Death Philosophy, and Why It Matters to Design
My dad’s mom had Parkinson’s Disease. She was diagnosed when my dad was still in high school, and she lived for almost two decades as the disease slowly progressed, affecting her brain as well as her body. Parkinson’s is a degenerative disease that affects motor ability, and often claims its victims indirectly through related problems such as difficulty swallowing food, which can lead to pneumonia from having food/water in the lungs. Parkinson’s is often thought to be a slow, painful process of becoming trapped in your body (although mental ability can also deteriorate), and is one of the most feared diagnoses because of its incredibly slow and ability-sapping progression.
My grandma did not want to live through the end of her Parkinson’s. In fact, she asked for an end to her suffering before things got too bad. However, her request for compassionate euthanasia, or doctor-assisted death, was unable to be honored. It was (until very recently) not legal in the state of California; instead of being able to make a living will and a compassionate death plan with the full consent and understanding of her family and care team, my grandma had to ask her son to kill her. Unsurprisingly, he found himself unable to fulfill this wish, both emotionally and from lack of opportunity once his mom was in a care home.
One of the barriers to fulfilling this request around her death was a lack of specificity. In a slow-moving disease, what time is the right time? After they lose all mental ability? When less than half of the days are good days? When they’re living in constant suffering? And how can you measuring any of these benchmarks?
In making decisions for others about ending their lives, we fear helping them before they’re ready. As people approach death, they sometimes find that certain benchmarks are more tolerable than they had imagined; but the person in your care may not be able to communicate to you any longer, so you have no way to know if they’ve reached any abstract benchmarks they set, or if they’ve changed their mind as things progressed.
My dad’s dad, my grandpa, died at the age of 99 this summer. In many ways, his death was ideal. He was in excellent health until he tripped and fell outside — he was rushed to the hospital, treated for a brain bleed (likely the oldest person ever to undergo — and survive! — brain surgery), and passed every cognitive ability test after waking up from surgery. However, he got an infection in the hospital and was never able to fully recover. After a few weeks of ups and downs during which he reported being relatively comfortable and seemed in decent spirits, and during which we heard from doctors both that he was going to be able to go home in the next two days, and that there was absolutely no chance of setting a date for him to leave the hospital, he felt very well for a few days and then promptly died.
My dad made the difficult decision of insisting on brain surgery, despite a statistically high chance that if he even made it through surgery, his cognitive ability and quality of life afterward would likely be low. Luckily a prolonged state of debilitation was avoided. My step-grandma at one point asked, during his post-operative illness in the hospital, “how long are we going to go on with this?” Although my grandpa was doing relatively well, could sit and talk and eat, and was on antibiotics, he didn’t seem to be getting better. No one wanted to painfully prolong his 99 years a few months just to get him to 100. But to deny someone antibiotics? That didn’t seem like something even worth considering. It was entirely unclear if he would recover and go on to live for several more years, although it increasingly seemed likely that at some point his condition would worsen and he would have to go on life support; at that point, a definitive choice would have to be made about if and how long to prolong his life.
Luckily for our family, since no frank discussions were had about when to call it quits, in his typical concise and obsessively neat fashion, my grandpa died with little fuss and no life support.
My grandpa’s death avoided the emotional distress that defined my grandma’s last decades. Yet if death, and people’s wishes around dying, were openly discussed with both families and doctors, it would open up so many more options to us. We would be able to discuss our options not for prolonging our lives, but for getting the most out of our remaining time. And we would have thought about what we want to get out of our lives; we would have spent time considering what is important to us.
For my grandma, this could have meant open discussions about when she wanted to die. They could have set a date, or a very specific marker: not being able to pass a swallow test, for example. As she was able to still communicate, she and her family could have regularly checked in and updated her wishes, if necessary. And a series of progressive phases could have been agreed upon for the time when she wasn’t able to communicate with them. This would have given everyone involved a sense of peace that they knew what she wanted and why, and that they would be able to honor her wishes, and provide her a loving and comfortable end to her life.
