Problems with grateful patient programs

Neurologist Michelle Burack, MD, had never really thought much about how her institution solicited donations before one awkward conversation with a patient.

“I maybe had an unquestioned assumption that it was always patients coming knocking on the door, saying, ‘Hey, we're super grateful. Can we dump some money on you?’” said Dr. Burack, who is now in private practice in Rochester, N.Y.

A few years ago, the development office of the medical center where Dr. Burack worked emailed her to say that a patient had donated in her name, so the next time they spoke, she casually offered a thank you.

“That's where I was just floored,” Dr. Burack said. “She said, ‘It was really creepy when they sent me this mailing, but I really appreciate you so much that I felt that I had to [donate].’”

Using the physician-patient relationship to solicit donations is not just creepy, but ethically problematic, according to a recent position paper from ACP, “Ethical Guidance for Physicians and Health Care Institutions on Grateful Patient Fundraising.”

The College's paper, published Sept. 26 by Annals of Internal Medicine, joins a number of recent publications, including the issue of Narrative Inquiry in Bioethics where Dr. Burack told her story, in increasing scrutiny of hospitals' current fundraising practices.

History of the issue

Although health care institutions have long been supported by donations from the public (Benjamin Franklin hit up Philadelphians to build Pennsylvania Hospital, the ACP paper notes), raising money based on physicians' relationships with patients is a relatively new concept.

One reason is the shifting business model of medicine, noted ACP President Omar T. Atiq, MD, MACP. “In the early 1990s, 70% of the physician practices were owned by physicians. Now it is the reverse: 70% are owned by corporations or institutions,” he said. “With this change, of course, physicians are employed by organizations.”

There's also the tightening financial pressure on those institutions. “Many health care organizations have been losing money or not meeting budgets. This could be one of the methods they starting thinking about to support the organization,” said Noel Deep, MD, MACP, a coauthor of the ACP position paper and Vice-Chair of the ACP Ethics, Professionalism and Human Rights Committee during the paper's development.

Declines in government funding for research over the past decades have made the problem particularly pressing at some hospitals, said William S. Anderson, MD, a neurosurgeon at Johns Hopkins Hospital in Baltimore who has researched grateful patient fundraising.

“There was an interest in academic medicine for performing more fine-tuned fundraising,” he said. “They began to bring over people who were involved in fundraising for private organizations that weren't related to health care … where this type of database screening was widely used.”

As a cause or an effect, a change in federal law also facilitated the growth of fundraising from patients. In 2013, the Health Insurance Portability and Accountability Act (HIPAA) was modified to allow the disclosure of patients' protected health information for the purpose of hospital fundraising. The ACP position statement describes this change as “overbroad,” opposes it, and calls for it to be reexamined.

This revision to HIPAA happened beneath Dr. Anderson's notice and that of many other physicians in his orbit, he observed.

“Around 2014, we started getting asked to participate in this type of fundraising, and so there were several presentations from development officers outlining the tools they had,” Dr. Anderson said. “They were collecting really a lot of information on our patients. … I would listen to these presentations and it just seemed out of place for this to be taking place in a medical environment, especially since the patients weren't aware of it.”

It's also disconcerting to those who are just beginning to work in medicine, added Uma Mahajan, MD, a neurosurgery resident at University Hospitals Cleveland Medical Center in Ohio. “In medical school, students learn extensively about the ethics of medicine and how important it is to protect patient privacy,” she said. “We are for treating all patients equally and strive to provide high-quality care to all patients.”

Drs. Anderson, Mahajan, and colleagues decided to look into how this change came about by assessing comments on the proposed rule and political donations made while the HIPAA revision was being considered by HHS. They published their results as a study in the Journal of Patient Experience in June 2022.

It found that the majority of comments came from hospital development offices, with only one from a physician organization and two from patient advocates, and that 95% of the over $81 million in related lobbying dollars came from those who favored modifying HIPAA to facilitate fundraising.

“It probably makes sense that there was a lot of money pushing for this change, but I think the levels of money are somewhat surprising,” said Dr. Anderson.

An ethical policy

The concept of grateful patient fundraising as a whole was surprising to Dr. Deep, who is regional medical director of Aspirus Clinics in Antigo, Wisc. “One of our ethics committee members brought this up,” he said. “I live in a small community. I did not even know this was an issue.”

Dr. Deep noted that ACP leaders' action on this issue, which also included a Board of Governors resolution, was triggered by programs that go even further than using a physician's name or department in a solicitation to a patient (as Dr. Burack experienced).

