happiness will be partly up to one’s own assessment.13 In the next section we shall discuss whether there is reason to employ one of these types of theory rather than the other, given an idea of SDM. The conceptual room for the patient’s desires given different goals of health care Does a belief in the importance of SDM in medical decision-making provide a reason for preferring one of these types of theories over another? For example, one may argue that HTH leaves more room than BST for the patient’s desires in that it takes into account certain individual aspects, via the notion of vital goals and their relation to minimal happiness. As true as this is, it is only true with regard to what room one leaves for individualizing a patient’s need within the notion of health. An adherent of BST may plausibly add one or more goals to health and thereby make room for the patient’s desires to play a part. Simplicity is a virtue when it comes to matters of this kind but it is difficult to see that keeping the ‘‘individualizing component’’ within the notion of health would have any practical implications, given that adherents of BST are pluralists regarding the goal of health care. Hence this is an argument for HTH to the extent that one wishes to maintain a monist position regarding this goal. Furthermore it should be mentioned that none of these theories can fully account for a patient’s desires since one may desire ‘‘less than optimal care’’ according to both theories. We therefore conclude that a preference for this or that theory does not matter for our argument in this paper.14
Shared decision-making (SDM) and desires SDM is often considered to be a preferred approach to medical decision-making in that it takes the patient’s perspective into account but does not make the professional’s Footnote 12 continued happiness. In later publications Nordenfelt rather refers to ‘‘…state of affairs which are necessary…’’ (Our italics. Nordenfelt 2007, p. 93). Either way the plausibility of HTH seems partly to depend on whether one can plausibly (in practice) distinguish between vital goals (or state of affairs) and goals actually set by an individual. 13 See (Bru¨lde 2000a) for criticism of this view. See (Nordenfelt 2000) for a response to (Bru¨lde 2000a), and (Bru¨lde 2000b) for a response to (Nordenfelt 2000). 14 It is only if one takes the position that the goal of health care can be based on BST alone no room is left for the patient’s desires. However, this does not seem as a plausible position—nor does it (to the best of our knowledge) have any adherents. Even a prominent adherent of BST as Boorse (1977) does not adhere to this position.
123
E. Gustavsson, L. Sandman
judgment of how the patient is best benefited superfluous,15 and it has been a trend in recent decades (Da Silva 2012). Sandman and Munthe (2009) argue that there are nine models of SDM where the patient’s desires can influence the decision to different degrees. Furthermore they argue that some models leave room for the patient to exercise autonomy while some do not. The models move ‘‘from classical (Hippocratic) paternalism at one end of the scale…and from a pure form of patient choice at the other end’’ (Sandman and Munthe 2009, p. 291). In classical paternalism the professional decides with a minimal influence from the patient, in pure patient choice the patient decides with a minimal influence from the professional. Thus there are two sides to consider with regard to the decision. First there is the professional’s view of what treatment would be in the patient’s best interest, second there is the patient’s own view of this. It is far from clear how ‘‘patient’s best interest’’ is best understood. The way in which we put it here leaves room for at least two possibilities: (1) that the patient may be wrong about what is in his or her best interest, and (2) that the professional may be wrong about what is in the patient’s best interest. Da Silva (2012) states that ‘‘[s]hared decision making is feasible wherever there is no one best evidence-based course of action’’ (Da Silva 2012, p. 8). However, this seems like a too narrow role for SDM, since even in cases where there is a best evidence-based course of action, the patient and professional might still disagree on the whether the outcome of this course of action is valuable to achieve. Whether SDM should be used or not is therefore primarily a question of values and not about evidence (or lack of evidence). In this paper we do not take a stand concerning which model of SDM is the most reasonable one—it is enough, for present purposes, to say that we are interested in models where the patient’s desire is allowed to influence the outcome (cf. Sandman and Munthe 2009, pp. 291–292), for example that the patient’s desire results in a modification of the treatment. Hence our interpretation of SDM is different from Da Silva’s since it leaves room for the possibility that the treatment with the best evidence base is not necessarily in the patient’s best interest. The important contribution which the patient makes to SDM is his or her desire about his or her situation. SDM is a method designed partly to bring out this desire. To desire an object is, roughly, to have a positive attitude towards that object.16 One may distinguish between telic and instrumental desires. Parfit (2011) suggests that a desire is telic when ‘‘we want some event as an end, or for its own sake’’ (Parfit 2011, p. 44). Such a desire takes the following form: some subject x 15
In this paper we present no argument as to why it is important to include the patient’s desires in the decision-making process (see (Nordin 2000; Sandman et al. 2012) for such arguments). 16 See again Schroeder (2009) for a discussion.
