Why is getting appropriate end-of-life care so hard?

Unnecessary medical care at the end of life is a widespread and persistent problem. More than one-third of people receive treatments that aren’t beneficial in the last six months of their life. About 60% of Americans die in hospitals, where they receive more tests and procedures, even though the vast majority of Americans say they would rather die at home

Why is it so difficult to get the end-of-life care that patients say they want? Part of the problem is that many patients don’t express these wishes or write them in advanced directives. But even when patients do express these wishes, a lack of communication between doctors and patient families, along with the expectation that we have to do “everything we can” at the end of life, can make it difficult to avoid unnecessary care. 

Policy barriers to end of life care

Recent articles in health news show some of the other barriers to right care at the end of life. An article in JAMA Internal Medicine last week shows how policy is a barrier to hospice access for patients with renal failure. Dr. Melissa Wachterman, Professor of Internal Medicine at Boston University, and colleagues looked at about 770,000 Medicare patients who were on dialysis between 2000 and 2014 and passed away during this time. 

The good news: Hospice use increased from 11% of patients in 2000 to 27% in 2012. The bad news: This rate is still far lower than the number of patients with other advanced illnesses. The other bad news: A significant proportion of those receiving hospice service (about 40%), received hospice for only three days or less, and were receiving intensive treatments right up to their transition to hospice.

In an accompanying commentary, Dr. Margaret Schwartze and colleagues discuss reasons why patients with end-stage renal failure are an outlier in palliative care utilization. One reason may be because hospice rules often require that patients discontinue dialysis and other “disease-modifying therapies” before they are admitted. The authors point out that it’s easier for a patient with a terminal illness to decide to “do nothing else,” than it is for a patient with end-stage renal disease to decide to take away the treatment that’s keeping them alive. This policy essentially forces dialysis patients to “pull the plug” on themselves, which is a decision that no patient or family member wants to make.

“A change in hospice benefits that… allows patients to continue to receive hemodialysis and hospice care could be both cost saving and improve their care at the end of life,” write Schwartze et al. 

The downside to new cancer treatments

As pharmaceutical companies and the government pour more money into cancer research, we are beginning to see more promising therapies to treat cancers, such as immunotherapy. While these new therapies are exciting and potentially life-saving, there is a downside to these newly available treatments (and the hype surrounding them). 

In The New York Times, hospitalist Dr. Robert Wachter writes that new “miracle” cancer therapies has made it more difficult for his patients to transition from aggressive treatment to palliative care. In his experience, patients turn to palliative care when they recognize that their cancer is incurable, but this determination is getting harder and harder to make as new treatments emerge. 

“By blurring the line between cure and comfort — and between hope and hopelessness — these treatments have disrupted the fragile equilibrium that we doctors have long taken for granted,” Wachter writes. This choice is made more difficult by the fact that relatively few patients (about 15%) are helped by immunotherapy, and the side effects can be awful.  

Wachter is not against providing these treatments; instead he challenges our “dichotomous system — one that forces patients to choose between the goal of comfort or cure.” He suggests that we provide palliative care along with new active treatment (which may require a retooling of insurance rules around palliative care), and that doctors work on conveying the costs and benefits of new treatments to patients.