“In some of the bigger hospitals, they have approached physicians, because you're in that unique position where you know the patients very well and you are taking care of them, you are able to influence them to part with some of their money,” he said.

College leaders agreed that such practices are unacceptable, said Dr. Atiq, who is a distinguished professor of medicine at the Winthrop P. Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences in Little Rock. “It's contrary to the physician-patient relationship and jeopardizes it, in our opinion,” he said.

The ACP statement offers two main positions for physicians: not to solicit charitable contributions from their patients and not to reveal or use patient information for fundraising purposes.

Members of the U.S. public seem likely to agree with that guidance, according to a survey study published by JAMA in 2020. Fewer than half of respondents (47%) thought it was OK for physicians to give patient names to hospital fundraising staff even with permission; only 8.5% thought it was probably or definitely acceptable to do so without asking. Just under 10% went along with wealth screening of patients, using public data, to identify potential donors.

Those findings match Dr. Anderson's experience. “If I do mention it to my friends, people who don't work in medicine, they're shocked,” he said.

Dr. Deep can see why: “How would you feel getting a phone call from somebody in administration saying, ‘Hey, Mr. Jones, we see that you've been cancer-free for five years and you've been seeing Dr. Deep. Our hospital is thinking about starting a new cancer wing. Would you be interested in supporting that?’”

Such pitches can give patients the idea that their care could be negatively affected by their failure to give or positively by their donation, according to Dr. Atiq. “There could be a consideration from the patients who give that they will somehow be given preference, and that by itself is an issue,” he said.

That was one of Dr. Burack's concerns, which she delved into later with her patient. “When you sent that donation, did you think it was going to affect how I took care of you?” Dr. Burack asked her. “She said, ‘Not really, but at the same time, there was this implication that if you're appreciative of the care, you should give money.”

Fighting the push

When Dr. Burack learned that the list of patients she was seeing clinically was being used to target solicitations for donations, she expressed her concerns to her department chair and the institution's development staff. She recognizes that solution may be more difficult for some physicians.

“My department chair at the time did thank me for being vocal, saying, ‘I really appreciate that you're giving me a different view on this,’” she said. “I'm glad there weren't immediate negative consequences of my speaking up.”

Recognizing that physicians might worry about consequences from their employers for not participating in grateful patient programs, the College also called on hospitals not to ask them to do so, Dr. Atiq noted. “Our advice is for institutions not to put physicians in that jeopardy, that precarious situation,” he said.

The third position in the ACP statement is worded for institutions, saying, “Physicians should not be asked or expected to participate in fundraising solicitation of their patients or patient families. Participation in fundraising should not be a condition of employment, nor should it be a performance metric or part of an incentive system for physicians.”

For physicians whose hospitals do engage in some form of grateful patient fundraising, the experts had some suggestions to mitigate the programs' potential impact on the patient-physician relationship.

“I try to exempt my patients from the wealth screening process,” said Dr. Anderson, who noted that he talks directly to the development officer at his hospital. “I just asked them, ‘Please don't screen my patients. If I meet someone that I think is a possible donor, I'll let you know.’”

Dr. Burack would also begin by talking to development staff: “If you all are doing this on my behalf, using my patient lists, will I always be notified if a patient of mine donates?” she suggested asking. “If the answer to that is yes, then there's a way to mend any breaches. … I can have a one-on-one conversation with that individual to make sure there's not been an erosion of trust and that it's clear that there's not this quid pro quo in the clinical relationship.”

It might also be worth asking the development officers to offer a disclaimer in their pitches that you are not involved, Dr. Deep added.

But, if you're brave enough to fight the process more actively, go for it, the experts said. “Don't be afraid to say ‘no, thank you,’ even if it's just to your immediate supervisor, mentor, boss,” said Dr. Burack.

Dr. Deep suggests a firm no. “I would not be able to sleep at night if I were participating in or encouraging this. I would just push back and say, ‘I'm sorry, but I feel strongly that I cannot participate in this,’” he said, noting that physicians can now point to the College's position paper for support, in addition to pre-existing guidance from the ACP Ethics Manual.

The ACP paper notes that there are a number of ethical ways for physicians to help institutions raise money, including referring patients who express interest in donating to the hospital administration, speaking at fundraising events, attending galas, giving public talks related to one's area of expertise or research, and encouraging philanthropy by colleagues.

Dr. Atiq hopes that health care institutions will realize these and other alternatives to grateful patient fundraising are preferable methods for inspiring philanthropy from those helped by their care. “Let physicians take care of patients in the best possible manner, which is really the best marketing for institutions,” he said.