Hospice research: Challenges, opportunities and rewards

Abstract

Hospice and research have had a long-standing and, at times, strained relationship. Early studies, most notably the National Hospice Study, were instrumental in the passage and ongoing support of the hospice Medicare benefit and the growth and development of the hospice movement in the United States. Increasingly, hospices are involved in research as a result of managed care and other demands for outcome measures. Yet, it is often difficult to define and measure much of what hospice is about--quality of life, social support, interdisciplinary intervention. This article discusses some of the ethical, organizational, psychosocial, and physical challenges inherent in hospice research; identifies research opportunities through collaborative efforts with team members, other hospices, and university researchers; and illustrates some of the rewards associated with hospice research.

Patient and caregiver satisfaction with end-of-life care: Does high satisfaction mean high quality of care?

“…It is important that relationships in the community be established and nourished to enhance education and research about quality of care, and to improve the clinical practice of students, faculty, and staff. Kovacs 16 has addressed the need for collaboration between hospice personnel and university researchers in evaluating hospice care, noting that hospice and research have had a strained relationship over the years.…”

Vulnerable Research Participants: Anyone May Qualify

“…Therefore, a secondary role of practitioner was continually present. Benoliel (1975) noted that research with dying persons creates a unique set of circumstances in which the research role becomes secondary to the nursing role (Dean & McClement, 2002;Kovacs, 1998). When potential or active participants were found in severe distress, the nurse as patient advocate was without question the primary role (Raudonis, 1992).…”

Issues and Dilemmas in Conducting Research with Vulnerable Home Hospice Participants

“…Although the investigator's primary role was nurse researcher, the fundamental charge was to protect human subjects; hence, a secondary role of practitioner was always in mind. Investigations with dying people create a unique set of situations (Benoliel, 1975b), in which the research role becomes secondary to the nursing role (Dean & McClements, 2002;Kovacs, 1998). When potential participants were found in severe physical distress, the nurse as patient advocate became the primary role (Raudonis, 1994).…”

“…In their review of ethical issues in conducting research with palliative care populations, Kristjanson, Hanson, and Balneaves (1994) found that almost half of the projects included participants who were in advanced stages of illness. Dying people suffer diminished physical and, often, impaired cognitive and psychological states (Kovacs, 1998;Kristjanson, Hanson, & Balneaves, 1994); therefore, participant attrition is an expected occurrence (Dean & McClement, 2002;Dush & Cassileth, 1985, Kinzbrunner, 1995. As a result, researchers are often torn between securing an adequate study population and enrolling less than competent participants (Kristjanson et al, 1994).…”

“…Even when researchers follow the code of ethical conduct, dilemmas sometimes occur in conducting research with endof-life populations (Kovacs, 1998). The literature indicates varied opinions regarding the ethics of conducting research with palliative care populations (Dean & McClement, 2002).…”