Palliative Care: Who Is It For?

Dear Editor:

Debra was a 49-year-old woman with widely metastatic breast cancer and declining functional status complicated by a recent upper gastrointestinal bleed. Hospitalized in the intensive care unit, she had arrived at a crossroads, which in reality, was not a crossroads at all: she was drifting towards death, and nothing could stop that. Chemotherapy had failed, the oncology and intensive care teams deemed her terminally ill, and now she was meeting with me.

I introduced myself, told her what I do, and listened to her story. She had been diagnosed six and a half years ago, had undergone numerous surgeries and chemotherapy regimens, and was now unable to work or care for herself. She had fought a good fight, but was near the end. She was divorced and had three children that she worried about: a 23-year-old son, a 21-year-old daughter, and a 12-year-old son, the latter the only child remaining at home. He knew his mother had cancer, but that was all. Debra's maternal instincts protected him—he had no idea she was dying. I worried about his impending grief and bereavement. She had eight siblings, of which one, a sister, stood bedside. She was the one who would return home with her to provide care, the hardest job she would ever do. We discussed various discharge options, and settled on home hospice, though no one liked hearing the “h” word, but it was time, and there was nothing else that would help her like hospice. After wrapping up our discussion, I left the room, called hospice, and then spoke with her young nurse, explaining the discharge plan. As I was getting ready to leave, the sister came out of the room to speak with me.

“Can she get blood transfusions?” Her eyes begged for a positive answer.

She had bled from her intestinal tract and received several blood transfusions, but what was more concerning was the fact that the cancer had invaded her bone marrow, and her blood count teetered precariously. Nothing could fix that.

I told her the hospice would provide blood transfusions if it would improve quality of life, and if the transfusions were infrequent. Suddenly, the nurse spoke up and voiced that Debra was dying, and these types of things were to be expected, and that blood transfusions were not appropriate. The sister became defensive, and to be honest, so did I.

“We know she's dying, but we want her to live as long as she can. She's only 49, she has a 12-year-old son.” “She's a DNR, and we were told that meant no blood transfusions, is that true?”

I told her that DNR referred to cardiopulmonary resuscitation only, but that yes, her sister's disease could precipitate a cardiac arrest, and such an event could be due to bleeding or a very low blood count. But I told her we would speak with the hospice, explain her concerns, and I was sure that transfusions could be provided for comfort, but not prolongation of life. The nurse looked frustrated. She again voiced that Debra was dying, and bleeding should be expected, and that when people are dying they experience shortness of breath, pain, and bleeding—and that's just the way it is.

The sister became more defensive as her brow tightened. “Our parents died, both had cancer, I took care of them, I know what death is. I just don't want everyone giving up on her.” I assured her we were not giving up on her sister, but rather reframing her care, and that hospice would provide wonderful support and do what it took to provide quality and comfort, and if that meant blood transfusions, they would be done. The sister, still not convinced and looking worried, left the intensive care unit and said she would return later. It seemed the pull of hope and the want of life was just too much for her, but I was grateful she and Debra had at least accepted hospice.

I telephoned the medical resident to advise him of my consult and the conversation with Debra's sister, and that a hospice had agreed to accept her into their program and provide palliative transfusions. The resident listened, then thanked me. The attending physician, however, was incredulous, and believed that blood transfusions were contraindicated and futile in a situation of rapidly advancing cancer and approaching death, and that such a use of blood was a waste of valuable resources. I was roundly chastised, and his argument had merit. I silently sighed. In the eyes of the physician and nurse, my consult was clearly a failure.

As I left the intensive care unit and thought about the consult, I returned to a nagging concern regarding the challenging expectations of palliative care consults. As a relatively new specialty, the desire to be accepted as a valued and “legitimate” service encourages an instinctive and well-intentioned need to please and satisfy the consulting clinician as well as the patient and family. ¹ After all, everyone wants praise and acceptance, and it is no different with consultants. But I fear that many times palliative care clinicians enter a consult with unilateral goals, trying to please the consulting clinician first and the patient second. It may not be purposeful or intentional, but we have all done it at one time or another—pressured ourselves to come away with a DNR, or withdrawal of life support, or referral to a hospice. And admittedly, many times we believe it is the right thing to do—that the patient or family cannot see the proverbial tree for the forest, that they're in denial and just need a nudge, or that we know further treatment is futile and will only foster additional suffering. Call them paternalistic instincts. But in so doing, we potentially undermine patient autonomy and disparage patients' beliefs and values. And for those who doubt that physicians can or do sway patient care decisions, the frequency of orders to limit life-sustaining technologies in one intensive care unit varied by 15-fold among physicians, demonstrating the enormous importance of physician factors in such choices.^2,3 Moreover, physicians tend to rate patient quality of life considerably lower than patients themselves,^2,4 use different criteria for a “good death,”^2,5 and may be perceived at times as badgering patients and families to forego life-sustaining treatments.^2,6,7 Consequently, it behooves us to maintain clinical neutrality without a preconceived agenda, and remember for whom we are consulted: the patient and family. If not, and we allow this consulting paradigm to shift towards satisfying the consulting clinician rather than honoring the patient's goals of care, ¹ we become salesmen rather than clinicians, and failure looms on the horizon. Hallenbeck said it best when he admonished that we must not become infatuated with the goal of performing a “successful” consult, but rather a consult that is helpful and honors the goals of the patient and family.^1,8 And it's really that simple: honoring the goals of the patient and family.

However, when the outcomes of consults are deemed disappointments or even failures by consulting clinicians, or seen as an affront to their clinical decision making and medical management, there may be significant consequences, including a reduction in consults, a politicized program with a decrease in institutional support, and a regrettable and inappropriately tarnished reputation of the palliative care team. ¹ That said, such displeasure can often be attenuated or even avoided by insightful and balanced communication, reserved emotions, respectful and professional relationships, and maintenance of neutrality when entering clinician-patient confrontations. What's more, there should be an understanding that an outcome contrary to the consulting clinician's desire should not be deemed a failure, but rather the beginning of a process. ¹ Clearly, making these decisions can be emotionally challenging, particularly when confronting life and death decisions, and since many of these decisions are life and death decisions, patients and families need time, oftentimes much more time than we're willing to give or allow. ¹ But with time, trust and rapport can be developed and nurtured, and the clinician-patient relationship cemented by mutual respect. And in such an environment, informed and autonomous decisions can be made, free of coercion and paternalism.

So where does that leave palliative care? Quite simply, with a wonderful opportunity for growth and recognition as a model of cost-effective, patient-centered care. That said, there will be struggles and conflict just as there is with anything in life; but with compromise and respect, and a willingness to embrace a diversity of perspectives, palliative care can attain a valued position within the hierarchy of medicine. And for everyone involved, that's good.