Rudy V. Nydegger, PhD
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.
Some Things That Can Be Done
Psychologists need to be aware that many people are not familiar with the knowledge, skills, and expertise that psychologists can bring to the care of patients and families in end-of-life situations, including hospice. Too often we assume that people know what psychologists have to offer, but in reality they very often do not. Even among professionals in hospice programs, there appears to be a general assumption that as long as mental health needs are being addressed in some manner there is no reason to approach psychologists for additional help. There is clearly an opportunity for us to educate people about the field of psychology and about what we can offer. In recent years, APA has made a concerted effort to inform and educate people about psychology and the variety of services that psychologists can provide. As important as these efforts are, there is room for more to be done at the national, regional, state, and local levels. Psychologists can speak to public, educational and civic organizations, as well as be available to the print and electronic media. Not only are these smart ways to build a practice, they are an excellent means to serve the public’s needs by increasing their awareness of psychological issues and showing how psychologists can be of help. In addition, many newspapers, magazines, and other media look for psychologists to be interviewed on a variety of topics, and many welcome articles on timely and relevant topics. Psychologists may need to nurture and develop relationships with these organizations to make opportunities materialize, but the effort will usually pay off.
In terms of specific opportunities for psychologists in the hospice setting, Kastenbaum (2000) suggests that psychologists pursue research opportunities in end-of-life care. Some important topics that might be investigated include:
- Evaluating the goals of providing counseling for the dying patient.
- Defining the role(s) of the counselor or therapist in the provision of care for the dying patient.
- Examining and clarifying the role of the dying patient in making decisions about his/her life and care.
- Explaining and discussing the dying process as something that is psychologically meaningful and important.
- Gaining an understanding and discussing the whole situation in the program of care.
- Explaining the counseling intervention and its place and potential contribution to the total program of care.
In addition to these suggestions, psychologists can conduct research to evaluate programmatic or therapeutic interventions in general as well as broader organizational issues. For example, what is the impact upon staff who work with dying patients, and how might the staff be supported? Or, how effective is the volunteer/staff training program, and what can be done to improve it? Obviously, there are numerous opportunities to conduct research that can be very important and beneficial.
In addition to doing research, psychologists can be involved with the direct care of patients and family members, consult on difficult cases, pursue membership and leadership on the operating boards of hospice organizations, design and conduct staff support and training programs, perform management and organizational consultation, as well as assist individual staff members with stress and burnout issues. However, one major problem that often prevents psychologists from becoming involved with a hospice program is their lack of experience working with the hospice population. As in any specific area of care, those providing hospice care can be wary of outsiders who may be well-intentioned and competent but who do not fully understand what working in this area entails. Regardless of the training and education psychologists have received, if they have not worked directly with hospice patients it is unlikely that they will be sought for advice or care except on a specific issue that might not be hospice-related. As Judith Gordon of the Washington State Psychological Association stated, “We have to start almost from scratch in both educating ourselves and networking on an interdisciplinary level, and this will take energy, time, and perseverance” (Hartman-Stein, 2001, p. 12). Marwit (1997) suggests that health psychology, behavioral medicine, and thanatology (the interdisciplinary field that works with death and dying) are areas where psychologists can work with medical professionals to provide the best possible care for dying patients and their families. To be effective, psychologists need to have knowledge, training, and experience in working with medical problems and treatments, with patients who are seriously ill and dying as well as their families, with working in a medical environment, dealing with palliative care, as well as the ability to deal with grief and bereavement issues, and experience working with a multidisciplinary team (DeAngelis, 2002).
Marwit (1991) also suggests that psychologists who wish to work in this area must be familiar with the literature on death and dying because dealing with clients in this setting is quite different from working in traditional clinical and counseling settings. He also feels that psychologists must be knowledgeable and competent in behavioral medicine and family systems theory. More specifically, they need training in thanatology, grief therapy, and group dynamics (Marwit, 1997). If psychologists can add to their existing experience some additional training in end-of-life care (unless they already have it), they can make a substantial difference in the care of people in these most difficult circumstances. Significant and meaningful training opportunities are available to interested psychologists in the form of books, journals, workshops, continuing education opportunities, conferences, becoming a member in relevant organizations, and even developing mentoring relationships with senior colleagues.
