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 counter-cultural, even though it is still under-appreciated 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 modus vivendi that has been the considered goal of hospice for a long time. That is not to gainsay it, of course. It is a sensible way to embrace the complex heart of hospice ethics. It preserves the ethical tension of hospice without allowing that tension to become paralyzing or dehumanizing.
The Center for Humans and Nature
To the Editor: Courtney Campbell and Jessica Cox offer an insightful, at times profound analysis of the complex relationship between hospice and physician aid in dying in Oregon. Their critique challenges hospices located where this practice is legal to look more deeply into the existential implications of their philosophies and practices for patients electing to use it.
One implication that deserves to be made explicit is Oregon hospices' apparent shortfall in facilitating the overarching value that Campbell and Cox label "quality at the end of life" for patients who use physician aid in dying. Along with promoting human dignity, enhancing the quality of life to its very end is a classic aim of hospice care. Moreover, 88 percent and perhaps more of Oregon patients who use physician aid in dying have been enrolled in hospice. But no hospice presence accompanies most of them when they ingest the lethal agent, or in the interim till death occurs, and one patient in twenty will experience some complication after taking the agent, but may lack competent assistance to remedy it. Further, 40 percent of these patients have chosen physician aid in dying partly because they fear being a burden to others, and the majority report being overwhelmed by the losses their illness has imposed or threatens to impose on them (K. Hedberg et al., "The 10-Year Experience of Oregon's Death with Dignity Act: 1998-2007," Journal of Clinical Ethics 20, no. 2 : 124-32).
For these patients, at least, hospice has not met its aim of supporting "quality" at the end of life. There are, to be sure, possible mitigating factors for each item in the preceding list. But taken together, they suggest a critical point: for these patients, hospice as we know it--even in Oregon, where conditions are most favorable--is simply not designed to support "quality" fully at the end, whether in the form of a peaceful and dignified physician-aided death or of relational support that can buffer the realities of loss while patients consider their decision.
All this is a reminder that hospice is not a die-as-you-like enterprise. Perhaps we cannot expect actual hospices to adopt the policy of studied neutrality on physician aid in dying that Campbell and Cox advocate. It's not in their genes: in hospice you don't die fighting death, and you don't die hastening death. The philosophical tensions around the practice that Campbell and Cox so adroitly expose seem destined to persist. Unfortunately, the parallel shortfalls in care for patients considering or choosing physician aid in dying may persist as well. On the other hand, Oregon's actual incidence of physician aid in dying has remained remarkably low despite the fact that it is taken for granted in the state's popular culture. Surely, despite the tensions and gaps, hospices have had something to do with this outcome, even if many other factors are at work.
As one who lives in a state without legalized physician aid in dying, I wonder if Oregon's experience provides food for thought for hospices elsewhere. The hospice commitment to quality at the end of life is typically coupled with a conviction that enhanced quality really is possible, and that hospice will help to make it a reality: "can" implies both "ought" and "will." When a hospice patient requests physician aid in dying, does that choice signal to hospice personnel that they have "failed," just as patient deaths are often viewed as failures in rescue medicine? Then the patient's seeking aid in dying would be a continuing reminder of the hospice's failure. Perhaps it is no coincidence that the organizational response of many Oregon hospices when patients consider or choose physician aid in dying is a kind of structural distancing.
Where the practice is not legalized (and no doubt even in Oregon), there are hospice patients who hasten (or try to hasten) death on their own. Such incidents can have a profound impact on hospice staff members, particularly when the attempt--usually seen as suicide--succeeds, and staff didn't see it coming. Could the very conviction that hospice and its dedicated, competent people can provide every patient with a better quality of life become a barrier to recognizing and addressing what is really going on with some patients? Ironically, if the hospice belief system hinders professionals from engaging a situation that is not supposed to arise on their watch, whether in Oregon or elsewhere, more suffering rather than less may result for all involved.
Advocate Health Care and Elmhurst College
To the Editor: Approximately 90 percent of persons who have ingested medication under Oregon's Death with Dignity Act were enrolled in hospice care; however, Courtney Campbell and Jessica Cox's recent examination of hospice policies and guidelines related to the ODDA found that, while most hospices participate to some extent, no hospice is willing to assist to the fullest extent permitted by law. The authors suggest that questions about legal compliance inhibit collaboration with patients seeking physician-assisted death.
