The CBS newsmagazine 60 Minutes just featured an in-depth profile of Eric Walsh, the Oregon physician best known for helping 29-year-old Brittany Maynard end her life in 2014, when she opted not to undergo further treatment for a brain tumor. As the program pointed out, the lethal cocktail of barbiturates Walsh prescribed to Maynard is only legal in five states, including California, which recently passed its End of Life Option Act.
But the lack of laws allowing physicians to help terminally ill patients end their own lives is only part of the story of why what some refer to as “death with dignity” is so difficult to achieve in the United States. The sad fact is that patients facing end-stage cancer and other diseases are often not given the tools they need to make their own decisions about how they want to spend their final days.
"When somebody is facing the end of their life, shouldn't they be in control?" said Walsh in an interview with CBS News chief medical correspondent Jon LaPook. Most would answer “yes” regardless of whether or not they have access to assistance from a doctor like Walsh.
Even when they don’t, however, patients still have plenty of power to dictate how they want to spend their final days to their physicians, family members and other caregivers. So-called “advance directives,” including living wills, allow anyone to choose whether they want life-saving measures to be taken, or whether they would prefer palliative care to keep them comfortable until their illness runs its course.
Problem is, very few patients actually have advance directives. A recent study in Maryland, for example, found that 60% of adults want their end-of-life wishes to be honored, but only 30% had completed advance directives. Fact is, physicians often short-change end-of-life discussions with their patients, whether it’s because they’re just not comfortable broaching the topic, or they simply don’t have enough time.
Here are some of the major impediments to improving end-of-life care in this country:
Everyone is so overwhelmed with decisions during medical crises they often make the wrong ones. A 2015 study published in the journal Critical Care Medicine revealed that doctors working in the intensive care unit of an academic medical center made a staggering 102 decisions per day, which averaged out to nine decisions per patient. Rightly so, these researchers and others have questioned whether such “decision fatigue” can lead to hastily made choices that patients regret later.
And studies have shown that even when patients are encouraged to complete advance directives, they may not express their true wishes. A 2013 study published in Health Affairs involved 132 seriously ill patients who were randomly assigned to complete one of three advance directives. Most patients preferred comfort-oriented care rather than radical life-extending measures. But when patients were handed an advance directive with “life extension” presented as the default choice (which it is when patients don’t express their desires), only 43% rejected that choice in favor of comfort-oriented care—showing just how likely people are to accept the status quo rather than speak up for what they want.
Doctors often opt to sustain life even when patients don’t want that. Even in the ideal scenario of everyone having an advance directive, there’s no guarantee patients’ wishes will be honored. For example, one study published in JAMA Internal Medicine in 2015 found that almost one-quarter of patients admitted to intensive care units with do-not-resuscitate orders received CPR.
Med schools spend precious little time teaching doctors how to help their patients make end-of-life decisions. Palliative care became a defined medical specialty about 20 years ago and there are now hundreds of physicians who specialize in providing appropriate care at the end of life. But not every physician who treats cancer and other grave illnesses has such advance training. The average total hours of instruction in death and dying provided by American med schools is just 17 hours over the entire four years of instruction, according to a paper in the American Journal of Hospice and Palliative Care.
“Much more could be done to train doctors in how to communicate end-of-life issues,” said Ezekiel Emanuel, an oncologist and professor of medical ethics and health policy at the University of Pennsylvania, in a 2015 interview with Knowledge@Wharton. “This is not something you’re born with, but it is something you can be trained to do.”
