Bioethics Forum Essay
Grateful Patient Fundraising: Ethically Problematic or Altruistic?
Nonprofit hospitals increasingly rely on philanthropy to supplement decreasing clinical revenues and a decline in the growth of government research funding. Grateful patient fundraising programs, as they are known, employ a strategy in which hospitals seek donations from satisfied patients, often using public data to identify those who are wealthy and requiring their physicians to discuss giving opportunities with them. In a recent issue of Narrative Inquiry in Bioethics, 12 physicians discuss their experiences with grateful patient fundraising and take up legal and ethical issues.
While there are benefits from this approach—in addition to raising billions of dollars for health care institutions it gives patients who genuinely want to show gratitude a ready means to do so—solicitation by physicians raises concerns about patient privacy and risks jeopardizing clinical relationships.
In “Targeting Patients for Donations: Opening a Door, or Pushing Them Through It?” Michelle A. Burack reveals how she discovered that the development office at her medical center was sending donation requests to patients on her behalf. While she was leading a patient to the exam room for a routine appointment, the patient told her about a solicitation letter that she received. The patient said, “I have to say, when I first opened the letter, it was kinda creepy. But I’m so grateful for your excellent care that I felt like I had to send something.”
The patient’s response stopped Burack in her tracks. “Wait—the hospital sent you something asking for a donation?” The development office had informed Burack that her patient had made a donation in her name and asked Burack to send her a thank-you letter, but the office didn’t say that it had solicited a donation from her patient and that it had referenced her.
Burack then asked people in the development office to clarify what was going on. A change in the federal HIPAA (Health Care Insurance Portability and Accountability Act) privacy rule in 2013 made it possible for them to view which providers a patient recently received care from and send targeted requests for donations. This regulation also allowed hospitals to conduct wealth screenings, often before a patient has had a medical appointment, to determine the patient’s capacity for giving. The information gathered is often from public records.
“I was distressed that the sacred space of trust that I so carefully cultivated with each patient was being breached by the institution without my knowledge or assent,” Burack writes. “Unlike relationships with other entities that receive philanthropic donations, a patient’s relationship with a health care institution is non-discretionary. . . . This results in an inherent power differential that can put undue pressure on individuals who are in a vulnerable position.” Burack resigned from the institution shortly after discovering that her clinical relationships were being leveraged for fundraising.
Jason D. Keune and Jeremy A. Lazarus, the symposium editors, point out that GPFR has been the focus of much ethical scrutiny and that physicians have an overriding obligation to care for their patients first. But Keune and Lazarus also acknowledge that a decline in the growth of government funding for clinical and research activities, particularly in academic medical centers, has made fundraising for health care essential. Gifts from grateful patients can provide support for research, salaries, medical equipment, and state-of-the-art facilities, ultimately improving outcomes for patients.
James Malone, the chief medical officer at a nonprofit community hospital, discussed how grateful patient donations support services and care that would not otherwise be available at his hospital. Without them, he writes, “patients would likely have to travel many hours away from home to access the care they need, which would add hardship to an already stressful time in their lives.”
Despite the benefits of grateful patient fundraising, Stacey Tovino, a law professor, warns that solicitation of donations by physicians raises a number of legal and ethical issues. These include concerns about equity (if patients with the means to donate are given priority scheduling or granted other favors), patient privacy (when hospitals access patients’ personal information to assess their capacity for giving), and the doctor-patient relationships (when the role of physician and fundraiser conflict). But Tovino thinks that these concerns can be mitigated by ethical guidelines and recommendations proposed at a Summit on the Ethics of Grateful Patient Fundraising in which she and 28 other experts in the field participated. The guidelines include separating discussions about donations from clinical encounters and referring patients interested in giving to development professionals.
Reshma Jagsi’s initial thoughts about grateful patient fundraising grew from an encounter she had shortly after finishing residency training with a patient undergoing treatment for breast cancer. “We had just finished a conversation about how daily radiation treatments were going to pose a substantial financial burden to her family,” Jagsi writes. “Her daughter would have to take time away from her work cleaning houses, and gas prices were at an all-time high.” Jagsi describes how the patient then showed her a document given to her in the waiting room, asking her permission for the hospital staff to contact her for development purposes. The patient did not understand and asked Jagsi to explain. “It did not seem to be an optimal time to discuss what ‘development’ meant,” Jagsi writes. “At the time, I was focused on my patient’s lack of financial means. . . . I did not want her to worry that her inability to donate would have any influence on my care for her. I wanted to maintain her trust.”
Now a professor and director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan, Jagsi writes that her reservations about grateful patient fundraising have eased. Through interactions with colleagues in development, she has come to appreciate not only that giving benefits society but that it can also be personally fulfilling to patients.
The term grateful used to reference these types of philanthropic programs implies that there is no worthwhile way to show gratitude or give back if a grateful patient is without the means to make financial contributions. This is particularly wounding when nearly half of all adults in the U.S. are saddled with health care debt.
In “Grateful Patient Fundraising and Unconscious Bias,” Alyssa Sutton and Ceciel Rooker highlight the ways in which grateful patient fundraising may marginalize patients who are not wealthy, many of whom come from minority groups and other vulnerable populations. “If the only opportunities for contributions are monetary, those who are indeed grateful but lack the financial means may not be given the opportunity to contribute, making the system non-inclusive and thus adding to the already tenuous ethical dilemma,” they write.
Jagsi argues that patients without the financial means to donate should have other opportunities to show their appreciation. These opportunities include inviting patients to share stories or testimonials about their experience and offering their perspectives on what the institution should do to provide greater benefits to the community. Patient testimonials can be used in giving campaigns to help those with the means to donate understand how their gift may benefit others.
Jagsi reflects, “Maybe in my attempts to protect against the ethical challenges of such situations, I have been inadvertently robbing my patients of an opportunity to feel empowered by the exercise of altruism.” Jagsi urges the development community to move away from wealth screening so that the benefits of altruism are available to all patients.
Heidi Walsh, MPH, CHES (@hamp42_heidi), is a senior project manager in the Bioethics Research Center at Washington University School of Medicine in Saint Louis. Annie Friedrich, PhD, is an assistant professor at the Center for Bioethics and Medical Humanities at the Medical College of Wisconsin.