The Register Report, Spring 2009 Hospice and Psychology: The Need and the Opportunities by: Rudy V. Nydegger, Ph.D. Return to Table of Contents

What is hospice care? Most professionals have heard about hospice in their communities, and many of them have been exposed to a hospice program due to a family member or friend receiving hospice care. Hospice has existed in the United States for a number of decades, the idea having come from Great Britain when Dame Cecily Saunders, generally regarded as the founder of the modern hospice movement, introduced the concept to America. Fundamentally, hospice is an interdisciplinary program of care for people suffering terminal conditions and who have a limited prognosis. However, the modern hospice defines the unit of care as the patient and the family, and tries to provide the patient’s care in the context of his or her family or care unit. To the extent that they are able, hospices help the family deal with issues associated with the dying and death of their family member. One major aspect of hospice care is that the multi-disciplinary treatment team provides relevant health care professionals, psychosocial professionals, spiritual/religious professionals as is appropriate and desired, and well-trained volunteers who are assigned to each patient/family.

Rather than being concerned only with dying, hospice is a program about life and about living life to its fullest even at the end. There are many misconceptions about hospice including the idea that hospice is about euthanasia. It is not. A concern voiced by some is that hospice simply turns dying patients into drug addicts rather than treating their condition. This is not true either. Hospice care is designed for patients (and their families) when the patient’s condition is terminal, when the person is not expected to live much longer (usually 6 months or less), and when he/she is not receiving active curative treatment for his/her condition. Typically, hospice patients are provided palliative care which is intended to control symptoms and to keep the patient as comfortable and alert as possible.

There are numerous studies that demonstrate that hospice care significantly improves the perceived quality of care by patients and families (Baer & Hanson, 2000; Tolle, et al., 2000). One study in Sweden found that dealing with the psychosocial needs of patients was more important than just managing their physical needs in determining whether or not a patient is able to die at home or in the hospital (Thorén-Todoulos, 1999), and it has been demonstrated that paying attention to the psychosocial needs of the family members when a patient is critically ill and dying is likely to reduce psychological and medical problems in those family members later (Chentsova-Dutton, et al., 2000). It has also been demonstrated that highly stressful caregiving increases mortality risks (Schulz & Beach, 1999). Clearly, when dealing with patients and families in hospice care, the psychological and social needs of both patients and family members must be met in order to improve the quality of life throughout the dying process.

In addition to the quality and appropriateness of care, a number of studies have examined the cost-effectiveness of hospice care resulting in mixed findings and unclear conclusions. Some studies find hospice care more cost effective than traditional medical care, and others find little difference. These differences may be due to the differences between hospice programs, the differences in the availability of appropriate care for dying patients, differences in how the professional communities view and utilize hospice services, and many other factors as well. While sometimes the cost effectiveness of hospice care is a confusing picture, there is a consistent finding that hospice care does not increase the cost of caring for the dying person and his/her families. If anything, it will likely decrease the cost. Keeping patients at home as long as possible and, hopefully, allowing a patient to die at home in a comfortable and familiar environment certainly saves the cost of in-patient treatment in an acute care hospital as well as respects the wishes of the patient and family. Judicious use of trained volunteers will also decrease costs and improve the quality of patient/family care.

In addition to possible cost savings and the increased quality of care, as perceived by patients and family members, there is evidence that hospice care actually increases survival time for many patients (Connor, et al., 2007). While the goal of hospice is neither to shorten nor lengthen a person’s life but rather to improve the quality of his/her remaining time, it is interesting that hospice care does tend to improve the length of survival for many patients.

It is clear that hospice care is a reasonable alternative for patients and families, but it is equally clear that hospice care is not appropriate for all patients and families. The decisions for end-of-life care should always be based on the best interests of the patient and should provide the highest quality and most appropriate type of care for each individual. Sometimes that will be hospice care and sometimes it will not.

