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What really matters at the end of life

Essential Considerations in Life's Final Moments

By Destiny Osaretin EbarePublished about a month ago 19 min read
What really matters at the end of life
Photo by Mohamed Nohassi on Unsplash

Yes, we all need a reason to wake up. For me it was simply 11,000 volts. I know you're too polite to ask, so I'll tell you. One night during my sophomore year of college, just back from Thanksgiving break, a couple of friends and I were goofing around and decided to board a stationary commuter train. We were just standing there with the wires hanging up. For some reason it seemed like a great idea to me at the time. We've done a lot more stupid things.

I climbed a ladder on my back, stood up, and electricity went into my arms and ran down my legs, and that was it. Can you believe that clock still works? It's pretty amazing! (Laughs) My dad wears it now as a sign of solidarity. That night marked the beginning of my formal relationship with death, my own mortality, and also my long stint as a patient. What a lovely word. It means someone who is suffering. I guess we are all patients. The American health care system is as dysfunctional as it is brilliant.

I'm now a hospice and palliative care physician, so I know both sides of care. And believe me, nearly everyone in health care has good intentions, I mean, really. But those of us who work there are also unwittingly agents of a system that doesn't serve us very well. Why? There's actually a very simple answer to this question, and it explains a lot: because medicine is designed around disease, not around people. Of course, that means poor design. And nowhere are the impacts of bad design more heartbreaking, and the opportunities of good design most compelling, than at the end of life, when everything is so distilled and concentrated.

There is no repetition. My goal today is to communicate across disciplines and to include design thinking in this larger discussion. This means bringing intentionality and creativity to the experience of death. We have a huge opportunity before us, as individuals and as a civil society, to address one of the few universal issues: we need to rethink and redesign how we die. So let's start at the end: For most people, the scariest thing about death is not dying, but the suffering that comes with it.

That's an important distinction. To understand this, it's very helpful to identify the suffering that is necessary as it is and that can be changed. Suffering is natural, an essential part of life, a part of all of life, and we are called to make room for it, to adapt, and to grow. It's very good to recognize that a power greater than us brings about proportionality, like the sizing of the universe.

For example, after I lost a limb, that loss became a fact, a fixed fact, an inescapable part of my life. And I learned that I could no more reject that fact than I could reject myself. It took me a while, but eventually. I learned that. Another beautiful thing about necessary suffering is that it is what connects the caregiver and the care recipient, the human beings. We finally realized that this is where healing happens. Yes, as we learned yesterday, compassion, in the truest sense of the word, was about sharing suffering. But on the system's side, so much suffering is unnecessary and invented.

It serves no good purpose. But the good news is that because this kind of suffering is fiction, we can change it. How we die is actually something we can control. Sensitizing the system to this fundamental distinction between necessary and unnecessary suffering gives us the first of three design notes for today. Ultimately, our role as caregivers and those we care for is to alleviate suffering, not increase it. True to the principles of palliative care, I serve in the role of both a thoughtful advocate and prescriber. A quick note: Palliative care is a critically important but under-understood field that includes, but is not limited to, end-of-life care. It is not exclusive to hospice.

It is simply about comfort and good living at every stage. So we need to realize that we don't have to be dead in the near future to benefit from palliative care. Now, let me introduce you to Frank, who I've been visiting for years. He has advanced prostate cancer and long-term HIV infection. We deal with the pain in his bones and the fatigue, but most of our time together is spent thinking out loud about his life, our life, really. Frank grieves this way, so he can continue to cope as the loss closes in on him, so he's ready to deal with the next moment. Loss and regret are two very different things.

Benjamin has always been an adventurer, he looks like he stepped out of a Norman Rockwell painting, and he didn't like regret. So it wasn't surprising when he came into the clinic one day and said he wanted to go rafting down the Colorado River. Was it a good idea? Some would have said no, considering all the risks to his safety and health. Many did, but he did it while he still could. It was an amazing, amazing journey; of ice-cold water, scorching dry heat, scorpions, snakes, wildlife roaring from the burning walls of the Grand Canyon, all in an amazing part of the world beyond our control. Benjamin's decision may have been dramatic, but it's exactly the decision many of us would make, if we only had the support to take the time to figure out what's best for us.