123
wants some object y (period).17 On the other hand a desire is instrumental, on this view, when ‘‘we want some event as a means, because this event would or might cause some other event that we want’’ (Parfit 2011, p. 44). It follows, then, that a desire can have the same structure as a need: x wants y in order to achieve z. This is simply to say that x may want y for the sake of something else. In the end there will be, it seems reasonable to say, a z which is desired for its own sake, i.e. the object of a telic desire. One may need y and desire y simultaneously. But it does not necessarily follow from that one needs y that one desire y, nor vice versa. The relation between needs and desires will be further discussed in the next section.
Needs and desires It is often claimed that one may desire what one does not need and that one may need what one does not desire. Meanwhile needs are often considered to have a close relation to, and indeed are sometimes confused with, desires (or wants). For example, in ordinary language needs and desires are sometimes used interchangeably. So, when we say that we badly need a drink, we may be referring to the desire for a drink. Perhaps instrumental desires are the ones most often confused with needs since they take the same formal structure.18 In this section we shall attempt to characterize the suggested difference between the two notions. Frankfurt (1984) suggests that satisfying a need has a moral weight that satisfying a desire does not have. He further claims that this Principle of Precedence is appropriate with regard to the same object. For instance, if Jack needs y and Jill wants y, Jack’s needing y seems to override that Jill wants it. However, as Frankfurt recognizes: ‘‘The moral importance of meeting or of not meeting a need must … be wholly derivative from the importance of the end which gives rise to it’’ (Frankfurt 1984, p. 2). This remark is well in line with the instrumental interpretation of needs presented above. Since we understand needs as being instrumental the normative force will, in our terminology, generally depend on z.19 ¨ sterberg For this idea see further (Parfit 1984; Rabinowicz and O 1996; Bru¨lde 1998). 18 Statements about needs and instrumental desires are often elliptical. That is, they often implicitly presuppose the goal component. 19 There are cases when y will decide the normativity of the question. For example, if there is generally some normative problem with using y, this might influence the normative issue. However, if there are absolute moral rules against using a certain y (for example if y is actively and intentionally killing another person)—this might settle the matter regardless of z. Here we deem these situations to be rare. 17
Decision-making in priority-setting
One way to understand the difference between desire and need is in terms of objectivity.20 A need may be objective in at least two senses: (1) the relation R between the object y and the goal component z is independent of the person’s beliefs about R, (2) the goal component z is something valuable for a person independent of his or her attitudes towards a given z. We take objectivity of the relation R to be a defining characteristic for something to qualify as a need. This seems to be what Wiggins (1998, p. 6) has in mind when he writes: ‘‘…if one wants something because it is F, one believes or suspects that it is F. But if one needs something because it is F, it must really be F, whether or not one believes that it is.’’ Griffin (1986, p. 41) expresses this thought in a similar way: ‘‘…while ‘desire’ is, ‘need’ is not tied to a subject’s perception of the object…’’ As we understand Wiggins and Griffin this is to say that needs are objective in the sense that x may need y independent of what x believes about y and/or the relation between y and a particular z.21 From this sense of objectivity it follows at least two characteristics of needs which make them different from desires. First, one may fail to want what one needs given a certain z. For example, Jill may suffer from pneumonia for which there is an effective intervention I, however, she may lack information about I and therefore she does not want I. Perhaps she does not know that there is an intervention like I at all or she knows that there is such an intervention but not that I has the properties which it actually has. Still it makes perfect sense to say that Jill needs I. Second, one may be mistaken about what one needs. For example, Jill may want a drug D1 because she believes (incorrectly) that D1 will cure her pneumonia but D1 does not have the relevant properties to cure it. Therefore it makes no sense to say that she needs D1, rather she needs D2 which does in fact have the relevant properties for curing her pneumonia. Accordingly whether x needs y or not is a matter of how a given y actually is constituted and how it therefore would affect a given z at a given time.22