This is true, but as the former director of the Oregon Hospice Association (a position I held for twenty years), I know Oregon's hospices are vigilant in complying with conflicting federal and state laws, which helps allow dying Oregonians to choose both hospice and physician-assisted death. Within the following constraints seemingly restrictive and arbitrary hospice policies make sense. First, if Oregon's hospices are to participate in Medicare and Medicaid programs--as they must to remain financially viable--they are required to meet Hospice Conditions of Participation (42 CFR Part 418). More than 80 percent of hospice patients are Medicare beneficiaries. Second, as recipients of federal funds, hospices are subject to the Assisted Suicide Funding Restriction Act of 1997, which prohibits the use of federal funds for items and services related to suicide, euthanasia, or mercy killing. Third, as a team of coordinated health care professionals, hospice programs are not "participants" as defined by the ODDA. "Participants" are limited to the attending physician, the consulting physician, and/or the psychiatric or psychological counselor; participants who follow the ODDA are protected by law (ORS 127.800-897). And finally, the ODDA excludes from "participation" (1) making the terminal diagnosis or prognosis, (2) providing information at the patient's request, (3) providing a referral to another physician at the patient's request, and (4) acting outside a participant's employer/employee relationship to contract with a patient.
The study revealed differences over four caregiving considerations. But none of the fifty-five hospices (86 percent) participating in the study provided medication to a patient using the ODDA. Although Medicare conditions of participation require hospices to provide all medications related to a patient's terminal illness, the Assisted Suicide Funding Restriction Act prohibits Medicare dollars from being used to provide the prescribed medication for physician-assisted death.
Hospice programs use different language. A provision of the ODDA prohibits actions from being construed as "assisted suicide." However, twenty-nine of fifty-five hospices used the term "physician-assisted suicide" to describe the act. This includes all of those who are opposed to any participation--who are determined to "call a spade a spade." Many of the remainder, I would posit, simply have not updated their policies. I would also suggest that those who use the term "physician-assisted suicide" are being less than cautious.
Hospice programs provide different levels of information. Since hospices are not ODDA experts and patients assume accurate information from those in positions of authority, hospices are prudent to designate trained spokespersons or refer patients to Compassion and Choices. Hospices that would disregard requests, however, are doing their patients a disservice.
Hospice programs communicate differently with attending physicians, who are invariably not the hospice medical director. Unless a hospice segregates federal funds, it will have a hard time under the Assisted Suicide Funding Restriction allowing its employees to act as ODDA "participants." A hospice, however, cannot prevent its medical director or hospice physician from "participating" as a patient's attending physician outside an employment relationship with the hospice--and perhaps should encourage that participation.
Hospices also differ in policies that allow or disallow the presence of employees during the ingestion of prescribed medication. Many hospices, including those supported by the Catholic Church, require staff to leave the premises at ingestion, but allow staff to return to support family members and friends. Some do so to avoid challenges related to what constitutes "assistance" in other state laws or the Assisted Suicide Funding Restriction Act. And some patients simply prefer to ingest medication with no one present. Hospices respect that right.
It's important to remember that hospices exist to provide hospice care. Early research suggested that the high quality of hospice care provided in Oregon was a reason for the low utilization of the ODDA. I believe that still holds true. I also strongly believe that all hospices--regardless of their location in Oregon, Washington, Montana, or elsewhere--should develop carefully considered responses to questions from patients who may wish to hasten death.
To the Editor: Courtney Campbell and Jessica Cox provide a thoughtful analysis on the degrees of engagement by Oregon hospices in physician-assisted death and how such participation (or lack thereof) aligns with hospices' mission statements, relevantly related moral values, and caregiving commitments. I make an additional argument in support of Campbell and Cox's view that there is no inconsistency between hospice staff attending patient deaths that occur through physician assistance and maintaining a moral stance against physician-assisted death. If I am right, then with the exception of hospices that do not participate in physician-assisted dying, for which the point is moot, patients who enroll in hospices will not have to die the right kind of death so as to avoid dying alone.
It is useful to work through why accompanying patients during medication ingestion is supposed to violate the commitment not to hasten death. Campbell and Cox write, "hospice staff worry that being present at ingestion can create a public perception that hospice encourages or endorses physician-assisted death." It seems that this concern is fair just in view of the symbolic value we assign to attending socially organized functions. Consider weddings as an example. Attendance at a wedding usually signifies a kind of moral support or approval for the union of the couple. Insofar as decisions and actions can express messages, persons who do not approve of the union may choose not to attend the wedding because they do not approve. Similar explanations seem to apply to other decisions, such as choosing not to attend a baby shower because the couple is unmarried or gay.
