Part I here
The discussion about the right to die when “one’s life is complete” often revolves around ethical principles of bodily autonomy and self-determination. Those are worthy grounds, but I’ve found that they limit the scope of the debate. When someone would say “It’s my body, I have a right to do with it what I want,” it’s hard to counter while within the classically liberal, Western framework that recognize individual self-determination as an important political virtue.
But while is is important to acknowledge how this change to euthanasia law does move the conversation from diagnostic questions to philosophical-ethical grounds, this kind of reasoning relies on an abstracted vision, distant from the reality of human aging within a specific society. It creates an illusion of a person quietly staring back at their accomplishments, comfortable that their life’s work is complete. I talked with Anne Goossensen, a quality of care researcher who focuses on non-traditional measures of medical success.1 She co-wrote a couple of phenomenological studies on the lived experience of people considering self-euthanasia. Contrary to the grace and dignity implied with “a completed life,” many had immediate, tangible concerns about their future.
Professor Goossensen emphasized “a fear of losing control.” She found examples like a man on a walk with his daughter, watching birds, who suddenly suffers from fecal incontinence or a woman whose meaning in retirement came from experiencing and creating art who goes blind. The inevitable damages of old age destroy familiar agency, in turn taking from people the structures and activities that had offered them meaning. By choosing self-euthanasia, the people feel they are able to assert some control of their lives. Professor Goossensen noted this need for control is particular to the modern age. In the past, religion assured people that the transcendent world held the ultimate agency, and that to assume authority over your life was not just absurd, but nearly blasphemous.2 But now even the religious people she’s interviewed believe that the authority to “end their suffering” ultimately lies in their individual desires, even if they acknowledge God’s ultimate position.
She takes it one step further: “We have a problem with ‘broken’ things.” The “we” in this case is modern, Western society. We desire youth and flawlessness, smooth skin and limber limbs. We treat the loss of these as indignities. The idea that one’s life loses its value and purpose because of this loss is deeply ingrained in our society. Atul Gawande’s Being Mortal digs into this, noting how our modern, western societies are an inversion of the historical trend, worshiping our youth over our elders. Our sense of what makes our lives valuable is tied to our role in the economy and our capacity for change, traits tightly linked to youth. A failing body is considered less worthwhile, and this sense, implicit or explicit, is internalized and manifests in a desire to control the end of one’s life on one’s own terms.
It also ties to the other recurring theme among those considering euthanasia: a deep fear of loneliness and of becoming a burden on one’s children. The social networks of work fade, a spouse dies, and increasing physical limitations mean that the elderly end up relying on their children, losing their independence and experiencing the shame of having their dependents become providers.
In considering elderly loneliness and dependence, it helps to think about the shifts in Dutch medical care. I got a run-down from Dick Winterkorn, a retired GP originally from upstate New York who moved to the Netherlands after marrying a Dutch physician. We met in his home, where we grabbed coffee in his kitchen. As we sat down to chat, another physician, a nurse, and a secretary walked in for their mid-morning break. Dick and his wife’s home is based on the old model Dutch medicine, where the family doctor’s home doubled as physician’s office. Walk in through one door and you find a cozy home, early 20th century Dutch home, through another, an examining table and a case exhibiting old medical equipment. Patients could call at all hours of the night, and the doctor’s work was essentially constant. It was Dick’s wife’s grandfather’s, but once Dick’s wife retires, they’re planning to sell the place. Most modern doctors have a separate office. Rather than being on-call at all hours, doctors work regular shifts through a call-center, taking all calls for a geographic area for a weekend rather than their own patients at any time of the day. Dick says he works harder during those shifts, but at least he knows he’ll get to sleep when he’s off. And if someone needs immediate medical attention, they can go to the hospital and get what they need.
There’s big advantages to this system. There’s evidence that suggests this approach reduces costs and improves patient outcomes, and, in the Netherlands at least, they’ve retained the valuable GP relationship. But it does suggest a shift to medicine as a more compartmentalized relationship. Interactions with the medical world are either check-ups and fixes for immediate challenges, or intensive long term treatments for complex problems. The continuum for medical care has shrunk.
But while the shift in primary care is all-in-all a good care, the same general approach has problematic public policy implications for residential geriatric care. The Netherlands had a network of “old age homes,” akin to assisted living facilities in the United States, that offered a compromise between solo apartments and nursing homes. They provided the sort of limited care designed to allow the elderly to retain their independence, with the added benefit of a built in social space for people at similar place in their life. But they weren’t considered cost effective and are slowly shutting down, leaving the elderly with the choice between a total institution like a nursing home, or finding some way to continue living independently. The implicit assumption is that the family will step in.3 So the public policy approach assumes that the elderly have a family with the resources, time and interest in providing for the elderly member, and moreover, that the psychological costs for the elderly are worth it.
The point being that the social isolation and stigmatization the elderly experience is both socially constituted and complicates the ethical assumption of a autonomous self deciding to rationally end one’s life.4 To argue the state should address these problems through offering a right to die seems to me to rest on an ageist assumptions of human value. Without disregarding the pain of losing capacity, and a legitimate desire to control one’s body, it seems dangerous to address the challenges of aging through state legitimization of the complete life, without an incredibly careful consideration of the way society shape’s the elderly’s decisions.
But hey, that’s my opinion, and it’s not my country or my culture. And the Dutch seem to have an impressive ability to discuss these challenges fully and complexly. Euthanasia as it currently stands took a decade of national conversation. This one is just getting started.
1. I hope to write more on her work later. She observes the quality of the relationships between carers and the cared for, instead of the usual array of variables about the patient’s body. It’s a fascinating way to rethink what matters in medical care, but this is already a little too scattered to dig into here. ↩
2. Jenny van der Steen also observes that this is a particularly Dutch tendency. In a country where much of the land is below sea level, control and tidiness are seminal virtues. A friend and I walked around the small Dutch town of Edam and remarked on the absurd level of aesthetic detail visible in each living room. They looked like the fake living rooms in the furniture sections of upscale department stores. If you ever visit Edam, look at the light fixtures. As far as my spaces are concerned, the highest complement given to my dorm rooms is that they “look lived in.” It’s amazing the mess I can make in a hostel dorm room in one night with my little backpack. ↩
3. Atul Gawande, again, has a compelling analysis of the shift away from the familial model in the Western world, comparing the experience of an elderly person in the States to that of his grandfather in India, a man whose position as family patriarch meant that the entire family network supported him in maintaining independence. By contrast, in the more modestly sized American household, where children scattered to other places for careers and spouses, the burden of caring for the parents tended to fall to the eldest daughter. Lots of assumptions about the lives of women, like acting as housewives or being more geographically tied to home, no longer apply. He does a better job describing the whole thing, so uh….here. ↩
4. It is also to dodge the important question of who we live for. Professor Goossensen bring in examples of spouses who want to die together, but one is ready before the other, or the wounds felt by children and grandchildren who find their relationship with the parents or grandparent’s meaningful, only to have that meaning rejected in that relation’s decision to die. Inside of the messy reality of these familial network, this rational actor model fails to describe reality. ↩