(Lola Butcher covers policy and business issues for publications read by physicians and healthcare executives. Her awards include an Association of Health Care Journalists Reporting Fellowship on Health System Performance. She can be reached at lola@lolabutcher.com. This blog post, used with permission, first appeared online at https://www.nextavenue.org/is-end-of-life-its-own-stage-of-life/. It was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and The Gannett Foundation.)
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This article was written by Ms. Butcher following an interview with Deborah Carr, professor and chair of the sociology department at Boston University, who has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life (EOL). At the Gerontological Society of America’s annual scientific meeting last year, Carr proposed that “dying” or “end of life” should be considered a new life course stage.
Deborah Carr
“When I started writing what I knew about things like pain and suffering at the end of life, it dawned on me that we need to interrogate: What is end of life?” Carr said. “We don’t actually have a clear definition.”
Q: Why do you consider end of life its own life course stage?
Deborah Carr: The EOL period is longer than it ever was historically. A hundred years ago, people would die suddenly or shortly after becoming sick. Unfortunately, we are actually seeing an uptick of that short duration with COVID-19. But for most other leading causes of death among older adults — cancer, heart disease, chronic obstructive pulmonary disorder — there can be a very long time period between becoming sick and dying.
If we think about the EOL stage as something that we can have some agency over … it may demystify it.
As I started thinking about this expanded period, I realized that end of life is like any other life course stage. There are developmental tasks — things we should do — during this stage to ensure smooth transitions. Just as we learn, as children, how to be a teenager and then how to be an adult, maybe we need to learn how to prepare for the end-of-life stage.
What are the other life course stages?
The main stages are infancy, childhood, adolescence, young adulthood, midlife, and old age. Even though these stages make sense to us now, some of them are actually pretty new. For example, the notion of adolescence didn’t even exist until the very early 20th century because many would go from being children to adults before high school and college were widely attended, and when child labor was common. Likewise, midlife, or middle age, is a pretty modern construction.
How does the EOL stage differ from old age?
I think it’s important that, culturally, we move away from the notion that old age equals death, because that is ageist. Obviously, old age is among the most powerful risk factors for death, but about 25 percent of all people who die each year are under age 65. And many older adults are perfectly healthy; they aren’t in the end-of-life stage unless something happens, like they get COVID and die a week later, for instance.
When does the end-of-life stage begin?
Some life-course stages have biological or legal markers. For example, adolescence generally correlates to puberty; in most states, people are legally considered adults at age 18; old age is typically thought to start at 65 when most people become eligible for Medicare and Social Security.
End of life is different in that the starting point is unclear. We can’t definitely state when that stage starts, because illness trajectories are uncertain.
The important thing is that, once they start developing major chronic illnesses, people — whether they expect to continue living for one year or four years or 10 years — should think about how they want to live during that stage of life. I’d encourage them to discuss the topic with family members, embrace it and take the steps that one needs to do in order to have that stage be as pain-free and peaceful as possible.
People could critique this idea on the grounds of, “Well, how do you prove someone is in the end-of-life stage?” I’m not out to prove anything, but just really to reshape our thinking of how we can prepare for, rather than avoid thinking about, the inevitable.
You mentioned “developmental tasks” that need to occur at the end of life. What’s on the to-do list at this stage?
Just as you tell kids to eat their vegetables so they will be healthy as an adult, there are things that we can encourage people to do to prepare for the end of life. Talk about what kind of funeral rites — if any — match your personal preferences. Talk to your loved ones about how they will survive financially without you. Encourage couples to have conversations about how the surviving spouse will manage finances and household tasks.
All of these preparations are things that I hope people are doing already. But often they don’t, because we, as a society, fear death. If we think about the end-of-life stage as something we can have some agency over, something we can control to the best of our capacities, it may demystify it and really de-stigmatize it a bit.
You’re talking about something much bigger than filling out an advance care planning document, right?
Advance care planning is something that one should do early in life to help facilitate the transition to end of life. Have those conversations early and often because your preferences are likely to change over time.
Oftentimes, people do advance care planning too little, too late. For instance, when someone is given an opportunity to do a living will after they arrive at the hospital and is already dying or in severe discomfort, that’s not the optimal moment to do planning because the patient and family may be in distress.
So, we can think about advance care planning as something that we do earlier in life that helps to have a more satisfactory end-of-life period that accords with one’s wishes. It also can make that period easier for loved ones.
It’s really hard emotionally to make a decision for someone else’s end-of-life care. It helps when people who are in that stage of life have already brought their family members on board and talked about what their preferences, values, and fears are.
Not to trivialize, but in some ways it’s like those old anti-drug ads: “Just talk to your kids about drugs.” Just talk to your loved ones about end of life because it will help you all prepare.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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If creating a new stage of life, the end-of-life stage, will get more people to talk about death and plan for it, then I’m all for the new stage!
What should I do when my end of life choices, carefully thought out, disagree with what my family’s ideas/opinions are for me? You say to talk it over with them and I have attempted it over the years. They, particularly one adult child, just shrugged me off and refused to discuss the subject. I am not close to them, either in distance or thought, but my fear is that they will try to stop me from self exit when I decide the time has come. I am clear-headed, not depressed and have been a member of Final Exit Network for over a decade. I am not ready yet, but being 82 with several untreatable conditions, I am aware of my mortality.
Penny, for those who refuse to acquiesce in your wishes, change your advance directive to name these members, and state that they are to have absolutely no say in your health care. Also discuss the issue with your agent named in your directive; make it clear that you expect him or her see that these people are so excluded.