While attendance can signify support, another (arguably) reasonable explanation can be offered. There seems to be a relevant distinction that merits attention here: moral support for a person versus moral support for an action that person performs. For example, the mother who disapproves of her daughter's marriage can be consistent in her disapproval while also attending the wedding because she loves her daughter. Notice that the mother's reason for attending the wedding has nothing at all to do with her moral approval of the union. The same can be said for the baby shower examples above--one can attend a shower because one cares for a friend, while not approving of her reproductive choice, or choice in partner, or both.
Consider one final example in which we can tease apart reasons one attends a function from the moral beliefs one holds. Teaching in Huntsville, Texas--home to the Walls Unit that houses the death chamber--executions are a common occurrence for me. What might attending an execution communicate? The message communicated by attendance is not univocal. This much is clear when one considers whether the attendee appears for the condemned or the victim. For the offender's family, it seems fair to say that attending the execution does not imply that the family approves of the execution, nor of the offense for which their family member is being executed. Rather, it seems plausible that the family attends the execution because they love that person. Similarly, that a victim's family attends an execution does not, without further argument, express that they approve it. Rather, attending the execution may have nothing to do with the offender per se, but rather with a sense of obligation to the victim. Therefore, attendance does not univocally communicate or conclusively demonstrate approval of execution.
So what might this mean for Oregon hospices that seek to accompany patients through their final stage of life, while also not condoning physician-assisted death? If what I have said above is at all convincing, attending a patient's death when that patient ingests life-ending medication does not necessarily amount to support for physician aid in dying, but rather can be an expression of care for the dying patient--a refusal to abandon the patient when that patient's need for others might be most urgent. While I understand the concern about other messages such attendance can convey, hospices can take steps to make clear the message presence at physician-assisted death communicates by following a suggestion from Campbell and Cox. Through their mission statements, hospices can render transparent the values to which they are committed and philosophical justification(s) for the values they endorse. Transparency regarding the reasons hospice staff attend physician-aided death will help hospices clarify their unconditional commitment to accompany patients in their final stage of life, while also not morally condoning physician-assisted dying. My hope is that taking value transparency seriously will relieve hospice patients from having to choose between dying in the right way and dying alone.
Sam Houston State University
To the Editor: Courtney Campbell and Jessica Cox's article shows that, public perceptions to the contrary, hospices in Oregon do not take a major role in physician-assisted death. The reasons impeding participation are both moral and legal: moral because hospices are wary of complicity in the hastening of death, and legal because Oregon law limits whom the patient may seek aid in dying from to an attending physician. The authors summarize different degrees to which Oregon's hospices have participated in physician aid in dying within moral and legal parameters, ranging from policies of absolute nonparticipation to policies that allow hospices to participate as fully as possible within the limits of Oregon's Death with Dignity Act. But patients are not informed of a specific hospice's policy regarding its level of participation until after they have enrolled--a situation that limits patients' informed selection of hospice programs. At the end of the day, according to Campbell and Cox, few hospices participate in Oregon's Death with Dignity Act to the fullest extent permitted by law. Morality and legality have led to outcomes that have produced an excessively cautionary and confusing environment.
The practical result is a gap between a commitment to moral integrity and legal compliance on the one hand, and a commitment to serve dying patients' needs on the other. These are no small matters given that, in Oregon, more than three in four deaths of patients using the death with dignity law occur without the presence of an attending physician, and one in twenty involves untoward and unexpected medical complications. In the current context, patients may be left to die without adequate care, a result that departs from a core value of nonabandonment and compassion in hospice practice.
As a policy recommendation, Cox and Campbell endorse the idea of "studied neutrality" toward physician aid in dying. On that view, hospices should acknowledge the diversity of views--including those held by their staff members--toward physician aid in dying. They should allow both for more open conversations with patients and for ways in which hospice care providers can work with patients who request physician-assisted death.
Yet is it not obvious that the term "studied neutrality" aptly captures the substance of this policy idea. The recommendation is not neutral toward the cautionary environment in Oregon, and it encourages more active participation among hospice providers than some hospices permit. Moreover, it would be difficult to distinguish this recommendation from the neutrality already espoused by Oregon hospices. If Campbell and Cox wish to initiate change for the terms of and the climate surrounding end-of-life care, then a different form of public language is needed. Perhaps "dialogical care" would be a better rubric, given the importance the authors assign to dialogue, transparency, and the good of attending to patient welfare.
Beyond this terminological matter, I also believe that Campbell and Cox need to say more about how a policy of studied neutrality would help Oregon's hospices move beyond the current cautionary ethos. It is not obvious how their view of neutrality would handle a key moral concern in this environment--namely, cooperation. If a hospice wishes to maintain a stance of relative noncomplicity but allow staff members "to work with patients who make requests for physician-assisted death," then greater precision about such work or a new description of the practice is called for.