I for one have come to the conclusion that my dad made the wrong call about sending my grandpa into brain surgery. Although he amazingly made it through the procedure, the risk that it took away the possibility of a dignified and peaceful death was very high. Medical care should approach treatment from a position that acknowledges death is inevitable, and seeks not only to preserve health, but to promote a good death. This means balancing the possible rewards of aggressive treatments with the likelihood of the treatment leading to a much worse death. For my grandfather, although I don’t know the statistics, the likelihood of ending up mentally or physically limited and dependent for the remainder of his life was high, if he survived at all. To me, it doesn’t seem it was worth the risk of turning him into a veritable vegetable, especially at the age of 99.
By now, it’s a trope of dying that “we don’t realize what really matters until it’s too late.” Or until we’re faced with our death. And yet almost all of us have had people in our lives who could have told us what mattered to them as they confronted their own death. Imagine if we had been hearing since we were young, from various aging friends and relatives, that spending time with family is more important than money. That the things they remember most fondly are old friendships, or travel, or dedicating their life to a cause. Imagine if we had these messages to counteract culturally pervasive ideas about the importance of money, of always working for the future and not for the present, and of valuing possessions over relationships.
What do you fear about getting old and dying? If you’re like most people, you fear being lonely, being in pain, being in an ugly care facility or a sterile unhappy hospital where your family doesn’t visit you enough. But if we could accept and welcome death as a natural and inevitable end to life, and welcome good deaths, we could design a much better world for the aging and dying. We wouldn’t have to fear dying in hospitals, if it became more normalized to bring your loved ones home for their final days. We could design beautiful hospice facilities, rather than keeping the terminally ill in hospitals that are built for fighting disease, not providing comfort.
And we could allow people to make their own decisions about when they feel ready to move on from life, to death, rather than having to wait out the last hours, days, or years in a level of discomfort or pain that’s simply not necessary.
So much of this topic gets to the heart of human interactions, and how we view ourselves in the world. Understanding what holds us back in conversations about our deaths, and therefore our lives, will help get to a deep understanding of what people care about, what they fear, and what they want for themselves. I don’t believe that we, as human beings, can truly practice empathy without connecting to what it means to live, and eventually to die. The more we fear the topic of death, the more we must avoid the topic of our needs and wants in life, because of how closely tied they are. And the more we detach from our basic human desires, the less emotional depth we can plumb within ourselves and the less empathy we can experience.
Not only does this topic drive at human needs, it’s an excellent study of how social norms proliferate. This idea of how we change people’s habits, and ways of thinking, is crucial for designers who want to address the big problems of the future — climate change, war, democratic participation, or resource waste, for example.
By studying cultural changes around death, dying, and the industries associated with it, we can also practice systems thinking and systems design. Change something small, like building the first crematory in an area, and fifty years later you see a massive shift in burial practices. Understanding these enormous systems is the key to being able to create shifts within them.
Imagine a world where we regularly converse about what is important to us, what truly matters, and what we seek to get out of our interactions with people, places, and things. We would have a wonderfully robust sense of what brings us joy, and what fulfills us in the long-run. Perhaps we would be more resilient as a society against instant-gratification machines like smartphones and social media, that are designed to act like drugs.
In a world where we can communicate more openly about life and death, we can design for the world we want to live in, not only for the world that people pay cash for. In a world where we don’t fear all signs of aging as a premonition of our eventual death, we would have much richer intergenerational interactions and points of view. More frequent access to historical context alone could revolutionize design, as we become more attuned to an ecosystem view of the world and how all things connect and inform each other. We would likely improve our ability to design in ways to promote systems and vitalities that support good lives — caring for others and the planet.
Acknowledging the role that death plays in our life will help us live in a long-term view, and give us greater wisdom and perspective about our world, and therefore about design choices we make.
