General justification for PAD

Before proceeding with our analysis, it is appropriate to say a few words about the general justification for legalising PAD. Briefly, two claims play the main role. The first one, based on the value of autonomy, holds that granting an autonomous request for PAD is morally good because it allows patients to influence the timing and the process of dying according to their own preferences and goals. The second one, based on the value of well-being, holds that granting an autonomous request for PAD is morally good because it removes unbearable suffering that has no prospects of recovery and that cannot be relieved by other reasonable means. However, even among those who are generally in favour of legalising PAD, some argue that this is justified only if good quality PC is widely accessible. Otherwise, they claim, PAD should be banned until this goal is achieved. Four arguments are normally used to support this claim, which we discuss next.

Assessment of the main arguments

The first argument against legalising PAD where access and quality of PC is limited we call the argument of lack of autonomy. Although there are patients who choose PAD without exhausting all palliative treatments first, most of them do not.2 Patients who lack access to good quality PC cannot choose this option. Consequently, some of them might request PAD in order to avoid suffering even though they would choose better care if this were available. According to this argument, whether such choices are autonomous should be doubted. However, if PAD is legalised in these circumstances, some patients might request it who might lack the autonomy to make this decision. This is the stance of Mary Shariff, for example, when she claims that good PC should be guaranteed before legalising PAD because otherwise “there is a risk that a patient's request for assisted death will lack consent because of the absence of meaningful choice”.3

Certainly, a lack of better options limits the choices a person has available. However, an autonomous decision is not the same as a decision after trying all other options. We should not demand that a patient's decision coincides with the decision they would make under ideal circumstances to consider it autonomous, and therefore, worthy of our respect. All we should require is that their choice is the result of correctly applying the skills needed to make a decision based on their own values and beliefs.4 Although there is no absolute consensus, it is generally accepted that this follows when the patient is competent, sufficiently informed and free from controlling influences, such as manipulation or coercion.5 ,6 Regarding the first condition, it would be mistaken to assume that the presence of suffering in these patients, including physical pain, undermines competence.7 This aptitude must be assessed in each patient, and relatively to the decision to request PAD. Nor should there be impediments to the provision of information in such cases. As for the last condition, physicians should assess whether the patient is being manipulated or coerced, just as they should do with any important medical decision including, for instance, a request for palliative sedation. Some claim that the very absence of palliative options necessarily coerces patients. However, we believe that this results from a misguided tendency to regard every serious situation in which the patient has to make a very difficult decision as coercion.6 Assessing the capacity of healthcare systems to relieve suffering is essential for a patient to make a rational choice based on their preferences. Therefore, we believe that PAD should not be banned where access to PC is limited on the basis that limited access to PC prevents an autonomous choice.

The second argument against legalising PAD where good quality PC is not widely available we call the argument of existing alternatives. According to this, PAD should be a measure of last resort to turn to only when all alternatives have been exhausted. However, if PAD is legalised in these circumstances, some patients might request it who could still benefit from better palliative options. Michael Gill, for example, warns that we should perhaps forbid physician-assisted suicide where good PC is not widely available because “it is uncontroversially regrettable if a person commits suicide but would not have done so if her end-of-life care had been better”.8 Although the focus of this article is not restricted to physician-assisted suicide, this quotation is intended to illustrate an argument raised against legalising PAD more generally when access to PC is still limited.

We share the view that it is highly regrettable if a patient requests PAD only because good quality PC is not being received. However, denying PAD because there are palliative alternatives somewhere that could relieve the patient's suffering results in more suffering. Where these options are not available, it is simply impossible to relieve suffering by means of them. If we forbid PAD until this situation has changed, we remove the only option left for many patients to avoid further suffering in the meantime.9 As a result, we condemn many of them to a worse death. Moreover, we interfere with the autonomous decision of these patients to request PAD that we have discussed previously. Since doing so results in more suffering, it is hard to see how this could be justified using this argument. As an additional point, it is also worth noting that PC cannot remove all requests for PAD. Most patients request PAD driven by feelings of loss of dignity or autonomy that are often very resistant even to good quality PC.10 ,11 Therefore, we believe that PAD should not be banned where access to PC is limited on the basis that there are still palliative options somewhere that could relieve suffering.

The third argument, which we call the argument of unfair inequalities, focuses on the fact that limited access to PC often affects specifically, or predominantly, those economically least advantaged. If PAD is legalised in these circumstances, some of these patients might request it only because they cannot afford better medical care. Since appropriate PC should not be limited to those who have more money, this situation would be unfair. In a similar vein, Joanne Lynn claims that endorsing death for the poor “because our community does not provide the care they need should be a terrifying prospect”.12 This argument has been raised more usually in countries that lack universal coverage of healthcare such as the USA and South America.

The available evidence shows that PAD is actually more frequent among the affluent than the poor.13 However, this observation does not entail that some patients among the latter do not, or will not, request PAD because they cannot afford good quality PC. Several other reasons may explain a higher prevalence of PAD among the affluent, including differences in views about dignity or autonomy and, perhaps, even differences in access to this alternative. Hence, this argument posits a serious challenge. Nevertheless, even if some requests for PAD derive from lack of economic resources to get better care, forbidding PAD does nothing to help these patients. On the contrary, as already noticed when analysing the previous argument, it reduces their options even more, condemning many of them to a worse death. The real problem that we should address is the unfair distribution of care. Legislation on PAD should be accompanied by a commitment to guarantee that PC will be accessible for everyone, regardless of their economic situation, within the shortest possible time. In the meantime, physicians should seek help through public agencies to relieve the suffering of these patients and good monitoring should be carried out to assess whether legalising PAD leads to unfair inequalities in a specific social context, but PAD should not be denied until this problem has been solved.14 Therefore, we hold that this argument also fails to justify a ban on PAD where access to PC is limited.

The last argument against legalising PAD in these circumstances we call the argument of the antagonism between PAD and PC. According to this, legalisation of PAD hinders the development of PC by offering an alternative to it. A policy that hinders improvements in the access and quality of PC where this could alleviate the suffering of many patients, and thus, remove some requests for PAD, is a bad policy. This important point has been raised, among others, by the European Association for Palliative Care (EAPC).15

This argument can be challenged on the basis that a ban on PAD for the benefit of those who will suffer in the future does not give a fair treatment to those who are suffering today. Moreover, even if one denies that such would be unfair, the argument can still be challenged on empirical grounds, as the evidence shows that the prediction it makes is not necessarily true. In a report written at the request of EAPC, the authors concluded that PC is well developed in countries where PAD is legal, and that the idea that legalisation hinders the development of PC lacks empirical support.16 Moreover, research shows that PC and PAD collaborate to remove the patient's suffering, rather than acting as opposing forces.17 Social and political pressure resulting from legislation may also contribute to improve access to PC. Admittedly, the outcomes might be different in different social contexts, and this empirical hypothesis should be assessed in every case before legalising PAD. Contexts where significant discrimination exists are especially important. However, unless there are strong reasons indicating that legalisation will have this effect, we believe that a ban on PAD is not justified. However, adequate legislation and education, as well as good monitoring of the development of PC, are necessary.