Secondly we may consider the objectivity of the goal for which one need something, i.e. the z. Firstly, let us consider a telic desire—something one wants for its own sake. For example, one may have a telic desire to live a long and happy life. Usually we do not think of such an end as valuable because it leads us to something else which we want. It follows from the instrumentality of needs that needs cannot be telic in this sense. We do not need to live a long and happy life in order to achieve something else, rather we may need certain other things in order to live a long and happy life. Secondly, let us consider an instrumental desire—something one wants because it may lead to something else one wants. For example, one may want y (instrumentally) because one believes that y will lead to z for which one has a telic desire. As noted above an instrumental desire has the same formal structure as a need, however, the end-point of an instrumental desire is necessarily something which one wants in some sense. This is different from a need since it makes perfect sense to say that one may need a given intervention in order to achieve, for example, optimal health in a BST sense independently of whether one wants to have optimal health in the BST sense or not. However, needs are not necessarily objective with regard to z. In accordance with Frankfurt (1984) one may distinguish between volitional needs and non-volitional needs. The former would be a need that to some extent is depending on one’s desires. In our terminology: the goal component z is (at least partly) constituted by a desire. A non-volitional need would rather be when one needs a particular y in order to achieve a given z which is good for a person independent of his or her attitudes towards that z. This section suggests that needs are objective in at least one sense which desires are not: objectivity of the relation between y and z. However, the question is still whether they should be understood as objective in the sense that z is valuable for x independent of x’s attitude towards z. As we shall see when we consider three examples, this difference may pull us in different directions; and this may pose difficult questions, some of which we shall discuss below.
20
For further discussion of the relation between desires and needs see e.g. Wiggins 1998; Thomson 1987; Griffin 1986. 21 These are all theoretical points. Whether we ‘‘know’’ that x needs y or not within the sphere of health care will depend on whether there is good reason to believe that y can benefit x in order to achieve z. Hence in practice the crucial question will not be whether some y really is F but whether we have good reasons to believe that this y is F. 22 One may object here that given that one has a rational or fully informed desire one would not desire D1 but D2. Hence needs may be fully accounted for in terms of e.g. rational desires. One way to approach such an objection would be to say that a person who has rational desires will know what he needs and therefore desire what he needs. As also noted by Wiggins (1998, p. 6): ‘‘There must of course
Three cases: the piano player, the chess player and the opera singer Often when patients’ desires are discussed in the context of priority setting they are discussed in relation to Footnote 22 continued be many other ways of arriving at rational wants than via needs; but insofar as rationality comes into the matter at all—i.e. rationality as conceived independently of given actual motivations—the idea of need surely has to be at least coeval with the idea of want, and should be accorded its own semantic identity.’’
123
E. Gustavsson, L. Sandman
interventions in the following way. Before the professional meets the patient there has been a ranking of different interventions at a patient group level (for example based on need) that could be relevant to use in relation to the patient’s condition. The professional then offers (and sometimes also recommends) the patient one or a set of alternative interventions. Based on the patient’s desires he or she accepts or declines the offer. If a patient declines a given intervention, his or her decision ought to be respected, on the basis of the principle of autonomy.23 However, desires may play a more complex role in this context. We shall now discuss three cases designed to illustrate this.24 1.
2.
