Adapting an Intervention to Address Barriers to Pain Management in Hospice: Formative Research to Inform EMPOWER-D for Dementia Caregivers.

Background: Nearly half of more than 1.7 million older Americans who receive hospice care each year have a primary or comorbid diagnosis of dementia. Pain is often undertreated in this patient population owing to myriad factors, including unmet informational needs among family caregivers. Objective: We sought to inform the adaptation of a pain education intervention for hospice family caregivers to the context of dementia by eliciting feedback on the educational content covered in adapted intervention materials. Design: We conducted a multimethod, formative research study to inform the adaptation of an existing, evidence-based intervention. Setting/Subjects: The study included a purposively recruited sample (n = 33) of hospice professionals (n = 18) and family caregivers (n = 15) from across the United States. Measurements: Participants quantitatively rated the importance of each of the eight pain concerns presented in the adapted intervention materials (1 = not important to 3 = very important) and provided qualitative feedback via Zoom interview on the acceptability, clinical accuracy, and potential benefits of the adapted content. We analyzed quantitative data via descriptive statistics and qualitative data via content analysis. Results: Participants rated the adapted educational content as highly important (rangemean = 2.56-3.00), particularly regarding concerns about caregivers' pain assessment, communicating with the hospice team about pain, and addressing misinformation regarding pain medication outcomes. Participants also provided suggestions to strengthen specific educational messages to improve comprehension and uptake. Conclusions: Findings support the continued development and testing of the adapted intervention.

Potential Neuroprotective Effects of Dietary Omega-3 Fatty Acids on Stress in Alzheimer's Disease.

BACKGROUND: A large number of individual potentially modifiable factors are associated with risk for Alzheimer's disease (AD). However, less is known about the interactions between the individual factors. METHODS: In order to begin to examine the relationship between a pair of factors, we performed a pilot study, surveying patients with AD and controls for stress exposure and dietary omega-3 fatty acid intake to explore their relationship for risk of AD. RESULTS: For individuals with the greatest stress exposure, omega-3 fatty acid intake was significantly greater in healthy controls than in AD patients. There was no difference among those with low stress exposure. CONCLUSIONS: These initial results begin to suggest that omega-3 fatty acids may mitigate AD risk in the setting of greater stress exposure. This will need to be examined with larger populations and other pairs of risk factors to better understand these important relationships. Examining how individual risk factors interact will ultimately be important for learning how to optimally decrease the risk of AD.

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19.

CONTEXT: Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic. OBJECTIVES: Researchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020. METHODS: Researchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis. RESULTS: Hospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective. CONCLUSION: Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.

End-of-Life Care: Hospice Care.

Hospice care consists of palliative care provided at the end of life that provides comprehensive comfort care for patients and support for family members. This includes medical care, pain management, and emotional and spiritual support tailored to patient needs and wishes. Eligibility rules require a physician to determine that the prognosis for the patient involves an estimated life expectancy of 6 months or less if the illness runs its expected course. Family physicians can be key partners in helping patients and family members transition when hospice care best matches patient goals. Hospice care is delivered by an interdisciplinary team, including family physicians, physician medical directors, nurses, social workers, counselors, home health aides, and trained volunteers. Although most hospice care is delivered in the home of the patient, it also may be provided in long-term care facilities, hospice facilities, and in the hospital when needed for symptom control. Hospice care has been associated with better symptom relief, better achievement of patient end-of-life wishes, and higher overall rating of quality of end-of-life care compared with standard care. Family physicians have the ideal skills to manage and coordinate patient hospice care needs.

Hospice and Palliative Care: An Overview.

Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.

Delivering problem-solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care.

OBJECTIVE: In response to the well-documented need for evidence-based cancer caregiver support, we examined the feasibility of problem-solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem-solving therapy on family caregivers' anxiety, depression, and quality of life. METHODS: We conducted a feasibility study of a structured problem-solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem-solving therapy intervention, which was delivered over three sessions via web-based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. RESULTS: Problem-solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem-solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). CONCLUSIONS: Problem-solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

Quality Hospice Care in Adult Family Homes: Barriers and Facilitators.

OBJECTIVES: Older adults in need of residential services are increasingly spending their final days in small, domestic-style care settings such as adult family homes. In this study, we sought to identify processes that facilitated the provision of quality hospice care to seriously ill residents of adult family homes and their family members. DESIGN: We conducted a secondary analysis of qualitative data collected as part of a randomized clinical trial of a problem-solving intervention for family members of hospice patients. SETTING: The original trial was conducted in partnership with 2 large, community-based hospice agencies in the state of Washington. PARTICIPANTS: Data from 73 family members of residents of adult family homes receiving hospice services were included in the analysis. MEASUREMENTS: Data were collected via semi-structured individual interviews, which were audio-recorded and transcribed prior to analysis. RESULTS: Family members described quality hospice care in the adult family home as care that is consistent with residents and families' values and that results in comfort and social connectedness for residents while promoting peace of mind and decreasing burden for residents' families. They identified numerous processes that facilitated the provision of quality care including personalizing care, sharing information and expertise, working together to resolve conflicts, and prioritizing residents and families' values over existing or competing philosophies of care. CONCLUSION: The adult family home setting can amplify both the benefits and challenges associated with receipt of hospice. When choosing an adult family home, older adults and their families should strongly consider selecting a home with a track record of positive collaborations with hospice agencies if the need for end-of-life care is anticipated.

