End of Life: Will you get the care you want?

Science Daily recently published a story about a report published in National Academy of Sciences: “U.S. health system not properly designed to meet needs of patients nearing end of life, say experts.”

Those of us who work with people facing the end of life have been aware of this issue for a long time. But while not ‘news’ to many of us, I’m happy to see experts take a critical look at how our health system is lacking when it comes to end of life care.

As the article states, our medical system is designed to treat and cure, even when it’s clear that a patient is suffering and the prognosis is poor. Medical personnel are trained and incentivized through the payment system to treat patients aggressively in an effort to cure them. Liability for failure to treat contributes to this mindset. At the same time, we have very poor ways of dealing with mortality in our material world, both as patients and family members caring for others.

Given this backdrop, it’s clear why our system isn’t doing its job. In order to improve both the system and end of life care, there are a few shifts that need to happen. The first and second are addressed in the article. Doctors should be trained to work more collaboratively with patients—and paid to do so. The reason: Most people think very highly of doctors and therefore, tend to agree to surgery or other treatments with the belief that there must be some chance of success, that it must be the right thing to do. Problem is, this is not always the case, as noted earlier. With that, it’s not easy to face end of life, and because of that, we don’t always lay out medical directives, create wills or execute powers of attorney. Similarly, family members often don’t want to face a loved one’s end of life and are often unwilling to let a parent, child, brother or sister die, even when it’s clear that prolonging life is only prolonging suffering. We as patients, or family members of patients, need to decide on the kind of end of life care we want and just an important, what we don’t want, when we’re healthy and capable of making such decisions.

The latter point – lack of action due to fear of loss, fear of death – is not addressed in this report, nor is it something that’s easy to talk about. But it’s something we need to consider as we think about end of life care. I believe that we need to plan for death, despite our fears. Otherwise, we’re left at the mercy of family and doctors – who may mean well but may not provide the care we really want.

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