The Pianist Consider first the case of Mary, a professional pianist whose hand is injured in a car accident. She wants to have her hand’s function back to the level it had prior to the accident. Since she is a professional pianist, this implies a level of functioning beyond what most people have and make use of. Things may be different in the case of, say, Margaret, a professor who does not depend as much on her hand’s functioning in daily life and will do with normal functioning. The chess player Consider next the case of a chess player, Jesper, who suffers an injury to the anterior cruciate ligament (ACL) of his knee.25 One option for him is to have a new ACL constructed, which would restore the knee to its former level—he will once again have the ability to run, for example. The problem with this option is that the rehabilitation will take a lot of time and effort. He will have to see a physiotherapist every week and do exercises every day. Jesper does not
23
It may be argued that when people decline a certain intervention, it is because they have some problem with the intervention per se. Consider for instance John, a Jehovah’s Witness who refuses a blood transfusion because of his religious beliefs. Though it may seem in such a case that the patient has a desire concerning the intervention y, another way to understand this situation is that he has a desire directed towards the goal component. His desire is not primarily to have optimal health or well-being in this life but to live some other life after this life—or rather, the latter desire overrides the former desire (since he may still desire a life with optimal health and well-being provided that this does not conflict with life on the other side of death). The reason he declines y (the blood transfusion), is because he believes y will frustrate this goal. Thus such cases can often be understood in terms of the desire’s being directed, in the first place, not towards y but towards z. 24 In these examples people desire to modify their treatment for different reasons. One may consider these reasons either more or less appropriate. The question of what reasons it is appropriate to take into account in such situations is a difficult normative one which needs more thorough analysis. It is worth noting here that the notion of ‘‘window of compromise’’ (discussed below) may offer some sort of answer. 25 The human knee has four major ligaments. The anterior cruciate ligament is one of them.
123
3.
want that. He does not desire to be able to run again, it does not matter to him. Jesper’s other option is to simply have the ACL removed. Then the knee will work fine in everyday life but he will not be able to do more demanding things such as running. He does not want to undergo the treatment where they construct a new ACL, for him it is enough to just get the knee to a state where he can sit, stand and walk without pain. Things may be different for, say, a person who likes to run the marathon but now has the same knee trouble. The opera singer Consider William, a patient who is taking a diuretic as part of the treatment for certain heart complications but who wants to reduce his intake in order to avoid constant visits to the toilet and is willing to accept the increased risk involved in such a reduction. Assume that the standard dosage for this kind of patient is 10 pills a day, which gives a 90 % reduction in the risk of future complications. The pills will still have some effect if he takes 5 a day, but 4 or fewer are likely to have no effect. Taking 5 will reduce the risk of future complications by 45 %, not 90. However, taking 5 will also reduce the number of visits to the toilet. William knows that one of the side effects of this diuretic (especially if the dosage is as much as 10 pills) is that one constantly has to go to the toilet. Now, this is unfortunate for him in view of his profession. He is an opera singer and his performances often last up to 4 h. Therefore he strongly desires to avoid constant visits to the toilet, even if the price to pay is increased risk of future complications.26
Unlike his brother who works in an office and has the same sort of heart trouble, William would rather have increased risk of future complications than suffer the side effects of the more potent intervention.27 Two ways to conceptualize these cases: volitional needs and non-volitional needs It may be a difficult task how one should understand these cases in terms of needs and desires since there may be intuitions pulling in different directions. In this section we shall, following Frankfurt’s distinction between non-volitional needs and volitional needs, conceptualize what is going on in the three cases presented above. 26
To provide a patient with 5 rather than 10 pills here may in certain contexts be referred to as ‘‘providing less than optimal care’’ (Lantos et al. 2011). However, such a position presupposes that one does not regard the particular patient’s desires as having anything to do with what is optimal care for him or her. We discuss this further below. 27 The case where x should be given a milder intervention may also derive from strictly medical considerations. For example, x may have other complications than heart failure (kidney trouble, for example) and therefore ought not to take 10 pills.
Decision-making in priority-setting
(A)
(B)
Non-volitional needs Let us start with the piano player. Does her desire to have her hand’s function back to the level it had prior to the accident have any implications on her need? One way to go about this question would be to try to maintain a sharp distinction between needs and desires and accordingly argue that the piano player and the professor have identical non-volitional needs. The difference between them is that they happen to desire different ways of life. In this vein one would most reasonably arrive at the same conclusion regarding the chess player case, Jesper and the marathon runner; they have identical non-volitional needs but different desires. It seems also to follow from this line of reasoning that the opera singer William and his brother have identical non-volitional needs—both of them need 10 pills—but they have different desires. In this way it is possible to maintain a clear distinction between the need and desire of the patients. Volitional needs Does it make sense to say that the opera singer needs 10 pills while this would make him achieve a state that he strongly desires not to achieve? One may find it more reasonable to say that he does not need (given the nature of his life) a 90 % reduction in the risk of future complications in combination with having to constantly go to the toilet. He rather needs, given the interventions available in this situation, the intervention that does not make him visit the toilet constantly but at the same time have the (lower but accepted) effect of only resulting in a 45 % reduction in the risk of future complications.28 Hence he has a different goal z with reference to which we may understand his need for health care. If one argues along these lines the goal of a patient’s need z may be partly or even substantially constituted by the patient’s desire.
