Narrative Inquiry in Bioethics

Mrs. Jones, a 63-year-old executive, came to my office in a prominent academic medical center in 2010 with nerve pain. Prior to her arrival, I had been alerted by development staff that she was an avid philanthropist and, though she had not yet given to our institution, she had the financial capacity to do so. Over the ensuing year, my interactions with Mrs. Jones followed two separate but parallel paths: I served as her doctor, treating her clinically for her condition, and, guided by my development officer, I discussed with her my research vision, current focus, priorities, and funding gaps. For the latter conversations, my development officer carefully shepherded a multi-year process that resulted in successive gifts for my research: a six-figure commitment in 2011; another similarly-sized gift in 2014; and, in 2019, [End Page 13] an eight-figure commitment. Her generous support continues to enable the work I do to better understand peripheral neuropathy and nerve regeneration and develop new, more effective therapies.

I feel fortunate to work for a medical center that performs grateful patient fundraising (GPFR) in a professional, ethically sound way, a way that respects patients, physicians, and the relationship between them, allowing the physician-patient relationship to remain focused first and foremost on the patient’s health and well-being.

Mrs. Jones was one of the first patients to open my eyes to the fact that philanthropy can benefit not only my research, my institution, and me professionally, but also the donor. I entered the realm of GPFR as a complete novice and through an unusual door: I accepted an invitation from my institution’s Vice President for Development and his physician-scientist partner to participate in a research study examining development practices, specifically, methods of engaging physicians in GPFR. I enrolled in a unique randomized controlled trial (RCT) that compared three practical methods used by development staff to educate clinicians like myself about GPFR: a web-based module, a group lecture, and one-on-one coaching. Study participants received training in one of these three ways for six months; results were published in 2010 in Academic Medicine.

As one of the physicians randomized to the study’s “coaching” arm, I was trained by our Vice President for Development who was employed by my institution and trained in the protocol. Training covered various topics ranging from background on philanthropy (e.g., why patients give), to how development works (e.g., how development staff work with physicians), to ethical considerations and how to manage them.

Philanthropy and fundraising had occupied no space whatsoever in my medical education or specialty training. Admittedly, I started the coaching a bit skeptical. I had reservations about how GPFR might work for my patients and me but I chose to enter the study with an open mind. Among the many details I learned, there are two general points I would like to convey: First, when GPFR is practiced well, it does a service to both donor and recipient—be the latter a physician, institution, field of medicine, scientific community, future patients, or all of these. Typically, donors through the GPFR process actually have or had the disease that we (their physicians) treat and study. If their experience of care has been positive, they often want to “give back” out of gratitude. Mrs. Jones, for example, was appreciative of the care I gave her; my sense is that she has felt grateful both for the quality of care and attention she has received, and also for the genuine personal concern I have consistently shown her (as I do all of my patients). She wanted a way to say “thank you,” and making a financial gift enabled her to do so. I directly witnessed the personal fulfillment she gained from this philanthropic act.

A second overarching concept I took away from the RCT was that there is indeed a professional way—a way that is sound, boundary-preserving, and ethical—to practice GPFR. When thus performed, GPFR does not compromise the physician-patient relationship and can actually strengthen it.

GPFR is not a “seat of the pants,” mysterious, or “intuitive” process, unfolding at the discretion of each development officer. Rather, it follows a regular progression. The coaching I received—now a “curriculum” that my institution provides to all—informed me about the stages of a gift cycle, namely, identification, engagement and cultivation, solicitation, and stewardship.

With Mrs. Jones, the process has played out as follows: She was first identified by development, via publicly available information, as a patient with the financial capacity and potential inclination to make a gift. My development officer, whom I’ll call Mary, used various open-access data to generate a picture of this person, her background and interests, what she cares about, her giving history, and her possible further philanthropy.

At the end of one of my clinical appointments, Mrs. Jones indicated that she had an interest in supporting my research. My coach in the RCT instructed me that I, myself, did not need to raise the topic of philanthropy with patients, but should instead watch for signs of interest or inquiry from Mrs. Jones and, if she expressed curiosity about my research, to ask her if I could put my development officer in touch with her. At this juncture, I asked Mrs. Jones if I could pass along her contact [End Page 14] information to my development officer, and she was amenable. At this point, I stepped back and Mary made the initial GPFR-related contact, scheduled meetings for that purpose, and moved the process along.

