Choosing palliative care … or not

No right answer?

On Easter, a holiday associated with faith, rebirth and the celebration of life, many thousands of Americans sat down and read a disturbing tale of death on the front page of the Sunday New York Times. It was an article about Dr. Desiree Pardi, a palliative care practitioner who died of cancer at the age of 41—but only after several years of refusing the same kind of comfort care that she regularly offered to her own patients throughout her short career.

Her staunch opposition to palliative care, seemingly because accepting it would be tantamount to admitting defeat, made her out to be the definition of a hypocrite. More than 400 readers, average citizens and medical professionals alike, left comments online, expressing everything from sympathy to frustration. It’s likely that many of us had similar responses.

Pardi’s story was unusual. She knew how hypocritical her rejection of palliative care would appear, so she avoided getting treatment at the hospital where colleagues worked. She also was able to pay out of pocket for her portion of “hundreds of thousands of dollars” worth of treatments not fully covered by insurance. And at the time of her death, after repeatedly insisting on the most aggressive treatments available, she apparently was unaware of how ravaged her body was by the cancer. Her standing orders to all doctors were that they tell only her husband how she was doing, and then he would relay the information.

To provide context, and some clarity about the meaning and challenges of palliative care, the Bioethics Bulletin interviewed Berman Institute faculty member Cynda Hylton Rushton, Ph.D., R.N. A nationally recognized expert in bioethics and palliative care, Rushton has been working for more than a decade with an interdisciplinary group of colleagues to provide training for clinicians focused on care of the dying. Together, they undertake in-depth explorations of the very issues raised by the article.

“To me, this story highlights so many of the deeply embedded issues that surround care at the end of life,” said Rushton, an associate professor at the Johns Hopkins School of Nursing. Also an associate professor of pediatrics, Rushton is the program director of the Harriet Lane Compassionate Care Program.

Bioethics Bulletin: Was this article an indictment of palliative care?

Cynda Rushton: “It is unfortunate that this story was framed as a rejection of palliative care. The ethical practice of palliative care includes the principle of respect for persons, and its derivative: autonomy. It may be that Dr. Pardi’s resistance was a rejection of suggestions about limiting care that reflected her own personal values.

“She may have decided that continuing to pursue treatments, despite the significant burdens associated with them, was worth it because of her own personal life goals and values, or her readiness to consider alternatives.”

BB: How should we make sense of a doctor who recommended palliative care to patients, but who wouldn’t accept it herself when she was in their place?

CR: “Her story raises important issues about how we deal with accepting and supporting the decisions of others when those decisions are different from what we think we might choose for ourselves. And it highlights that, as a culture, we are not fully prepared to engage in the inevitable process of dying.”

BB: Is palliative care the same as end-of-life care?

CR: “This is the heart of the matter. Palliative care is a continuum that includes end-of-life care, but is not synonymous with it. The focus of palliative care is not exclusively about dying—it is about living as well as we can, for as long as possible, by focusing on quality of life. Quality of life is subjective and informed by personal values and goals, which is what makes it difficult for us to understand the choices of others.

“You might say that this physician was more informed than most about the issues, and she chose a particular path for herself that reflected what she wanted at that time in her life—including having her husband be the conduit of information.”

BB: So, in Dr. Pardi’s case, her rejection of palliative care was not a failure to “practice what she preached.” Rather, she may have based her decision on internal reasoning that is impossible for anyone else to know, and so we should accept her choice. Is that correct?

CR: “Most of us cannot imagine how we would respond in such circumstances, and it isn’t uncommon for people to change their mind when they are actually confronted with the reality.

“Framing her response as denial may or may not be accurate. It may have been an authentic choice, but one that some people have difficulty in understanding or accepting.”

BB: What, then, is the most important lesson of this story?

CR: “Dying is a deeply personal matter. As health care professionals, we have the opportunity to help patients and families to find comfort, meaning and integrity as they journey toward death. To do so, clinicians—and all of us—have to be willing to let go of pre-conceived notions about what the process should look like and join with patients and family members to discover how to honor their goals and values, provide compassionate care, and not to abandon them when we disagree with their choices.”

BB: Are there other important lessons to be learned from the article?

CR: “One lesson is that health-care clinicians are human beings with the same fears and frailties as everyone else. And it points out the need to help them work through their own fears and worries as they counsel their patients.

“Programs such as the professional training program, Being With Dying, offers an opportunity for clinicians caring for people experiencing life-threatening conditions to explore their fundamental personal and professional values, aspirations, fears and challenges in a supportive environment, using experiential and contemplative practices. The premise is that cultivating stability of mind and emotions enables clinicians to respond to others and themselves with greater empathy and compassion.

“Our research team is also developing innovative curricula that include the voices of patients and families—via documentary films—to stimulate greater awareness of their perspectives, and to more fully integrate palliative care principles into the care of children and adolescents with chronic health problems such as sickle cell disease and neuromuscular conditions.”

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Cynda Rushton
Michael Pena

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