First Person Medical

Reader Allison offers some personal insight on palliative care:

I think most people who haven't had someone close to them dying may not really understand palliative care. "Palliative Care Doctors" are not the only doctors who deal with this, and "palliative care" might sound like it's just emotional and some feel-good stuff, but modern palliative care can be quite agressive.

Here's an anecdote: my father in law found himself in terrible chest and back pain, with a terrible cough. He saw a doctor, and was immediately--the next day--referred to a pulmonary doc at Stanford Med Center who determined it was likely lung cancer. Within hours, he was having a biopsy to confirm the suspicions, and we were told by the oncologist that the cancer was end stage, that he had less than 6 months to live. The cancer had already spread to his brain and other organs. The chances of his survival? basically zero.

And then they explained they were starting radiation therapy and chemo immediately. Why? Because the rad therapy could shrink the tumor and relieve or stop the back and chest pain. The chemo could stop the spread to the brain and thereby by more time that he was lucid and had functioning control over his mind and limbs.

This was PALLIATIVE CARE. It would not extend his life (though other family members failed to understand this, it was made clear to a few of us several times.) The chemo and rad therapy continued for 3 months, until he became too sick to undergo anymore. He died a month later, having spent the last month in hospice care.

This is the kind of care that Dr. Emmanuel has suggested is pointless. This is the kind of care that is most likely to be rationed. This is the kind of care that allowed family members to love him, to talk to him, and to make peace with all of this, as it gave him 3 good months. It didn't make anyone live a little longer, but it did make that time of living MORE VALUABLE to all of us.

Later, she adds:

Let me add that all of the suggestions of health care directives in the world will not make people confront them, and will not matter because in the end, the person controlling the choices is not the person who is dying.

My father in law knew he was about to die. He still refused to talk to a lawyer in those 3 months, always finding a way to put it off. It's called denial, and his wife wanted to spend all of her time there.

What he claimed he wanted for health care choices near the end was simply impossible. He wanted less intervention he said, and he wanted to be home. But no one could take care of him at home, and no one who recognized that was allowed to intervene. His wife was incapable of coping, but held on making inappropriate decisions despite his wish, and so bad decisions were made until other state health agencies forced his entrance into a hospice.

Living wills and things may help people to hold difficult conversations. But in much more likelihood, they only help people to hold easy conversations: if it's easy for your fmaily to talk about death and dying, then the living will will help. If it's not, then it doesn't matter what the piece of paper says, because the people living that will make the determination not the "living will" piece of paper.