Guest Post: Youth, Illness, and Advance Care Directives

This piece is a guest-written essay by Leilani Graham, a Palo Alto native and graduate of Henry M. Gunn High School. Leilani is now a San Francisco-based writer, speaker, and patient advocate. She is also a four-time cardiac arrest and four-time open-heart surgery survivor. Read on to learn more about her patient experience. (She originally wrote this piece for her blog, and an edited version recently appeared on the End Well Project.)

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Why a Temporary Advance Directive Turned Out to be the Most Important Page in My Medical Record
“It had never occurred to me that I could actually die during the surgery. I know that I never again want to hold anyone else responsible for making care decisions on my behalf in such a difficult situation.”

When I was given the consent form for my heart transplant, I was asked if I had an advance directive. I sat in a hospital bed in a holding room, moments away from being wheeled into the surgery that would forever change my life. I pointed at my mother, who stood next to me. “She knows what I want,” I answered, grinning at my her. “Donate it all,” I said, gesturing at my body, “just nothing to for-profit companies.” I then signed my name on the temporary advance directive and promptly forgot all about it.

I was so naive. To think that the surgery itself would not result in my death. To think I was not sick enough to need any sort of document stating my wishes in the event of my death.

I was 24 years old, and I was naive to the practice of actively dying.

I don’t blame myself for my naivety. Despite hours of teaching by the pre-transplant nursing teams, late nights spent Googling statistical outcomes of transplants, and even chatting with recipients of transplanted organs, it had never occurred to me that I could actually die during the surgery. I wasn’t bedridden or on any intravenous or mechanical support. An advanced declaration of my wishes felt, well, “advanced.” As in, at the end of my life in the far, distant future.

So, when I woke up from my transplant three days later, with no pulse, and a machine oxygenating my blood outside of my body, the word “temporary” felt like a slap in the face. The donated heart had failed shortly after being transplanted, requiring CPR in the ICU, two additional emergency open-heart surgeries, and extracorporeal life support?—?none of which I had explicitly pre-consented to. How could I have? This precise sequence of events was far from predictable. Furthermore, complications of this nature occur in only 5% of heart transplants, and I was “young and otherwise healthy.”

Leilani Graham, pictured here on extracorporeal membrane oxygenation (ECMO)

When things had begun to look dire after I crashed, my parents were the ones who had to decide whether I would prefer to die or be kept alive. To them, it wasn’t a choice: Do what you have to to save her life. I cannot imagine having chosen any differently. Yet, how terrifying and how awful it must have been for my loved ones to make such a decision.

Still worse to consider: What if the choice had been less obvious or my parents thought that their decision might not have aligned with my wishes? Had the donor heart not recovered, had the other organs failed: Would I have wanted to remain intubated? Would I have preferred to die, as I had lived?—?outside the walls of the hospital? Would I have even had the option?

These are the questions we have not discussed in my family. Throughout my life, my parents had wills, life insurance, and open communication, but we’ve never discussed the “what ifs” of those fateful few days when I hovered between improving and dying. We never bring up the possibility that the choice they had been asked to make could have been so much less obvious.

The end of life isn’t always so obvious, unlike the start of it. The anticipation we feel knowing the population is about to grow by a factor of one seems much more certain than knowing the precise moment in which we will experience one loss.

Even though my family, more than many I know, take the time to plan for what they want at the end of life, we still aren’t sure how to cope with deciding when exactly that end might be.

Despite my experiences, I still struggle with what to put in my advance directive. Should I specify “all necessary measures” except the ones in which my quality of life will be compromised? How much compromise would I be OK with? I don’t have an answer to that, yet, but I know that I never again want to hold anyone else responsible for making care decisions on my behalf in such a difficult situation— even if it is only temporary.

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In the time since I composed this piece, the inimitable Claire Wineland has died. Another “young and otherwise healthy” transplant candidate, I can’t help but think of Claire as I reflect on my own experience.

Photo of Claire Wineland and her mother via Claire Wineland, Love, Songs, and Updates Page on Facebook

Claire was an incredible source of inspiration and guidance for me in the practice of being chronically and terminally ill. On social media, she discussed her own mortality and her advance care wishes, should she no longer be able to choose the path forward for herself. Though considered a strong candidate for a successful double lung transplant, Claire suffered a rare and catastrophic stroke merely a day after receiving her new lungs. Claire’s mother took to her daughter’s social media accounts and expressed unimaginable humility in the face of such suffering, stating that she only hoped she was making decisions for Claire that Claire herself would have wanted. Claire, an organ donor herself, passed away one week after transplant, surrounded by her loved ones.

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Leilani Graham is a four-time cardiac arrest and four-time open-heart surgery survivor, ECMO survivor, former ICD-owner, heart transplant recipient, and current pacemaker-user. She is also a healthcare UX consultant, techie, writer, and celebrated performer. Reflections on her patient experience can be found at http://www.leilanirgraham.com.

You can also follow along with Leilani’s journey at @leilanirgraham.