A lot of what we're talking about today is a shift in perspective. When I went back to college after my accident, I changed my major to art history. I thought that studying art would teach me something about how to see things, which is a very important lesson for a kid who can't really change what he sees. Perspective is a kind of alchemy that allows us as humans to blossom from our suffering. Flash forward: I now work at an amazing place called the Zen Hospice Project in San Francisco, where we have a little ritual that helps with this shift in perspective. When one of our residents dies, the funeral director comes, and we pause as we push the body through the yard to the gate. Anyone who wishes—fellow residents, family, nurses, volunteers, and now even the hearse driver—stands in silence while we tell a story or a song, or sprinkle flower petals on the body. It takes a few minutes.

It's a sweet, simple image of a farewell that brings grief with warmth, not revulsion. Compare this to a typical experience in a hospital. The hospital experience is very similar: rooms filled with floodlights, full of tubes and beeping machines and flashing lights that don't stop even after the patient has died. Cleaning crews fly in, the body is taken away, but it's as if the person never existed. Though well-intentioned, of course, in the name of sterility, hospitals tend to assault our senses, and the best we can hope for within these walls is deafness, anesthesia that is the literal opposite of aesthetics. I respect what hospitals can do.

I owe my life to them. But we ask too much of them. These are places of acute trauma and treatable illness. It's not a place to live and die. It's not designed for that. But just to be clear, I'm not abandoning the idea that our organizations can be more humane. Beauty is everywhere. I spent several months in a burn ward in St. Louis.

I had very good comprehensive care at Barnabas Hospital in Livingston, New Jersey, including excellent palliative care for pain. Then one night it started to snow outside. I remember the nurses complaining about having to drive through the snow. And even though my room had no windows, it was amazing to imagine the sticky snow coming down. The next day, one of the nurses smuggled in a snowman for me. She carried it into the station. I can't tell you how glad I was when I held it in my hands and the cool air dripped onto my flushed skin.

The wonder of it all, the fascination of watching it melt into water. In that moment, to me, just being a part of this planet in this universe mattered more than living or dying. This little snowman contained all the inspiration I needed to live and try to make it right when it wasn't. In the hospital, this is a stolen moment. In my years of work, I have met many people who are ready to die, ready to die.

Not because they have found ultimate peace or salvation, but because they are so disgusted that their lives have, in a word, been cut short or turned ugly. The number of people aging with chronic and terminal illnesses is already at record highs. And we are far from prepared or ready for this silver tsunami. We need a dynamic infrastructure that can handle such a demographic upheaval. Now is the time to create something new, something that matters. Because we must, we know we can. The alternative is simply unacceptable. And the key elements are well known: policies, education and training, systems, examples. We offer plenty of input for designers of all types to collaborate on.

For example, we know from research what matters most to people approaching death: comfort, a sense of relief and security for loved ones, existential peace, and a sense of wonder and spirituality. In the nearly 30 years that Zen Hospice has been in existence, we have learned so much more about the subtle details from our residents. After all, the little things aren't so little.

Take Janet. She has difficulty breathing every day because of ALS. And guess what? She wants to start smoking again -- French cigarettes, if you will -- not out of any self-destructive tendency, but because of the way her lungs fill up when she smokes. Priorities change. Or maybe Kate just wants to know that her dog, Austin, is at the foot of her bed, rubbing his cold nose against her dry skin instead of more chemotherapy coursing through her veins, and she's done with it. A moment of sensory and aesthetic satisfaction that is rewarded by simply being there.