Getting comfortable with death. Evolution of the care of the dying patient.

In this article, we provide an overview of the historical evolution and ongoing transformation of care for the dying patient. We examine the rise of hospice and palliative care and its eventual designation as a formal discipline and discuss growing recognition of the need for earlier palliative care for the seriously ill. Finally, we consider potential future challenges in the delivery of care to the dying patient as health care continues to change over time.

Hospice medical directors: a survey of one state.

INTRODUCTION: Little research exists regarding hospice medical directors (HMD). This project describes the HMD's background and training, clinical roles, and current function within the hospice organization and their interdisciplinary groups. METHODS: A survey was mailed to each licensed hospice that was also a member of the state hospice association in one state. Thirty-one HMDs from 31 hospice programs (40% response rate) in one state responded. RESULTS: Findings show that the role of the HMD in this state is primarily part-time and filled by primary care physicians. Most HMDs report being satisfied with their positions. No more than one third belong to any one professional association and no physician in this survey was certified in palliative care by the American Board of Medical Specialties. The role for most of these HMDs centers around their clinical contribution to the team. DISCUSSION: Despite the 2008 revisions in the regulations, the HMD roles still vary across hospices, and requirements regarding the specialty, training, and education for physicians are not specified. Professional associations for HMDs should target these part-time physicians in an effort to build a comprehensive organization represented by all types of HMDs. CONCLUSION: The part-time nature of HMDs has important implications for professional organizations and policy makers. Palliative care certification and continuing education opportunities need to be made available to these physicians. Additionally, new changes requiring face-to-face visits for recertification should consider the part-time nature of HMD work and the difficulties that the requirement will have in both cost for the hospice and access to primary care in rural areas.

House calls.

House calls provide a unique perspective on patients' environment and health problems. The demand for house calls is expected to increase considerably in future decades as the U.S. population ages. Although study results have been inconsistent, house calls involving multidisciplinary teams may reduce hospital readmissions and long-term care facility stays. Common indications for house calls are management of acute or chronic illnesses, and palliative care. Medicare beneficiaries must meet specific criteria to be eligible for home health services. The INHOMESSS mnemonic provides a checklist for components of a comprehensive house call. In addition to performing a clinical assessment, house calls may involve observing the patient performing daily activities, reconciling medication discrepancies, and evaluating home safety. House calls can be integrated into practice with careful planning, including clustering house calls by geographic location and coordinating visits with other health care professionals and agencies.

Interdisciplinary collaboration: the voices of hospice medical directors.

The value of interdisciplinary collaboration is a significant aspect of the palliative care philosophy, as identified by the founder of the modern hospice movement Cecily Saunders. The purpose of this descriptive study was to explore the experiences of hospice medical directors within this collaborative context. Open-ended interviews with 17 hospice medical directors were done and their responses were thematically analyzed. These narratives present a very positive collaborative experience by these medical directors in their hospice settings. Assisting medical directors to find time and financial opportunities for professional development and support within their role was found to be an opportunity to further improve collaboration.

The role of the hospice medical director as observed in interdisciplinary team case reviews.

BACKGROUND: The purpose of this study was to observe the roles played by six hospice medical directors from two hospice programs during interdisciplinary team case reviews. METHODS: The study analyzed videotapes of case reviews in two hospice agencies over a two year period. The results indicate that the roles and levels of participation vary. Medical Directors were observed reviewing and assisting with care plans, acting as a liaison with primary physicians, educating staff, consulting with attending physicians, participating in quality assurance activities, and dealing with budget issues. RESULTS: Medical Directors did not make home visits or assume the role of attending physician during the observation period. CONCLUSIONS: The study demonstrates variance in roles among medical directors and raises new questions for future research.

Primary prevention of disease of old age.

Although increasing disability is a common concomitant of old age, several interventions may prevent or delay disabling diseases. The "young-old" differ little from middle-aged people in their potential to benefit from many interventions. As age increases, clinicians need to become increasingly circumspect about interventions with a potential for harm and for benefit. By carefully weighing existing disease burden, the state of our knowledge about prevention, and patient values, however, clinicians may develop a reasonable preventive program in consultation with the patient and, where there is diminished competence, relevant family members. As we gain new knowledge about genetic and other risk factors, we may be able to more accurately and effectively target preventive services to maximize benefits and minimize harms in the population as a whole.

Spirituality and end-of-life care.

As dying patients adjust to the irreversible nature of their illness, their needs and focus of care changes. Spiritual issues may become a central concern for them, and addressing these issues can be key to relieving suffering. Physicians, unfortunately, have little training in this area and are often uncomfortable discussing spirituality. In this article, we address the role of spirituality in end-of-life care, and discuss a format for spiritual assessment. We hope this will encourage more comprehensive patient-centered, end-of-life care.