My mother had ALS, and specifically chose to commit assisted suicide rather than accept any mechanical interventions. As she faced progressive paralysis of her whole body she saw a future where it...
My mother had ALS, and specifically chose to commit assisted suicide rather than accept any mechanical interventions. As she faced progressive paralysis of her whole body she saw a future where it was possible to have machines perform near every organ's function. Machines to pump her blood and maintain airflow to her lung tissue. To filter her blood and deliver nutrition to her gut. But the life she foresaw existing at the center of a web of machinery was one that was antithetical to the life she had lived before she got sick. She danced with her girlfriend and did home maintenance on the cabin she maintained in the woods. She counseled people in her NA chapter. All of those machines would have meant that her consciousness could have persisted a while longer, but they wouldn't have maintained the life she'd had. That life was gone when she could no longer walk or talk or swing a hammer.
A machine can keep you from dying, but it can't necessarily make your life worth living. At some point you want to be able to let go.
If you ask me how I think about my own dying in our high-tech world, I tell myself this:
Stay out of the hospital if possible.
Avoid new devices, interventions, and procedures if possible.
Spend your remaining days at home if possible.
Nurture relationships with those you love.
I work in one of the most technologically sophisticated hospitals in the world; I am not anti-tech or anti-hospital. But when it comes to dying, my preference is for low-tech and at home. This assumes, of course, that either I’m very old, or I have a medical condition or set of problems that suggest death is relatively imminent. But this raises two related questions: First, how do we know how old is old enough to forgo life-sustaining therapies? And second, how do we know when death is imminent?
Taking a step back, it’s helpful to think about how people typically die in the West. The bioethicist Joanne Lynn observes that Americans usually die in one of three ways: they are relatively healthy until a previously treated disease such as cancer comes roaring back; or they have a chronic disease such as heart failure that relapses and remits, with successive relapses becoming more and more frequent until the person dies of the disease; or they live a long life and die of the accumulated assaults and annoyances of old age. (A small minority dies by accident or violence, but such deaths can’t usually be anticipated.)
In thinking about what it means to live and die well in each of these instances, Lynn might advise that those in the first category consider during their period of remission enrolling in hospice services when their cancer comes back. The second group with progressive chronic disease should develop a contingency plan for when disease progression becomes overwhelming. And the third group needs all hands on deck – including family members and community support – to manage the challenges of protracted frailty. This is the bird’s-eye view. The question then becomes how we translate this knowledge to actual decisions at the end of life.
My mother had ALS, and specifically chose to commit assisted suicide rather than accept any mechanical interventions. As she faced progressive paralysis of her whole body she saw a future where it was possible to have machines perform near every organ's function. Machines to pump her blood and maintain airflow to her lung tissue. To filter her blood and deliver nutrition to her gut. But the life she foresaw existing at the center of a web of machinery was one that was antithetical to the life she had lived before she got sick. She danced with her girlfriend and did home maintenance on the cabin she maintained in the woods. She counseled people in her NA chapter. All of those machines would have meant that her consciousness could have persisted a while longer, but they wouldn't have maintained the life she'd had. That life was gone when she could no longer walk or talk or swing a hammer.
A machine can keep you from dying, but it can't necessarily make your life worth living. At some point you want to be able to let go.
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