Hospice research in the United States began with studies of the differences between hospice care and care received in traditional settings for the terminally ill. Although these studies examined the impact of care provided by hospice, largely nursing care, such studies were not nursing research. In Canada, Mary Vachon, a U.S.-trained nurse, was invited by the palliative care team at the Royal Victoria Hospital in Montreal, Canada, to investigate stress in the caregivers who composed the palliative care team.
Nursing research about hospice has been conducted using a variety of methodological approaches including qualitative ones: ethnography, observations, semi-structured interviews, and interviews; and quantitative ones: quasi-experimental, questionnaires/surveys, and audit; as well as a combination of methods. Research about hospice covers an array of topics. Topics include organizational methodologies, demographic data, social support, physiological, psychosocial, and spiritual issues, self-care, how patients spend their time, grief, bereavement, studies of nurses and their knowledge, and the impact of hospice care. Some of these topics use hospice for a setting for research but are not about hospice per se. Topics for such studies include an examination of cancer pain in home hospice patients, a comparison of nurses’ knowledge about AIDS by practice
setting, training, and educational programs where the focus is the program and not the hospice patients and nurses, and the grief experience of older women. In this case, the husbands had received hospice care but that was not the focus of the study. Indeed the researcher suggested that a future study might compare the experience of women whose husbands had received such care and those who had not (Jacob, 1996). A similar study in Finland examined the adjustment of relatives after the death of a hospice patient. Again the focus was on the adjustment and not the differential impact of the hospice program on such adjustment. In an attempt to validate the impact of a hospice palliative-care unit on perceived family satisfaction, and to examine the demographics of patients, Kellar, Martinez, Finis, Bolgar, and von Gunten (1996) surveyed 240 families of patients of the program. The most frequent response to an opened-ended question about the advantage of the program was the professional nursing care. Few remarks were made about disadvantages and these had to do with parking-facility expenses, the distance families had to travel, and the potential for patient transfer due to the facility’s designation as an acute-care facility. Of the 92 eligible surveys returned, the researchers found that 88% (81/92) considered the hospice to be very helpful to the patient, 9% (8/92) found the program to be helpful, and 1% (1/92) were neutral. This type of study is representative of a host of studies conducted by hospice programs to assess their audience and the satisfaction with the program.
Hospice referral remains crucial to the viability of such programs. While interest is usually expressed in the attitudes of physicians, Schim, Jackson, Seely, Gruinow, and Baker (2000) examined the attitudes of home care nurses to hospice referral. Attitudes of 160 nurses were assessed with a 15 item survey. Surveys were completed by 75 nurses for a response rate of 46.9%. Home care nurses saw little difference between home care and hospice services. Many (42.6%) of the respondents thought insurance with a hospice benefit was necessary for referral. These and other misperceptions underscored the importance of home care nurses understanding the requirements and components of hospice care. The importance of attitudes as well as knowledge was underscored by a study investigating the factors that increased the likelihood that nurses would discuss terminal ill-ness care and hospice care with patients and families. Cramer, McCorkle, Cherlin, John-son-Hurzeler, and Bradley (2003) found that prior experience with hospice, greater knowl-edge, and religiosity, as well as greater comfort in initiating such discussions, were re-lated to their initiation by nurses.
Another example of program-related re-search is a study on patient-focused menu planning (Fairtlough & Closs, 1996). Overa 4-week period, 108 interviews were conducted related to specific meals. Foods not liked included those difficult to swallow, tough or fried foods, or those with bones. Patients indicated they wanted seafood including salmon and prawns, beef, Yorkshire puddings, yoghurt, eggs, fruit juices, and beer. Three major comments concerned the size of the portions (too large), foods not the right temperature (not hot enough), and the time of food service (preferred later in the day). This study, although used to help nurses understand the research process, had an impact on patient care in the facility where the research was conducted. Although not commented on by the authors, it would be helpful in future research if a larger sample of patients were included in the study where close-ness to death was taken into account in examining food preferences of hospice care recipients.
