Grateful Patient Fundraising: Stories from Physicians

Abstract

This symposium includes 12 personal narratives from physicians who have been encouraged by their institutions to solicit donations from patients. This issue also includes three commentaries on these narratives by Stacey A. Tovino, Ceciel Rooker & Alyssa Sutton, and Richard Culbertson. This symposium presents a range of real life examples of how physicians and institutions navigate the ethical issues around fundraising from grateful patients paying particular attention to attempting to establish best practices to minimize any ethical conflicts. Some potential problem areas are also explored around transparency, real or perceived coercion and respect for boundaries.

Conflicts of Interest. The authors report no conflicts of interest.

Introduction

With a decline in the growth of government funding for both the clinical and research activities in academic medical centers, philanthropic giving has become remarkably prominent—rivaling or even surpassing government funding (2014). “Grateful patient” fundraising, or the inducing actions associated with philanthropic giving by patients to healthcare institutions, is central to this, with gifts from individuals and foundations totaling $42.12 billion in 2020 (The Giving USA Foundation, 2021, as cited in CCS Fundraising, 2021).

Beyond a necessary evil, grateful patient fund-raising has been the focus of ethical scrutiny. Not much imagination is needed to envision what kind of conflicts of interest might arise when institutional funds appear by virtue of a caring relationship between physician and patient. The American Medical Association Council on Ethical and Judicial Affairs issued “Physician Participation in Soliciting Contributions From Patients” in 2004. The report acknowledges that such philanthropic aid is crucial, but it must not interfere with the patient welfare that arises from the physician-patient relationship. Furthermore, it should be done in a way that respects “patient dignity and rights and benefits the community” (American Medical Association, 2004).

In 2017, a summit on grateful patient fundraising convened by Johns Hopkins Medicine Philanthropy Institute, the Johns Hopkins Berman Institute of Bioethics, and the Association for Healthcare Philanthropy assembled 29 experts from the fields of “bioethics, clinical practice, development, law, patients, philanthropy, psychology, and regulatory compliance” (Collins, Rum, Wheeler, et al., 2018). The group reviewed the entire landscape of grateful patient fundraising ethics and offered a significant number of recommendations on topics ranging from discussions with patients about philanthropy and other clinician-oriented topics, to institutional concerns like confidentiality and privacy. The summit concluded with a discussion about recommended next steps, including conducting research on this topic and disseminating the recommendations in training for clinicians.

Soon after, noting a dearth in the literature on ethical analysis on this topic, Megan Collins, Steven Rum and Jeremy Sugarman, all three part of the 2017 summit, published a review of the empirical data surrounding the topic. They presented evidence that physicians are generally unprepared to discuss philanthropy with their patients and that the most significant effect of solicitation was a negative impact on the physician-patient relationship (Collins, Rum, & Sugarman, 2018). In a study of patients who had given significantly to a single institution, researchers found a vast majority of patients framing it as “gratitude for their care and a desire to advance science and to improve the health and well-being of others.” The authors call for the need to better understand potential donor perspectives as well as a curriculum “to teach consensus-based, professional standards to development professionals and to clinicians” (Collins, Rum, & Sugarman, 2018).

Reshma Jagsi, in a response to Collins et al., called for expansion of the agenda. Patient and public perspectives should receive more attention and a greater focus should be put on how “development relates to the possibility of creating differences in the experiences of patients who do and do not have substantial financial means” (Jagsi, 2019).

The legal framework involved with grateful patient fundraising has also been scrutinized (Tovino, 2014a). In “Silence is Golden . . . Except in Healthcare Philanthropy,” Stacy Tovino provides a careful analysis of a key regulation within the Health Insurance Portability and Accountability Act of 1996 (2014b). In it, Tovino critiques and proposes corrections to provisions within these “Final Regulations” that increase the scope of the use of protected health information, as well as the ways that this expansion should be communicated with patients.

Tovino has also detailed a set of ethical issues specifically for physicians engaging in grateful patient fundraising (Tovino, 2014b). She exposes the risk of conflicted health care decision making, injustices in health care resource allocation such as treating a donor sooner than another patient who is not a donor, the risk of financial exploitation, and the possibility of breach of privacy. She presents two “catch-22s,” showing first that approaches to healthcare philanthropy that reduce the risk of confidentiality breaches seems to raise the greatest risk of distorting the physicianpatient relationship and vice versa. The second posits a link between financial exploitation and privacy. She shows that approaches that lessen the risk of financial exploitation seem to raise the most significant privacy concerns and vice versa. In this analysis, Tovino offers corrections to ethical guidelines that help to resolve these catch-22s.

The topic was put before the public in the form of a survey in another recent publication in JAMA (Jagsi et al., 2020). Of 831 patients targeted using a sophisticated algorithm, 513 responded. Approximately half of the respondents thought it was acceptable for physicians to give patient names to hospital fundraising staff after asking the patient’s permission. A small percentage even endorsed referring without asking permission. Most respondents (83%) thought physicians talking with their patients about donating could interfere with the patient-physician relationship.

