Lessons We Learned for Improving Healthcare and the World

Fifty-five years ago, we took a chance – took a road less traveled – to work together as a medical-legal team. For nine years beginning at age 26, we worked together on organ donation and transplantation at NIH, bioethical issues at the Hastings Center, on physician assistants and emergency medical care at the Yale School of Medicine, and helped take emergency care and the 911 system to scale at the Robert Wood Johnson Foundation.

Since then, our professional roads diverged. While we were both engaged full-time in health care – Fred as a primary care physician in Carmel and Salinas and Blair as a Vice President at Scripps Clinic and, for 26 years, as CEO at Rady Children’s hospital – we found ourselves reflecting on those experiences and the lessons we learned. We asked ourselves: are they relevant in today’s polarized America?

At a moment in our country’s history where we are facing physician shortages, social upheaval, a culture of alternative facts, “Fake News,” a distrust in science, a denial by millions of the validity of a presidential election, and the overturning of Roe V. Wade – a healthcare crisis that may define the next fifty years, we believe the lessons are more important today than ever before especially for those who aspire to change the world.

Remember, 1968 was hardly a walk in the park: Martin Luther King Jr. and Robert F. Kennedy were assassinated, the Democratic convention was overrun with violence, the divisive Vietnam war was the lead story on the 6:00 news, and we were entering the Watergate era. While our graduate educations had provided draft deferments, being in the Public Health Service allowed us to serve our country in a meaningful way.

If our democracy is to survive, we must live with a “possibility mindset” – our most important lesson. The only way to accomplish this is to Begin Where You Are. Whether you have an hour a week to volunteer, you want to launch a new initiative in your community, or you are looking to start a career in public service, take the first step and commit to learning along the way.

We were complete rookies (only 26 years old!) when we were directed to find out everything there was to know about the laws regarding the use of cadaver tissue for medical purposes. Blaring headlines like in the LA Times – “Coroner’s Aid Robs Corpses” or in the Minneapolis Star – “Bare Human Glands Sale” was cause for concern. NIH was funding research at Johns Hopkins and other medical centers to extract pituitary glands from cadavers to study how human growth hormone could be synthesized. A noble purpose, to be sure, but it seemed clear that some people in some coroner’s offices were not following the law.

Organ donation was a new field for us and it forced us to Grow from Beginner to Expert. We went to the Georgetown Law Library and read everything available on the variety of state laws dealing with autopsies and organ donation. When you become passionate about an issue, take the time to learn what it’s all about and be curious about its potential. The more knowledge you have, the better prepared you can contribute effectively to the cause you have chosen.

Find Partners. During our research, we discovered that the Commissioners on Uniform State Laws — now the Uniform Law Commission – had created a committee that had been at work for a year on drafting a model state organ donor law. We met with Professor Blythe Stason, the former dean of the Michigan Law School, who chaired the Committee. We reviewed the many connections we had made to health care organizations and that we had a mandate from NIH to explore these issues in depth. He asked us to serve as official consultants to the Commissioners.

Foster Collaboration. We worked on multiple drafts of the Uniform Act and reviewed them with Stason and his committee. Ultimately, they approved it and recommended it to the Commissioners. Too often, collective efforts are derailed by ego battles, territorialism, or conflicting ideologies.

Another important lesson that kept us moving forward – Lead from any Chair: offering what you have, and having the courage to step forward, all in the interest of helping your group or organization move closer to its shared goals.

Our shared goals with NIH and Professor Stason provided the framework for what would become the Uniform Act. At its core, Uniform Act is a GIFT statute based on voluntary, informed consent. It provided 1) an individual could decide to donate all or part of their body for transplantation or research. 2) if no decision had been made by the individual, the family could make the gift and it provided a specific definition of eligible family members. 3) It stated that the donor’s physician could not be the same as the recipient’s physician to avoid any conflict of interest. 4) It avoided including any specific definition of death because we knew that, as science evolved, medical criteria would too.

In June 1968, less than one year after arriving at NIH, we presented the Uniform Anatomical Gift Act (UAGA) to the full body of the 100 Commissioners assembled for their annual meeting. It was approved unanimously! The American Bar Association approved it one week later. The model law was enacted with little or no change by 41 states in the first year and by all 50 states in three years!

Sometimes, Persistence Is the Only Option. Progress requires persistence: knocking on doors, finding allies, asking favors, taking risks, pushing past internal and external barriers, and breaking down seemingly impossible challenges into manageable steps, then walking boldly forward, flanked by your partners.

Act with Transparency and Build Trust. The Uniform Anatomical Gift Act supplanted the archaic, cumbersome, and varied donation laws that had preceded it, doing away with one of the major impediments to transplantation. Any person of sound mind, age eighteen (or age twenty-one in a few states), or older, could donate organs and tissues for medical purposes. As the transplantation community learned about the new law, several organizations noted that a gift could be made by any written document, including “a card designed to be carried on the person.”

Donor cards had been used by eye banks, tissue banks, and the Kidney Foundation before the UAGA, but their legality had been questioned. The UAGA changed that. To be most effective though, all organizations distributing a donor card needed to use the same one.

Invite all Stakeholders. In 1969, As members of a National Academy of Sciences’ Ad Hoc Committee, we convened a pivotal meeting of 21 organizations with one goal – to develop a donor card that could be used by all. The meeting was a success and produced a simple legal document, the size of a driver’s license, that streamlined the consent process and functioned as an educational tool for all organizations involved in transplantation. The uniform donor card is still in use today.

In 2016, we participated in a White House summit on organ transplantation and gave a presentation at the 2018 annual meeting of the Uniform Law Commission on the history of the Uniform Anatomical Gift Act, as part of a celebration of its fiftieth anniversary. We experienced first-hand the power of several lessons – seek out mentors; start where you are; grow from rookie to expert; find and develop your voice; the power of collaboration and partnerships; include all stakeholders; take bold and aggressive action; lead with transparency and develop trust.

Dwell in Possibility. Can we end world hunger, solve the climate crisis, and eliminate systemic racism? Perhaps not in our lifetimes, and certainly not by acting alone. Can we make a lasting, positive impact in a particular area of concern? Considering the multifaceted crises confronting humankind, it is clear that we must. Even in the most challenging times, we remain confident in the possibility of positive change.

Take the Road Less Traveled. Leadership was never for the faint of heart – not 50 or 100 years ago and not today. In 1910, Teddy Roosevelt exhorted us to get into the arena and not sit on the sidelines. We were called by President John F. Kennedy in his inaugural address to “ask not what your country can do for you—ask what you can do for your country.” Congressman John Lewis in his final weeks: ‘When you see something that is not right, you must say something. You must do something. Democracy is not a state. It is an act, and each generation must do its part to help build what we called the Beloved Community, a nation and world society at peace with itself.” As Amanda Gorman said at President Biden’s inauguration, “There is always light if only we are brave enough to see it if only we are brave enough to be it.”

We hope these lessons will inspire and guide the next generation to be the light they want to see in the world.