Helping People Out

I recently taught a seminar at the Yale School of Nursing. A bumper sticker on another car in the lot always caught my eye. It read: "Midwives Help People Out." This little slogan came to mind when I started to think about how writing ethics guidelines for professionals who provide end-of-life care involves grappling with "unguidelineable"—rule-resistant, consensus-challenged—topics such as physician-assisted suicide/physician-assisted death. When we launched our Guidelines project in 2006, only one state, Oregon, had legalized this controversial practice. Now Washington has joined it, via referendum, and Montana may be next, via case law.

The backslash in the term hints at one aspect of the debate: what to call it? Different commentators prefer different terms. The cumbersome acronym "PAS/PAD" represents both the practice and the differing opinions about its morality.

Lacking a crystal ball, I can't yet be certain how our consensus working group will decide to address PAS/PAD, as practice and as debate, in the final version of our guidelines. I can, however, think of four possibilities.

As PAS/PAD is illegal in most states, we could simply refer our readers to state law. Indeed, ethics guidelines must frequently do this, as end-of-life law and policy tend to be made at state level. However, other practices, available only in some parts of the United States, may be "guidelineable" if they appear to solve a structural problem in end-of-life care. The Physician Orders for Life-Sustaining Treatment, or POLST, Paradigm for documenting patients' end-of-life treatment preferences, with programs available in six states and under development in several others, is an example of such a practice: POLST's aim is to ensure that advance directives stick to patients across care settings. But PAS/PAD doesn't solve a structural problem like this. And telling our readers to check their local legal listings reduces ethics to "obey the law." As ethical guidance, it's a punt.

Another choice is to present the ethical arguments for and against permitting PAS/PAD. But that's not what guidelines are for. At the beginning of this project, we asked clinicians in our working group what they had come to expect from guidelines as a form. They told us that while clinical practice guidelines tell them what to do, ethics guidelines assist in a "messy situation" involving suffering, conflict, distress, or flawed systems—and sometimes all of these. I do not imagine our reader as someone opening a book or a Web site called "ethics guidelines" in the hope of finding a philosophical discussion. There are other books (and perhaps other Web sites) for that. But failing to consider clinical expectations of "guidelines" as a form is another punt.

Taking the position that good palliative care "solves" the moral problem of PAS/PAD may not be sufficient, either. Ethics guidelines must make firm distinctions between pain and symptom relief for dying persons and deliberate drug overdoses administered to accomplish PAS/PAD. They must encourage professions and institutions involved in end-of-life care to keep uprooting myths—often based in liability fears—that perpetuate suffering by conflating the relief of pain and suffering with PAS/PAD. This will promote better palliative care overall. It will not make the debate over PAS/PAD go away.

The fourth alternative is to be clear about what it means to "help people out" during this inevitable stage of life. A hospice physician once told me that the janitor might have more insight into a patient's suffering than she had if the janitor was the one making time to sit down and talk. Guidelines for end-of-life care may not need to sort out the ethics of PAS/PAD, since the vast majority of deaths will not involve a request for it. However, caregivers should nonetheless confront their beliefs about the end of life, including beliefs about PAS/PAD and about the relief of pain and suffering, as these beliefs will affect how they respond to these morally messy situations. End-of-life care is intimate, tactile, professionally humbling. Our guidelines for it should keep...