A Principle of Justice in Palliative Care, by Sean Hillman
MA student, Religion (Buddhist Studies)/Bioethics
University Of Toronto
Department and Centre for the Study of Religion
Joint Centre for Bioethics
Feb. 2010
The fair equality of opportunity principle of justice as proposed by John Rawls in "Theory of Justice" does not provide sufficient grounds for the distribution of palliative care entitlements. Norman Daniels bases his arguments for health care distributive justice on the fair equality of opportunity principle in "Just Health Care," but in so doing, fails to properly account for the special case of distribution of resources for palliative care within the greater context of health care. From the perspective of this principle of justice, it is at times questionable whether palliative care even meets the requirements to warrant belonging under the umbrella of ‘health care’ and this problem will be addressed within. Regardless, establishing palliative care as a special case in resource distribution entitlements is crucial because that which makes palliative care special is exactly what causes it to not be amenable to support by the fair equality of opportunity principle of justice. Rawls makes ‘opportunity’ the open access to positions, or offices, and careers or jobs. ‘Positions’ can be either political or institutional but can be seen simply as employment positions, with varying degrees of power, in general. There is some overlap between the two but careers can be seen that which affords an individual the opportunity to have ‘success’ with the accumulation of wealth or income, an endeavor which forms a key part of this principle of justice. ‘Equality’ for Rawls has two aspects: disregard for social background on the one hand, and a firm regard for both predisposed talents and skills and the intention to exert effort to seize opportunity, which he calls ‘willingness.’ Daniels then extends and applies the fair equality of opportunity principle to justify resource entitlements in the context of health care based on the premise that the aim of such care is to return individuals to ‘normal-species functioning’ to ensure full participation in society over the course of an entire lifetime. Where Rawls’s fair equality of opportunity principle of justice fails in justifying palliative care entitlements is in the fact that the main recipient of palliative care, the dying human, is no longer participating in the active pursuit of positions or income. This can be contested in the case of the individual who receives palliative care over a length of time, such as in the case of someone who takes a while to die. We can reduce this argument by restricting the palliative period to the average length of stay of a palliative patient, measured in weeks, or to the time spent by an individual actively dying, measured in days or hours. Where Daniels’s application of the fair equality of opportunity principle of justice fails in justifying palliative care entitlements is in the fact that, unlike health care in general, the purpose of palliative care is not the return to normal-species functioning but, rather, to achieve comfort. Full participation in society over the course of an entire lifetime is no longer relevant because the lifespan is at an imminent end. The adjacent recipients of palliative care, those close to the dying human, those close to the dead human or the bereaved, and the remains of the dead human, must also be considered. There will be room as well to discuss some interpretive variances when we look at some of the parts of the fair equality of opportunity principle of justice individually, with respect specifically to a dying human: motivation, success and talents and skills.
First I will look at the reasoning in support of treating the phenomenon of palliative care as a special case within resource distribution in health care by taking recourse in the universality of the experience of dying, and pointing to the universality of the unique aspects of that experience for the dying human and those close to them. My selection of two unique aspects of the dying experience include: the total dependency of the dying human on the care of others, and an increased need for decision-making. I intended to look also at the increased reliance on spirituality but brevity prohibited this. Using these unique aspects, I will argue that they demand entitlements and that the fair equality of opportunity principle of justice does not provide sufficient grounds to support such entitlements.
Death is experienced by every sentient being, and thus every human being must necessarily die despite there being a vast variation in the manner in which this can occur. There are timely and untimely deaths, based on our conception of a typical lifespan. This can be specific to a geographical group in the sense that their standard of living, access to resources including health care, and technological advancement will influence the average lifespan within that geographical group. Regardless of average lifespan variances, it is safe to say that death which occurs at a chronological age approaching either side of pubescence would be agreed upon by most to be untimely. There are innumerable diseases which can interrupt life either by themselves, as in the case of a terminal disease, or combined and/or cumulative disease that ends in the catastrophic failure of an essential system in the human organism. This variation in the manner in which humans die does not defeat the idea that death is a universal human experience. A disease is merely an indirect cause of death. Ultimately it is the cessation of respiratory, circulatory or brain function (and cessation of any one of these necessarily makes for the cessation of the others) that causes death. This must occur to every human organism. Although this can be disparaged for being a statement of the obvious, it is important ground-work for what is to follow.
