The Last Act of Love
Your responses to a culture that fears burdens and turns to euthanasia
Last week, I spoke on a Catholic University of America panel on euthanasia, and a bit before that, I had asked for your own thoughts on preparing for the end of life. Our conversation was sparked by Richard Hanania’s praise of suicide as a way of liberating others.
I don’t like inconveniencing others, and for many parents the possibility that one day they could be a burden on their children scares them much more than death. I think this is a noble sentiment, and would gladly sacrifice myself when I’m old so that those I care about can live better and more fulfilling lives.
I strongly disagree with Hanania—and I think these kinds of statements contribute to vulnerable people feeling like they have a duty to kill themselves. Oregon conducts a yearly survey of people who plan to kill themselves through Medical Aid in Dying. Every time, the people seeking lethal drugs are 1.5-2x more likely to cite “Burden on family, friends/caregivers” than pain as a reason to die.
Knowing who you can ask for help is enough of a problem that some seniors can’t get necessary medical treatments, because they don’t have someone they feel they can ask to drive them home after anesthesia. It’s a particular concern for “kinless adults,” but if your family doesn’t live where you live, you’ll still struggle with these needs.
I asked you about your experiences making or receiving promises of care at the end of life. How can we give each other hope that we are worthy of care? I asked:
How have you planned to support your parents in their dying, or planned with your children for support in yours? Are those conversations explicit or elliptical?
Is there someone outside your family you’ve committed to care for in extremis or who has made a commitment to you?
CC has been preparing to care for a mother with Parkinson’s
She is a mild case so far and is working hard with therapies and treatments and diet changes to slow the progress. She's doing okay, but struggling emotionally with the idea that she might eventually become a burden to others after a lifetime of being independent. Why else have four daughters, I asked her, than to burden them when you're old? I was joking, but also--we want to help her. And with four of us to help, ideally no one will be too unduly overtaxed, depending on how much care and help she (and my dad) eventually require.
In smaller families, it’s a lot harder to share the load. I was very grateful to my brother for doing a lot of care for my dad alongside my mom—I had a toddler and was pregnant, and couldn’t do as much as he did.
Jenni sees this time as the consumation of familial love:
Caring for my parents now, my mother with advanced dementia and my father in an increasingly similar way, is an honour even if heartbreaking and hard in a number of ways, emotional and practical (even though they are now together in residential care). But it is a privilege and a gift to love them and to have been loved by them. I came home to my family through the gift of adoption, and my mother loved and cared for me just as if I were born of her body. I feel this privilege to love them now, in their nineties - even though it’s been the steepest learning curve - so deeply. This is profound.
Haley of Life Considered wondered about a relative who has said “I hope not to live THAT long”
I wonder how much of this mindset is common to the upper-middle-class Boomer Generation (I know, it's an over-used cliche to talk about the quirks of "The Boomers" but I am honestly curious!) There are so many (both my parents and in-laws) who have been financially successful in their working lives and thrived independent of their own extended families — and have not ever implied or asked about interdependent family care down the road. The assumption seems to be we all pull ourselves up by our bootstraps independently, and save money for that care accordingly.
Sarah experienced a painful push to not look to family for help:
I also wonder if there is a generational aspect at play here. When I started attending college out of state, my parents turned my former bedroom into an office the same day I left and told me that it was a message that I was to start finding my own way now and wouldn’t have a room to return to on a long-term basis. It was cruel at the time as I was a good daughter and hadn’t given any cause for this, and still feels cruel when I think about it, but I genuinely think this is how they were thinking: if you’re an adult you have to pull yourself by your own bootstraps, no room for interdependence.
I’m grateful that my mom got rid of my bed so that she could put in a larger one my husband and I could share. And she’s given up her larger room to us repeatedly now that our family has grown to two pack and plays.
Magdalen’s family has been talking explicitly, spurred by her parents’ experience caring for her grandparents.
My dad often talks about the necessity of preparing to have diminished capacity, and in planning to cede control and independence in some ways *before* it becomes completely necessary, because we've seen by example that it's all too common to lose judgment of such things at an advanced age. For example, I or one of my siblings will receive power of attorney over family finances before he turns 80.
I think often the issue with elder care is not that children don't want to put their lives on hold for their parents, but rather parents who are totally unwilling to reorganize their lives to receive such care, or perhaps do not realize that they need it. I've shared a story here before about having to call Adult Protective Services for an elderly neighbor who suddenly lost his independence and wouldn't agree to seek care--in the end he had to be involuntarily committed to a nursing home. He had no family and clearly nothing even resembling a plan for aging.
I appreciate this perspective, where increasing dependence is the expectation, and the question is when certain needs will come into play, not whether they can be escaped or denied.
Michael also thought about how to approach death and debility as an inevitability:
When my grandfather was dying, I was so afraid to visit - I thought it would be sad and painful. I finally visited in what happened to be his last instance of lucidity before passing a week later.
