With greater scrutiny of the ethics of interchange among health care providers, academic institutions, researchers, and outside entities, the discussion of philanthropy and academic psychiatry by Roberts in this issue of the Journal is a welcome analysis of patient-inspired donation. It is easy to agree that a patient’s therapy must take first priority in such an exchange. However, the analysis and adjudication of the ethical issues are complex.
Academic psychiatry is a comparatively poorly resourced medical specialty. There are many examples of how mental illness and psychiatry are shortchanged, including long-standing inequities in reimbursement and the absence of procedures with a substantial revenue source, which are often found in other medical disciplines. Funding for academic psychiatry from other sources has been limited by a pervasive, although gradually diminishing, stigma. Many foundations explicitly restrict grants or gifts to psychiatric programs. Also, some individuals may avoid providing philanthropy to the field of mental illness because of their fear of identifying themselves and being personally affected by the cultural stigma associated with mental illness.
With reduced public funding and limited foundation support, patient-inspired philanthropy serves as an invaluable alternative to cover much of the deserted areas of social need. Many families, patients, and friends are inspired to give, on the basis of the experience of care given to mentally ill patients whom they know. Their generosity is an important aid to support research, education, clinical care, and destigmatization. Important too is the satisfaction received by patients, families, and friends from this contribution to the effort to overcome the ravages of mental illness. This activity is not unlike the situation in many other fields of medicine and other areas of human endeavor. Individuals often are most concerned about issues that have pertinence to themselves and want to foster greater social efforts to ameliorate these problems. It is important that psychiatrists act appropriately to encourage, rather than discourage, such initiatives.
Nevertheless, care must be taken. Psychiatric treatment involves powerful transference that can lead to actions that, as Roberts appropriately asserts, can be harmful to the patient. Care must be taken by therapists, Roberts explains, to understand and help prevent unrealistic expectations on the part of a donor or patient. The subtleties with which these may be expressed and manifested are great in number. Detection of these transference-stimulated actions requires very careful attention, unbiased by the monetary implications.
Within most academic institutions there exist considerable institutional safeguards for donors. Financial arrangements are handled by staff who are not part of the treatment team and who can independently assess the appropriateness of the donation and help articulate its intentions. Best practices followed by most academic institutions include periodic audits to ensure that monies are used for their intended purposes. For faculty who work in these institutions, it is also important to advocate the role of psychiatry. Any fund-raising effort by a broad-based health provider institution that includes psychiatric care in its treatment program should also include psychiatry and mental illness in its brochures and general communications to the public. In other words, philanthropy should not be an area in which mental illness is given short shrift by provider and fund-raising organizations.
Large and successful organized efforts have developed in the last several decades to raise money specifically for psychiatric causes, including those of NARSAD (formerly the National Alliance for Research on Schizophrenia and Depression), the National Alliance on Mental Illness (NAMI), the Mental Health Association, the American Suicide Foundation, and APA itself. Institutional or organizational gifts such as these or ones to academic and clinical institutions are less likely to complicate the relationship between patient and therapist because of the separation between direct treatment and donation. NARSAD, as an example, receives donations from thousands of people because of their personal or familial experience of pain from psychiatric illness. As a result, NARSAD has become a substantial and important force in the fight against mental illness, as have NAMI and other citizen-led organizations.
In our personal work with hundreds of families, we have learned much about the motivation and expectations of families who donate substantially to research and treatment of mental illness. In almost all cases, families and patients are fully aware of the limitations of the current state of treatment of mental illness. They do not believe that their gift to any particular effort will improve treatment for themselves. Nor do they seek such outcomes in deciding to give. Rather, they believe that there is substantial need to improve treatment and that their philanthropic responsibility is to build new research and treatment capacity. They often prefer very basic research, which is the least likely to have immediate benefit, and they often prefer young investigators, in recognition of the likelihood that meaningful discoveries may take more than one generation of investigators.
Donors of substantial amounts to mental illness research make their decisions in the context of the sophisticated and successful financial planning that has enabled them to acquire their assets. Donations come from the portion of their assets that they have already earmarked for philanthropy. Where that philanthropy might be directed is the question for which they seek guidance from psychiatrists. Psychiatrists in whom they have already entrusted the care of family members are then natural persons to ask for such information. A major value of the principles articulated in the article by Roberts is to help psychiatrists feel confident that this role does not violate their other ethical responsibilities to their patients and their families.
A test of whether giving is an exploitative act is the behavior of families after the gift, since we know that they do not receive personal benefit. Most families give repeatedly and often increase their gift. They express satisfaction that their cause, mental illness, is now being addressed, and they often gain comfort and support from the sense of joining with others in that mission.