Dependency on others
Next, we must look at how palliative care is special because of the universality of the unique aspects of the experience for the dying human and those close to them. Firstly, the dying person becomes a dependant. Childlike in their vulnerability, it most often happens that they must be in diapers once again. Of course, this does not occur in the case of instantaneous death such as that which occurs with some traumatic injuries, but there is no need to mention instantaneous death because in looking at palliative care, we are dealing with a dying process of some length, even if very short. A discussion regarding resources designated for the treatment of the remains of the deceased and caring for the bereaved would still be relevant in the case of instantaneous death, but we will save that discussion and not pursue it in this paper. One might say that it is not very unique that the dying human becomes dependant because some of those that are disabled are also dependant. This is a true and an important point. Dying will always be intimately connected to any ideas formed around disability because one necessarily becomes disabled during the process of dying. Based on this fact, we can refute Daniels’s statement that “no one, except children or the congenitally handicapped, would have a claim on social resources to meet health-care needs”1 and include the dying since they share with children and the congenitally handicapped a vulnerability and varying degrees of mental and physical incompetence (which will be qualified in the decision-making section) which makes their very survival dependent on the care of others. We can avoid the refutation by including the dying in the category of the congenitally handicapped. A discussion around the reasoning behind Daniels’s exclusion of the handicapped from acquired injuries from such entitlements must also be shelved for now. Instead, we can state that, by definition, the ‘congenitally handicapped’ have a disabling condition present from birth which impedes normal species functioning and full co-operation in society over the course of a lifetime. From this perspective, death can be seen as a congenital condition, since to be born requires that one must die, at the very least after the natural degeneration of organs crucial for maintaining the living human organism results in their irreversible failure. This death from natural decay, colloquially put as "dying of old age" or a “dying naturally”, seems to not be the statistical norm. Even in the case of death from acquired injury, having a congenitally acquired human body makes the human organism susceptible to internal and external harm that can result in death. With the gift of the human body received from our parents comes a guarantee which is not a disease per se but a condition that, like some diseases, results in death. Have we established death and dying as congenital handicaps? Our inevitable demise comes as part and parcel with the human organism from birth, and impedes normal species functioning and full co-operation in society but not over the course of a full-lifetime. To be sure, death ends that very course of a lifetime, but one cannot say that death is an impediment over the course of a full lifetime. We cannot even begrudge death’s uncertainty and unexpected arrival at any possible point on the chronological timeline of a human life, potentially occurring from the time spent in the womb all the way to the limits of normal aging in this epoch. For there to be an automatic claim on social resources, such as in the case of the congenitally handicapped, do we have to meet the requirement of there being an impediment to normal species functioning and full co-operation in society over the course of a full-lifetime? No, because children are slated in this category by Daniels and the period of childhood, like the period of dying, is temporary. Perhaps, then, any impediment to normal species functioning and full co-operation in society gives entitlement to claims on resources. In this way, if with the fair equality of opportunity principle “individual variations in talents and skills determine…fair shares of the normal opportunity range…[and one] assum[es] these [variations] have already been corrected for the effects of social and natural disadvantages”2, dying as a natural disadvantage to social participation would, like childhood and congenital handicap, give automatic entitlement to resources. But this seems weak. From Rawls we know the correction made for social disadvantage in distribution questions. With regard to “social circumstances and such chance contingencies as accident and good fortune…distributive shares” should not be “improperly influenced by these factors so arbitrary from a moral point of view.”3 Ignoring, for the moment, his qualifications regarding similar talent, skill and willingness, generally people “should have the same prospects of success regardless of their initial place in the social system, that is, irrespective of income class into which they are born.”4 What correction, then, occurs to account for natural disadvantage? Also, perhaps the term “natural disadvantage” can be misused to include too many circumstances, such as merely being “down on one’s luck.” How far should it be extended? Perhaps, also, we should reject the inclusion of “dying” in the category of “congenital handicap” because it meets some but not all of the requirements of its definition, and reject the designation of dying as a natural disadvantage because unlike the other disadvantages, it occurs to everyone. Despite pervasive and systemic denial of death in some societies, no one would reasonably reject the reality of death. Is that enough to require entitlement? It appears as though the dependent status of the dying person would not move Rawls to require palliative resource entitlements, as Martin and Reidy’s following statement suggests:
