How not to die (Not appropriate for children)

One of these days Caterpickles will get back to answering The Six-Year-Old’s questions as usual. Today is apparently not that day.

Have you seen this?

Last year, my mother sat down with my husband and me to talk about my role as her healthcare proxy. Although she is not sick now, in the event that she becomes sick, she wanted to be certain I knew her wishes so that I could advocate for them on her behalf, if necessary. It was a painful conversation. And a very hard subject to write about. (Just typing this paragraph made me cry.)

But it was a vital conversation, because making end-of-life decisions on behalf of another person is impossibly hard, and I am eternally grateful for my mother’s act of love in setting down a list of guidelines for me in making those choices for her, should that day ever come.

As an ICU doctor at Beth Israel Deaconess, my husband talks with families about end-of-life care on a daily basis. Having him present for my conversation with Mom was an immeasurable blessing. He knows the available treatments intimately, and as a doctor knows how to navigate the medical system to ensure that my mother will receive the kind of care she wants even if I am too much of a mess to be much use at the time. Thank goodness.

But what do patients without doctors in the family do? How can those caretakers make sure their loved ones receive the sort of end-of-life care that provides the quality-of-life they want in their final months?

Dr. Angelo Volandes, an assistant professor at Harvard Medical School, has a plan for that. He is developing a series of short 5-7 minute video documentaries about various end-of-life conditions, such as advanced dementia, as well as the treatments commonly available for them. His goal is to make it easier for patients and their loved one to align end-of-life care with quality-of-life goals.

From the article:

“In the health-care debate, we’ve heard a lot about useless care, wasteful care, futile care. What we”—Volandes indicates himself and [his wife Dr. Aretha Delight] Davis—“have been struggling with is unwanted care. That’s far more concerning. That’s not avoidable care. That’s wrongful care. I think that’s the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time.”

What should have taken place was what is known in the medical profession as The Conversation. The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with [the author’s father] and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired. Alas, evidence shows that The Conversation happens much less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don’t really understand. Many doctors don’t make time for The Conversation, or aren’t good at conducting it (they’re not trained or rewarded for doing so), or worry their patients can’t handle it.

Dr. Volandes is trying to change the manner in which The Conversation takes place, by providing short, low-emotional impact videos about the realities of several end-of-life conditions, including advanced dementia, and the treatments available to patients with those conditions, such as CPR and feeding tubes.

In his experience, even when doctors explain the end-of-life care options to their patients, patients aren’t always able to absorb the words, so may not fully understand what is going to be done until it is too late. But when you show a patient what is going to happen either through a video or in person, then they are better able to make informed choices about the type of care they want to receive in their last weeks.

“On the very first night of his postgraduate medical internship, when he was working the graveyard shift at a hospital in Philadelphia, [Volandes] found himself examining a woman dying of cancer. She was a bright woman, a retired English professor, but she seemed bewildered when he asked whether she wanted cardiopulmonary resuscitation if her heart stopped beating. So, on an impulse, he invited her to visit the intensive-care unit. By coincidence, she witnessed a “code blue,” an emergency administration of CPR. “When we got back to the room,” Volandes remembered, “she said, ‘I understood what you told me. I am a professor of English—I understood the words. I just didn’t know what you meant. It’s not what I had imagined. It’s not what I saw on TV.’ ” She decided to go home on hospice. Volandes realized that he could make a stronger, clearer impression on patients by showing them treatments than by trying to describe them.”

It is Dr. Volandes’ hope that his videos will become an integral part of The Conversation nationwide.

Read the whole article.

Thanks to The Six-Year-Old’s Uncle Paul and my friend Tamara Pierce Roberts for bringing it to my attention.

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