Joan G. Carpenter

Geriatric Palliative Care in Long-Term Care Settings with a Focus on Nursing Homes

Almost 1.7 million older Americans live in nursing homes, representing a large proportion of the frailest, most vulnerable elders needing long-term care. In the future, increasing numbers of older adults are expected to spend time and to die in nursing homes. Thus, understanding and addressing the palliative care needs of this population are critical. The goals of this paper are to describe briefly the current state of knowledge about palliative care needs, processes, and outcomes for nursing home residents; identify gaps in this knowledge; and propose priorities for future research in this area.

Social support needs: discordance between home hospice nurses and former family caregivers.

OBJECTIVE The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs. METHOD As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match. RESULTS Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed. SIGNIFICANCE OF RESULTS Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

Implementing goals of care conversations with veterans in VA long-term care setting: a mixed methods protocol

BackgroundThe program “Implementing Goals of Care Conversations with Veterans in VA LTC Settings” is proposed in partnership with the US Veterans Health Administration (VA) National Center for Ethics in Health Care and the Geriatrics and Extended Care Program Offices, together with the VA Office of Nursing Services. The three projects in this program are designed to support a new system-wide mandate requiring providers to conduct and systematically record conversations with veterans about their preferences for care, particularly life-sustaining treatments. These treatments include cardiac resuscitation, mechanical ventilation, and other forms of life support. However, veteran preferences for care go beyond whether or not they receive life-sustaining treatments to include issues such as whether or not they want to be hospitalized if they are acutely ill, and what kinds of comfort care they would like to receive.MethodsThree projects, all focused on improving the provision of veteran-centered care, are proposed. The projects will be conducted in Community Living Centers (VA-owned nursing homes) and VA Home-Based Primary Care programs in five regional networks in the Veterans Health Administration. In all the projects, we will use data from context and barrier and facilitator assessments to design feedback reports for staff to help them understand how well they are meeting the requirement to have conversations with veterans about their preferences and to document them appropriately. We will also use learning collaboratives—meetings in which staff teams come together and problem-solve issues they encounter in how to get veterans’ preferences expressed and documented, and acted on—to support action planning to improve performance.DiscussionWe will use data over time to track implementation success, measured as the proportions of veterans in Community Living Centers (CLCs) and Home-Based Primary Care (HBPC) who have a documented goals of care conversation soon after admission. We will work with our operational partners to spread approaches that work throughout the Veterans Health Administration.

A true human interaction: Comparison of family caregiver and hospice nurse perspectives on needs of family hospice caregivers

Home hospice providers are concerned with family caregiver perceptions of the quality of care and support offered, and more research is needed to understand experiences of family caregivers and what “support” means to them. We compared perceptions of caregiver needs from family caregivers and hospice nurse care managers who participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded, and qualitatively analyzed to describe patterns and themes. Caregivers described information, explanation, trust, and respect as their greatest needs. Nurses also described information as the most critical need of caregivers, followed by instruction, honesty, and reassurance. Although these concepts shared similarities, caregivers and nurses related them differently to caregiver support. Both groups focused on relationship building, suggesting 2 themes that highlighted both contrasts and mutual understanding of the importance of effective relationships: “breaking it down to build it up” and “doing to, doing for, or doing with.” Caregivers and nurses cited similar concepts as essential for successful relationships between caregivers and the hospice team, but how they described them differed, and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams.

Refractory cancer pain in a nursing home resident

Refractory pain is an elusive and often misunderstood symptom in palliative care. Often, persistent pain, labeled as refractory, requires more complex assessments and interventions than the physical symptom of pain. Proper assessment of the “whole person” can reveal psychological, social, spiritual, or existential concerns that contribute to the experience of pain. The purpose of this article is to review and present evidence, guidelines, and recommendations for treating older adults with suspected refractory pain. This case-based illustration of pain is specifically focused on the older adult who is suspected of having refractory pain and has undergone care setting transitions between the hospital and nursing home and provides strategies for clinicians in both settings to best assess and meet patient needs. Recognition, assessment, treatment, and goal-directed nursing implications are presented.

Correction to: Implementing goals of care conversations with veterans in VA long-term care setting: a mixed methods protocol

CorrectionThe authors would like to correct errors in the original article [1] that may have lead readers to misinterpret the scope, evidence base and target population of VHA Handbook 1004.03 “Life-Sustaining Treatment (LST) Decisions: Eliciting, Documenting, and Honoring Patients’ Values, Goals, and Preferences”.

Case-Mix Adjustment of the Bereaved Family Survey

Surveys of bereaved family members are increasingly being used to evaluate end-of-life (EOL) care and to measure organizational performance in EOL care quality. The Bereaved Family Survey (BFS) is used to monitor EOL care quality and benchmark performance in the Veterans Affairs (VA) health-care system. The objective of this study was to develop a case-mix adjustment model for the BFS and to examine changes in facility-level scores following adjustment, in order to provide fair comparisons across facilities. We conducted a cross-sectional secondary analysis of medical record and survey data from veterans and their family members across 146 VA medical centers. Following adjustment using model-based propensity weighting, the mean change in the BFS-Performance Measure score across facilities was −0.6 with a range of −2.6 to 0.6. Fifty-five (38%) facilities changed within ±0.5 percentage points of their unadjusted score. On average, facilities that benefited most from adjustment cared for patients with greater comorbidity burden and were located in urban areas in the Northwest and Midwestern regions of the country. Case-mix adjustment results in minor changes to facility-level BFS scores but allows for fairer comparisons of EOL care quality. Case-mix adjustment of the BFS positions this National Quality Forum–endorsed measure for use in public reporting and internal quality dashboards for VA leadership and may inform the development and refinement of case-mix adjustment models for other surveys of bereaved family members.

Nursing home care trajectories for older adults following in-hospital palliative care consultation

ABSTRACT Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life‐limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English‐speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped. Interviews (n = 15) with participants and surrogates were combined with each participants medical record data. Content analysis was employed on the combined dataset. All PCC referrals were for goals of care conversations during which the PCC team discussed poor prognosis. All participants were admitted to a nursing home under the Medicare skilled nursing facility benefit. Seven were rehospitalized; six of the 12 died within 6 weeks of initial nursing home admission. The two care trajectories were Focus on Rehabilitative Care and Comfort Care Continuity. There was a heavy emphasis on recovering functional status through rehabilitation and skilled nursing care, despite considerable symptom burden and poor prognosis. Regardless of PCC with recommendations for palliative interventions, frail older adults with limited life expectancy and their family caregivers often perceive that rehabilitation will improve physical function. This perception may contribute to inappropriate, ineffective care. More emphasis is needed to coordinate care between PCC recommendations and post‐acute care.