'Dying doesn't have to be so hard': How providers can weave more humanity into end-of-life care

If B.J. Miller, MD, had not nearly died in 1990, he never would have gone to medical school.

As a sophomore at Princeton (N.J.) University, Dr. Miller lost both legs and his left arm after he climbed a parked commuter train, and an electrical current of 11,000 volts shot through his body. For weeks, physicians thought he was close to death. But he survived, returned to Princeton and, newly inspired by the care he received for his injuries, eventually attended medical school.

As a palliative care physician and former art history major, Dr. Miller advocates for making end-of-life care more human and less medicalized. A speech he gave on the subject was one of the most popular Ted talks in 2015. 

Shoshana Berger, meanwhile, was three months into grieving her father’s death when she met Dr. Miller. As the editorial director for the design company Ideo, she was part of a team hired to rebrand the Zen Hospice Project, where Dr. Miller previously served as executive director. Dr. Miller's human-centered approach to palliative care "blew open my conception of what aging and dying could look like," Ms. Berger said in an interview with Becker's.

The two collaborated to write A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death, which was released in July. The book draws on both authors' life experiences to offer advice on facing death and caring for the dying.

Here, Dr. Miller and Ms. Berger discuss what clinicians and hospitals can learn from their book, the role of design in healthcare and how clinicians can build closer relationships with patients.

Editor's note: The following responses were lightly edited for length and clarity.

Question: What kind of message are you hoping to convey to readers with the book?

Dr. B.J. Miller: First, dying doesn't have to be so hard. There will be plenty of room for creative and joyful moments, and for beauty, too. Turning your attention to this subject will reward you in many ways. Practically speaking, the book will compel you to do your paperwork and prepare, but it will also help you come to terms with death. Acquiring a sense of reality that includes your own demise is a very enriching process. It has a way of helping you live better while you're alive. This book is not just about making death seem less miserable; it's about making your life more remarkable along the way.

Shoshana Berger: We also wanted the book to give people a feeling of not being alone. I remember feeling quite isolated as a caregiver. It can be such thankless, hard work, and often you can feel like it's only happening to you. I'm hoping that sense of isolation can be somewhat allayed by this book because we tell a lot of stories about other people who are going through it. Hopefully, the book will bring readers a sense they can reach out to other people. 

Q: Dr. Miller, this book is primarily targeted at patients and the loved ones caring for them. Do you think providers can learn something from the book, as well?

BJM: Big yes! Because the subject is hard to wrap your head around, it's often simplified based on the lens you're seeing it through. That's true whether you're doing hospice and palliative care work every day, or whether you're a chaplain, journalist or designer. In the medical world, this huge, beautiful, amazing, horrible topic often gets reduced to symptom management and maybe a conversation about grief or God. There's a ton in this book that I didn't know as a clinician, such as the costs involved at the end of life or closing down a person's digital accounts. Palliative care's holistic approach, which involves an interdisciplinary team of physicians, nurses, social workers and chaplains, represents an enormous advance in the healthcare world. But this holistic approach probably remains more of an aspiration than a reality. The subject is enormous, and there are many ways to see it that didn't come up in my training.

Q: Dr. Miller, you said in your TED talk that we're "asking too much" of hospitals, which are "no place to live and die." With this in mind, what do you think we can ask of hospitals? Do they have a role to play in end-of-life care?

BJM: The hospital setting is more stressed than it deserves to be or is designed to be. Hospitals are the pinnacle of acute care, which is really meant for urgent issues that can be cured, or at least slowed down. And there's a disconnect, because we're increasingly dying from chronic illness, not acute illness. Dying is really not an emergency. When you're dying, there's not much to be done anymore. As we become a more secular society, I think the hospital emergency room has become the modern church: It's where people go for all their problems. But it's unfair to ask that of our acute care hospitals. 

I don't want to let hospitals off the hook, of course, because some people are still going to end up dying in hospitals. I do think more can be done. We could train staff to better accompany people through the transition from acute care to comfort care, for example. We could also improve hospital design. Hospitals are designed to move people through them; they're not designed to be pleasant places to hang out. I would love to see a new hospital that has places for families to be during loved ones' final hours, or that gives patients better access to natural light and a window, among other things. Better design could make hospitals places where patients could still feel inspired and wouldn't mind having their final moments, if need be. 

Q: Ms. Berger, do you think design could play a role in other areas of healthcare? Several problems in healthcare seem to be the result of poor design. 

SB: There are a lot of great stories about design-minded people in hospitals. The designer Michael Graves famously said, "I can't die in here. It's too ugly." And Ideo is seeing healthcare concerns come to the table more and more. There are touch points all through the hospital experience that could use a redesign, from the moment you enter the waiting room in an emergency department, to how nurses and staff engage with patients, to the actual design of the room. It's not just an enormous challenge, but also an enormous and untapped opportunity. The designer Yoko Sen, for example, has a whole point of view around the toxicity of noise in hospitals. She's trying to create noise-canceling music that will wash out the cacophony of hospital alarms with more palliative sounds, since alarms can cause patients stress and increase their heart rates.

Q: Dr. Miller, your colleagues told The New York Times you have a talent for establishing warm and trusting relationships with patients, even though you often talk with them about uncomfortable subjects. Can this kind of rapport with patients be taught?

BJM: Yes, so much of this can be trained and learned. Each of us has our own inborn strengths and weaknesses, but a lot of that is malleable. If I were to craft a training program to help clinicians build a rapport with patients, it would come down to two things: first, cultivating the skill of not running away from things you can't fix. I don't know any patients who are angry that their physician didn't somehow beat God and work miracles. But I do know plenty of patients who are angry at their physician for abandoning them, for not returning a phone call or not acting like a decent human being during difficult moments. 

A second thing I would transmit is to bring your own experience into your work and reveal yourself to your patients. I have an obvious source of suffering because if you take one look at my body you know I've been through some stuff. I can get to an allegiance with my patients more quickly than some of my colleagues because of that, perhaps. But young clinicians certainly don't need to amputate something to learn about this. My suffering is just a little more obvious. Everyone has some example of loss in their life or some form of wound. We're all lost, confused, wandering souls at times. We could all wear our lives on our sleeves a little bit more than we do, which can help us connect more deeply with our patients. 

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