As part of her daily rounds with the oncology team, psychologist Donna Kwilosz, PhD, asks her fellow health professionals to share their observations about each patient's psychological well-being. Encouraging the team to be aware of patients' psychological health has had significant results, says Kwilosz, associate director for psychosocial oncology at the University Hospitals of Cleveland's Ireland Cancer Center.
"Once you establish that what you do is valuable for patients," Kwilosz says, "I've found that physicians and nurses will incorporate [psychology] into the care of patients."
But psychologists like Kwilosz are too rare. In contrast to other health or mental health professionals, psychologists have been scarce in the growing area of end-of-life care, those involved say.
"Psychologists have tended to overlook end-of-life issues because we've been so involved in other areas, but we can't afford to overlook them anymore," says psychologist Judith Stillion, PhD, chair of an APA ad hoc committee on end-of-life issues and director of the Center for Aging and Retirement Education at Kennesaw State University. "The largest generation ever is facing the mortality of its parents, as well as its own mortality."
APA's Ad Hoc Committee on End-of-Life Issues, which first met in April 2001 and will run three years, is aggressively tackling psychology's absence in end-of-life care, hoping to get more psychologists involved in an area it believes needs their expertise.
"Our mission is to move the profession of psychology into a stance where psychologists know and understand the importance of end-of-life issues, so that some of them will include it in their practices in an informed and knowledgeable way," says Stillion.
What psychologists add
Research suggests there are plenty of reasons for psychologists to beef up their involvement. For example, the SUPPORT study--a landmark $28 million effort funded by the Robert Wood Johnson Foundation--found that Americans often die alone, in pain and hooked up to invasive medical equipment. The most often-cited paper on the study was reported in the Journal of the American Medical Association in 1995 (Vol. 274, p. 1591-1598).
Those interpreting the results noted a collective denial in the popular culture, the medical profession, families and patients about dealing with issues of death and dying, as well as a resistance to asking questions and making decisions that could reduce the fear of the dying process.
"It made us aware that this is a public health crisis," says psychologist Dale Larson, PhD, an associate professor at Santa Clara University who has worked extensively in the hospice field for more than 20 years. "We're not getting enough people into hospice and palliative care--only one out of three people who need it are receiving it."
To get more psychologists involved in these issues, APA's Ad Hoc Committee on End-of-Life Issues has several projects under way. They include:
* Assessing education on end-of-life issues. The committee is sending out surveys to assess the state of psychology training, education and continuing professional education (CPE) programming in end-of-life issues. The survey findings should help highlight gaps--which committee members suspect will be substantial--and provide ideas on how to fill them.
* Creating a "train-the-trainer" program on end-of-life issues. The project will initially be run by committee member James L. Werth Jr., PhD, of the University of Akron, who leads CPE programs on end-of-life issues, and the committee's APA staff liaison, John Anderson, PhD. Anderson is writing a proposal to ask for funding from a major philanthropical foundation that's funded similar projects for physicians and nurses.
* Creating a directory of psychologists with an interest in end-of-life issues that will be used to promote research and networking.
* Creating public education brochures on different topics in end-of-life care that will include APA's logo and be available for mass distribution. Committee member Sharon Valente, PhD, of the University of Southern California and the Los Angeles Department of Veterans Affairs are coordinating the project.
* Writing a journal article on clinical roles for psychologists in end-of-life care. The article, co-written by committee members Kwilosz and William E. Haley, PhD, and two other experts, is being prepared for an APA journal.
* Producing a book of abstracts on end-of-life research to be published by APA. Committee member Robert Neimeyer, PhD, a grief and bereavement scholar at the University of Memphis, and APA's Anderson will edit the volume, which will also evaluate the literature with a team of co-authors and help sharpen the research agenda in the field, Neimeyer says.
A new paradigm
Psychologists already involved in the hospice- and palliative-care movements say the model, in many ways, squares with their own values and training. Attending to patients' holistic needs and working with families, for example, are aspects of hospice care that psychologists are well-versed in, too.
"The hospice philosophy is very compatible with the worldview of psychologists who have an expertise in behavioral medicine," says Haley, a researcher and clinician in gerontology and hospice care at the University of South Florida. "Both perspectives agree it's a mistake to look at problems solely from a biomedical perspective, without considering such issues as the patient's social supports, religious or spiritual beliefs and psychological state."
And, he says, "psychology has the potential to bring an empirical base to the comprehensive care that hospice gives."
Psychologists also bring unique strengths to end-of-life care, including the ability to conduct psychological assessments, build teams, evaluate programs and facilitate communication among the variety of players involved--patients and loved ones, patients and medical staff. And they have much to offer in pain management, a critical aspect of treating terminally ill people from the palliative-care perspective. Besides helping with medication management and treatment compliance, they're experts at techniques like clinical imagery and biofeedback, which can help to reduce pain.
But, to become full-fledged end-of-life specialists, psychologists need specific knowledge, those involved emphasize.
"Psychologists trained in the old mental care health model may not have the knowledge or skills to do this without getting retraining," says Haley. "The field requires independent knowledge about medical problems, treatments, the patient population and the ability to work quickly in a health-care environment." In addition, psychologists need specific training in palliative care and grief counseling, he notes.
Kwilosz's position at the cancer center in Cleveland gives a feeling for what this kind of work is like. "I wear many hats," she says, from training staff on psychosocial issues, to running groups for cancer patients and their families, to counseling patients who experience more serious psychological difficulties. "That's the very exciting part of this work and also the challenging part."
Another key aspect of the field that may be new for psychologists is working as part of an interdisciplinary team. "We're all trained in different kinds of ways," Kwilosz says. "I have knowledge that my physician colleagues don't and vice versa. We all complement each other."Tori DeAngelis is a writer in Syracuse, N.Y.
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