In the same vein one may argue that it may make better sense to say that a professional pianist has a greater need than a professor would have with the same hand injury. Similarly it would seem that the chess player has a smaller need than the marathon runner who has suffered the identical type of injury. Note that one may arrive at the same normative conclusion about what one should do in a specific situation according to (A) and (B). According to the former it matters what a patient needs and what he or she wants.
These are two independent factors which both should affect a decision. According to (B) a patient’s desire affects the patient’s need in a way that may be relevant for what ought to be done. The issue at stake is whether it makes sense to say that the z component of a need may be partly constituted by a desire. We shall explore some arguments to this effect, however, our main objective in the next section is to highlight some important aspects which need to be discussed in any health care system which wants to practice priority setting according to need and practice SDM. These aspects seem to arise independent of whether one is leaning towards (A) or (B).29
Tension between SDM and need-based priority setting In this section we will analyze more in detail different problematic aspects or queries arising from the tension between desires within SDM and a need-based priority setting. The objectivity and moral force of needs As mentioned above needs may be objective in at least two ways: (1) objectivity of the relation R, (2) objectivity of the goal component z. According to our interpretation of Frankfurt non-volitional needs are objective in both these senses and falls under the principle of precedence. Volitional needs are also objective, however, only in the former sense and they do not fall under this principle (cf. Frankfurt 1984, pp. 4–6). The idea lurking here seems to be that needs to a great extent gain their moral force from this objective characteristic of the goal. To adhere to position (A) may seem to have the advantage of maintaining the distinction between needs and desires. But why would it be important to maintain this distinction? One answer may be that needs have a normative force which desires do not have and to adhere to (A) would help to maintain this normative force of needs. But that cannot be it since the (A) adherent would, by letting desires matter for an outcome (in line with SDM) have to diminish the weight given to needs in priority setting. It follows then that also desires seem to have some kind of normative force which has to be accounted for. In addition one could argue that there may be some needs for which such an analysis cannot account satisfactorily. For example, it may strike some as counter intuitive
28
One may suggest that what the opera singer really needs is an intervention that gives him 100 % reduction in the risk of future complications and no increased urge to go to the toilet. But this is something which health care cannot offer in the present state of affairs. See further footnote 4.
29
Above we have assumed that the goal component z of a need will be closely linked to the goal(s) of health care. It follows from the (A) interpretation, however, that the latter will be wider than the former.
123
E. Gustavsson, L. Sandman
to say that the opera singer needs 10 pills. One reason for that may be the following: many people would agree that the intervention appropriate for William is 5 pills therefore he ought to be given 5 pills. To say that the appropriate intervention would be 10 pills creates some kind of gap between what a person needs and what he or she ought to be given. Given that one rather understands the relation according to (B) the idea that needs are objective in this sense collapses, (B) may account for the patient’s needs in a more reasonable way meanwhile distorting the distinction between needs and desires. But it may also be noted that some needs do not even seem to arise without a desire partly constituting the goal component. For example, the need for assisted reproductive technologies does not seem to arise independent of some desire to become pregnant. Independent of whether one adheres to (A) or (B) it follows that the more a patient’s desire is allowed to influence the decision, the more one moves away from distributing health care according to need and the closer one comes to distributing it according to wants. But again this is not due to one’s choice of (A) or (B) per se, but this is an implication of introducing patient’s desires within SDM in a need-based priority setting. Such an argument suggests again that the idea of distributing health care according to need has some objective characteristic of the goal z lurking in the background. But our discussion suggests that it may be easier to uphold this objective characteristic on a group level (henceforth referred to as the macro level) than on an individual level (henceforth referred to as the micro level).30 This will be developed further in the following. The inaccessibility of needs There is a classical tension between the macro and micro level since patients at the latter level may deviate from assumptions made on the former. This tension arises independently of whether one practices SDM or not, however, it seems that SDM pushes this problem one step further since a patient may now introduce aspects which did not even enter into the equation on a macro level. For example, SDM opens the door to the possibility that the best evidence-based course of action may no longer be the 30
It may be objected that decision-makers are already able to assess people’s needs and their desires on a macro level. QoL (or Health) instruments are used to assess how people are affected by health-care problems and interventions to handle these problems, and the data acquired are then used in priority setting. But the evaluation of the need component of the problem (the effect on the person with no intervention) is less frequently used than how certain interventions affect these factors. Second, these instruments are based on only a rough picture of what kind of desires people usually have.
