Friday Reflection 9: It Is Hard to Die Well

RC was a 76-year-old man with small cell lung cancer. After 6 months of standard, and largely successful, palliative therapy, he chose to begin hospice care at home.

Every time I begin another block as the attending physician on our inpatient general medicine service, I know to expect the unexpected. This is one of the things I like best about the practice of medicine. My team will care for patients with dozens of diseases I have seen before, but I will see them manifested in new ways. I will also watch as young doctors reason through patient presentations and react to human illness in ways unfamiliar to me.

Something that I am certain to see, however, is at least one patient experiencing a “bad death.” A bad death is one associated with too many interventions, too much time in the hospital, unnecessary suffering and, frequently, family discord. Attending to dying patients has been part of the practice of medicine for millennia; we learn to care for patients at the end of life in medical school and throughout our careers; we witness this care being delivered by mentors, colleagues, and mentees. So, why do we often fail to do it well?

The person who taught me the most about how to craft a “good death” was my father.

My father was diagnosed with small cell lung cancer in 2006. He had smoked heavily for decades and had expected this diagnosis. After a concerning CT in 2005, he delayed follow-up – suspecting that an earlier diagnosis would bring not better outcomes but more time “living with cancer.” This suspicion came from him having trained as a physician in the 1950’s; his prognostic sense had not kept pace with medicine. I often joked that his reaction to news of someone receiving a diagnosis was, “well, that’s a death sentence.” It didn’t matter if the diagnosis was metastatic pancreatic cancer, pneumococcal pneumonia or carpal tunnel syndrome.

In his own case his prognostic sense was probably accurate.

My father was collected and philosophical when he got his diagnosis and prognosis. He felt he had escaped death a decade before when he was hospitalized with respiratory failure from COPD and previously undiagnosed heart failure. He made a remarkable recovery from this terrifying hospitalization. He saw the years that he lived from this point on as an unexpected gift - a gift that allowed him to hold two grandchildren.

My father received palliative treatment for six months, months during which he filled his days with conversations with friends, family, and colleagues. “Signing out” was what he called these talks. He and I spoke nearly every day during these months, certainly more than we talked when we lived together when I was a teenager. Only later did I recognize that during many of these conversations he was preparing me for his death.

When the decline in his quality of life steepened, we spent a weekend discussing what was to come. It was this weekend that I thought back on when I read an article in the BMJ in 2014, Dying of Cancer is the Best Death.

On the following Monday he called his oncologist to tell him that he was stopping treatment and beginning home hospice. The physician responded, “Oh no, don’t do that.” He told the doctor, “You have no say in this. This call is just an opportunity for me to thank you and update you on my decision.” When he called to tell me about this conversation, I told him the joke about how morticians put nails in coffins to keep oncologists out. We shared our last good laugh.

When I hung up the phone, I cried.

He died two weeks later, at home, in his bed, with my mother and me at his side. As painful as it was for her and me, I could not have imagined a better death for him. He left us in a way he chose, fully prepared, without pain.

Thirteen years later, when my mother became ill, we did not quite achieve “the good death.” We did probably achieve something better than what might have been. The end of her life was difficult with months of failing health, pain, cognitive decline, and debilitating anxiety. When she and I made the decision to begin hospice, it was an especially difficult one. Her quality of life was poor but her death did not seem particularly imminent.

We were supported by physicians to whom I will always be grateful; a doctor trained in medicine and pediatrics (who still cares for my mother’s granddaughter) and a palliative medicine specialist.

When my mother’s death came, I was devastated. I did find a measure of solace in knowing that she had controlled the decision-making and probably had succeeded in shortening her suffering. I still revisit our decisions. I wonder what would have happened if we had continued to be aggressive about her care. I wonder if our choices were the right ones.

Despite my training and personal experience, I know I will fail to provide a future patient the kind of death that my parents experienced. There will be a patient I know is dying, for whom further treatment is futile. I will provide patient and competent counseling and the family will respond:

“Do whatever you can to keep her alive.”

“He told me he wanted everything done.”

“I know she’s not ready to die.”

“If his kidneys are failing, why aren’t you starting dialysis?”

These statements make some sense at a time when medicine provides striking breakthroughs but continues to flounder in its handling of death. I understand why crafting a good death is so hard. The sadness of the imminent loss of a loved one is constant. The pain of loss is not lessened by a good death. The worry, as a decision maker, that you will be blamed, by yourself or your family, is hard to escape. Add to these feelings the truth that no death is right for all of us. Choices depend on the person, the disease, the family. A death at home with hospice was right for my father, less right for my mother, and unimaginable for many of my patients.

So how do we do better?

We must start with the obvious: acknowledging that death is inevitable and that there are outcomes worse than death. I have heard more than one doctor joke, “We Americans think death is optional.”

For there to be a chance that everybody involved, primarily the patient and the family, physicians must openly discuss prognosis and uncertainties. They must be courageous in offering explicit counsel. Physicians do have expertise; they have more experience with death than any one family and have witnessed needless suffering at the end of life. However, only a patient and his or her family knows what is right for them. What can the patient accept? What can a family tolerate and live with?

Barriers to dying well include how we view death, how we care for our loved ones, and how we practice medicine. For many families, gone are the days when a relative cared for a family member as his condition worsened over time. Our small and often dispersed families make it more likely that we do not recognize how close the end is. This was especially true during the COVID-19 pandemic when hospital visitation was restricted. “How can you be recommending hospice? I did not know she was so sick!” was not uncommon to hear.

Because doctors seldom follow their patients into the hospital, patients are rarely attended by a physician they know well. A physician that the patient knows and trusts and who listens to and gives counsel -- even unwelcome counsel -- can make the end more manageable. Yet many of the patients for whom I care in the hospital are meeting me for the first time. The patient, and the patient’s family, has little reason to trust my recommendations. Some people will accept my recommendations; others are suspicious that I am not working in their or their loved one’s best interest. 

Medicine needs to improve its ability to recognize when the end is imminent; physicians need to communicate that reality better; and patients, doctors and caregivers must then make the transition to assuring a death worthy of the life before it. Identifying a health care proxy and completing “The Physician Orders for Life Sustaining Treatment (POLST)” form are valuable tools to facilitate discussions with family and friends. There is a library of books, containing titles like When Breath Becomes Air and Being Mortal, which not only help guide people through these times but whose popularity signals widespread interest.

A “good death,” however defined by family and patient, is worth working for. It is important to the patient but also critical — and longer lasting — for the patient’s family. The experience deeply affects a family’s memory of the deceased and their ongoing relationship with healthcare. Death is the only medical condition everyone will experience. Helping people die can be a privilege, for both physicians and family, if we treat it that way.