Why palliative care shouldn't exist

As physicians are pushed away from their patients and to their computers, a new branch of medicine has been created to do actual doctoring

My first interaction with palliative care was in medical school. I sat in the back of the conference room as the representatives from the different teams - internal medicine, neurosurgery, oncology, and palliative care - met with our patient's husband to discuss what would end up being the last few days of his wife’s life. Her husband was calm, quiet, and patient. I saw him cry only once, at the end, when we discussed arranging for formal counseling for their daughters, ages 4 and 7. I was embarrassed that I couldn’t hold back my own tears. The oncologist, teary-eyed herself, handed tissues to the husband. She held his hand, and it was clear to everyone in the room how much she cared, and how much she had done to care for this family. But then she was asked for a definitive prognosis, and her unease became apparent.

"How long does she really have left? Should we be thinking of another round of chemotherapy? Radiation?" Our patient spent most of her day in and out of consciousness, able only to smile softly at the faces of her children, and to hold her husband's hand as he sat at her bedside. Every medical provider in that room knew without question that her journey was coming to an end, and that to prolong intervention would be to prolong suffering. 

Yet the oncologist hesitated. As physicians, we are often asked to predict the future, and we fear the blame that we sometimes receive when the future does not follow our educated predictions. Over the past few decades, we have seen a decrease in society's understanding of the ultimate limitations of medical knowledge, compounded by increasing medico-legal repercussions when reality does not match our best predictions. We expect more of technology, and forgive less when medical uncertainties and realities lead to undesired outcomes. The response of physicians and providers has been logical: to hedge our bets, to couch our guidance in uncertainty, and to place an increasing burden of decision-making on the patient and their family. It is both legally and emotionally protective to shift responsibility away from one's own medical decision-making and into the hands of the patient.

The oncologist’s response fell flat. "Nothing is 100% percent certain in medicine... we can never predict anything exactly." The neurosurgeon nodded, and the internal medicine resident sat silently. The palliative care physician, however, stepped in immediately to redirect the conversation. "Days to weeks," she said. That was the timeframe that had been agreed upon by all medical providers in the preparatory meeting, and it was the truth. Anything beyond would have been a medical anomaly, and it was apparent to everyone involved that further measures aimed at prolonging survival would have compromised her quality of life and robbed her of the ability to be present for precious final moments with her children and husband. Everyone nodded in agreement and relief. Now we could move forward with caring and healing.

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Since this encounter– through medical school, pediatrics residency, and into my daily work as a hospital pediatrician– palliative care providers have continued to dramatically shape my practice. I have worked with patients who benefit enormously from their expert medical management of complex chronic illness, pain and symptom control, and their perspective on optimizing every patient’s quality of life, and not just prolonging life expectancy. However, as I have progressed in my training, I have become increasingly uncomfortable with the concept of palliative care as a consult service. It seems hard to justify relegating tasks like difficult conversations about a patient’s goals for medical treatment, and how to manage complex and chronic symptoms, to a consulting team instead of the patient’s primary doctors. While some patients establish rewarding long-term relationships with palliative care teams, many see them – and have these issues addressed thoroughly - only at the very end of life.

There is an ominous phrase in medicine termed “goals of care,” and it is a phrase that physicians, with increasingly impossible workloads, have learned to dread. It is a phrase that has become synonymous with resuscitation status - sitting with a family and discussing whether or not to make a patient DNR (do not resuscitate), or whether to continue to provide aggressive life-prolonging interventions if and when that patient's heart and lungs cease to function. These conversations are crucial, and there has been increasing national dialogue about better optimizing the dying process. But too frequently these conversations are outsourced to others, palliative care teams most commonly. In large part, time constraints make such conversations almost impossible. Primary care and specialty physicians alike are expected to click on dozens of boxes per patient visit acknowledging so-called "best practice alerts" for the purpose of insurance company auditing and reimbursement. The burden of documentation has increased exponentially, with a decidedly user-unfriendly interface for patient note-writing that can take the majority of a visit. When doctors are expected to spend more time at the computer than meeting face to face with their patients, it is no wonder that the palliative care physicians have emerged to take over the actual practice of doctoring. They do the work we should be doing – and which, I would argue, we are morally obligated to do - instead of writing notes and clicking boxes. Most patients understand what is important to them, but they do not have the years of medical training and knowledge to know how to translate values into medicine. That is the job of the physician, to incorporate years of medical training and scientific research into a personalized plan of care for every individual.

There are few teams I respect, admire, and model my patient care after more than the palliative care team. My gratitude for them cannot be overstated, and they serve as a routine source of personal strength and inspiration. But I do not want palliative care at my bedside when my health is compromised. I want my primary care physician who has been treating me for decades to see me, and to explain to my specialists what she has asked me over the years: what is important to me, and how, based on that, I would want to be treated. But we have a long way to go with creating a medical system that allows doctors to do this kind of actual doctoring.

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