Giving Thanks:
The Law and Ethics of Grateful Patient Fundraising
Stacey Tovino, JD, PhD
Lehman Professor of Law
Director, Health Law Program
William S. Boyd School of Law
University of Nevada, Las Vegas
Grateful Patient Fundraising

Definition: The solicitation of cash or an in-kind
donation from a current or former patient (or a family
member or friend of such patient) who is or may be
grateful for the health care given to or received by the
patient.

Theory: Patients who are grateful for the health care they
have received may be more willing to make philanthropic
contributions compared to less satisfied patients as well
as individuals who have no relationship with the
soliciting health care provider or institution.
Explanation of Background and Interest

Former hospital outside counsel on HIPAA matters

Former student beneficiary of grateful patient fundraising at the
University of Texas Medical Branch in Galveston, Texas

Current health law professor and ethicist

Recent object of grateful patient fundraising

On January 25, 2013, HHS issued modifications to the HIPAA
Privacy Rule addressing grateful patient fundraising
Gina Kolata, A New Effort Has Doctors Turn Patients Into
Donors, N.Y. Times, Sept. 29, 2015, at A12.
Shoa L. Clarke, How Hospitals Coddle the Rich,
N.Y. Times, Oct. 26, 2015, at A21.
Jennifer K. Walter et al., Oncologists’ Experiences and Attitudes About
Their Role in Philanthropy and Soliciting Donations from Grateful Patients,
33 J. Clin. Oncology 1 (Sept. 28, 2015).

Narrow legal question: What is the proper balance
between encouraging health care philanthropy and
maintaining health information confidentiality for
purposes of the HIPAA Privacy Rule?

Broader ethical question: In addition, what is the
proper balance between encouraging health care
philanthropy and preserving the integrity of the
physician-patient relationship and basic patients’ rights?
Grateful Patient Fundraising:
Conflicted Feelings

Health care philanthropy is very important.

There are significant legal and ethical issues that are
implicated by grateful patient fundraising and these
legal and ethical issues must be addressed by health care
institutions that seek philanthropic contributions.
Health Care Philanthropy
Charitable Giving (2014)
 In

 In

all industries ~ $358.38 billion
($258.51 billion from individuals)
the health care industry ~ $30.37 billion
($21 billion from individuals)
Giving USA 2015: The Annual Report on Philanthropy for the 2014 Year
Academic Medical Center Support

Health professional educational programs

Biomedical and behavioral research

Clinical initiatives

Building, equipment, and other infrastructure support
Other Health Care Institution Support
Whole hospitals and other health care institutions
 Hospital wings, departments, units, wards, and rooms
 Community-based clinics and other organizations
 Medical equipment (e.g., X-ray, CT, MRI, PET, SPECT)
 Daily operating expenses (e.g., hospital bed charges)
 Classes of patients (e.g., women, children, seniors)
 Classes of treatments (e.g., cleft palate repair, birth defects)

All Medical Specialties
Benefit from Philanthropy


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


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Psychiatry
Neurology
Geriatrics
Obstetrics and gynecology
Pediatrics
Plastics
Rare diseases
Etc.
Methods of Grateful Patient Fundraising

In-person solicitations



Current inpatients and outpatients
Former patients – follow-up visits, fundraising events, etc.
Solicitation communications



Letters mailed to home or work physical address
Emails sent to home or work email address
Phone calls made to home, mobile, or work telephones
Patient Selection

Ideal: Grateful patients who have the financial means
to donate.

Likely to be unsuccessful or unproductive:
 Patients with poor health outcomes
 Patients with low income and/or low resources
 Patients with certain insurance status (e.g., Medicaid)
Patient Wealth Screenings

Daily (and even hourly) screening of current inpatients and
outpatients and former patients by in-house development
officers or third-party data connection organizations

Zip code or street address (e.g., St. Louis Country Club)
Property records (e.g., high-value property)
Record of prior giving
Board affiliation
Asset ownership




Association for Healthcare Philanthropy
(“AHP”)
Provider Involvement in
Grateful Patient Fundraising

Low: Physicians and other providers who simply sign
and mail letters that are drafted by development
officers requesting donations

Medium: Physicians and other providers who
participate in general conversations with patients
regarding health care philanthropy needs

High: Physicians and other providers who directly ask
patients for donations
High Physician Involvement
Jennifer K. Walter et al., Oncologists’ Experiences and Attitudes About
Their Role in Philanthropy and Soliciting Donations from Grateful Patients,
33 J. Clinical Oncology 1 (Sept. 28, 2015).
HIPAA Privacy Rule Regulation of Fundraising

November 3, 1999, Proposed Rule: Prior written authorization
would have been required for any and all uses and disclosures of
PHI for fundraising.

December 28, 2000, Final Rule: Authorization not required for
uses and disclosures of demographic information and dates of
health care for fundraising purposes; however, authorization is
required for all other uses and disclosures.