123
course of action that is in the patient’s best interest. A patient may desire to have ‘‘less and more than optimal care’’. Exactly how difficult these problems will be to handle will depend on the extent to which individual patients will diverge from the ‘‘normal’’ patient. Implications for needs in priority setting When a principle of need is used in priority setting it is generally firstly used at the macro level. By assessing the general need of the group of patients (together with other aspects that should guide the priority setting) we arrive at a certain ranking of a given intervention related to this need. In this assessment of the need of the patient group, we assume a certain objectivity or inter-subjectivity of these needs, i.e. that we can roughly determine the degree of need for a certain patient group’s condition. But when we turn to the individual level there may be several individual deviations. The difficult normative question here is whether, and if so to what extent, the patient’s desire in certain cases should determine his or her ranking on the micro level. Intuitively one may say that it seems reasonable to answer in the affirmative in, for example, the pianist case. According to the (B) interpretation one might add that the reason for why we should prioritize the pianist in favor of the professor is that the pianist has a greater need than the professor. In this vein one could argue that it is given the goal (or, more precisely, given that there are different goals), that the pianist’s need is greater than the professor’s. This line of reasoning suggests that it is worse to be in the pianist’s situation than to be in the professor’s situation—and, similarly, that it is worse to be in the marathon runner’s situation than in the chess player’s situation. According to (A) the size of x’s need may be determined independent of what x wants. One may say according to (A) that what determines how we should prioritize x depends on how badly off one is and what that person wants. But the intuition that we should prioritize the pianist in favor of the professor seems dependent on that it is worse to be in the pianist’s shoes than in the professor’s. That is, her desire to play the piano does not seem to be distinguishable (in any easy way) from how badly off she is. The (B) interpretation captures this intuition. Moving on to the opera singer case, how should we understand the shift from 10 to 5 pills? Here it is difficult to reason in terms of the above-mentioned one dimensional gap when determining the size of the need of the opera singer. This, since we are here dealing with two different dimensions, where William, the opera singer, in a sense has higher demands when it comes to QoL (he does not accept the lowered QoL that would result from 10 pills), but accepts a lower level when it comes to reducing the risk to his longevity. A tentative idea would be to introduce a two
Decision-making in priority-setting
dimensional assessment of the need in terms of a weighing together of QoL and life-length, in line with the qualityadjusted life years (QALY)-measurement. SDM then strongly suggests that it should be up to the patient to decide which one matters more for him or her. Hence, in the opera singer case it will be more complex to assess whether William has a greater need than his brother. To arrive at such a conclusion requires more work on the relationship between QoL and life-length. Further implications for priority setting We have argued that the double focus of needs and desires within SDM poses problems regarding how to understand how badly off a patient is. In this section we shall briefly discuss two further implications for priority setting. First, it may be argued that a plausible interpretation of a need principle should imply that there are stronger reasons to give priority to the office worker rather than the opera singer since the treatment is of greater benefit to him. But this approach only helps if we have a clear-cut definition of what benefitting these people (individually) consists in. According to the (A) interpretation the office worker seems to have been benefited more than the opera singer since he has a risk reduction of 90 % while the opera singer has a risk reduction of 45 %. Accordingly they have identical needs, the only difference is that the opera singer is satisfied with ‘‘less than optimal care’’ for private reasons. But saying that 5 pills is ‘‘less than optimal care’’ for the opera singer presupposes that one does not regard his desire as partly