Unreconcilable Differences?

To the Editor: The sensitive discussion by Courtney Campbell and Jessica Cox on hospice care and physician-assisted death (“Hospice and Physician-Assisted Death: Collaboration, Compliance, and Complicity,” September-October 2010) is a model blend of ethical analysis, empirical study, and policy assessment in bioethics. The legalization of physician aid in dying has raised important ethical issues for hospice that go to the broader question of its evolving mission and its place in the landscape of end-of-life care in our society.

Hospice began, one might say, as a philosophy of care of the dying that formed a countercultural movement. It offered a systematic and holistic approach to care involving not only the dying person but surrounding family and friends. It aimed to make living while dying meaningful and to heal and strengthen relationships even in the face of grief and loss. Over time, Medicare funding and other developments led hospice to grow to the point where today it cannot be considered countercultural, even though it is still underappreciated and underutilized. But it is no longer a “movement”; it is a well-established form of health care delivery. As such, hospice has now entered the domain of our autonomy-focused ethic of health care.

This is altogether appropriate, but it lives in some continuing tension with the fact that hospice also embodies a substantive vision of the human good—in this case, a conception of human flourishing while dying. Facilitating one’s autonomy at the end of life is not quite the same thing as helping the person understand how they should live while dying and facilitating the successful accomplishment of that challenge. In a sense, therefore, the ethical dynamic of all hospice care is a kind of negotiation between the subjective goals of each person and the relational conditions conducive to achieving good life closure. It is always uncomfortable—and actually clinically inappropriate—to name that tension and that negotiation with patients and families too explicitly.

My sense is that the emergence in the 1990s of the issue of legalizing physician-assisted suicide (as it was almost universally termed then) brought this tension within the hospice philosophy into stark relief. From the beginning, the hospice community was sharply divided on the issue of legalization. Still struggling to gain wider acceptance, hospice leaders were wary of too close an association with the legalization movement. But this was not only a strategic or political view; the hospice philosophy itself could not fully embrace the two main pillars of the legalization argument.

The first argument for legalization had to do with avoiding suffering. Hospice believed that it could largely deal with that problem. More difficult, perhaps, was the second argument for legalization. This was the argument from personal autonomy and choice. Legalization of physician-assisted suicide meant that medically certified terminally ill persons (not coincidentally, the same population targeted by the Medicare Hospice Benefit) should be empowered to short-circuit the natural dying process. In other words, legalization would liberate dying people from what hospice had been teaching could be a meaningful and valuable time of life. On the other hand, a major part of the quality of living while dying that hospice champions is autonomy, respect, and dignity. How could hospice stand against that?

The range of positions and policies that Campbell and Cox report on and analyze will not come as a surprise to those who followed this debate during the past two decades. The range of responses, from full participation to nonparticipation, seems to me to reproduce the dynamics of the essential ethical tension between a substantive conception of good dying and a respect for individual autonomy, only now played out in more specific legal, policy, and clinical aspects in those states where physician aid in dying is legally authorized. The strict nonparticipation option they discuss is very hard to explain in terms of the ethical tension between autonomy and good dying because the promise of steadfast presence and nonabandonment is a core tenet of the hospice philosophy of the good. The other options, however, can be interpreted as various solutions to that tension. The approach of “studied neutrality” that they recommend articulates a...