Psychologists and Hospice

The evidence suggests that hospice patients and families can significantly benefit from having their psychosocial needs met during the time when a patient is approaching death. Many writers have asserted that psychologists have much to offer in the care of terminally ill and dying patients (e.g., Aiken, 1991; Haley, et al., 2003; Kastenbaum, 2000; Marwit, 1997; Nydegger, 2008). Unfortunately, psychologists (with a few very important exceptions) do not have much of a presence in the hospice movement, and this has not changed much over the years. Efforts have been made to evaluate the involvement of psychologists in end-of-life care, and in 2001 the American Psychological Association (APA) formed an Ad Hoc Committee to evaluate the contribution and potential contributions of psychologists in end-of-life care (Hartman-Stein, 2001). The conclusion was that psychologists can and should bring their unique perspectives to dealing with end-of-life issues, including conducting empirical research to better understand the psychological aspects of caring for terminal patients and their families and to evaluate the participation of psychologists in hospice care (DeAngelis, 2002). However, while many believe that psychologists have much to contribute to hospice care specifically and end-of-life care generally, it appears that “small numbers of psychologists are the unsung workers in hospice care, going virtually unnoticed amid a collection of counselors, social workers, chaplains, nurses, and volunteers” (Hartman-Stein, 2001, p. 12).

One study examined the participation of psychologists in hospice programs and sampled programs across the U.S. (Nydegger, 2008). This study compared the results to an earlier study that was conducted in 1990 (Nydegger, 1992) to evaluate the changes in participation of psychologists in hospice care over the years from 1990 until 2003 when the data was collected for the later study. The data collected in 2003 found that of the 94 programs that responded only seven had a psychologist providing some of the mental health care, and estimated that psychologists only provided 17.43% of the mental health care provided in those programs. In fact, the professions that were more involved than psychologists were Social Workers (67% of programs responding), Pastoral Counselors (46%), and Nurses (39%). Interestingly, even volunteers (12% of programs responding) were more frequently used to meet mental health needs than were psychologists. One other question asked: to which type of professional would a patient or family member be referred if the hospice program couldn’t meet their needs? Of the 94 programs surveyed, only five said that they would refer to a psychologist and 71 programs said that they would refer to a social worker.

In this same study, some comparisons were made to a sample of hospices that was drawn in 1990. In the earlier sample 13 programs of the 83 that responded to the questionnaire (15.67%) said that psychologists provided some of the psychosocial care for their patients and families; this was compared to the seven out of 94 programs (7.4% of the programs responding) that said that they used psychologists in the 2003 sample. Although the difference was not significant it certainly can be asserted that between 1990 and 2003 there was no increase in the utilization of psychologists in hospice care among the programs that responded to the survey. Further, in 2003 five programs (5.3%) said they would refer a patient or family member to a psychologist, while in the earlier sample nine out of 83 programs (10.8%) said they would refer to a psychologist. This difference was not statistically significant. Thus, over the years 1990 to 2003 there was no increase in the number of hospice programs that would refer patients or family members to a psychologist who was not on their staff. The percentage of programs in both samples that would refer to a psychologist was unfortunately small.

These data are very clear and the findings have been consistent over time. Psychologists are not widely utilized to provide care for patients and families in a hospice environment, nor do hospice programs typically perceive psychologists as the mental health professional of choice outside of the hospice program. Clearly, most of the mental health needs of patients and families in hospice care are provided by social workers or others on the hospice staff. It is encouraging to see that hospice programs are concerned about psychosocial needs and that professionals and volunteers are seeing to those needs. Unfortunately, however, the unique skills and perspectives that psychologists can offer hospice patients and families are woefully underutilized by most hospice programs and that should be addressed by psychology and psychologists.

It is important and significant that APA has encouraged and supported psychologists becoming involved in end-of-life care and has taken a leadership stance in this effort. Likewise, there are a number of involved psychologists who have made some significant contributions to this area, and we need to encourage more psychologists to do the same. There are also some very forward-thinking universities and training programs that are making training in the hospice setting an option for their students, trainees, interns, and post-doctoral fellows. Further, as private practice and consulting becomes more challenging and competitive, getting involved in the hospice, palliative care, and end-of-life areas is a practice building opportunity that can be beneficial to psychologists who have an interest and expertise in this field. While there are many opportunities in all areas of the country, psychologists will need to be educated and trained in this field to be able to get involved and contribute. continue

 

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