“Rawls seemed to the critics to have inappropriately bracketed the family off from the wider concerns of social justice. As a result of this bracketing, they argued, his conception both of the citizen and of the human person was male-oriented, and beyond that was modeled almost exclusively on the fully formed and “normal” adult. One important feature, then, of Rawls’s focus was his relative neglect of what might be called dependent status (children, the old, the sick, the permanently disabled) and of those (largely women) who are their main caregivers.”5
Daniels does, however, account for dependency by suggesting entitlements for two of many categories of dependents, children and the congenitally handicapped. By extension, I hold that despite ‘dying’ not necessarily meeting all the requirements of the definition of ‘congenital handicap’ it should be included under dependency for entitlements. This is not defeated by Rawls’s neglect of dependency. I hold also that palliative resource entitlements are additionally strengthened by seeing dying as a natural disadvantage, even though it occurs to everyone. Although the time of its occurrence is not predictable, death’s inevitable occurrence is definite and not random in the way other disadvantages might be seen. The fair equality of opportunity principle of justice is thus not strong enough to justify palliative care entitlements because of the logical gymnastics needed to squeeze dying into Rawls’s and Daniel’s frameworks.
An alternate route to try and justify palliative care entitlements with the fair equality of opportunity principle is to look at palliative resources for those close to the dying and the dead (the bereaved). As established earlier, since the dying human is a dependent, like the child who is unquestionably a dependent, the entitlements afforded to the family based on their participation in society because of the fair equality of opportunity principle can extend to include the dying family member, in the same manner in which entitlements are extended to include dependent children. This is a satisfactory approach for certain circumstances, but it does not provide enough support for palliative care entitlements as a whole because it does not account for dying individuals who have no kin. Here we could also mention the heartbreaking phenomenon of pediatric palliation. Is a dying child, with compounded dependency, more entitled to resources? Perhaps. Such tragic situations certainly inspire emotional favor over other palliative care contexts.
Decision-making
Moving from the dependency of the dying human, next we look at another unique aspect of the dying experience: an increased need for decision-making. Necessarily, in a health care institution, a medical or nursing practitioner will need to determine the wishes of the client with a higher risk of mortality (increasing illness, invasive procedures, untreatable fatal disease and so on) in relation to what treatments and life-extending heroics they do and do not want under changing circumstances. Some common questions concern cardio-pulmonary resuscitation, intubation and ventilation among others. What makes palliative decision-making unique as compared to that occurring in health care in general is urgency and sensitivity. Due to the fact that circumstances can change quickly and dramatically in the case of a person with an increasing risk of mortality, difficult questions must be broached in advance. With a rapid turn of events, where there is no time to ask the person themselves what treatments they would or would not want under certain circumstances, sometimes an advance directive can be relied upon. We assume that the principle of autonomy is esteemed. The relevance of this unique decision-making context in palliative care, with increased risk of mortality leading to urgency and tackling the sensitive subject-matter of continuing or ending the operation of basic systems in the human organism, is found with the question of competency. There exist cases where a dying individual maintains their full capacity to reason until death, and thus can fully participate in informed decision-making about their care. However, since disease and the process of dying can detrimentally affect the human’s mental faculties, many individuals are unable to make informed decisions. There also may be situations where the individual may be able to reason clearly, but is physically unable to communicate. In both cases, ignoring advance directives or decisions by proxy, it is impossible to know the wishes of the individual. We will look at both possibilities: that in which an individual’s wishes are known as with those who are competent and communicative, and that in which an individual’s wishes are not known as with those who are incompetent or uncommunicative, and see if the fair equality of opportunity principle justifies resource entitlements that would require distribution as the outcome of the decisions made.