The needs of family caregivers also have been of concern to hospice providers. V. Harrington, Lackey, and Gates (1996) studied the needs of caregivers of both hospice and clinic patients. Results indicated that the top information need required by caregivers of clinic patients was for honest and updated information and specifically information regarding treatment side effects. In contrast, the information needs of hospice caregivers concerned the symptoms to be expected. These represent the differences in the point in the illness trajectory of the two sets of patients. Spiritual needs were the second most frequently noted for both groups. Personal needs included the need for adequate rest for both groups of family caregivers, but these were not considered to be as important by the family caregivers as the needs for care of the patient. The authors recommend a longitudinal study on this subject. The congruence between patient and caregiver reports of symptom intensity was examined by McMillan and Moody (2003). The symptom intensity of pain, dyspnea, and constipation were evaluated by both patients and their family caregivers. Symptom intensity of all three symptoms were significantly overestimated by caregivers (p = .000). This overestimation is the basis upon which hospice nurses base their clinical decisions. The authors note that this study has implications for the education of hospice family caregivers. Perceptions of the intensity of symptoms by nurses might be expected to be closer to those of their patients than was true for family caregivers. In a study by Rhodes, McDaniel, and Matthews (1998), 53 hospice patients, mean age 69 years, were queried about their symptom experience with the Adapted Symptom Distress Scale Form 2 (ASDS-2). The nurses were also questioned about their patients’ symptom experience. Like the informal caregivers, the nurses in this study overestimated the symptom intensity of their patients. The authors note that this is congruent with some other findings of overestimation but conflicted with findings of underestimation, particularly with regard to perceptions of pain. Indeed, McMillan (1996) demonstrated that pain was still not well managed in cancer patients. The importance of the instrument as a reliable means of assessing symptoms resulted in the incorporation of the ASDS-2 into the clinical practice of the nurses.
Quality of life (QOL) is an important concept in health care. N. Hill (2002) examined both the measurement of QOL and how it might be improved in hospice patients. This study, like the previous one, underscored the importance of nurses understanding how the patient assessed aspects of QOL. This knowledge was a guide to the reflective practice of the nurse and assured clinically significant improvements of care for the patient.
In an exploration of the context for care, Rasmussen and Sandman (1998) investigated how patients in an oncology unit and in hospice spend their time. It was found that family members and nurses spend more time with patients in hospice than in oncology units but the time nurses spend is concerned with “tasks.” If hospice nurses increased their time with patients due to the increased need for tasks, then the context has had little effect on the type of caregiving. The authors note the importance of time spent “being with” patients, not only in “doing for” patients. The time devoted solely to tasks raises the question of whether death anxiety is a significant factor in hospice nurses. Payne, Dean, and Kalus (1998) examined death anxiety in hospice and emergency nurses and found that the latter had higher death anxiety and less support from their peers and supervisors. In another study, support was also deemed to be significant for hospice nurses if they were not engaging in blocking behaviors when confronted with the emotions of patients (Booth, Maguire, Behir, Butterworth, &Hillier, 1996). Research demonstrating the interest and need for advanced education for hospice nurses had the additional benefit of providing information to nurses interested in hospice as a career (Wright, D., 2001). Death anxiety can be reduced for student nurses through educational experiences, as Mallory (2003) demonstrated. The bottom line question for patients and families is whether hospice has a positive impact on quality of life. Using the Hospice Care Performance Inventory, Yeung, French, and Leung (1999) identified six issues in which patient expectations and effectiveness of care were not congruent. Maximization of selfcare and mobility were the two issues with the greatest discrepancy. Patients preferred to do their own self-care rather than have it done to them. Another patient priority included dispelling fear of death which, given that this was investigated with a Chinese population where it is considered a forbidden topic of conversation, is a challenge. Other patient priorities identified included gaining enough sleep, willingness to listen and give reassurances, and providing a satisfying diet.
Interestingly, pain relief was not a high priority for patients. Not only does an approach such as this measure the discrepancy between patient expectations and effectiveness of care, it also has the potential to evaluate the impact of hospice care for patients. Another example of research that examined the impact of hospice care was that by Kabel and Roberts (2003), who examined how the philosophy of hospice providers influences their perceptions of patient personhood. Specifically, this qualitative study examined how hospice staff at two hospice facilities in northwest England approached “normalizing” the symptoms of terminal illness. “Special” patients were found to be related to support of personhood of all patients although the “special patients” were perceived to receive no preferential treatment.
In fact, “special” patients were found to have a positive impact on the caregivers. As noted, much hospice research has examined the impact of hospice on costs, an early concern of government officials when the development of a hospice benefit was being considered. The coming of age of hospice is indicated by the focus on enhancing hospice access and focusing on the quality of remaining life of hospice patients as well as the quality of care received. Research is crucial to assuring that hospice care is all that it purports to be.