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Maybe We Need to Redefine "Palliative Care"

By Heather Millar

man speaking with doctor

When my father was dying of lung cancer, my mother didn’t want to talk about death. She didn’t want to talk about hospice. She forbid anyone in the family to even tell my father he was dying. He knew anyway.

Obviously, that situation was dysfunctional in the extreme, but in the years since my father died, as I began to report more and more on health and science, here’s what has really bothered me when I remember my father’s last days: Because we couldn’t talk about any of those other “end of life” issues, we never really discussed “palliative care.”

Most of you probably know that “palliative care” means medical treatments that seek to relieve pain, discomfort and anxiety in the seriously ill. For instance, my Dad had metastases to his stomach and intestines and he didn’t eat or drink for the last week of his life. He became seriously dehydrated. His lips and mouth were painfully dry. He was at home and my brother and I didn’t know what to do.

Finally, I convinced my mother to get hospice care. They arrived the day before my Dad died. They showed us the palliative care technique of drenching a washcloth and then letting the patient suck on it to relieve mouth dryness. Of course, my father was dying. But why should that have been any more difficult than it already was? Seventeen years later, it still bothers me that my father suffered for days from an unnecessary discomfort because we were clueless.

A few days ago, Dr. J. Leonard Lichtenfeld, who blogs for the American Cancer Society, wrote an excellent post about the need to think clearly about palliative care. His main point is that “palliative care” doesn’t necessarily mean that you’ve given up on other treatments. Of course, sometimes it does mean that.

But Dr. Lichtenfeld makes the excellent point that “palliative care” should be discussed any time a patient faces a serious illness. As any cancer patient knows, treatments for serious illnesses cause really uncomfortable side effects. Many treatments send us into freak out mode, causing depression, anxiety and insomnia. Doctors and patients should have frank discussions about how to relieve, how to “palliate,” those problems.

A bill is currently making the rounds of Washington that would make care planning available for patients with advanced illnesses, whether those illnesses were terminal or not.

The bill would make a team of professionals available to people facing serious illness, not only a team of health professionals but also a chaplain or another spiritual advisor: These people would help the patient understand treatment options, what might happen if the treatment is not successful, and what a patient would desire if he or she became unable to make rational decisions.

The last time this sort of thing was proposed, it got lost in the rancorous debate over the Affordable Care Act and led to accusations about death panels. The death panel charge has since been debunked, and I hope that this time we can have a rational discussion about palliative care, and advance care planning.

Americans, like my mother, really don’t like to discuss anything related to serious illness, end-of-life and death. But we should. I’ve written many times on this blog about the need to really understand your options, to plan for various contingencies, to seek help for side effects, and to think about what you would want if treatments fail. Studies show that patients that take the time to do this spend fewer of their last days in the hospital. Patients who do this tend to be happier with their care at the end of life.

As my 94-year-old father-in-law likes to say, “No one gets out of this life alive.” So, as Dr. Lichtenfeld suggests, let’s try to stop thinking of “palliative care” as “giving up.” Let’s try to define “palliative care” as a collection of medical interventions that make serious illness and/or the process of dying less excruciating. How can any of us be against that?

If my family had had that sort of discussion, my Dad’s last week wouldn’t have been so uncomfortable. And when it’s my turn, if I need it, I sure hope someone remembers that washcloth trick.

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