Dr. Shoshana Ungerleider has a new article on Vox.com where she grapples with how doctors are trained to address death, both medically and in communications with patients. She wrestles with doctors’ approach to death:
Maybe it’s easier to just give someone more treatment instead of stopping and telling her that she’s dying. These conversations are never easy, no matter how many times you’ve had them. They can be enormously difficult even under the best circumstances, and often the circumstances are more like a patient (or, more often, his family) arguing, denying what’s going on and demanding to see another doctor. Maybe we just don’t want to go through it. Or maybe we hide behind more tests and procedures to make ourselves feel better — like we’re still fighting. Like we haven’t failed yet.
That part struck me: do doctors see death as failure? I recognize that their job in many circumstances is to prolong life and forestall death, but death will happen at some point regardless of all medical technology. One of the first principles of medical practice is “First, do no harm.” At what point does the prolonging of life at all costs constitute a harm done to the patient?
Dr. Ungerleider’s article left me with a feeling that most doctors are not appropriately trained on how to address the end of life. Now, certainly, patients need to take an active role in this, from discussing their desires for their end-of-life experience with family members, to creating advance directives and living wills, etc. Families need to respect the wishes of dying loved-ones, and be comfortable making the choice to stop unnecessary medical interventions when there are no explicit wishes known. But doctors are the driving force behind much of what happens in the course of treatment, and they need to be given the resources to have end-of-life planning conversations, and the training to know when to stop unnecessary medical intervention. Doctors need to be trained on how to explain to patients with life-limiting illnesses what their options are, and give the patients space to think about and engage with their options so that they can have a say in how the course of treatment progresses. I found this paragraph extremely telling:
I felt unusually at ease talking to Mr. Jones. After delivering the news, I decided to venture into unusual territory: I asked him what he understood about his diagnosis and his future. He explained that he had read online how he likely had only months to live, but that his oncologist wanted him to continue chemotherapy for now. Then I asked him what he wanted. To my surprise, he paused. After a moment, he looked up, tears welling in his eyes.
“I’ve had a wonderful life,” he said. “I have an amazing family who loves me, and I want to be at home with them, not here in the hospital.” He started crying. He grabbed my hand. “No one has asked me what I want. Can I please go home? All I want is to be home.”
“All I want is to be home”. At the end of life, after so much has happened to a person, whether it be an elderly Veteran who survived war and raised a good family, to a young child who has suffered too much for their short life, shouldn’t such a simple request be honored? All the medical technology in the world can’t replace the comfort of home and family. We need to give doctors the training and support to ask these questions, to talk to their patients about options for care. “What do you want for your end-of-life experience,” is certainly a difficult question to ask, but doctors are doing the patient a disservice if they don’t ask it.
Did this article make you think? Check out our resources on The Care Planning Act and see what HAN is doing to support and promote advanced care planning.