I also invite the authors to think normatively about the pluralism that exists within Oregon--a pluralism that allows some hospices to refuse to participate in Oregon's Death with Dignity Act. Is this pluralism warranted? If Campbell and Cox believe that it is, then they need to describe and argue for a policy that goes beyond helping some hospices reconcile their values to one that, at a structural level, makes sense of an environment in which some hospices are free to ignore a patient's legally protected rights. Obviously, another set of values is being balanced at this structural level. A clearer normative argument from Campbell and Cox would help readers understand how to think ethically both within hospices and among them.
Richard B. Miller
Courtney S. Campbell and Jessica C. Cox reply:
We are most appreciative of the insightful commentaries presented here that enrich the discussion of how philosophies of hospice care may be reconciled with the practice of physician-assisted death. We offer some additional reflections, though it is not possible to address all the substantive points of the authors in the space allowed.
When we do not have a shared substantive conception of the human good--or the human good in the dying process--we often resort to a commitment to shared procedures to maintain caring relationships amongst moral strangers. Bruce Jennings is quite correct to contend that hospice historically has embodied a conception of human flourishing while dying that is in tension with another vital value of hospice care, patient control of the dying process. In short, a metaphysical question--the meaning of a good dying--is not necessarily compatible with a moral norm in a caregiving setting wherein patient control has been rendered as respect for self-determination. Our impression, based on different and independently conducted research and reinforced by our recent collaborative study, is that Oregon hospices now embody the assumptions of a culture of autonomy. Hospice programs seem rather clear on conceptions of a "bad death," but notions of a "good" dying or death are held to be the prerogative of patients and their own subjective constructs of meaning. Even the language of "dignified death," politically appropriated as it has been for purposes of the Oregon statute, is reducible to a cluster of patient freedoms--an important but philosophically truncated conception of dignity.
The approach of "studied neutrality" advocated initially by Timothy Quill and Christine Cassell and subsequently endorsed by the American Academy of Hospice and Palliative Care Medicine then assumes importance as a method by which moral strangers can provide and receive care in the context of a diffused agnosticism about the good or dignified death. Richard Miller is right to call for a more elaborate development of this approach than what we presented in our essay. We felt the model of "studied neutrality" identified a set of procedures that hospice programs aspire to in patient care in general, including professional staff discussion, transparency, dialogue and engagement with patients, and collaboration as a caring team. These procedures can readily be integrated into care for patients who make specific inquiries about physician-assisted death.
We acknowledged that a limit of our study was that we did not have insight into the processes by which the various documents and policies we analyzed were developed. This is important because a necessary element of the studied neutrality approach is that the issue first be "studied." Our impression is that in some--and perhaps in many--instances, this hasn't occurred: This is most recognizable in policy positions that adopt a stance of no participation, no direct participation, or no active participation, when the practical caregiving procedures outlined by such hospices in response to a patient inquiry clearly manifested modes of programmatic or staff involvement. At the least, as highlighted by Ann Jackson, the meaning of "participation" for hospice programs requires clarification.
Once the issue is given the sustained study that it deserves, individual hospices will be in a much better position to develop greater coherence between their values and their practices. We advocate initiating or continuing conversations among not only hospices in Oregon, Washington, and Montana, but also in other hospice programs where the practice is not legal, because the issues raised by physician-assisted death strike to the core of hospice identity and integrity. We remain convinced that, even as hospices care for the vast majority of patients who make requests for assisted death, they also want to retain their moral autonomy and so set limits to "participation" to ensure that "physician-assisted death" does not become "hospice-assisted death."
We are admirers of hospice care and the dedication of hospice professionals and staff. They are ordinary people who render extraordinary service and care. There is little doubt that the commitment of hospices in Oregon and Washington to offer the best quality care to dying patients and their families is responsible for the relatively low rate of patients who resort to physician-assisted death. A hospice should not view an enrolled patient who makes a request as a caregiving "failure," but indifference to a philosophy of care, core values, and their translation into practical caregiving would be a moral failure.
Letters to the editor may be sent by e-mail to firstname.lastname@example.org, or to Managing Editor, Hastings Center Report, 21 Malcolm Gordon Road, Garrison, NY 10524; (845) 424-4931 fax. Letters appearing in the Report may be edited for length and stylistic consistency.
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|Author:||Jennings, Bruce; McCurdy, David; Jackson, Ann; Buccafurni, Diana; Miller, Richard B.|
|Publication:||The Hastings Center Report|
|Article Type:||Letter to the editor|
|Date:||Jul 1, 2011|
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