Ethical guidelines for collaboration
When working with patients, making sure that six factors are met will help us do a better job of ensuring that the relationship with caregivers is productive for all three parties involved. Here is a listing:
• Respect the patient’s dignity, rights, and values in all patient-physician-caregiver interactions.
• Recognize that physician accessibility and excellent communication are fundamental to supporting the patient and family caregiver.
• Recognize the value of family caregivers as a source of continuity regarding the patient’s medical and psychosocial history.
• Facilitate end of life adjustments for the family.
• Ensure appropriate boundaries when the caregiver is a health care professional.
• Ensure the caregiver receives appropriate support, referrals, and services.
Our failure to use patient and family-centered care (PFCC) is tied to attitudinal, educational, and organizational barriers. The first attitudinal barrier is the expectation that families will be unreasonable. The second is that families will compromise confidentiality. The third is that physicians are largely unaware of research on the benefits of PFCC. Finally, physicians believe that PFCC is time consuming and costs too much.
Educational barriers include the lack of skills needed for collaboration among professionals, administrators, patients, and families.
Organizational barriers that get in the way of PFCC are the lack of guiding vision, the top-down approach with insufficient effort to build staff commitment; grassroots effort that lacks leadership, commitment, and support; scarce fiscal resources and competing priorities; and the absence of a funded coordinator.
Psychiatric illnesses are chronic medical illnesses. As more people have experiences as patients and caregivers, the pressure to involve family members such as Ms. Stout increases. Where does the resistance to involving family members in patient care come from? There is an unfounded, unspoken fear on the part of health professionals that families want something that the health care provider cannot guarantee – that their relative "will get well and everything will be fine." Health care providers might limit what they say to family members in order "not to upset them." If the family members perceive that they are being brushed off and dismissed, they can develop feelings of apprehension. A small upset or misunderstanding can then unleash repressed feelings, resulting in family members lashing out. When health care teams include the family and develop collaborative relationships with families, the likelihood of this kind of conflict is reduced.
Resistance also comes from the perception that family involvement is not necessary for patient care. Many of the consequences of isolating patients from their family are invisible, such as relationship strain, role changes, and caregiver burden. The reality is that, for patients such as Ms. Stout’s son, his mother’s involvement helps his medical team do a better job of managing his care.
It is time that psychiatry, and specifically the American Psychiatric Association, develop ethical guidelines outlining how to work with families of patients with chronic psychiatric illness. At the very least, we should sign on with other medical specialties by endorsing the American College of Physicians’ ethical guidelines described above. We have lagged behind the rest of medicine by failing to address this important issue.
This column, "Families in Psychiatry," appears regularly in Clinical Psychiatry News, a publication of IMNG Medical Media. Dr. Heru is with the department of psychiatry at the University of Colorado at Denver, Aurora. She is editor of the recently published book, "Working With Families in Medical Settings: A Multidisciplinary Guide for Psychiatrists and Other Health Professionals" (New York: Routledge, 2013).