By Leilani Graham, End Well ePatient
I was fortunate enough to attend a recent discussion hosted by End Well Founder Shoshana Ungerleider, MD for Shoshana Berger and BJ Miller, MD’s new book “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.”
I watched the attendees file in: doctors with their hospital badges still attached to their skirts and blazers; couples in their senior years, dressed to the nines in bright, warm colors; sleek, silk adorned women in their thirties removing their headphones to greet each other. The attendees gathered in the vast event space on the top floor of Salesforce East — filled with tropical perennials encased in wooden planter boxes that blended quite seamlessly into the sloped wood floor. Each took a book, then a seat, gazing out of the floor-to-ceiling windows to near 360 views of San Francisco.
This was the perfect place to sit for an hour and learn about how to die.
Last year, Leilani shared her patient story with us. Click here to learn more about her transplant experience.
Many of the attendees worked in the field: from death doulas to hospice nurses, palliative care doctors to ethics lawyers. Some of those gathered embodied the heart of the subject, self-identifying as living with terminal cancer. The others were good-death enthusiasts: those who believe in the power of designing and embracing death as easily as society embraces birth.
While you might expect the atmosphere for such a dark and sorrowful subject to be somber, the room instead was jovial. Old friends hugged each other tightly, their laughs echoing around the vast glass room. Many remarked how lucky they felt to be here and to see their influences speak in such an intimate setting.
A question and answer session followed the conversation. The room maintained its warmth, but lost some of its humor. The vulnerability was palpable, as was the fear that arose out of each question asked by the audience.
“How do I give this book to a friend who has just been diagnosed with a terminal illness?”
“How do I talk to my children about death and choosing what they would want for themselves?”
Then one half of a couple in their later years stood up. “I read everything I can about death. I have studied it. I try to face the reality of it, as I know that the older I get I may be closer to it. And I don’t think I am afraid of death itself. But I love my life and I am so afraid of losing it.” The room audibly hummed and sighed in agreement, acknowledging a common feeling amongst the gathered both self-made and academic researchers at the top of their field.
I felt my eyes glaze over as my mind drifted on the question: a not unfamiliar feeling for me at events like these. For as much as I have studied death, experienced death — and even come back from death myself — I, too, am afraid of losing my life.
It is quite a strange feeling: To sit in a room, talking about death with many older adults, knowing full well that I likely will not live to see those years. I have survived many brushes with death: four cardiac arrests, several bradycardic episodes, severe cardiac tamponade, ECMO, and a code in ICU — to name a few. I am not afraid to die. I would rather it not be prolonged or painful. I would prefer to have it happen peacefully, outside of the hospital, and at an old age. But we can’t always get what we want. And sometimes realizing that earlier leads to a better chance of accepting what we cannot have.
The average survival for transplanted hearts is 12 years. I know many who have lived beyond that average — some with the same transplanted heart. I know others whose donated hearts have not survived past one year. The problem with knowing these statistics is that it makes living until old age a relatively impossible concept. Even if we add 12, and 12, and 12 again (triple heart transplant are very rare, but increasing), from the time of my transplant (age 24) I only get to be 60, about 15 years or so fewer than the woman who asked the question.
The blessing is that I know this. And yes, I have heard, many times, that “technology will continue to improve!” or “you may never even need a second transplant,” and that is perhaps where “impossible” can be tweaked to “improbable” inside my head. I appreciate the human instinct to comfort, instill hope, or even self-soothe when I so bluntly discuss my mortality with my unsuspecting audience. I understand, personally, what it is like to try and forget or ignore your own mortality.
But the truth is, my life could have ended at diagnosis: my first cardiac arrest. It didn’t. I had 10 bonus years with my heart and, thus far, I have had 3 bonus years with a borrowed one.
The woman’s question is no less valid, scary, or painful to me. In many ways it is a combination of all of those things because I know I probably will not be alive to experience those feelings at her same age. Yet maybe a small remedy for the fear the brave woman voiced — the fear we all face— exists within our conceptual reframing of the quantification of time. That is, instead of counting down to the end of our lives, perhaps we should be counting up.
Leilani Graham is the Director of Patient Advocacy at Clara Health. She is a four time cardiac arrest and four-time open-heart surgery survivor, former Implanted Cardioverter Defibrillator owner, Heart Transplant Recipient, and current Pacemaker-user (yep, it’s a mouthful!). Leilani is also an ex-Googler, Stanford Medicine X ePatient Faculty Member, Board Member on the Founding PFAC at Stanford Medicine, and an Advisor to the End Well Foundation.