Ezekiel Emanuel is getting a lot of hate these days, ostensibly for an article he wrote for The Atlantic six years ago, but really, I think, because outrage is contagious and reading long-form articles requires effort. Do I like the ableism and the utilitarianism in that article? No, I do not. Is it appropriate for people to be freaking out because a EUTHANASIA ADVOCATE has been appointed to the COVID PANEL and it is MORE PROOF that Biden worships Satan?
No. No, it is not.
To my eye, that article is an exhortation to think seriously about your own preferences for end-of-life care, and to have the hard conversations up front with your loved ones. It is a distortion of Catholic teaching to suggest that maximum lifespan should be the goal in managing end-of-life care. If an 80-year-old woman is diagnosed with advanced cancer, she can absolutely refuse the chemo that might give her three more months of retching and brain fog. If I get seriously ill with COVID, I want to be treated aggressively. I have a lot of living left to do. But I might be less willing to be mechanically ventilated if I were 25 years older -- it's hard on anybody to be intubated, it's especially hard on elderly people, and the last time I looked at the numbers on post-extubation recovery for elderly COVID patients, they weren't very encouraging. I'm not obligated to consent to a highly invasive treatment that's not very likely to help.
Far too often, this kind of risk-benefit analysis turns into accusations about DEATH PANELS and KILLING GRANDMA (although, weirdly, many of the people who were yammering the loudest about DEATH PANELS in 2008 are now loudly asserting that Grandma's had a good run so let's protect the economy). Let me be clear: direct action to end a patient's life is gravely immoral. But Emanuel seems to agree with me about that: he says, "Since the 1990s, I have actively opposed legalizing euthanasia and physician-assisted suicide."
Making good decisions about end-of-life care is hard work, and we often do a rotten job of it in this country. I cannot say enough good things about Atul Gawande's Being Mortal, which treats many of the same questions Emanuel considers in his article. (Seriously, read it. One of the best books I've read in the last ten years. The usual reminder applies: if you click my affiliate link and purchase the book, Amazon will pay me a few cents.) When I worked in long-term care facilities, I was often a part of these conversations: your mom is dying, and she can't eat safely, so let's talk about the options. This stuff is never going to be easy, but it is a whole lot more straightforward if the family is in agreement and confident that their decisions align with their loved one's wishes. If the loved one has just had a massive stroke and you can't tell whether they're asking for water or quiet or a bedpan, it's significantly more complicated to have a conversation about DNR orders.
It is a core truth of our faith that we cannot be ruled by fear of bodily death. We see this in the writings of St. Paul, looking with equanimity at his prospects of living and dying. It's kind of weird that St. Francis called death our sister, but I am not going to argue with him about it. It seems very odd to 21st-century eyes that the Mother Superior at the Carmel in Lisieux required St. Thérèse to forgo pain medication, but it is another piece of evidence that refusing medical treatment is compatible with living a holy life. We cannot deliberately speed death's arrival, but we don't always have to fend it off vociferously.
I dislike much of the reasoning that undergirds Emanuel's thinking. His distaste for disability is problematic, for one. (Although-- he is making an excellent point when he writes about how seldom people understand that disability can be an unexpected side effect of medical treatment. We want to believe that a recommended treatment will make us all better. Sometimes it makes us worse.) His emphasis on productivity as a metric of human worth is also problematic; my value as a human being is unrelated to the number of papers I wind up publishing. But his conclusions seem correct to me: end-of-life care in this country is a mess, and we can make it better by approaching it thoughtfully. Furthermore, he is not saying that his decisions should be your decisions. He says explicitly that he provides concrete assistance and emotional support to elderly people who want to pursue medical treatment that he would decline for himself. I think we do him an injustice when we assume that his thoughts in a personal essay will translate into egregious policy errors. There is nothing in this essay that makes me think he will be sneaking into hospitals, holding pillows over the faces of elderly COVID patients in order to free up intensive care beds for younger people.
When it was just people ranting on Facebook about the evils of this appointment, I wasn't too fussed. But today America published an article that I find weirdly alarmist. I was braced for the worst when Emanuel started talking about policy recommendations in his Atlantic article, but I'm 100% comfortable with his policy recommendations. He suggests that we rethink our emphasis on lifespan as a metric of healthcare quality, and that we put more money into researching the disabling conditions that affect the elderly, such as Alzheimer's.