It is important that even a well-trained and knowledgeable psychologist develop a connection to a hospice program if he or she desires to become involved. Ask for a meeting with the Executive Director and the lead professional in the psychosocial area of care (usually a social worker) in a local hospice program. Express an interest in learning more about their program, and ask about the possibility of participating in their volunteer training program. Following training, explore opportunities for involvement on committees, boards, etc. Offer to conduct training programs, suggest some research topics, or ask to be assigned to a patient/family as a volunteer. As the psychologist gains knowledge and credibility and is not perceived as encroaching on others’ turf, it will be easier to find opportunities for professional involvement, and even if only to become an external professional to whom special referrals are made. Psychologists can also offer considerable assistance in the area of staff training and development, as few hospice programs have an adequate structure or processes for dealing with staff issues that arise in this type of environment.
One of the consistent obstacles in the provision of psychological care in the hospice environment is reimbursement. While psychologists may need to start with a program by volunteering, it is important that they pave the way for the provision of reimbursed psychological services. Typically, hospices are reimbursed by an insurance company or other third-party payer on a per diem basis for each patient/ family unit, with all of the usual care being paid for from one source. Therefore, if there is not a paid psychologist on the staff of the hospice program, it is not likely that a hospice will pay for a psychologist to provide additional care. This is particularly true if the hospice program is not aware of the range of services that a psychologist can offer. While volunteering is an excellent and important type of involvement, professional psychological services should be reimbursed, and finding mechanisms to pay for professional services is not as difficult as it might first appear. Frequently, psychologists who approach hospices are met with the position that there is no way to pay for their services and the discussion ends. This is one reason why beginning as a volunteer is one way of becoming involved, developing credibility, and getting to know people in the program. However, there are also many ways to approach the reimbursement issue.
Probably the simplest way to be reimbursed for psychological services is to join the staff of a hospice program on a full- or part-time basis, although most hospice programs cannot afford a full-time doctoral level psychologist, and, in fact, may not need someone with that level of training on a full-time basis. However, part-time involvement may be an ideal opportunity for a practicing psychologist to expand his/her practice into a new area. When opportunities for this type of involvement arise, they should certainly be explored. In addition, psychologists can become involved as a consultant on specific, time-limited projects where funding may be available for a special project. Similarly, a psychologist can work with a hospice program to pursue grant funding for a special project or a research opportunity. It is also true that psychologists who work in facilities (e.g., VA hospitals) that have hospice programs on site could investigate the possibility of working in the hospice program as part of their responsibilities in the facility. The hospice program would not incur any additional expenses, and the psychologist would receive payment or salary for his/her professional services.
Other opportunities might arise for offering services to patients with unusual needs that are not a covered service within the hospice program or are not available from existing hospice staff (e.g., nonpharmacologic pain control), and a psychologist could bill separately for services on an outpatient basis that would be outside of the per diem reimbursement. For example, if a family member presented with a complicated bereavement situation that is more than could be managed through the normal hospice programs, a psychologist’s services could be billed separately as a non-hospice service and would not be taken from the per diem. Similarly, if a patient or family member has a pre-existing condition that is not due to the terminal condition of the patient, and he/she was being treated for this condition prior to involvement with the hospice program, this service could continue to be billed separately from hospice care, possibly through Medicare Part B. Finally, by using the new health and behavior assessment and intervention codes which refer to conditions with diagnoses of medical necessity, a psychologist might get involved and bill for services to help patients deal with their symptoms and cope with their conditions (Haley, et al., 2003). These are just a few suggestions that offer psychologists paths for expanding their practice and accessing opportunities for reimbursement.
Hospice and end-of-life care are becoming more common in the health care environment in the United States and in many areas of the world. People are living longer and co-existing with serious illness far longer than they ever have, which means an increased number of elderly patients with chronic and terminal conditions who need care during the last phases of life. Since psychosocial care is such an important aspect of care under these circumstances, it is vitally important that competent, trained professionals be available to meet these needs. It has been demonstrated that psychologists have much to offer in this type of setting, but it is also clear that psychologists are often not included in hospice and end-of-life care. There are many things that can and must be done to improve this state of affairs. Patients, families, and hospice programs need what psychologists have to offer, and there are many psychologists who would enjoy and appreciate the opportunity to build their practice in such an important and personally rewarding area of care. Hopefully, more psychologists will pursue these opportunities, and benefit hospice programs, patients, and their families.
Rudy Nydegger, PhD is Professor of Management and Psychology at Union Graduate College and Union College in Schenectady, NY. He also has a private practice and is Chief of the Division of Psychology at Ellis Hospital in Schenectady. He has served on the NY State Board of Psychology and has also been President of the Psychological Association of Northeastern New York, and also of the New York State Psychological Association. He has over 35 years of experience in teaching, research, practice, consulting, and writing. He has been credentialed by the National Register since 1975.
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