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Psychiatrists "have come a long way in 40 years," said former APA president Paul Jay Fink, M.D., APA's representative on the Rosalynn Carter Institute's National Quality Caregivers Consortium, "and we now know we have to address the family and interact with the people who are taking care of the ill person. We have to deal with all the issues that are involved. The field has changed, and the psychiatrist has to help the nonprofessional caregivers know how to do their job and survive doing that job."
Fink, who has worked with Rosalynn Carter for many years on various mental health initiatives including eliminating the stigma surrounding mental illness, outlined ways in which psychiatrists can support family caregivers. First, he noted, psychiatrists must be willing to support the caregivers and actively offer that support to them.
Next, he said, psychiatrists should assess the reality of the caregiver's activities and determine whether the caregiver is overdoing or underdoing it. For example, a mother may be paying so much attention to a chronically disabled child that she neglects the needs of her other children.
Third, the psychiatrist should encourage the caregiver to obtain help from others_such as respite care or other assistance from local agencies_and not feel that he or she "must provide care 24 hours a day, seven days a week," said Fink. In some cases, the caregiver may become so impaired that the psychiatrist may even find it necessary to encourage the caregiver to step down from that role.
"We usually don't discuss the topic of caregiving. Perhaps it's not scientific enough, but it is absolutely essential to be cognizant of your biopsychosocial role," Fink told the psychiatrists in the audience. "We have to be cognizant of the needs of caregivers every day."
APA Trustee-at-Large Carol Bernstein, M.D., discussed an innovative training program at New York University Medical Center whose goal is to help medical students and residents understand the caregiving process and their role within it. Bernstein is an associate professor of clinical psychiatry and director of psychiatry residency training at NYU Medical Center.
"The stress of caregiving has placed moderately high levels of burden on primary caregivers," Bernstein observed, including financial loss, fatigue, loss of leisure time, and work-home conflicts. "To deal with these stressors, caregivers often develop guilt, shame, and denial."
Moreover, she said, they are plagued by the unfavorable experience they've had in dealing with the professional community. "Caregivers often feel that professionals do not listen to them, and this is one of the reasons why it is so important that we focus on medical education and training."
Physician identity, she said, is somehow not congruent with the notion of caregiving. During their medical training, students and residents readily identify as part of their role as physicians such activities as performing physical exams and evaluating laboratory data, but other tasks, such as helping the families of patients, strike them as being outside the realm of their responsibility. Bernstein believes that training early in their medical education is critical to helping medical students and residents understand that their role as professional caregivers is broader.
To this end, a humanistic medicine course was developed at NYU to give medical students an opportunity to discuss issues arising from the care of patients and obtain support and advice. The course is held one hour per week during the medical clerkship. Each group of four to 10 students has an open format led by a variety of health care professionals, including psychiatrists, primary care physicians, and social workers. Among the topics are feeling overwhelmed by patients who are dying and feeling overwhelmed by patients' families. The groups do not function as group therapy, Bernstein said, but serve as a refuge where feelings can be expressed and discussed. NYU also has similar groups for residents.
"Appropriately teaching physicians in training about caregiving and helping them cope with issues of caregiving that they experience themselves will lead to better medical care for our patients and foster the best quality physician-patient relationship possible," said Bernstein.
Douglas M. Lanes, M.D., a private practitioner in Manchester, N.H., talked about the issue of caregiving from a personal perspective_that of a son taking care of his dying father.
While he and his father enjoyed a good relationship, his father "didn't take advice well." As coincidence would have it, Lanes was collaborating at the time on the book Witness to Illness. One of the major concepts of the book is the "empathic partnership," which Lanes decided to try and form with his father.
"One alternative a witness has," he explained, "is to take an active role [in caring for the patient] and thus avoid guilt and depression." In essence, "the caregiver acts as the patient's advocate, but don't expect everyone to accept your offer," which indeed his father did not.
Finally, Lanes said, he and his father "struck a silent deal. I didn't invade him, and he didn't reject or devalue me." His father gave him permission to be a good husband, father, and professional; Lanes gave his father permission to die. He died six months later.
Even though the empathic-partnership approach didn't work with his father, it "seems to be the kernel around which caregiving may have its essence. It is the effort of the witness/caregiver to act with the goal of preventing or diminishing disability and easing pain."
Sympathy, he continued, is "feeling what others feel, [but empathy] is knowing the feeling. The experience of affect impairs or runs the risk of impairing memory, judgment, our ability to think. We want to assist in problem solving more than we wish to become a part of the problem."
Jack Nottingham, M.D., executive director of the Rosalynn Carter Institute of Georgia Southwestern State University, noted that today's health care system is like a three-legged stool: the legs are the care recipients, formal systems of care (such as physicians and social service agencies), and informal systems of care (family members and community volunteers).
"Keeping the stool steady requires a delicate balance between the patients, formal care providers, and informal care providers. Adequate health care depends on a unique partnership between these stakeholders in the health care system."
Caregiving, Nottingham observed, involves primary and secondary stressors. The primary stressors result from the patient's chronic illness, such as forgetting to turn off the stove and losing interest in personal hygiene. "People with certain chronic illnesses don't learn from experience; the caregivers must deal with these issues over and over."
The secondary stressors arise from dealing with the caregiving situation. One example is family conflicts that result when family members can't agree on how to help the ill individual. Another example is the frustration of dealing with health care providers and social service agencies.
While other symposium panelists focused on the negative effects of caregiving on caregivers, Nottingham took a few moments to emphasize some of the positive aspects. Many caregivers, he noted, derive great personal satisfaction and growth from helping someone else. One caregiver he knows is leaving her home state for the first time to attend a caregiving conference in another state. Caregiving can also bring families together and give them an opportunity to cooperate and communicate as they rally around the ill relative, he said.
No one is exempt from caregiving in one form or another, Nottingham observed. "During our lives we'll all be or are or will need caregivers." _C.F.B.
(Psychiatric News, June 20, 1997)