After all, it is important to enjoy time with our bodies and senses, the entities that cause life and death. Perhaps the most moving room in the Zen Hospice guesthouse is the kitchen. This is a bit odd, given that many of the residents have little or no food to eat. But we recognize that we provide nourishment on multiple levels, including smell and symbolic levels. Seriously, with all the hard stuff going on under our roof, baking cookies is one of the most tried-and-true interventions we know. As long as we have a sense, even if it is only one, we at least have the ability to access something that makes us feel human and connected.

Imagine the impact this idea could have on millions of people living and dying with dementia: an innate sensory pleasure that expresses the ineffable, an impulse that allows us to stay in the present without needing the past or the future. So if eliminating unnecessary suffering from the system is our first design cue, then cultivating dignity through the senses, the body – the aesthetic realm – is design’s second cue. Which brings us straight to my third and final point for today: that we need to set our sights high, focus on well-being, and ensure that life, health and healthcare serve to make life more beautiful, not simply less miserable. And that’s where we need to start, and start, focusing on charity.

Here, the distinction between disease-centered and patient- or person-centered models of care becomes clear, where care becomes a creative, productive, and even playful act. "Play" may sound like a strange word, but it is one of our most advanced forms of adaptation. Think about how much effort it takes to become a human being.

The need for food gave birth to the kitchen. The need for protection led to architecture. The need to cover even fashion. And to follow the clock, we invented music. So what can we do about the fact that dying is a necessary part of life? By "play" we don't mean to treat death lightly or prescribe a particular way of dying. There is a mountain of sorrow that cannot be moved, and in some way we will all be on our knees. Rather, I ask that we create space, physical and psychological space for life to live out its end, so that aging and death can be a process not simply avoided, but continued until the end is multiplied. We cannot solve death. I think some of you are working on this. (Laughter.) In the meantime, we can -- (Laughter.) we can work towards this. A part of me died too early, and that can be said for everyone in some way.

I had to redesign my life around that fact, and let me tell you, it was liberating to realize that we can always find jolts of beauty or meaning in the life we ​​have left behind, like a snowball that melts in the perfect moment and leaves at the same time. If we love such moments deeply, then perhaps we can learn to live well not in spite of death, but because of it. Let death take us, not for a lack of imagination. Thank you. (Applause) Well, we all need a reason to wake up. For me it was simply 11,000 volts. I know you're too polite to ask, so I'll tell you.

One night during my sophomore year of college, just back from Thanksgiving break, a couple of friends and I were goofing around and decided to climb onto a stationary commuter train. We were just standing there with the wires hanging off of us. For some reason it seemed like a great idea to me at the time. We've probably done stupider things. I climbed the ladder on my back, stood up, and the current went into my arms and down my legs and that was it.

Can you believe that clock still works? It might take a lot! (Laughter) My father now wears it as a sign of solidarity. That night marked the beginning of my official relationship with death, my death, and also my long period as a patient. It's a lovely word. It means one who is suffering. I think we're all patients. The American healthcare system, for all its greatness, is more than broken. I currently experience both sides of healthcare as a hospice and palliative care physician.

And trust me, almost everyone in healthcare means well, I mean, really. But too often, those of us who work there are unwittingly complicit in a system that doesn't work for us. Why? Actually, there's a very simple answer to this question, and it explains a lot: Because medicine is designed around disease, not around people. Of course, that means it's poorly designed. And nowhere are the effects of a bad pregnancy more heartbreaking, and the possibilities of a good one more compelling, than at the end of life, where things are so distilled and concentrated, and there's no way to ever repeat them again.

My goal today is to collaborate across disciplines and to incorporate design thinking into this great debate. This means bringing intentionality and creativity to the experience of death. We have a tremendous opportunity before us, as individuals and as a civil society, to face one of the few universal problems: to rethink and redesign how we die. So let's start at the end: For most people, the scariest thing about death is not dying, but dying, suffering. That's an important distinction. To understand this, it's very helpful to identify the suffering that is necessary as it is and that can be changed. Suffering is natural, an essential part of life, a part of all of life, and we are called to make room for it, to adapt, and to grow. It's very good to recognize that a power greater than us brings about proportionality, like the sizing of the universe. For example, after I lost a limb, that loss became a fact, a fixed fact, an inescapable part of my life. And I learned that I could no more reject that fact than I could reject myself. It took me a while, but eventually.

