Kidney to Share

Kidney to Share

Martha Gershun and John D. Lantos, MD

ILR Press, an imprint of Cornell University Press

Ithaca and London

For Ann, of blessed memory,

and Cheryl, who paved the way with courage and grace

And Don, who made the mitzvah possible

—Martha

For my daughters, Hannah, Tess, and Emma,

whose altruism and compassion inspire me

—John

Whoever saves a single life is considered to have saved the whole world.

Mishnah Sanhedrin, Talmud

Contents

Acknowledgments

Introduction

1 Why Not Me?

2 The Arcane Process of Screening Living Donors

3 Meeting My Recipient

4 Do I Own My Organs?

5 Evaluation at Mayo

6 Are Stranger Donors Irrational?

7 What Are the Risks?

8 Unnecessary Bureaucratic Barriers or Appropriate Patient Protection?

9 The Endgame

10 Paired Exchanges, Chain Donations, and Organ Markets

11 The Odyssey Continues

12 Complexities of Increasing Organ Supply

13 Going Public, Moving Forward

14 The Countdown Begins

15 Ethics, Organ Markets, and Dry Ice

16 Staying Healthy

17 First Attempt

18 Second Attempt

19 Follow-Up

20 Lessons Learned

Epilogue

Resources

Works Cited

Index

Acknowledgments

There is no way to write a book about donating a kidney without acknowledging the intimate partnership such an act creates with the person receiving the organ. Deb Porter Gill is the only person on earth who, literally, has a piece of me inside her. I will always be grateful that I matched with this warm, smart, funny, extraordinarily strong woman. I owe a great debt to the friends and family who supported me during the kidney transplant process and helped as I struggled to shape this narrative: Jim Abel, Dr. Susan Brandt, Rob Chilson, Kay Heley, Perri Klass, Gail Lozoff, Mary McClure, Lois Rice, Linda Zappulla, and my children, Nathan Goldman and Sarah Goldman, two of the finest writers I know. And, of course, John Lantos, who agreed to help me tell the story.

—Martha

Special thanks to Children’s Mercy Hospital in Kansas City, Missouri, which had the vision and the values to start a pioneering pediatric bioethics center. The leaders—Mike Artman, Fred Burry, Karen Cox, Paul Kempinski, Rand O’Donnell, Charlie Roberts, and David Westbrook, shaped an institution committed to the highest ethical principles and the best care for children. My colleagues in bioethics—Paul Bauer, Brian Carter, Jeffrey Colvin, J. C. Cowden, Jeremy Garrett, Mary Hudson, Angie Knackstedt, Laura Miller-Smith, Jennifer Pearl, Hank Puls, Dane Sommer, Vanessa Watkins, and many others—were always there for conversation, cross-covering, struggling together with tough issues, teaching, writing, and supporting each other. And to Martha, whose altruism is inspiring.

—John

Introduction

John D. Lantos, MD

This book presents two very different perspectives on living organ donation. I am a physician and bioethicist. I study, teach, and write about ethical issues that arise in medical research and practice of medicine. Martha is a Harvard MBA who left the business world to work in the not-for-profit sector. The two of us are friends, colleagues, and members of the same synagogue. In 2018, Martha decided that she would donate a kidney to a woman she read about in the newspaper.

When Martha first told me about her interest in donating a kidney to a stranger, she was excited, eager to get started; she assumed that, if she was a biologic match, then the rest would be relatively easy. She understood nothing about the long and complicated evaluation process for living donors.

I wondered whether she really understood what she might be getting into. I was intrigued to learn more about her motivation and her enthusiasm. I was concerned that she didn’t understand the risks or the costs.

Martha expressed surprise at my hesitation and hastened to explain her motivation. One of her closest relatives had received a living kidney donation many years before. She and her entire family were deeply moved by the donor’s generosity and deeply grateful that their loved one’s life was saved. Those events shaped her conscience around the decision to donate. She was exhilarated by the prospect of continuing that story, of paying forward the generosity that had extended her cousin’s life. She found the idea of giving a kidney to save someone deeply compelling. She was as puzzled by my reticence as I was by her enthusiasm.

In the months that followed, we talked often about her experience going through the process to become an organ donor. We became fascinated by the biological, legal, ethical, economic, and sociological complexities of this very strange medical procedure. I learned a lot about how the institutional structures in transplant centers work today. She learned a lot about how the history of organ donation shaped current policies and practices. Over those months, we talked about the origins of transplantation, the scientific discoveries that made it successful, the changes in the way transplant programs think about and screen living organ donors, and the ethical implications of these complex and interrelated issues.

The fact that one person’s organs can be successfully transplanted into another person represents one of the most remarkable medical breakthroughs of the twentieth century. This breakthrough was a scientific triumph, but the benefits could not have been achieved with science alone. Transplantation also raised complex spiritual, legal, and ethical issues that had to be addressed. Some of these issues deal with the most profound questions facing humanity. What do we owe one another? Are there limits to altruism? If we can donate body parts, why can’t we sell them? When is someone really and certifiably dead?

