It Takes a Village

I'll never forget the day I lost my wife, twenty five years ago.

I had spent the day sightseeing with relatives visiting from out of town, and on the drive back felt my pager buzz. It was the office calling. I called back expecting a list of updates and to-do's, and maybe a memo that needed my sign-off; instead, my assistant, voice shaking, told me that my wife Donna Lee had been in a terrible car crash, and that I needed to head straight to the hospital.

A nurse greeted me as I walked into the ER. Working my career in healthcare, including in Senior positions in the Federal Government, I've walked into countless hospitals before, usually addressed as Dr. Moritsugu, Sir, or, later in my career, Surgeon General; that day, I was just Ken.

She escorted me to a small, private room, offered me coffee, and tried to brace me for what I was about to hear. She was picking her words carefully, but it didn't look good. Next came a trauma surgeon--they had stabilized her vital functions, but there had been severe head trauma--and then came the chaplain, unsummoned. I already knew. Finally, the neurosurgeon entered. Her heart was still beating, but she'd lost blood flow to the brain: Donna Lee, my wife, was dead.

By then our family had gathered, and the nurse escorted us to the trauma room. They had cleaned Donna Lee from her injuries and she looked so peaceful, as if she were just sleeping. But I knew better.

I don't remember how long I stayed at her side--it might have been minutes; it felt like days. When I did finally leave her, the neurosurgeon walked me down the corridor and gently raised the question: what would you like to do? I knew what he meant, too. My mind immediately raced to a conversation Donna and I had had years before, where we both decided together that we wanted to be organ donors upon our deaths. The decision wasn't easy, but at least it wasn't complicated. I knew what she wanted, and I was privileged to make it happen.

Her heart went to a man in Tampa, Florida, and her pancreas and one kidney to a teenage boy in D.C. who was on the verge of dropping out of school because of his illness. Her other kidney went to a hospital custodian, her liver to a woman in Pennsylvania, one cornea to a woman in Baltimore and the other to a lifetime civil servant. Then, four years later, our wounds only just starting to close, it happened again, this time to my daughter Vikki Lianne--again in a car crash. Twice in four years.

While we had had a positive experience donating my wife's organs four years before, frankly, this time we were conflicted. We were pro-organ donation, but we didn't know what Vikki would have wanted. Ultimately, we decided to donate her organs and tissues, but it was only after we made that decision that my older daughter told us that she and her sister had had a discussion after my wife died and that Vikki stated that she too wanted to be an organ and tissue donor. We were not aware of that discussion when we had to decide, and we easily could have decided not to; knowing her intention would have made the decision so much easier. Today, ORGANIZE has built technology tools that allow anyone to share their donor wishes publicly on social media to ease the donor family experience and ensure that next of kin can always make as informed a decision as possible. It would have made our experience so much easier when Vikki passed.

Our family lost two beautiful lives, and we ended up saving eight others through the miracle of transplantation. It's easy to connect with the human story, of people helping people and families helping families. But there's something else that is often overlooked. For any donation to happen, there needs to be perfect coordination across healthcare professionals, from donor hospital nurses to administrators to organ recovery coordinators to transplant centers. Stories about donation are often told as one hero making a singular decision to register as a donor; in truth, they come from finely coordinated teams of people. Unfortunately, there are as many times when that doesn't work as when it does.

Having served two tenures as US Surgeon General, I'm no stranger to public health. I can tell you from professional and personal experience that it's tricky - there are many stakeholders, generally all equally passionate, but each with their own forces acting upon them, not always in perfect harmony. Organ donation begins with people, individuals who decide to become organ donors, but it doesn't end there. There are public safety officers who bring patients to the emergency room, nurses and physician assistants in donor hospitals who must identify and refer donation-eligible deaths, transplant recovery professionals and transplant coordinators from organ procurement organizations that discuss donation with next of kin, and surgeons and surgical teams from the transplant centers who perform the actual operations.

With so many links in the chain, even one minor misstep can result in a missed opportunity. When Donna Lee died in 1992 there were about 29,000 people on the organ transplant waiting list. When Vikki Leanne died in 1996, there were 49,000 people; today, in 2016, there are more than 120,000 people on that list. Despite the more than 31,000 transplants that occurred last year, approximately 22 people die every day while waiting. While the system certainly produces some heartwarming stories, it also produces far more heartbreaking ones than it should--these just don't get told as loudly.

The organ recovery system has room to improve, and the goal of saving as many lives as possible through organ donation should be prioritized above all else. There are numerous opportunities and ways to increase organ donation, and through that, organ transplantation. More people will gain a new life, an improved quality of life, and be able to reenter, enjoy, and contribute back to society. All of us, working together, can achieve this goal.

Earlier this week, the White House hosted a summit on innovations in organ donation to explore new thinking, new technologies, and new solutions. If we are serious about creating positive change, there is no better time than now.

This post is part of a series produced by The Huffington Post and ORGANIZE, a non-profit looking to end the organ donation crisis by identifying and building on opportunities for improvement through technology, advocacy, and policy. Learn more at ORGANIZE.org