Health-care needs and shared decision-making in priority-setting

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.

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.).

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.

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.

Even though some writers disagree (Thomson 1987, 2005), see (Crisp 2002; Juth 2013; Gustavsson 2014) for arguments that all needs are instrumental.

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.

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 Hermerén 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.

See Liss (2003) who argues that one should adhere to this position for rational reasons.

On top of this we might have a number of more or less complex combinations of these three basic theories (see e.g. Brülde 1998).

Sometimes other terms are used to mark this distinction: naturalist versus normativist, or analytic versus holistic.

See (Nordenfelt 1995, pp. 23–34) for criticism of this view.

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 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.

See (Brülde 2000a) for criticism of this view. See (Nordenfelt 2000) for a response to (Brülde 2000a), and (Brülde 2000b) for a response to (Nordenfelt 2000).

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.

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).

See again Schroeder (2009) for a discussion.

For this idea see further (Parfit 1984; Rabinowicz and Österberg 1996; Brülde 1998).

Statements about needs and instrumental desires are often elliptical. That is, they often implicitly presuppose the goal component.

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.

For further discussion of the relation between desires and needs see e.g. Wiggins 1998; Thomson 1987; Griffin 1986.

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.

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 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.”

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.

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.

The human knee has four major ligaments. The anterior cruciate ligament is one of them.

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.

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.

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.

A different, though related, question is how to relate to situations where there is only weak evidence for a given intervention.

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 health-care system.

Here we assume that the professional will argue for the best evidence-based course of action.