January 25, 2013, Final Modifications: Authorization not required
for uses and disclosures of demographic information, dates of
health care, treating physician, department of service, and health
outcome information for fundraising purposes.
45 C.F.R. 164.514(f)(1)
1. Is the HIPAA Privacy Rule
aligned with patient expectations?
No authorization needed (45 C.F.R. 164.506, 164.512)
 Treatment
 Insurance
 Licensing
 Public health
 Authorization needed (45 C.F.R. 164.508)
 Biomedical and behavioral research
 Selling patient information
 Marketing

HHS’s Model Notice of Privacy Practices (Sept. 16, 2013)
(on page 4 of 8)
University Medical Center (Las Vegas, Nevada)
Notice of Privacy Practices (on page 1 of 4)
2. Can a patient’s condition be revealed?

An employed development officer, a foundation
officer, or a third-party commercial fundraiser who uses
or receives legally permissible patient information to
create a targeted fundraising communication can easily
determine the patient’s general health condition or at
least the health care services requested or received by
the patient.


Treating physician information (e.g., Dr. Hsu, Dr. Daulat)
Department or service information (e.g., Addiction Medicine,
Oncology, Behavioral Health, Plastic Surgery)
3. A close examination of the relevant comments received
by HHS in response to its 2010 proposed rule do not
indicate a shift in public attitudes regarding the appropriate
balance of confidentiality and philanthropy.

~61 comments discussed the fundraising issue
• ~55 of these comments were authored by health care providers, etc.
• ~6 of these comments were authored by privacy advocates, etc.
 Health
care philanthropy and health information
confidentiality should be balanced through a
more express notification of fundraising
activities and a prior authorization requirement,
as is required by the HIPAA Privacy Rule for
research, marketing, the sale of PHI, etc.

Narrow legal question: What is the proper balance
between encouraging health care philanthropy and
maintaining health information confidentiality for
purposes of the HIPAA Privacy Rule?

Broader ethical question: In addition, what is the
proper balance between encouraging health care
philanthropy and preserving the integrity of the
physician-patient relationship and basic patients’ rights?
Ethical Implications of
Grateful Patient Fundraising

Grateful patient fundraising risks distorting the
physician-patient relationship through possible:

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Conflicted decision making
Health care resource allocation injustices
Financial exploitation
Breach of privacy
1. Conflicted Decision Making
Conflicted Physician (and Hospital)
Decision Making

“[The physician] acts primarily
to protect and promote the
interests of the patient and
keeps self interest
systematically secondary …”


The physician’s professional
self interest in raising funds;

The physician’s/hospital’s
interest in raising funds for the
clinical benefit of future
patients; and

The hospital’s interest in
raising funds for the hospital’s
own financial benefit.
Laurence McCullough, A Primer on
Bioethics 7 (2nd ed. 2006).
Typical Hypothetical

A hospital re-schedules a potential grateful patient’s elective or
non-emergency procedure to an earlier date (earlier compared to
other patients who are now pushed back) to induce the wealthy
patient to make a philanthropic donation.

Or, a hospital re-schedules a past donor’s elective or nonemergency procedure to an earlier date (earlier compared to other
patients who are now pushed back) to thank the donor for her
earlier donation (and/or perhaps to encourage a second
donation).

Note regarding the distortion of several physician-patient
relationships and the distortion of the “normal” timing of health
care.
Scott M. Wright et al., Ethical Concerns Related to Grateful Patient
Philanthropy: The Physician’s Perspective,
28(6) J. Gen. Int. Med. 645 (2012).

In-depth interviews with 20 JHSOM physician fundraisers
representing a diverse range of medical specialties. Ninety percent
(90%) of the physicians surveyed identified the impact of gift-giving
on the physician-patient relationship as the most significant ethical
concern associated with grateful patient fundraising.
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“[GPF] taints the physician-patient relationship.”
“[GPF] changes the relationship from one focused entirely on patient wellbeing to one that also focused on philanthropy.”
“I recognize that the philanthropic aspect of the relationship can conflict
with the patient care aspect of the relationship.”
“I try not to compromise patient care when I am disappointed by a patient’s
decision not to donate.”
Physician (Dis)comfort

Comfort: “[Grateful patient fundraising] is a positive
opportunity for me to help raise money from current patients to
help future patients. It’s like helping a grateful patient pay it
forward.”

Discomfort:
 “It’s unseemly.”
 “This is not why I went to medical school.”
 “I don’t want to appear to be pandering.”
 “I’m not in sales, that’s what the development staff is for …”
 “It’s unethical.”
 “It’s illegal.”
Jennifer K. Walter et al., Oncologists’ Experiences and Attitudes About
Their Role in Philanthropy and Soliciting Donations from Grateful Patients,
33 J. Clin. Oncology 1 (Sept. 28, 2015).
2. Health Care Resource Allocation Injustices
(Justice)

A second major concern associated with grateful
patient fundraising relates to justice. That is, individual
and institutional health care providers may prefer
donors over non-donors and health care resources may
be consciously or subconsciously allocated towards
donors, thus improving the diagnosis, treatment, and
health outcome of donors vis-à-vis non-donors.
Justice Hypothetical

If a well-resourced patient makes a donation to a hospital, is it
ethically permissible for the donor to be preferred in a way such
that another non-donating patient is not?


