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Yesterday’s New York Times published a riveting account of a young doctor who became a leader in palliative care for terminally ill patients, who ended up denying her own training and advice (so to speak) when she became terminally ill with cancer. Palliative care, as you may know, is the term used to describe the kind of treatment a terminally ill person receives after he or she makes the decision that there’s no realistic hope of recovery, and the thing therefore to do is to adjust medication to make the natural journey towards death as pain-free as possible. When Dr. Desiree Pardi, the physician in the Times story, learned that her cancer had returned in a serious way at age 40, she decided to go all-out with radical treatments in an attempt to beat it back — this, even though they were extremely difficult for her to endure. She did not survive. Excerpt:
Dr. Pecker, her mentor, said he would have reassured her that she was not betraying her principles by refusing to go to hospice. “I think that how you want to live, and what you choose to do is different than what you might recommend to someone else,” he said.
Her supervisor, Dr. Adelman, sympathized with her internal struggle. “Here she was, this really young, passionate woman who really had a calling,” he said. “She wasn’t ready.”
Some doctors were less understanding. “After her story came out, they would get very frustrated and say, ‘Oh, she was in denial,’ ” Dr. Lim said.
She died without ever learning the extent of her disease. Her husband said that she had tumors in both lungs, her liver, the lining of her small intestines, her colon and her bones.
Dr. Lim said doctors at Massachusetts General might have been right in offering palliative care a year earlier. “She passed away in unfortunately quite a painful scenario,” she said. “Many people would not have chosen that route.”
As you might well imagine, this is not a story of merely passing interest to me. My sister Ruthie is fighting stage IV cancer, and has chosen not to know many details about her condition. As she reasons, what good will that information do her? She needs to muster all her emotional and physical reserves to fight for her life, and if her odds of survival are not good, having that information can only serve to undermine her will to live. I see the reasoning, especially given that she’s only 40 years old, and a mother of three. Still, I don’t know that I would choose this route were I in her shoes. I find information to be empowering, in the sense that it helps me choose a course of action against a variety of scenarios. And yet, this Dr. Pardi from the Times story devoted her entire medical career to helping patients with very long odds against them choose palliative care — but when her own time came, her will to live was so strong that by her actions she negated everything she supposedly stood for.
My friend David Rieff’s book “Swimming in the Sea of Death” is a memoir of his mother Susan Sontag’s struggle with the cancer that killed her in 2004. The first time I read it, I struggled to relate to the details he relayed in the book. But last night I re-read it, and for obvious reasons, it made all the sense in the world. Sontag was in the same place as my sister, and Dr. Pardi, and like them, chose not to know the extent of her illness, for fear it would annihilate the will to live, and therefore the will to fight on. (It should be said that in 1975, Sontag had been diagnosed with stage IV breast cancer, and given very little hope that she would survive … but she beat the odds. So there was precedent). Prior to this passage, David has been writing about the cancer specialist Stephen Nimer, who did not lie to his mother, but who, by the way he handled her inquisitiveness, made the patient’s question of whether or not she was going to survive “unaskable” (David’s word). He writes further:
There are doctors who, for all the deep respect they have for great physician-scientists like Stephen Nimer, are critical of this approach. After my mother’s death, Diane Meier, a physician at the Mount Sinai Hospital in New York who is one of the pioneers in the movement to improve palliative care for terminally ill people, offered a different view. “It’s so difficult,” she said. “As a physician, you don’t want to impose your quantitative, Cartesian view of probabilities on an individual person who says, ‘That’s probabilities, that’s not me. I’m a fighter. I want that thousand to one chance and who are you to say that it’s not worth it?’ Whose life is it anyway? The result is that, as doctors, we end up through that kind of thinking becoming unwitting participants in a folie a deux with patients and family of caving to the desire to live, because it is respectful of the patient and who she or he is and their perception of the right way to live, while realizing, in the other part of your brain, that there’s essentially no chance that this is going to help, that it’s definitely going to cause harm and side effects, that it’s hugely expensive out of the public trough, and it is a very wearing kind of cognitive dissonance.”
Meier’s tone seemed more despairing than critical. She spoke of “the denial, the kind of winking that goes on, where, yeah, we all know the patient’s going to die but we’re all going to pretend like there’s hope, so we’re all going to go through these rituals because that’s what we believe that the patient wants. In the meantime the patient is watching the doctor, who is offering this treatment, and clearly thinking to himself, if the doctor didn’t think it would work he or she wouldn’t offer it, but what the doctor’s not saying is that the odds are minute and that he is trying to be responsive to the needs of the patient for hope. It’s like a minuet. It’s surreal.”
It is surreal. But what’s the alternative?
David quotes Nimer as saying that if there really is reason to hope, however remote, then it’s not his place to take that away from a patient who is willing to endure great hardship for the chance at a near-miracle cure. On the other hand, look at the case of Dr. Pardi, whose crazy-brave fight to the very end to beat her cancer possibly robbed her of the opportunity to face her own finitude and mortality, and to say and do some things that she ought to have done had she chosen not to fight on, but to resign and to accept things she could not change.
What a terrible position to be in. I think I know how I would choose to handle that situation, but I don’t think any of us can say for sure until we’re in it.