I learned that. Another beautiful thing about necessary suffering is that it is what connects the caregiver and the care recipient, the human beings. We finally realized that this is where healing happens. Yes, as we learned yesterday, compassion, in the truest sense of the word, was about sharing suffering. But the system tells us that so much suffering is unnecessary and fabricated. It serves no good purpose. But the good news is that because this kind of suffering is fiction, we can change it. How we die is actually something we can control.

Sensitizing our systems to this fundamental difference between necessary and unnecessary suffering gives us the first of three design notes for the day. After all, our role as caregivers and those who care is to reduce suffering, not increase it. True to the principles of palliative care, I act not only as a prescriber but also as a reflective advocate of sorts. A quick note: Palliative care is a critically important but under-understood field that includes, but is not limited to, end-of-life care. It is not limited to hospice care. It's simply about well-being and living well at every stage. So you need to know that you don't have to be dying in the near future to benefit from palliative care. Now let me introduce you to Benjamin.

Now you know I've been visiting Frank for many years. He lives with aggressive prostate cancer and long-standing HIV infection. We treat his bone pain and fatigue, but most of our time together is spent thinking out loud about his life -- our lives, actually. That's how Frank grieves. This is how he processes loss as it befalls him, so he can cope with the next moment. Loss and regret are two very different things. Frank had always been an adventurer. He looked like something out of a Norman Rockwell painting, and he was not one to have regrets. So it was no surprise when he came into the clinic one day and said he wanted to go rafting down the Colorado River. Was it a good idea? Given all the risks to his safety and health, some would have said no.

Many did, but he dared to do it while he still could. It was a wonderful, wonderful journey. Ice cold water, scorching dry heat, scorpions, snakes, wildlife roaring from the burning walls of the Grand Canyon, all of these wonderful places in the world that were beyond our control. Frank's decision, perhaps a dramatic one, is exactly the kind of decision many of us would make if we only had the support to take the time to figure out what was best for us. A lot of what we talk about today is a change of perspective. When I went back to college after my accident, I changed my major to art history. I thought that studying art would teach me something about how to see things. This was a really important lesson for a boy who couldn't really change what he saw.

Perspective: It's this kind of alchemy that allows us as humans to blossom from pain. Time skip: I currently work at an amazing place called the Zen Hospice Project in San Francisco, where we have a little ritual that helps shift perspective. When one of our residents dies, the funeral director comes, and we pause as we push the body through the yard to the gate. Anyone who wishes - fellow residents, family, nurses, volunteers, and now even the hearse driver - tells a story or a song, or just stays silent while we sprinkle flower petals on the body.

It takes a few minutes. It's a sweet, simple image of a farewell that brings grief with warmth, not revulsion. Compare this to the typical hospital experience, which goes something like this: a room filled with floodlights, tubes, beeping machines, and flashing lights that don't stop even when the patient dies. Cleaning staff come flying in, the body is taken away, and it feels as if this person never existed. Though well-intentioned, of course, in the name of sterilization, hospitals tend to assault our senses, and the best we can hope for within these walls is deafness, anesthesia that is the literal opposite of aesthetics. I respect what hospitals can do. I'm alive because of them. But we ask too much of them. These are the sites of acute trauma and treatable illnesses.

It's not a place to live and die. It's not designed for that. But just to be clear, I'm not abandoning the idea that our organization can be more humane. Beauty is everywhere. I spent a few months in the burn unit at St. Barnabas Hospital in Livingston, New Jersey, where I received very good comprehensive care, including excellent palliative care for pain. And then one night, it started snowing outside. I remember the nurses complaining because I had to be driven through.