determining what optimal care is for him. Hence it does not seem to capture all that matters for an outcome. Such a conclusion seems to be at odds with the key idea of SDM as well as counter intuitive. In line with the (B) interpretation it may seem that both the opera singer and the office worker have been benefited in a way which make it reasonable to say that their needs are satisfied—but through a dosage of 5 in the case of the first, and 10 in the case of the second. The desires presented within SDM are in different ways and to a differing degree connected to various dimensions of a good life. These dimensions are not easily transferable or easily compared with each other. Hence we no longer have any simple idea about how to understand how a patient is best benefited and especially how to compare a benefit to one with benefit to the other. Second, the idea of benefit has a close relation to the notion of evidence-based medicine for which SDM has implications. These implications have to do with the fact that there will not always be sufficient data connected to all the options patients may desire. In the opera singer case we assume that we know something about what effect different amounts of pills have on a particular heart condition. We
know that 10 pills will reduce the risk of future complications by 90 % while 5 pills will reduce it by 45 %, and we know that 4 pills have no effect (and so on). But for practical reasons the requisite knowledge will seldom be available to professionals and patients.31 In situations where there are rich data, however, we may introduce some room for negotiation, a ‘‘window of compromise’’ (Sandman et al. 2012; Sandman and Munthe 2009).32 For example, in the opera singer case it seems that 5–10 pills would constitute this window of compromise. This would partly answer the question to what extent a patient’s desire should be allowed to influence a medical decision. A well-worked-out idea about the reasonable boundaries for such a window of compromise may strike the appropriate balance between the patient’s and the professional’s opinion.33
Summing up and conclusions In this paper we have explored the relation between a patient’s desires within SDM and the idea of distribution of health care according to need. The discussion throughout this paper suggests that there is a tension between these two ideas which raises the following issues. Firstly, normatively relevant needs are traditionally assumed to be objective. To let a patient’s desire matter for his or her ranking in priority setting is to diminish the role of this traditional idea. It seems, however, easier to uphold this approach to needs on a macro level than on a micro level. Secondly, to move from a macro level to a micro level involves a difficulty to predict what patients one may expect on the latter. To introduce SDM pushes this difficulty one step further. Thirdly, a difficult normative issue arising from this double focus is whether, and if so to what extent, a patient’s desires should have implications for a patient’s ranking in priority setting on a micro level. Furthermore the introduction of SDM may make a patient’s desire not only determine his or her QoL (and/or health) but also how to weigh QoL (and/or health) against life-length.
31
A different, though related, question is how to relate to situations where there is only weak evidence for a given intervention. 32 It is worth noting here, as is also mentioned in (Sandman et al. 2012; Sandman and Munthe 2009), that the size of a reasonable window of compromise is not determined solely by the degree of evidence for a given intervention but also by such factors as access to resources and ethical boundaries for the professional or the healthcare system. 33 Here we assume that the professional will argue for the best evidence-based course of action.
123
E. Gustavsson, L. Sandman
Fourth, the introduction of a patient’s desire in medical decision-making poses further difficulties for priority setting. These difficulties regard how to understand benefits (especially the comparative factor) on a micro level as well as an impact on the availability of evidence for the different options from which patients may choose. These queries need to be thoroughly discussed within any health care system which wants to maintain the idea of priority setting according to need and practice SDM. Acknowledgments We would like to thank Niklas Juth, Lennart Nordenfelt, Ingemar Nordin and Gustav Tingho¨g for helpful discussions and comments on earlier drafts of this paper.