This book tells the story of one kidney transplant. The transplant was from a living donor. The donor was unrelated to the recipient and, when she volunteered to donate, she did not even know the recipient. This type of altruistic donor transplant is rare in America today. Of the nearly forty thousand transplants in the United States in 2019, only a few hundred were from unrelated living donors (Transplants by Donor Type n.d.).

The story we tell is important for two reasons. First, it might inspire some people to follow Martha’s path and donate. The need is there. There are not enough organs to go around. More than 112,000 men, women, and children are currently on waiting lists for organ transplants in the United States. Twenty-two of them will die every day because they did not get a transplant in time (Organ, Eye and Tissue n.d.). The greatest need is for kidney donors. More than 80 percent of those on the transplant waiting list need a kidney (Kidney Transplant Waiting List n.d.). Increasing the number of organ donors, especially kidneys, will save lives—lots of lives.

This improvement in health outcomes costs us nothing; in fact, increasing the number of kidney donors, in particular, would also save money—lots of money. Kidney transplants are much less expensive than dialysis, even including the lifetime cost of immunosuppressant medications that recipients require. For a kidney patient on dialysis, the financial break-even, whether for the patient, the insurance company, or Medicare, occurs within the first two years, and the economic savings continue every year after that (Jarl et al. 2018). Unlike so many other medical interventions, increasing the number of organ transplants actually reduces the amount of health care spending required to save lives.

The second reason our story is important is that it might goad transplant programs into rethinking their processes for cultivating, evaluating, and then stewarding organ donors. These are not traditional patients even though they undergo an operation. They are not sick, though the procedure itself can cause health problems. Instead of being treated as a unique subclass of patients, they might best be treated as a unique subclass of philanthropists who are making a very, very valuable gift to the hospital, to the patient, and to society as a whole. Today, neither transplant centers nor public policy treats them that way.

Donating an organ is an act of great altruism. Donors should be encouraged and perhaps rewarded for their willingness to give a body part to save another human being. But, as this story will show, that does not always happen. For a variety of reasons including organizational complexities, bureaucratic red tape, and an extreme aversion to risk, people who want to donate face numerous barriers, hassles, and costs. If we truly want to increase the supply of organs, we need to find ways to make the process of become a living donor a lot smoother.

Martha’s story occurred at an important time in the history of organ transplantation. In the early days of transplantation, the procedure was very risky. Most recipients either died or had lifelong complex health problems. Today, with advances in matching and immunosuppression, most do well. As a result, transplants have become much more common and almost routine.

In 2019, in the United States, 19,267 people, living and dead, donated their organs in an effort to save the lives of others (Organ Donation Again Sets Record in 2019 n.d.). More than 80 percent of these donated organs came from people who died. The other 19 percent—7,397 in 2019—were donated by living people.

Tragically, those numbers will likely be reduced in 2020 due to COVID-19. Transplant centers across the country canceled living donor surgeries in the earliest weeks of the pandemic in order to preserve personal protective equipment and reduce the strain on hospital capacity. In a national survey conducted the week of March 24, more than 70 percent of responding transplant centers reported complete suspension of living donor kidney transplants (Boyarsky et al. 2020). By May 4, the number of living kidney transplants performed in 2020 was 34 percent less than the comparable number in 2019. While living kidney transplants returned to near pre-pandemic levels as hospitals resumed elective surgeries, little progress had been made in recouping these significant losses five months later. As of August 22, 2020, there had been 3,167 living kidney transplants performed in the United States, compared to 4,509 on August 22, 2019, a reduction of 30 percent (for these year-to-date figures, see Current State of Organ Donation and Transplantation 2020).

Living donors can only give certain organs—kidneys or portions of livers, lungs, or pancreas (Organs n.d.). Deceased donors can provide any and all organs. One person might be able to donate two kidneys and two lungs, as well as their liver, pancreas, heart, skin, corneas, and intestines (HRSA n.d.).

Since deceased donors can often give more than one organ, this resulted in 39,717 organ transplants in 2019, the seventh consecutive annual record (HRSA n.d.). Kidney transplants are the most common. They make up 59 percent of all transplants. Livers (22 percent) are next (More Transplants Than Ever 2020). While each of these individual gifts is beyond measure, their aggregate impact still falls far short of the number needed for people whose organs fail every year.

The progress in transplantation could not have occurred without careful study and progress on both the biological issues and the legal and ethical issues associated with it. As an example, the concept of brain death was developed in the 1960s to allow organs to be taken from people whose hearts were still beating and who thus could not be declared dead by traditional cardiorespiratory criteria (Truog and Robinson 2003). Prior to the notion of brain death, people whose hearts were beating were considered to be alive, and it would have been considered murder to remove a living person’s beating heart. After brain death was introduced, people could be declared dead if they had irreversible cessation of brain function, even if their hearts were still beating. This was a radical and controversial legal innovation. Some religions still do not accept the concept of brain death. A recent article in the New Yorker magazine summarized the controversy by quoting several prominent bioethicists. Peter Singer, a philosopher at Princeton University, described brain death as a concept so desirable in its consequences that it is unthinkable to give up, and so shaky on its foundations that it can scarcely be supported. This new death was an ethical choice masquerading as a medical fact. Philosopher Daniel Wikler wrote of the concept of brain death, I thought it was demonstrably untrue. But so what? (Aviv 2018).