And although my room had no windows, it was nice to imagine coming down sticky. The next day, one of the nurses smuggled a snowman for me. She took him to the ward. I cannot tell you how happy I was when I held it in my hands and felt the cool air dripping onto my burning skin. What a miracle it was! How fascinated I was when I saw it melt into water. At that moment, belonging to this planet in the universe was more important to me than living or dying. That little snowman contained all the inspiration I needed to live and try to cope when I wasn't.

In the hospital, this is a stolen moment. Over the years, in my work, I have met many people who were dying and preparing to die, not because they had found ultimate peace or transcendence, but because they were deeply disgusted by the way their lives had, in a word, been cut short or disfigured. Already, more people than ever before are chronically and fatally ill and aging. And we are far from prepared or ready for this silver tsunami. We need infrastructure dynamic enough to manage such dramatic changes in our population. Now is the time to create something new, something that matters.

Because we must, we know we can. The alternative is simply unacceptable. And the key elements are well known: policies, education and training, systems, examples. We offer plenty of input for designers of all types to work with. For example, we know from research what is most important to people approaching death: comfort, feeling at ease, providing comfort to loved ones, existential peace, and a sense of wonder and spirituality. In the nearly 30 years that Zen Hospice has been in existence, we have learned a lot from our residents, down to the smallest details. After all, little things aren't so little after all. Take Janet.

She has ALS, which makes it harder for her to breathe every day. And guess what? She wants to start smoking again -- French cigarettes, if you will. Not out of any self-destructive tendencies, but to feel our lungs filling. Priorities shift. Or, as Kate puts it, she just wanted to know that her dog, Austin, was at the end of her bed, his cool nose against her dry skin, rather than more chemotherapy coursing through her veins. And that's what she does. The sensuous, aesthetic satisfaction that's rewarded by simply being, in the moment. So much of it comes down to loving our time with our senses, with our bodies, the very things that live and die. Perhaps the most moving room in the Zen Hospice Guest House is the kitchen. It's a bit odd, considering that many of the residents have little or no food.

But we know that we provide nourishment on multiple levels, including the smell and symbolic levels. Seriously, with all the hard stuff going on under our roof, baking cookies is one of the most proven interventions we know. As long as we have our senses, even if they are just one, we at least have the ability to access things that make us feel human and connected. Imagine the impact this idea could have on millions of people living and dying with dementia. The unique sensory joy of expressing the ineffable, the impulse that keeps you in the present without needing the past or future.

So if eliminating unnecessary suffering from the system is our first design cue, cultivating dignity through the senses, the body, that is, the aesthetic realm, is our second design cue. This brings us immediately to the third and last point for today, which is that we need to set our sights high and focus on well-being, so that life, health and healthcare can make life not only less horrible, but more beautiful, and we need to be charitable. This directly relates to the distinction between disease-centered and patient-centered or person-centered models of care, where caring can be a creative, productive, even playful act.

"Play" may sound like a strange word, but it's a very important one. But it is also one of our most advanced forms of adaptation. Think of all the hard work it takes to become human. The need for food gave rise to the kitchen. The need for shelter gave rise to architecture. The need for protection gave rise to fashion. And to keep up with the clock, we invented music. So what do we make of this fact, since dying is a necessary part of life? By "playing," I don't mean to downplay dying or prescribe a particular way to die. There is an unmovable mountain of sorrow to which we will all kneel in some way. Rather, I ask us to create a space - a physical and psychological space - for life to continue to be lived out to the end, so that aging and death are not simply slipped out of the way, but a process that continues until the end. We can't solve death.

I'm sure some of you are grappling with this. (Laughter.) In the meantime, we can -- (Laughter.) we can prepare for this. Part of me died early, and that can be said for everyone in some way. I had to redesign my life around that fact, and I'll tell you, it was liberating to realize that you can always find jolts of beauty or meaning in the life that's left behind, like a snowman that only has perfect moments left and melts at the same time. If we love those moments deeply, perhaps we can learn to live well not in spite of death, but because of it. Let death take us, not for a lack of imagination. Thank you.

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