References Boorse, C. 1977. Health as a theoretical concept. Philosophy of Science 44: 542–573. Bru¨lde, B. 1998. The human good. Go¨teborg: Acta Universitatis Gothoburgensis. Bru¨lde, B. 2000a. On how to define the concept of health: A loose comparative approach. Medicine, Health Care and Philosophy 3: 305–308. Bru¨lde, B. 2000b. More on the looser comparative approach to defining ‘‘health’’: A reply to Nordenfelt’s reply. Medicine, Health Care and Philosophy 3: 313–315. Crisp, R. 2002. Treatment according to need: Justice and the British National Health Service. In Medicine and social justice: Essays on the distribution of health care, ed. R. Rhodes, 134–143. New York: Oxford University Press. Da Silva, D. 2012. Evidence: Helping people share decision making—A review of evidence considering whether shared decision making is worthwhile. London: The Health Foundation. Daniels, N. 1995. Just health care. Cambridge: Cambridge University Press. Feldman, F. 2004. Pleasure and the good life—Concerning the nature, varieties, and plausibility of hedonism. Oxford: Calderon Press. Fleischhauer, K., and G. Hermere´n. 2006. Goals of medicine in the course of history and today—A study in the history and philosophy of medicine. Stockholm: Kungl. Vitterhets historie och antikvitets akademien. Frankfurt, H.G. 1984. Necessity and desire. Philosophy and Phenomenological Research 45: 1–13. Griffin, J. 1986. Well-being: Its meaning, measurement, and moral importance. Oxford: Oxford University Press. Gustavsson, E. 2014. From needs to health care needs. Health Care Analysis 22: 22–35.
123
Hasman, A., T. Hope, and L.P. Østerdal. 2006. Health care need: Three interpretations. Journal of Applied Philosophy 23: 145–156. Hope, T., L.P. Østerdal, and A. Hasman. 2010. An inquiry into the principles of needs-based allocation of health care. Bioethics 24: 470–480. Juth, N. 2013. Challenges for principles of need in health care. Health Care Analysis. doi:10.1007/s10728-013-0242-7. Lantos, J., A.M. Matlock, and D. Wendler. 2011. Clinician integrity and limits to patient autonomy. JAMA 305: 495–499. Lindsay, M.S., and L.K. Reidar. 2008. Priority setting in health care: Lessons from the experiences of eight countries. International Journal for Equity in Health. doi:10.1186/1475-9276-7-4. Liss, P.-E. 1993. Health care need—Meaning and measurement. Aldershot: Avebury. Liss, P.-E. 2003. The significance of the goal of health care for the setting of priorities. Health Care Analysis 11: 161–169. Mead, N., and P. Bower. 2000. Patient-centredness: A conceptual framework and review of the empirical literature. Social Science and Medicine 51: 1087–1110. Nordenfelt, L. 1995. On the nature of health: An action-theoretic approach. Dordrecht: Kluwer. Nordenfelt, L. 2000. On the comparative approach to defining health: A reply to Bru¨lde. Medicine, Health Care and Philosophy 3: 309–312. Nordenfelt, L. 2007. Action, ability and health—Essays in the philosophy of action and welfare. Dordrecht: Kluwer. Nordin, I. 2000. Expert and non-expert knowledge in medical practice. Medicine, Health Care and Philosophy 3: 295–302. Parfit, D. 1984. Reasons and persons. New York: Oxford University Press. Parfit, D. 2011. On what matters. New York: Oxford University Press. ¨ sterberg. 1996. Value based on desires. Rabinowicz, W., and J. O Philosophy and Economics 12: 1–15. Sandman, L., and C. Munthe. 2009. Shared decision-making and patient autonomy. Theoretical Medicine and Bioethics 30: 289–310. Sandman, L., B.B. Granger, I. Ekman, and C. Munthe. 2012. Adherence, shared decision-making and patient autonomy. Medicine, Health Care and Philosophy 15: 115–127. Schroeder, T. 2009. Desire. Stanford encyclopedia of philosophy. http://plato.stanford.edu/entries/desire/. Accessed 3 Oct 2013. Sumner, L.W. 1996. Welfare, happiness & ethics. New York: Oxford University Press. Swedish Health Care Act. (1982: 763), 2 §. The NHS Constitution for England. 2013. https://www.gov.uk/govern ment/publications/the-nhs-constitution-for-england. Accessed 25 Sept 2013. Thomson, G. 1987. Needs. New York: Routledge and Kegan Paul. Thomson, G. 2005. Fundamental needs. In The philosophy of need, ed. S. Reader, 175–186. Cambridge: Cambridge University. Wiggins, D. 1998. Needs, values, truth, 3rd ed. Oxford: Clarendon Press.
