My stepfather was dying. Why wouldn’t his doctors just say so?

by Clara Yim Bolduc

This essay was originally published in The Boston Globe

I stood for a moment in the sterile kitchenette after dispensing my coffee from a push-button machine. I took a breath of dry hospital air and reminded myself to savor this moment. It was early still, and quiet. In a room down the hall, my stepfather was dying.

In a country with few, if any, shared end-of-life rituals, perhaps this is one: sipping hospital coffee, pacing a fluorescent-lit waiting room, sitting vigil at a bedside, praying for a miracle long after the time for miracles has passed.

Even as fewer Americans are dying in hospitals, we still spend a remarkable amount of time (and money) visiting them in their final months of life. And we cling — often religiously — to hope, that most American of feelings, right up until the end.

But what, exactly, are we hoping for? That the pain of loss might be delayed by a few more hours? Or that modern medicine might finally defeat death, its chosen enemy?

My own hope has been tempered by my work in hospice. By the time I drove my stepfather to the hospital, I knew that he was dying, even though his doctors continued to tell us that everything was OK. They said the weeks of increasing pain and episodes of hypoxemia — low levels of oxygen in the blood — were not cause for alarm. The chemo was working, they assured us. The cancer was retreating. We don’t think this is the end, the emergency room doctors said. It’s just a little setback.

Doctors don’t like to talk about death. I know this because I’m not infrequently the first medical professional to discuss the topic directly with my patients and their families. This shouldn’t be the case. A patient is referred to hospice only if their doctor believes the patient has six months or less (often much, much less) to live. But sometimes doctors forget to tell this to the patient, or they speak about it in such vague and gentle terms that their meaning is obscured. No one wants to say, “Your life is coming to an end. You’re going to die, most likely soon.”

Doctors — particularly oncologists — are under immense pressure to give families hope. Despite the evidence, our culture is deeply invested in the idea that our mental and emotional attitude can drastically alter our health outcomes. A doctor who fails to offer hope may be seen as withholding a critical element of treatment.

This myth is perpetuated by stories of survival. “She never gave up fighting!” we say with admiration, or “We always believed he would get better.”

But all this hope comes at a cost. Patients suffer needlessly in their final days when doctors fail to prepare them for the inevitable process of dying. And for loved ones left behind, their loss, unexpected in the face of boundless hope, is particularly painful, their grief compounded by broken faith and disbelief.

Back in his hospital room, my stepfather was only intermittently responsive, an IV tube feeding him a steady stream of medication to quell the unbearable pain of metastasized cancer. I still had hope (I am American, after all), but not for anything like recovery. I hoped that he would survive the transfer to a nearby hospice house (he would); that the worst of his terminal agitation had passed (it hadn’t); and that he would live long enough for my siblings to arrive from out of state to say their goodbyes (he would not).

I wish the oncologist had explained to my mother and stepfather how quickly things can change from a coherent conversation on the couch about stomach pain to the rhythmic shuddering of final breaths. Eight rounds of chemo had left my stepfather’s body depleted and fragile. Death would be swift. Merciful as this was, the process would have been kinder and more peaceful if the doctors had prepared my family for it. The oncologist came to the hospital room to tell us the cancer was no longer treatable. A day later, my stepfather died.

Too often in medicine, we talk about death as something to battle or forestall, rather than as a physiological process we will all eventually experience. Death is not an aberration. It’s not a failure of medical treatment, nor a triumph of disease. It comes for all of us, often with plenty of forewarning. When doctors learn to recognize and discuss death’s inexorable approach, patients and their families benefit.