In this issue of Narrative Inquiry in Bioethics (NIB), we look at the topic from a different angle and review it in a different key. Narratives from physicians are included in their full detail herein. They are accompanied by commentary from several key thinkers who are (for the most part) not yet part of the academic dialogue.

The Call for Stories

We sought stories from physicians who had experience with grateful patient fundraising at their institutions. We hoped to understand how grateful patient fundraising impacts the lives of these physicians and how it integrates with the rest of their practices.

Authors were asked to consider the following questions:

• • What conversations has your institution had with you about “Grateful Patient” fundraising? Have you received any coaching about how to effectively approach donors?

• • Has your institution developed guidelines for interacting with patients who offer gifts? What are those guidelines? What do you think of these guidelines?

• • Are you comfortable with assisting the development office at your institution with approaching your patients for financial gifts? Why or why not?

• • Has the experience affected your job satisfaction? Has it affected your physician-patient relationships? If so, in what way?

• • Have any donors expected favors from you (e.g., last-minute appointments, prescriptions that were not clinically indicated, or priority for scarce treatments or vaccines)? Did your institution encourage such favors? Did you feel pressure to accommodate such requests? How did you handle this?

• • What would you like to tell the leaders at your institution about its “Grateful Patient” program? What would you like patients to know about “Grateful Patient” programs?

The editors of Narrative Inquiry in Bioethics published the Call for Stories in the NIB newsletter and on the NIB website. Additionally, the call was posted on several social media platforms, including LinkedIn, Facebook, and Twitter. It was distributed through the American Society for Bioethics (ASBH), Medical College of Wisconsin (MCW), Center for Bioethics and Humanities at the University of Colorado, and the Health Humanities and Disability Studies list serves. The editors shared the call with the American College of Surgeons General Surgery, AMA Council on Ethical and Judicial Affairs, the Ethics and History of Surgery Communities, the Atrium Health Foundation, and the Saint Louis University School of Medicine faculty. The call was also shared directly with dozens of physician colleagues and friends.

The Narratives

Most of the stories received and included are from those that have had positive experiences with grateful patients, though there are stories in the collection that reveal concerns. In thinking about why we did not receive more submissions related to challenges or negative experiences, we can hypothesize that some might be concerned about their current position, admitting to a negative experience with an employer or group, or having a fundamentally opposed position to involvement in grateful patient solicitations. In the collection of narratives, each author describes their personal journey in thinking through and navigating their own comfort or discomfort in being involved early on with grateful patient fundraising or with being involved in philanthropy on an ongoing basis.

The Commentaries

This symposium includes three commentaries from Stacey A. Tovino, Ceciel Rooker & Alyssa Sutton, and Richard Culbertson. The commentaries draw out themes and lessons learned from the narratives. The commentary authors include experts in bioethics, health law and policy, patient advocacy, development coordination, nonprofit organization, and university administration and finance.

Professor Stacey Tovino serves as the William J. Alley Professor of Law and the Director of the MLS and LLM in Healthcare Law Programs at the University of Oklahoma College of Law. Professor Tovino’s teaching and research focus on patient privacy and health information confidentiality, bio-ethics and the law, mental health law, substance use disorders and the law, and COVID-19 and the law. She has written extensively on the topic of grateful patient fundraising.

Ceciel Rooker is the president and executive director of the International Foundation for Gastrointestinal Disorders (IFFGD), an international nonprofit working to inform, assist and support people affected by GI disorders. Ms. Rooker has experience in development coordination and has taken part in advocacy efforts in the US, meeting with policymakers on Capitol Hill and providing testimony to the US Food and Drug Administration (FDA) on behalf of the millions of Americans affected by functional gastrointestinal and motility disorders (FGIMDs).

Alyssa Sutton is a Program Coordinator at IFFGD. Ms. Sutton assists the IFFGD president with various projects, particularly in the areas of patient support, education, and advocacy. Ms. Sutton is proud to work with IFFGD and continue to raise awareness for the gastrointestinal community.

Richard Culbertson is Professor and Director of Health Policy Systems Management at the LSU School of Public Health, a Professor of Family Medicine, and Professor of Internal Medicine at LSU Health Sciences Center as well as an Adjunct Professor of Family Medicine at Tulane University. Dr. Culbertson concurrently serves as Head of the Ethics Key Resource for the Louisiana Clinical and Translational Sciences Center. He is formerly the Interim Vice Chancellor for Health Sciences and Associate Dean for Administration and Finance of the Medical School at the University of Wisconsin-Madison; and founding Director for Administration and Finance of the Medical Group at the University of California-San Francisco.

Conclusion

The articles and commentaries provide a broad overview of grateful patient and physician experiences and the ethical challenges, ranging from the individual patient and physician relationship to organizational fundraising dynamics. Although there are no bright lines in either medical or organizational ethics within these narratives, there is guidance on how to approach these complex issues from the bedside to system-wide practices. There is considerable literature on the topic. Physicians and systems would do well to discuss the best approaches that have been developed to protect physicians’ overriding obligation to their patients first. At the same time, physicians and the systems in which they work recognize that funding for health care is also a societal imperative in which grateful patient giving is one approach that, if done well, can be beneficial to both patients and the receiving organizations.