Not Dying Yet

I used to think that palliative care was just for people who were dying. Then I found out—about a dozen years ago—that palliative care had expanded its original focus on end-stage cancer patients to include people with serious illness throughout the course of their disease (or diseases). Palliative care, I realized, is far more than hospice, a program that in the US is effectively restricted to patients expected to die within 6 months.

With this shift in perspective, I decided to move from an emphasis on the geriatric population, principally the frailest and sickest of the elderly, to a concentration on patients in the last stage of life, regardless of age, and regardless of how long that stage might be expected to last. For some disease states, including cancer, this effectively meant people in the last six or twelve months of life, since it was only at that point that we could determine the seriousness of their condition with reasonable reliability. For other disease states, such as frailty or dementia, the relevant population included people who might live for several years with a progressive, ultimately fatal condition. So I was surprised and dismayed when I read the fine print in an otherwise important and insightful article published this week about palliative care—and discovered that the authors’ wise recommendations were confined to people with a prognosis of one year or less.

The reason that it is so important to move the conversation about goals “upstream,” to start the discussion long before life’s last gasps, is that patients often shift their perspective on what’s most important depending on their underlying health status. People who have moderate dementia, who might expect to live several more years, may well not want life-prolonging treatments that will simply allow them to live long enough to develop advanced dementia, particularly when the treatments are burdensome. People who are becoming progressively frail may not want treatments that are apt to have as a side effect an even greater degree of debility and dependence.

It may not be ideal to limit discussion of the goals of care to patients with a prognosis of one year or less, but maybe it’s better than the current reality, which often involves no discussion at all, or limiting such talk to patients who are moribund. The problem with such an approach is both that it means subjecting the hundreds of thousands of patients with dementia or frailty or progressive heart or kidney disease to invasive tests, procedures, and medications that they may not want and that it risks turning people away by, once again, equating palliative care with dying. Palliative care is not just for imminently dying people. It is for anyone with a serious, progressive, incurable illness. And since we can’t cure diseases such as congestive heart failure or chronic obstructive pulmonary disease or Alzheimer’s disease, and those are precisely the conditions that tend to afflict people 80 and beyond (and some who are younger as well), we need to think about palliative care for this entire population. Palliation is not just for the dying.