What health conditions do people rank as worse than death?

As part of running an educational workshop, I have the opportunity to ask doctors what disease they would least like to die from. Naturally there is a variety of responses: common answers include motor neurone disease, multiple sclerosis and various organ- specific cancers. Heart disease is almost never mentioned; nor do infectious diseases feature.

Presumably the replies are influenced by personal and especially professional experience. Compared with the layman, doctors and nurses see and experience death on a much more frequent basis.

Not having come across much on patients' views on the topic in medical literature, my interest was piqued by a recent paper in the journal Jama Internal Medicine in which patients were asked to rank a number of scenarios as being better than, or worse than death.

Researchers at the University of Pennsylvania surveyed 180 people aged 60 and older who had been admitted to hospital for conditions including advanced heart failure and cancer.

Some 70 per cent of respondents named bowel and bladder incontinence, reliance on a breathing machine, and inability to get out of bed as being as bad as or worse than death.

Important caveat

Sixty per cent felt being confused all the time would be as bad as death; reliance on a feeding tube and needing around-the-clock care were also rated by over half of those surveyed as being intolerable.

On the other hand, most of those questioned said that needing to be in a wheelchair, constant moderate pain, living in a nursing home or being unable to leave the house would be preferable to death.

In an important caveat, the study authors note that patients may have misjudged how they would actually feel if they really were in any of the suggested situations.

“Patients may underestimate their abilities to adapt to certain health states, such that once-feared states become more tolerable once they are experienced,” they say. Studies of terminally ill people would certainly back up this thesis.

But it's important to ask these questions. Another recent study, this time in Jama Oncology, shows why. The analysis of 236 patients and 38 oncologists finds that 68 per cent of patients with incurable cancer held opinions about their survival prognosis that differed from those of their oncologist. Worryingly, only one in 10 patients knew they did not have the same understanding.

According to doctors from the Division of Palliative Medicine at the University of Vermont, the findings have serious implications for shared decision-making as death approaches. "Known discordance" can lead to shared decision-making, but "unknown discordance" (where the patient remains unaware of the doctor's different opinion) is suggestive of failed communication, lead author Dr Robert Gramling said.

“This high rate of unknowingly discordant expectations highlights the need for our modern medical system to understand how best to support meaningful prognosis communication between patients and doctors in serious illness,” he observed.

The study emphasises the importance of not relying on a once-off discussion about disease prognosis but to see it as a dynamic and often flawed exchange that needs constant revisiting by patients and doctors.

I have long felt that the most honest answer to the question “How long have I got, doc” is “I don’t know”. I think you can be reasonably certain when someone enters their last days, but even then I have had patients who unexpectedly stayed alive for a few days longer than I would have predicted. But when someone asks early in a cancer diagnosis about the number of years left, no doctor can possibly predict that far ahead with any accuracy.

The most recent research suggests palliative care physicians generally overestimate how long a particular patient has left to live. The doctors were right only half the time in cases involving patients who had less than a month to live. Between “unknown knowns” and a possible “fate worse than death” it is surely an uncertain area of medicine.

@muirishouston mhouston@irishtimes.com