Palliative Care: No Easy Answers
I took care of a close relative of mine, who in middle age, died of lung cancer. She struggled for 3 years with cancer before it took her life, but Margie never gave up despite the fact that chemotherapy and radiation were no longer options. She didn’t want to know the full extent of her illness. When any medical professionals tried to talk to her about life expectancy, she refused to hear it saying, “How can they know when I’m going to die?”
It robbed her of hope and initially, I agreed with her. She tried alternative and complementary treatments including visiting a faith healer. But as it became painfully clear that a cure could not be had, I wrestled with uncertainty about my duty to her as my patient and a beloved family member. If I didn’t tell her the full extent of her disease, would death catch her by surprise? Would she resent not being able to plan realistically and enjoy what time she had left? Or would telling her take away her last shred of hope?
To say that she was simply in denial, even now, 9 years later, seems too easy and glib. She had a fierce desire to live and although I had given up on her chances for survival, she had not. In certain ways, Margie had fought more fiercely for her life in the midst of dying than she had done in the midst of living when opportunities were still available to her.
I had witnessed death often in the nursing home where I worked. I comforted families and patients, helping them to reach decisions about code status, the use of IVs or antibiotics, whether to hospitalize – all issues important to discuss. I knew how to have the conversations with families about when to stop treatment and seek palliative care. Although we want a peaceful death for our patients, many of our patients will never accept the harsh reality of their own death with equanimity. And who are we to make them?
Margie’s story is simply a long prelude about another woman’s struggle with her own cancer and her refusal to have palliative care. Her story is in this weekend’s New York Times. What makes this article so compelling is that this 41 year old woman was a palliative care doctor who in the end could not accept palliative care for herself. I encourage people to read about Dr. Desiree Pardi.
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