I was right, it was sad and painful. But I only regret not visiting sooner and spending more time with him. Trying to avoid the pain of death and dying is self-defeating. My loved ones will reach a point of dying, and this will be painful no matter how it happens. Meanwhile I will either have meaningful loving connection (which by necessity includes caring for such a person) before they die, or I’ll wish I did.
One commenter (who, like me, is named Leah), laid out how she thinks about the particular duties/ties of family:
In my view, family bonds are somewhat similar to hometown/grade school friendships. Your pool of potential grade school friends is largely determined by who lives near you and who your parents are friends with; a lot of random chance. Similarly, family bonds tend to be closer because they're people in your life from birth, who care for you through a tie/relationship with your parents. Families are like close, interlocking friend groups, usually with the added odds of similar interests/tendencies due both genetics and shared environment. To me, the obligations I feel aren't "because we're family" but "because we're close, because I like you, because you've done so much for me" (which came as an extension of social bonds formed between relatives). I like that this conception of why family is important doesn't privilege mere bonds of blood/marriage/adoption over chosen family or strong bonds of friendship.
This raises questions about who cares for the family member who isn’t close, who isn’t liked, and who hasn’t done much for everyone. You can see care as a kind of tanda, where everyone takes roughly equal turns giving and withdrawing.
But there will always be some people who cannot give in proportion to their need. As we approach Good Friday, it’s worth noting that, for Christians, everyone falls into this category.
What we need, we can’t repay. We can return love, but we can’t make things equal.
P.S. There’s a small clip of the Euthanasia panel below, the full panel is here.
I'm late to commenting on this topic. I haven't read Hanania's piece because just the excerpt you quoted was too painful. I've been personally impacted by physician-assisted suicide (PAS). Someone very close to my husband died by PAS in California last spring. My husband called her "Godmother" (she wasn't a godmother in a religious sense; she was not religious and neither is my husband's family). She was like a mother to him because his own mother had died when he was a child. We visited with my husband's godmother after she was diagnosed with colon cancer and had already made the decision to die by PAS. When we were there, I realized that everyone--doctors, her family--was let off the hook by the PAS option. Nobody needed to provide care anymore, and this pernicious idea was made acceptable because a) my husband's godmother chose PAS, and b) it's a legitimate, legal, medical option. Reasonable and caring people don't push back against personal choice AND the legal advice of a doctor (doctors would say they don't advise PAS; maybe they don't explicitly advise it, but its mere presence as an option leads to it being advised implicitly). My husband's godmother hardly knew the doctor who approved the fatal drugs, and appointments were conducted on Zoom and by phone. The doctors did not push for hospice or for other interventions, like in-person counseling. And family members were relieved to not have a drawn-out process of dying (this was because of an overwhelming fear of disease and death; not because they were heartless). The line everyone adopted was, "this is what she wants, therefore it is right." Nobody pushed hard to intervene and say, "you are loved and we want to take care of you." (I tried pushing this message, but I was stymied by the inertia of the system-- the ball towards suicide had begun rolling and it was extremely difficult to push back against the message that "the patient is only taking medical advice! What's wrong with that? This is what she wants!") I will say that everyone involved meant well; they were trying to do what they thought was best. There was no "bad guy," which is what makes the horror of PAS so difficult for many to recognize and fight. Everyone wanted my husband's godmother to have a "good death." Because she chose PAS, they figured that is how she wanted to die and that it would be a good death because she chose it. I'm still struggling over her death because I saw how my husband's godmother didn't have good options and therefore couldn't make a good choice. She didn't have family who were able to step in and care for her. She was exhausted and lonely. She didn't know how long she would suffer, and nobody--particularly people she should have been able to trust, like doctors--would sit with her in person, to try to comfort her and help her navigate the true menu of options before her.
My husband's godmother did not have a good death. I've been thinking ever since about how I'm implicated in her death and the deaths of others like her--people who are lonely, scared, tired, and in pain. In the excerpt from Hanania you quoted, he said "[I] would gladly sacrifice myself when I'm old so that those I care about can live better and more fulfilling lives." I do not live a better life because my husband's godmother committed suicide with the help and approval of doctors, family, and the state of California. If euthanasia is about surviving friends and family members being fulfilled, I would say that my husband's godmother's suicide did not "fulfill" me in any way. I would have been more "fulfilled" (I really must put that word in scare quotes because I do not seek self-fulfillment out of life; it seems there are bigger and better things to aim for) if I had been able to care for her in her last weeks of life. I would have been "fulfilled" if I could have been allowed to show and give care to someone who desperately needed it. I would have loved to give her what she needed. But the legality of euthanasia prevented me from feeling the burden I wanted to feel. It prevented me and others from giving their love and care to a beloved friend and godmother.
"There is a reason to stay aware until the end, so that you can know Christ more deeply." I certainly agree with this and remember learning about love and suffering when Kara Tippets was dying of cancer. Years later, I was faced with my own cancer diagnosis and have experienced this love first hand. By choosing to end my life, I would be denying the love of my family and my community. I would miss out on all the beautiful, painful moments where love becomes real. My mom has spent many year with a chronic illness that could kill her anytime. But she holds out for the love of her kids and grandchildren. I have learned so much from her.