Another fundamental bioethical issue in organ transplantation was the challenge of deciding whether it was ever ethically acceptable to remove an organ from a living donor. There were many good reasons to prohibit such a procedure. After all, living donation requires doctors to perform invasive and possibly risky surgery on a healthy person. Doctors must remove a fully functional organ and do it not for the benefit of the person who is undergoing that surgery but for the benefit of someone else. This would seem to violate the most fundamental principle of medical ethics: do no harm. The possibility of successful organ transplants raised a new conundrum: could the opportunity to save another person’s life override this basic tenet?

This was an important question because organs from living donors offer many advantages over organs from deceased donors. They allow for greater flexibility in surgical scheduling, avoiding the last-minute rush associated with cadaveric organ transplants. When the donor is a biological relative, living organ donations offer the potential for a better immunological match. And, in the case of kidneys, organs from living donors offer better medical outcomes for the recipient (Wang, Skeans, and Israni 2016). Most importantly, they increase the supply of available organs for everyone, since a patient who is on the waiting list for a cadaveric kidney and who then gets a kidney from a living donor comes off the waiting list. When that happens, everybody else moves up a spot, taking them closer to the top of the list to receive a transplant. Patients who would otherwise die waiting for a deceased donor will live because someone donated a living organ.

The benefits to the recipient of receiving a living organ donation are clear. But what about the donor? While the risks of organ donation are statistically very small, all living donors choose to undergo major surgery and possibly compromise their own long-term health. There may be short-term or long-term psychological consequences, as well (Living-Donor Transplant n.d.). In order to avoid these negative outcomes, medical centers have rigorous standards in place to ensure that only very healthy, stable people, those who are unlikely to be harmed physically or psychologically by the procedure, are approved to donate. These policies and practices seek to limit the risks of living organ donation. But they cannot erase them altogether.

In the early days of transplantation, before we understood the immunology involved and the pharmacology of immunosuppression, the only successful transplants were from close relatives. Eventually, as this book will discuss, the criteria for who could donate were expanded. With each expansion, new ethical questions arose about the motivations of donors, the prerogatives of surgeons, and the acceptable levels of physical and psychological risks for donors.

Today most living donors are relatives, life partners, or close friends of their recipients. When such relationships exist, it is easy to imagine that the donors experience psychological benefits from donating to save a loved one. That psychological benefit was important in legal and ethical debates about the acceptability of living organ donation. Doctors, judges, and ethicists argued that the physical and psychological risks of the donation were balanced by other psychological benefits to the donor.

But many people who need an organ do not know anyone who is willing to donate. Or, if they do, that person may not be healthy enough to undergo the procedure. Or that person might not be a good immunological match. In the past, those patients had to wait for a cadaveric organ. Many died before an organ became available.

In recent years, a new group of living donors have stepped up to help those with no relative or close friend to donate. Some have no prior relationship with the recipient at all. Last year, 6 percent of living organ donations came from such altruistic donors (Transplants by Donor Type n.d.). These people chose to give the gift of life to a total stranger.

The process of becoming a living donor can take months, sometimes years. It is time-consuming, invasive, and inconvenient, with dozens of players and even more moving parts. It can also be expensive. While the costs of both the evaluation and the surgery are covered by the recipient or their insurance, the costs of travel, childcare, and time off work for both the donor and their caregiver are not. These expenses can mount up. Out-of-pocket costs are likely to be especially high if the surgery is performed far from the donor’s hometown, which is often the case. Not every community has a medical center equipped to perform organ transplants, and recipients must first receive approval to enter the transplant program at a center that can meet their specific medical needs. So donors must travel to the transplant center that is treating their recipient, both for evaluation and screening, as well as for the transplant surgery, increasing both the inconvenience and cost of donating.

In addition to increasing the burden on all living organ donors, these choices place particular hardships on people with lower incomes, who are less likely to donate organs than people with financial means (Gill et al. 2013). As a result, low-income patients are less likely to find a living donor, since they are less likely to have relatives or friends who can bear the costs of missed work, travel, and childcare (Lentine and Mandelbrot 2018).

Given the desperate need for organs, and organs from living donors in particular, one might imagine that medical centers would have policies and procedures in place to make it as easy as possible for people to be screened, and, once approved, to donate. One might imagine that public policies would encourage, protect, perhaps even reward people who offer to give the gift of life that organ donation represents. One might imagine there would be compensation for time lost from work for the evaluation and the transplant surgery and recovery for both the donor and their caregiver. One might imagine that out-of-pocket expenses, such as travel and childcare, would be reimbursed. In fact, as we shall show in this book, this is not the case at all. Both current medical center practices and public policies do very little to ameliorate the obstacles that impede healthy people who want to become living donors, even when they are deeply committed to doing so.

This problem is not unique to the United States. No health system