Patient Comfort is as Important as Survival

September 3, 2024

John Frederick Kensett, Mount Washington (1869)

This week, I lost someone close to me. (I’ll refer to this person as “the patient” and use third-person pronouns to help conceal their identity.) This post uses my grief—and anger—to distill a lesson about decision-making at the end of life.

The patient suffered from a vicious but never successfully diagnosed autoimmune disorder, meaning that their immune system was attacking the self. The disease destroyed all their joints and much of their spine, including their neck. By the end of their life, the weakness in their cervical spine meant they had difficulty preventing their head from falling forward on their chest, causing them intense pain.

In the last few weeks of their life, the patient was hospitalized, presumably because their care needs could not be addressed at home. A surgeon met with the patient during the hospitalization and proposed a radical intervention.

The idea was that the surgeon would perform a series of vertebral fusions to straighten the patient’s cervical spine. The proposal’s virtue was that straightening the spine would have solved one of the causes of the patient’s suffering if it worked. (The intervention would not have addressed the many other problems caused by the patient’s autoimmune disorder.)

The principal problem was that the intervention would have required the surgeon to cut through the patient’s throat to install hardware to fuse the vertebrae. The procedure would have been demanding for the patient and involved substantial risk.

In hindsight, given that the patient died just a few days after discussing it suggests that they might not have survived the procedure. However, hindsight was not required to see the risk of this procedure; the patient’s frailty made that plain.

The patient declined the surgery. The hospital discharged the patient home, and the family made plans for them to receive home hospice care. The first two nights at home, the patient called out for help to people who were not present. They demanded to be transferred from their bed to their wheelchair and then from the chair back to their bed.

These behaviours were out of character; the patient was delirious, a widespread problem among patients who are frail and under severe medical stress. On the third night, the patient died while being held by their children.

Why have I written at such length about a surgery that no one ever performed? I have no criticism of the surgeon. Thinking up novel interventions to address challenging problems is his job. Moreover, to my knowledge, the surgeon discussed the procedure’s risks candidly and accurately. Knowing how frail the patient was, I thought the proposed surgery was absurd. But someone else might have a different view.

However, note the disparity between the surgeon’s effort to develop a longshot intervention to fix one consequence of a chronic illness at the end of life and the apparent absence of anyone responsible for ensuring that the patient was comfortable when they got home. Once a patient has declined a curative intervention, ensuring they are comfortable should become a comparably severe priority.

More than 2 million Americans will spend time in a nursing home or a similar institutional setting this year. One study found that the incidence of delirium among nursing home residents was 40%. If that is anything like the correct number, this is a huge problem.

Asher Brown Durand, The Catskills (1859)

But that’s not how the medical system views the relative importance of the two tasks: ‘real doctors’ get at the causes of problems and fix them. Making the patient comfortable is someone else’s problem, maybe a nurse’s. Perhaps the problem is in the term “patient comfort,” which may suggest that patient suffering is a cosmetic concern, incidental to the underlying pathophysiology, that is, the stuff that matters.

I have now experienced the suffering and terror of delirium—waking up in a health care facility confused about where you are and how you got there, unable to correlate what you can see with the nightmares you have been immersed in—and for me, that suffering was worse than any purely pain-based suffering I have experienced. I have spent more than one night in a unit where a patient screamed through the night, unable to escape fear and delusion.

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Delirium can be challenging to treat. It is a symptom of many disease processes, and a drug interaction can cause it. But many serious medical problems are difficult to diagnose and treat, and we do not usually treat them as things that must be endured, like death and taxes. Extensive research programs should be devoted to developing protocols to prevent delirium and interventions to relieve it.

Medical resources are scarce, but please note that getting the patient the best palliative care in the world would have been much cheaper than the surgery. We are willing to take huge risks on interventions with a slight chance of achieving a cure. Yet, we fail to make comparable efforts to make patients comfortable at the end of life.

But can’t you hear them screaming?