At end of life, listen to patient's fears, values

What can you tell patients about hastening death and assisted suicide?

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted Jan. 26, 2009.

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With physician aid in dying now legal in three states and the subject of much media reporting, more patients may ask about end-of-life options.

Reply: On Nov. 4, 2008, Washington state voters passed the Washington Death with Dignity Act by a wide margin (57% in favor) after a spirited debate over physician aid in dying. It bears emphasis that the turnout was close to 85% of registered voters. The act allows a patient with a terminal illness to request a lethal prescription and a physician to prescribe a lethal prescription under tightly controlled conditions.

In my opinion, one of the reasons voters approved this initiative by such a wide margin was that, as the 1997 Institute of Medicine's report on end-of-life care concluded: "Too many people suffer needlessly at the end of life both from errors of omission when [medical professionals] fail to provide palliative and supportive care known to be effective and from errors of commission when [medical professionals] do what is known to be ineffective and even harmful."

While end-of-life care education is improving, the IOM conclusions are still accurate for the vast majority of practicing physicians. Moreover, people in the United States still have not learned how to talk realistically and comfortably about the end of life.

Physicians individually and institutionally must now deal with the implications of this new -- and, in my view, extreme -- option in end-of-life care. As a family physician who has practiced hospice and palliative medicine for more than 23 years, I believe it is critical that physicians thoughtfully explore the many challenges and opportunities this new law provides.

Although clinicians try to provide the most compassionate and highest-quality end-of-life care to their patients, the reality is that many patients and families experience significant suffering due to medical care that prolongs dying rather than respectfully facilitates the natural event of death. Our responsibility as physicians is to understand each unique patient's and family's definition of dignity in dying so we also can assure them of a respectful death with or without physician aid in dying.

Washington and Oregon laws compel physicians to reconcile their personal values (that traditionally emphasize a commitment to healing and prolonging life) with the act of "hastening death." Clearly this is a complex ethical, emotional and spiritual issue -- I have yet to determine if I am capable of actually writing such a prescription. The law has liberal "opt-out" provisions for any medical professional or institution who objects to physician aid in dying. Yet I am clear that it is every physician's duty to listen and provide respectful care to all patients, even when he or she does not agree on ethical, emotional or spiritual grounds with the patients' or families' values and goals.

The most important and difficult task physicians face is how to discuss a diminishing future and death with a patient and family effectively and compassionately. Let me use a recent example from my own experience.

Our Palliative Care Consult Team was asked to see a patient in his late 20s, Rob, who requested the visit. Rob had been diagnosed with sarcoma six years earlier and had done relatively well with multiple disease-modifying therapies, including surgery, radiation, chemotherapy and bone marrow transplant. In the six months prior to the consult, his status declined, requiring two surgeries to decompress his spinal cord. He knew he was nearing the end and was at significant risk for high cord compression with paralysis and difficulty breathing.

We introduced ourselves to Rob and his father, David. I asked Rob how we might best help him. Without hesitation Rob shared, "I voted for [the] Washington Death with Dignity Act, and now that it has passed, I want to know how taking a lethal prescription applies to me." Next I asked David the same question. He said, "While it is difficult to hasten my son's death, I will fully support whatever he wants."

What I say or do next will have an enormous impact on the outcome. How would you respond?

I've written elsewhere about a respectful death model that is research-based and emphasizes specific communication and relational skills to facilitate effective and compassionate end-of-life discussions. In brief, the model consists of the following steps:

Recognizing the right time: Know when it is appropriate to discuss palliative and end-of-life care options with patients and families. Many palliative care clinicians use the question, "Would I be surprised if this patient died in the next six to 12 months?" as a way of identifying patients who are candidates for end-of-life discussions.

Conducting an end-of-life discussion: Have a discussion that sets a safe context and explores the possibility of moving from curative to palliative/hospice care. In this kind of discussion, it is essential the physician listen to the patient/family and learn how they make sense of their singular situation. The patient/family does most of the talking. This is particularly true for requests of hastened death. Knowing what is motivating the request frequently leads to the unearthing of worries and fears, such as enduring uncontrollable pain or being a burden to family, that can be resolved without a lethal prescription. In fact, in Oregon, for every 10 patients who ask to discuss physician aid in dying, only one actually ends up requesting a lethal prescription.

Developing a respectful care plan: The next step is integrating the patient's story into the medical plan so the future is co-created by the patient, family and medical team in a collaborative way. First confirm those ideas and goals on which everyone -- patient, family and medical team -- agrees. Carefully define how the patient and family view key problems, such as suffering or maintaining dignity. Second, confirm areas of disagreement among the parties. You don't need to resolve all disagreements but acknowledging them makes it easier to reach consensus.

I assured Rob and Dave that before the meeting ended we would explore in depth how the Washington Death with Dignity Act applied to their situation. I then said, "But first, would it be OK if each of you shared your understanding of the situation you face, as well as your hopes and your fears? By understanding what's important to both of you, I can provide better support and information." Both Rob and David readily agreed to further exploration of their "stories." Using the process previously described and listening carefully for clues helped me more deeply understand what was important to son and father.

In the context of Rob's and David's stories, an individualized care plan was developed that integrated their values into medical decision-making so both of them could co-create their medical future in collaboration with the medical team.

We agreed on a pain-control regimen. We completed a Physician's Orders for Life-Sustaining Treatment form documenting the type of care Rob wants as he diminishes. We involved the hospital chaplaincy programs. We explored in detail the most likely pathways to dying that Rob will face. These included: the process of dying from cancer without specific complications; palliative treatments if he should have high cord compression; hospice philosophy of care and services hospice can provide, particularly emphasizing aggressive symptom support for Rob and support for his family; continued use of palliative chemotherapy; and physician aid in dying. We provided Rob with contact information for Compassion and Choices -- the leading organization in our state supporting physician aid in dying. We said it was uncertain if any practitioner at our medical center was willing to prescribe a lethal prescription but that all are committed to alleviating his suffering and providing as respectful a death as possible, guided by Rob's values.

The final challenge I want to address is the basic truth that we as physicians also have stories, an inherent part of who we are professionally and personally. Opening ourselves up to the grief, loss, suffering and tragedy that are part of dying requires courage and compassion. Doing it repeatedly takes a dedication that is at the core of our professional responsibility.

Literary critic and author Anatole Broyard wrote, "In learning to talk to his patients, the doctor may talk himself back into loving his work. He has little to lose and much to gain by letting the sick man into his heart. If he does, they can share, as few others can, the wonder, terror and exaltation on being on the edge of being, between the natural and the supernatural."

Whatever your opinion regarding physician aid in dying, the new law in Washington state will increase the opportunities for physicians to accept Broyard's challenge of humanely and compassionately communicating and responding to patients as they near the end of life.

Stuart Farber, MD, Associate Professor, Dept. of Family Medicine, and Adjunct Associate Professor, Medical History and Ethics, University of Washington School of Medicine

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.

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