Over many years now, Mary and I have worked together to engage with Mrs. Jones which, in her case, we do primarily through written research updates and periodic in-person meetings. These GPFR-related meetings are always scheduled (a) separately from clinical visits, and (b) at a time that is sensitive to her health, well-being, and comfort, for example, not during active treatment phases. At the appropriate time, Mary has assumed all responsibility for soliciting so that the request for money would in no way impact my rapport with my patient. Following each of Mrs. Jones’ gifts, Mary has worked closely with me to communicate, in various ways, my gratitude and the impact of her gift. With this division of tasks, I have been able to maintain a strong physician-patient relationship with Mrs. Jones while, separately, Mary has built and deepened, through ongoing stewardship, a strong fundraiser-donor relationship with her.

Like many physicians, I initially had concerns about the ethics of asking patients for contributions to a doctor or institution that treats them. I worried that this might violate my commitment as physician to my patient, or that the introduction of a possible financial interaction might jeopardize our clinical relationship. Most importantly, I wanted assurance that raising the concept of giving would not negatively impact the patient in any way. As a physician at the outset of my career, I took what I consider a sacred oath to “do no harm.” Harm comes in many forms, including emotional damages such as feeling valued for one’s wealth rather than for one’s self as a person, feeling pressured, or losing trust in one’s physician or institution—all potential ethical violations of GPFR if wrongly practiced.

My institution’s development team was concerned, as well, about the potential risks inherent in GPFR and the lack of ethical standards. To address this issue directly, in 2016 they hosted a Summit on the Ethics of GPFR, which engaged national representatives of the key stakeholder and informant perspectives. The 29 participants were physicians, grateful patient donors, academic administrators, a leader in the American Medical Association, development officers, and faculty in psychology, law, and medical ethics from various institutions across the country.

The conveners of the Summit—leaders of our institution’s development office and bioethics institute—viewed the immersive, day-and-a-half gathering not as a policy-setting forum nor as a group empowered to outline definitive standards for ethical practice. Their intention was, for the first time, to (1) systematically name all of the significant potential ethical issues that might arise in the practice of GPFR, and (2) begin to develop answers to them from a broad range of perspectives. The Summit’s primary goal, through work extending several months beyond the Summit, was to develop a set of draft recommendations that could be discussed in relevant professional communities—medical, legal, ethical, development—honed, and adapted as appropriate for use within medical institutions. These recommendations have been published in Academic Medicine and JAMA.

Returning to my own story, I have been fortunate to have several other affluent patients join Mrs. Jones as supporters of my research. Mary continues to work with me, cultivating and stewarding the donor relationships, and making the requests. She always takes the lead in initiating the first discussion with patients about their potential interest in supporting my research, and she ensures my comfort with the process, for example, my desire that we not create unrealistic expectations of what might result from a gift.

I would like to close with a note of realism and a note of gratitude (my own). We live in a country that has vast financial disparities and also tremendous generosity. Individuals in the United States, collectively, give billions of dollars each year to the country’s medical centers. The significance and impact of their giving cannot be underestimated; they make a huge difference for institutions, medical knowledge, and future patients.

Philanthropists know that they make a difference in our society. Our invitations to them, extended by development staff, to engage in the GPFR conversation rarely if ever (in my observation) come as a [End Page 15] surprise. Most, I believe, sincerely want to help, to make a difference.

Lastly, I personally am very grateful to the patients who have given so generously to support my research, and to the development staff who have carried the weight of the GPFR process, allowing me to focus on my patients’ care and my research. My development partners help my patients connect with the world of medicine in a different way than they experience by simply being a patient, and I am grateful for the benefits this brings to my patients. For those fortunate enough to be able to contribute, giving provides a sense of meaning, purpose, and relevance. It allows them to contribute to others, and the world, in an impactful way. It offers a language in which to express their appreciation. It enables them to learn about something they have a strong personal interest in, and to help advance knowledge in that area. And it gives them a different way to connect with me—not only as my patient, but on a different plane where we work together to solve medical quandaries that affect not just them but a wide world of others, present and future, who suffer similarly.