To effectively bring in this principle of justice, we need to look at the dying person’s participation in decision-making. For the competent and communicative dying individual, we can include their participation in decision-making as the continued participation in society as part of the normal-species functioning over the course of a lifetime. This would be supported by Daniel’s approach, and even Rawls speaks of the importance of individuals being “normal” and “fully cooperating members of society”6 as the outcome of health care. We can easily extend the importance placed on normalizing and integrating people who are experiencing obstacles such as pain and illness to the context of palliative care, not as its outcome but as a standard. If such a person wishes for a treatment, such as using whatever means required to effectively harvest their organs for donation after brain-death, or the cessation of any further treatments except for pain management, we can see no obstacle to justifying entitlement to the resources that each trajectory requires. Where we run into complications is with Rawls’s equality scheme. Rawls often expresses the importance of disregard for social background to ensure equality, but requires the grouping of people into like levels of talents and skills, and having people grouped together with those of a similar level of willingness to participate in the pursuit of opportunity: “In all sectors of society there should be roughly equal prospects of…achievement for everyone similarly motivated and endowed.”7 Do we consider the talents and skills of the dying person fully participating in palliative decision-making? We could. If we see intelligence as predisposed and not acquired, according to the Rawlsian scheme we would have to group people of similar intelligence together when determining distribution entitlements. These different levels of intelligence could possibly have varying degrees of effective decision-making capabilities. Does this mean that these groups have different entitlements? Are groups having greater intelligence and more effective decision-making abilities more entitled? This seems unconscionable. What about other skills and talents that can be utilized by the competent and communicative dying person? We can see how it may be useful to have endurance, calmness, and empathy (for their loved ones who are suffering from anticipatory grief, perhaps). The idea of a dying person supporting their family might seem odd given their own suffering, but is a phenomenon which often occurs, as expressed by the disabled anthropologist Robert Murphy in his auto-ethnography “The Body Silent.”8 Murphy indicates that families and health care staff have expectations of the patient, such as keeping a happy front, not complaining and being compliant to treatment. When we consider endurance or calmness, we can see that these qualities may help the individual. When we consider compliance or non-complaining, such qualities may compromise autonomy. Should there be a difference in entitlements between groups of dying individuals who have varying degrees of positive inner qualities such as endurance or lack of anxiety? Looking at talents and skills this way, it is hard to see how having certain endowments can help determine entitlement to palliative resources. How about willingness, then? All else being equal, if we have two dying people and one is willing to participate in autonomous palliative decision-making and the other is not, do they have different entitlements? Certainly we cannot force anyone to assert and claim their opportunity to be an autonomous agent. We cannot threaten to withhold resources as a means of bullying an individual into making decisions. We can, however, inform the dying person that if they do not make a decision, a decision will have to be made on their behalf and it may not be in accord with their wishes. Degrees of willingness, also, does not seem to be a strong method of determining distribution. Rather than focusing on varying degrees between dying individuals, with Rawls’s statement that those with “similar abilities and skills should have similar life chances”9 we can go so far as to group those needing palliative care together, as a group containing those who have similar circumstances and who thus are in need of similar resource entitlements.