What about scheduling a donor’s elective procedure before a
non-donor’s emergency procedure?
What about giving other perks to the donor, such as in-room
courtesy visits, laptops or iPads for personal use while in the
hospital, other gift items, priority access to private rooms, staff
escorts, personal notes, or expedited follow-up appointments?
Private Room Example

Philanthropy experts have no difficulty recommending the move
of the donor to the large, private room with large windows and
plenty of sunlight under the theory that both patients will
continue to receive the “same level of health care”; it’s just the
“perks” that are different.

Ethicists worry that unequal perks could turn into unequal care.
That is, there are studies that associate perks with patient
satisfaction and/or better health outcomes.
Expedited Appointment Scheduling Example
If
there are no medical issues requiring follow-up care, the level of
care (in theory) will stay the same. If there are medical issues
requiring follow-up care, diagnosis and treatment could occur later
in time for the non-donor.
Some
ethicists are very uncomfortable with expedited
appointment scheduling for donors, reasoning that non-donors will
be given a “second level of care.”
Philanthropy
experts continue to refer to expedited appointment
scheduling as a “harmless amenity [or perk].”
Scott M. Wright et al., Ethical Concerns Related to Grateful Patient
Philanthropy: The Physician’s Perspective, 28(6) J. Gen. Int. Med. 645 (2012).

“I do not like treating patients differently from an egalitarian
perspective, but from a practical point of view I recognize the
generosity of donors and the fact that they are used to a different
level of attention, so I give it to them.”

“I might be late to a meeting to call back a donor, where I might call
a non-donor back after my meeting [even though they] … both
have the same patient care need.”

“It just gives me an uncomfortable feeling … I’m more aware of
when they come to the clinic, and I may be trying harder to be a
better doctor, do my job better. I don’t like that part; I feel that I’m
cheating on my other patients.”
3. Financial Exploitation
(Beneficence/Non-maleficence)
Concern

A third major concern associated with grateful patient
fundraising relates to the financial well-being of the
patient. That is, some grateful patients are vulnerable
and could be financially exploited during the
fundraising process.
Illustrative Examples

Consider an elderly patient who is in the early stages of dementia
and who has limited financial acumen.

Or, consider a stage-III or -IV cancer patient who wishes to
make a donation that is more generous than the patient/family
really can afford.

Or, consider a young adult patient with severe bipolar disorder
who, during a manic phase, wishes to donate money to the
hospital where she received inpatient psychiatric treatment even
though the money could be better* spent on a college education.
Vulnerable Adult/
Financial Exploitation Statutes

E.g., The Washington Abuse of Vulnerable Adults Act,
Wash. Rev. Code § 74.34.020(6)(a) (2015).

“The use of deception, intimidation, or undue
influence by a person or entity in a position of trust
and confidence with a vulnerable adult to obtain or
use the property, income, resources, or trust funds
of the vulnerable adult for the benefit of a person or
entity other than the vulnerable adult.”
Scott M. Wright et al., Ethical Concerns Related to Grateful Patient
Philanthropy: The Physician’s Perspective, 28(6) J. Gen. Int. Med. 645 (2012).

“Dementia is such a devastating disease, and that’s why
I have a big ethical concern about that, I feel there is
financial and other vulnerability there.”
Financial Exploitation Conclusions

A vulnerable patient may worry that her current or future care
depends on the making of a donation and may be pressured into
making a donation even when the donation is beyond the
patient’s financial means (financial exploitation) or when the
donation is otherwise against the patient’s wishes (lack of respect
for autonomy).

The principle of respect for autonomy includes not only the
requirement to acknowledge autonomy (e.g., including respecting
a competent patient’s autonomous donation decision) but also
the requirement to protect those with diminished autonomy (e.g.,
protecting a vulnerable individual from making a donation
beyond her financial means or against her wishes).
4. Breach of Privacy
Privacy Concerns

A fourth major area of concern associated with grateful patient
fundraising is that fundraising that relies on wealth and other
unknown (from the patient’s perspective) and unauthorized
types of screenings can raise privacy concerns.

That is, privacy issues arise when hospital development officers,
institutionally-related foundation officers, and other business
associates gather information about patients, without such
patients’ knowledge, in an attempt to determine or estimate
patient wealth, giving capacity, past donations, and other relevant
information.
Privacy Concerns

AMA Code of Medical Ethics, Opinion 5.059.
Giving Thanks:
The Law and Ethics of Grateful Patient Fundraising
Stacey Tovino, JD, PhD
Lehman Professor of Law
Director, Health Law Program
William S. Boyd School of Law
University of Nevada, Las Vegas