June 27, 2016

Life and Death in the End Zone

When President Obama announced a new, renewed war on cancer in January 16, saying “let’s make America the country that cures cancer,” many of us in the medical profession rolled our eyes. We’ve been at war with cancer at least since President Nixon issued the first declaration of war in 1971 and while we’ve won a few skirmishes, there’s a long way to go. The most impressive accomplishment over the last 50 years is a fall in the death rate from lung cancer—which is principally the result of fewer people getting lung cancer in the first place. And that’s related to a dramatic drop in cigarette use, not to better treatment.

To be fair, there are some areas of cancer care where progress has been stunning. Many forms of adult lymphoma can be cured. Ditto for some kinds of childhood leukemia. The treatment for a handful of diseases has gone from abysmally poor to stunningly successful with the introduction of totally new approaches to treatment—chronic myelogenous leukemia and selected cases of lung cancer are the poster children for the new world of targeted chemotherapy. But the other major advance in cancer care, which is less often touted than it should be, is in the treatment of dying patients.

We’d all love to be able to prevent cancer and we’d be thrilled to cure anyone who nonetheless developed the disease. But for now, and probably for the foreseeable future, cancer is very much with us. The latest statistics show that cancer accounts for 23 percent of all deaths, almost as large a proportion as for heart disease, which is responsible for 26 percent of deaths. And the good news—there is some good news here—is that far more patients who die of cancer receive the benefits of palliative care in their last days, weeks, or months of life. But what about the 77 percent of people who die but of something other than cancer? A new study reminds us that we don’t do nearly as well in caring for these people near the end of life.

Among patients who died in a VA hospital between 2009 and 2012, and there were over 57,000 such people, 74 percent of those dying of cancer received a palliative care consult at some point during what would prove to be the last 90 days of their lives. Among people who died of heart disease, lung disease, endstage kidney disease, or frailty, the rate was between 44 percent (for the frail) and 50 percent (for those with advanced renal disease). People who died of dementia and its complications fell somewhere in between, with 61 percent getting an inpatient palliative care consultation.

When the study authors looked at a couple of other indicators of dying well, they found the same pattern. People with cancer died in inpatient hospice units and had a DNR order at the time of death far more often than those with diseases of the heart, lung, or kidney, and people with dementia fell in between. For example, 43 percent of the cancer patients took their last breaths in a hospice unit but only 23 percent of those with cardiopulmonary failure. Likewise, roughly one-third of patients with kidney disease, cardiopulmonary failure or frailty died in the ICU, compared to only 13 percent of people with cancer. In this instance, patients with dementia fared best, with only 9 percent of them dying in the ICU.

The family members of patients who died were asked their opinion about the quality of end of life care their relatives received in the hospital. Using the Bereaved Family Survey, which 64 percent of families completed, the study found that 59 percent of families whose relative had cancer or dementia reported excellent over all care. Among the remaining families, 54 percent reported excellent care—which was statistically significant although not dramatically different.

People who die in one of the nation’s 146 inpatient VA hospitals may be different from the population as a whole. Most obviously, they are overwhelmingly male (98 percent). The VA has a long and venerable tradition of providing high quality, cutting edge geriatric care and has also taken the lead in the palliative realm. And studying only patients who die in the hospital—when about 70 percent of patients die somewhere else (for people over age 85, 40 percent died in a nursing home, 29 percent in the hospital, and 19 percent at home)--may not provide an accurate view of what happens to people near the end of life. But the study strongly suggests that while we still have a ways to go in optimizing cancer care, including at the very end, we especially need to redouble our efforts in caring for patients with non-cancer diagnoses. I would include dementia here: the study lumps the care of dementia patients together with the care of cancer patients as “good,” but the data suggest dementia is better seen as intermediate between the other two groups.

The trajectory towards death looks different for patients with congestive heart failure, endstage renal disease, chronic obstructive pulmonary disease or that nebulous disorder, frailty, than it does for patients with cancer. But that’s more reason, not less, for palliative care consultation. The JAMA Internal Medicine study does not address the barriers to receiving palliative care faced by this under-served population. I suspect there are barriers both on the physician side and on the patient side. The medical profession—and particularly cardiologists, pulmonologists, nephrologists, and neurologists—needs to endorse palliative care for everyone with advanced, life-limiting disease. But patients and families can help, too. Just speak up.

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