For the incompetent or uncommunicative dying individual, participation in decision-making is obstructed. With clear and extensive advance directives, autonomy and full participation in decision-making by the individual is ensured, despite their natural withdrawal from normal social interaction. Using Daniels’s framework, we could justify resource entitlements that would result from such decisions based on the individual’s continued participation over the course of a lifetime, albeit passive and without the remainder of normal-species functioning. Rawls might point to such a person’s skill in having the foresight to set up such personal advance directives, and their willingness to participate in the opportunity of affirming their autonomy even when not able to do so actively. Without such directives we normally turn to decision by proxy. This is a very complicated area of palliative ethics, one in which I see much folly and neglect in practice and, thus, demanding resources for further research. I myself am committed to such a pursuit. Who is the proxy decision-maker? Although meaning alternate or substitute, it is interesting that ‘proxy’ and ‘proximate’ appear to have the same etymological origin, and in practice we do look first to closeness of kin for a proxy. Closeness of kin can be difficult to ascertain because it might not be biological. It also can be confused with locational proximity of kin versus kin with closeness of ties, such as in the case of closely tied kin being abroad and more distantly tied kin being at hand. Nevertheless, we can assume that closeness of kin is esteemed, but not how this closeness is determined. Is it based on the family hierarchy? In establishing the original position, an ideal theoretical paradigm to serve as the basis for a theory of justice, Rawls states that“…we may think of the parties as heads of families, and therefore as having a desire to further the welfare of their nearest descendents.”10 Is the family head the best proxy decision-maker? Even if we determine a valid proxy, there can also be difficulties in maintaining the autonomy of the dying individual because the proxy might have very different ideas regarding possible courses of action. They may even say that what they think is aligned with what the dying person wishes, even if it is not the case. Without intending harm, the proxy may truly think that they know what the dying person wants and be mistaken. Without directives, or in the case of there being no other family members to consult, there is no way to check such assertions. The palliative care team can either take the word of the proxy, or take the proxy’s position as suspect and combine it with, or compare it to, the logic of the harms and benefits of different courses of action from the team’s multidisciplinary perspective. I don’t see how the fair equality of opportunity principle accounts for resource distribution entitlements in such circumstances, where there is no normal species functioning of the individual at all, except to appeal again to their dependency on kin and/or the health care team naturally demanding resource entitlements. It is hard to not see the importance of using whatever means to ensure an effective process of decision-making on behalf of the dying individual if we have esteem for the principles of autonomy and non-malevolence.
Is palliative care a valid subcategory of health care?
I have one last attack on the fair equality of opportunity principle as a way to justify palliative care resource entitlements. As a subcategory of health care in general, it could be argued that it is redundant to treat palliative care as a special case if health care is already treated as “special and should be treated differently from other social goods.”11 Here it is useful, then, to show that, according to the justice theory used by Rawls and Daniels, palliative care does not qualify as a subcategory of health care at all. We can say that dying is within the “normal opportunity range”12 because it is a normal part of every human life in bringing about it its conclusion. Naturally, Daniels sees that “health care needs increase later in life…”13 and we know intuitively that they culminate at death. Yet Rawls and Daniels both see the basic function of health care identically. Rawls sees health care as "treatment that restores persons to good health, enabling them to resume their normal lives as cooperating members of society."14 Daniels also sees health care serving to “maintain, restore…normal species functioning. ”15 To return the human to normal species functioning is not the purpose of palliative care. If the fair equality of opportunity principle is able to provide justification for health care entitlements, and the purpose of health care is not the same as that for palliative care, then this is yet another reason to reject this particular principle of justice as a basis for justifying palliative care entitlements. I concur with Daniels that there are many functions of health care16 and extend that statement to palliative care. However, it is often cited that the main function of palliative care is to provide comfort.17 Daniels holds that, of the many functions of health care, that of “reducing pain and suffering is not a general enough function to explain the importance of health care.”18 I hold that, for palliative care, it is.
Endnotes
1. Daniels, Norman; Just Health Care
Cambridge [Cambridgeshire] ; New York : Cambridge University Press, 1985.
p.20
2. Ibid. p.52
3. Rawls, John; A Theory of Justice
Cambridge, Mass. : Belknap Press of Harvard University Press, c1971.
p.72
4. Ibid. p.73
5. Martin, Rex; Reidy, David A. (Editors); Rawls’s Law of Peoples: A Realistic Utopia?; Malden, MA; Blackwell Publishing, 2006.
pp.14-15
6. Rawls, John; Political Liberalism
New York, Columbia University Press, 1993.
p.184
7. Rawls 1971: p.73
8. Murphy, Robert F.; The Body Silent New York: Henry Holt, 1987.
9. Rawls 1971: p.63
10. Ibid. p.28
11. Daniels, 1985: p.19
12. Ibid. p.33
13. Ibid. p.52
14. Rawls, John; Kelly, Erin (Editor); Justice as Fairness : A Restatement
Cambridge, Mass. : Harvard University Press, 2001.
p. 174
15. Daniels 1985: p.32
16. Daniels 1985: p.49
17. Hickey, Joanne V.; The Clinical Practice of Neurological and Neurosurgical Nursing; Philadelphia, PA: Lippincott Williams & Wilkins, 2009.
p. 28
18. Daniels 1985: p.49