I am open to other perspectives here, but I do think that if a person says, "I have reached this conclusion about my own personal decisions, but other people are welcome to conclude differently," we should not infer that he is SECRETLY PLOTTING to MAKE everyone do what he would do for himself. If he has other published writings I should know about, I'd be happy to read them. (I'll let you know up front that I don't think being more deliberate about end-of-life healthcare spending is evil, as implied by the America writer.) If your work with dying patients is more recent than mine (I haven't worked in long-term care since 2003), I'd be very interested in your point of view. If you just want to share some thoughts about end-of-life decision-making, I'd love to hear from you too. [Wonders briefly if it's a bad idea to write about euthanasia on the internet; pushes "publish" anyway...]
My SIL and I read Being Mortal as her dad/my FIL was dying in 2015 and have recommended it to everyone since.
Posted by: Amy Fisher | November 19, 2020 at 01:32 AM
I don't think we need to assume he is secretly plotting. I do think it is fair to worry he may not *value* our elder years as much as we want him to.
It may ring a little bit like saying, "We have chosen {extended breastfeeding} for our family" and having everyone else freak out about how you are judging them just by making your own choice, but cases are different when one is a private party vs explicitly put in charge of, say, WIC. In the second case, I think people expecting support for their formula costs might have some very legitimate questions, even concerns. Concerns that may end up addressed, but still - valid concerns at the get-go.
Posted by: mandamum | November 19, 2020 at 09:55 AM
I did not read Emanuel's article, but it seems to me that it could lead to the "safe, legal and rare" argument about ending life.
Posted by: Marcie Miller | November 19, 2020 at 08:37 PM
I haven't read the article you mention, but I am in agreement that end-of-life care should not mean "extend life at all costs." A coworker's mom recently passed; she's elderly and has been ill for a couple of years now. Plus COVID had her isolated in her care home. Coworker was adamant that she'd rather her mom have a good life, whatever was left, than a long life that was miserable. She had to fight the doctor on that, more than she should have had to. I've also seen elderly relatives sent to the ER multiple times, only to be sent home and have it happen a few months later, with the time in-between not the most pleasant in the world.
I've told you about my Catholic Social Teaching class at work. We had a whole session on this. The same conclusion was reached in that class.
Posted by: mary d | November 20, 2020 at 09:49 AM
I read Emanuel's article back in 2014 and Being Mortal the year it was released and both have significantly informed my response to Covid. Both are excellent looks at what it means to age and approach death without actively pursing it. Both of these texts have colored my frustration with the knee-jerk response to suddenly prioritize safety over living.
Last year, I spent the last couple weeks of my 84-year old grandmother's life with her. We were not close. She often mistook me for her daughter (my aunt) who has not spoken to her for 20 years for the very best of reasons.
I missed my own family, three states away. And yet. It was clear that it was the end of her life and she needed someone who was not a stranger to care for her. I can't imagine what her last few months would have looked like had we, or the nursing home we had to move her into for the last week, been trying to protect her from Covid.
With that experience fresh in our memories, and with lots of Emanuel and Gwande-inspired conversations under our belts, both my parents and in-laws expressed the very firm desire that we spend as much as time as possible with them, despite orders to lockdown. They know they don't have unlimited years left. They want to spend the ones they do, with their families.
As more and more data comes out (average age of Covid morbidity tracks with average age of national morbidity) I keep struggling with your posts. We are mortal. Why does this new cause of death incite drastic measures?
Yesterday, we found out that my son's godfather, who had drifted out of our lives, died suddenly of a double pulmonary embolism. Last summer, my godmother died of a heart attack. We are mortal.
Today I heard that 42% of Houston ISD students are failing. Distance learning is not serving kids. We are sacrificing almost half of our children to "protect" them and teacher who have a greater risk of dying on the drive to work than from a disease they most likely won't catch from their students.
Whether it is Covid that kills, or a car accident, death is still a great tragedy. We are not meant to be mortal.
We look to our next life, when the image of God is fully restored in each one of us and immortality is renewed. Until then, we live, and we love, and we commune with others, knowing that one day, any day, we will die.
Posted by: Calee | December 02, 2020 at 03:01 PM