High-Quality Nursing Home and Palliative Care—One and the Same

Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches’ effectiveness is inadequate. In this article, we review the existing evidence and challenges with each of these 3 approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high-quality nursing home care. To achieve this vision, we make 4 recommendations: (1) promote internal palliative and end-of-life care capacity through comprehensive training and support; (2) ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and end-of-life care; (3) align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and (4) support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this article describes some key strategies to make this goal a reality.     

Nursing Homes and End-of-Life Care in Japan

Objectives

To describe end-of-life care in Japanese nursing homes by comparing facility and characteristics of residents dying in nursing homes with those who had been transferred and had died in hospitals, and by comparing the quality of end-of-life care with hospitals and with their respective counterparts in the United States.

Setting

National sample of 653 nursing homes with responses from 371 (57%) on their facility characteristics, 241 (37%) on their resident characteristics, and 92 (14%) on the residents’ quality of life. All 5 hospitals in a city 80 miles from Tokyo cooperated.

Participants

Nursing home staff answered questionnaires on facility and resident characteristics. Resident level data were obtained from 1158. The questionnaire on the quality of care was responded to by 256 (63%) of the decedents’ families in nursing homes and 205 (48%) in hospitals.

Measurements

Facility characteristics included items on physicians, nurse staffing, and the facility’s end-of-life care policy. Resident characteristics included basic demographics, level of dementia, and resident’s and family’s preference for the site of death. The Toolkit was used to measure the quality of end-of-life care.

Results

The proportion of those dying within the nursing home was related to the facility’s policy on end-of-life care and the family’s preference. The quality of end-of-life care in nursing homes was generally better than in hospitals, and than in their respective counterparts in the United States.

Conclusion

Financial incentives by the Japanese government to promote end-of-life care in nursing homes may have contributed to increasing the proportion of deaths within the facility. The quality of care in nursing homes was evaluated as being better than hospitals.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

International Survey of Nursing Home Research Priorities

This article reports the findings of a policy survey designed to establish research priorities to inform future research strategy and advance nursing home practice. The survey was administered in 2 rounds during 2013, and involved a combination of open questions and ranking exercises to move toward consensus on the research priorities. A key finding was the prioritization of research to underpin the care of people with cognitive impairment/dementia and of the management of the behavioral and psychological symptoms of dementia within the nursing home. Other important areas were end-of-life care, nutrition, polypharmacy, and developing new approaches to putting evidence-based practices into routine practice in nursing homes. It explores possible innovative educational approaches, reasons why best practices are difficult to implement, and challenges faced in developing high-quality nursing home research.     

Content analysis of euthanasia policies of nursing homes in Flanders (Belgium)

Objectives To describe the form and content of ethics policies on euthanasia in Flemish nursing homes and to determine the possible influence of religious affiliation on policy content. Methods Content analysis of euthanasia policy documents. Results Of the 737 nursing homes we contacted, 612 (83%) completed and returned the questionnaire. Of 92 (15%) nursing homes that reported to have a euthanasia policy, 85 (92%) provided a copy of their policy. Nursing homes applied the euthanasia law with additional palliative procedures and interdisciplinary deliberations. More Catholic nursing homes compared to non-Catholic nursing homes did not permit euthanasia. Policies described several phases of the euthanasia care process as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and procedures for handling advance directives. Conclusion Our study revealed that euthanasia requests from patients are seriously considered in euthanasia policies of nursing homes, with great attention for palliative care and interdisciplinary cooperation.     

Sampling Challenges in Nursing Home Research

BackgroundResearch on end-of-life care in nursing homes is hampered by challenges in retaining facilities in samples through study completion. Large-scale longitudinal studies in which data are collected on-site can be particularly challenging.ObjectivesTo compare characteristics of nursing homes that dropped from the study to those that completed the study.MethodsOne hundred two nursing homes in a large geographic 2-state area were enrolled in a prospective study of end-of-life care of residents who died in the facility. The focus of the study was the relationship of staff communication, teamwork, and palliative/end-of-life care practices to symptom distress and other care outcomes as perceived by family members. Data were collected from public data bases of nursing homes, clinical staff on site at each facility at 2 points in time, and from decedents’ family members in a telephone interview.ResultsSeventeen of the 102 nursing homes dropped from the study before completion. These non-completer facilities had significantly more deficiencies and a higher rate of turnover of key personnel compared to completer facilities. A few facilities with a profile typical of non-completers actually did complete the study after an extraordinary investment of retention effort by the research team.ConclusionNursing homes with a high rate of deficiencies and turnover have much to contribute to the goal of improving end-of-life care, and their loss to study is a significant sampling challenge. Investigators should be prepared to invest extra resources to maximize retention.     

Advancing Clinical Trials in Nursing Homes: A Proposed Roadmap to Success

An effective clinical research effort in nursing homes to address prevention and treatment of COVID-19 faced overwhelming challenges. Under the Health Care Systems Research Network-Older Americans Independence Centers AGING Initiative, a multidisciplinary Stakeholder Advisory Panel was convened to develop recommendations to improve the capability of the clinical research enterprise in US nursing homes. The Panel considered the nursing home as a setting for clinical trials, reviewed the current state of clinical trials in nursing homes, and ultimately developed recommendations for the establishment of a nursing home clinical trials research network that would be centrally supported and administered. This report summarizes the Panel’s recommendations, which were developed in alignment with the following core principles: build on available research infrastructure where appropriate; leverage existing productive partnerships of researchers with groups of nursing homes and nursing home corporations; encompass both efficacy and effectiveness clinical trials; be responsive to a broad range of stakeholders including nursing home residents and their care partners; be relevant to an expansive range of clinical and health care delivery research questions; be able to pivot as necessary to changing research priorities and circumstances; create a pathway for industry-sponsored research as appropriate; invest in strategies to increase diversity in study populations and the research workforce; and foster the development of the next generation of nursing home researchers.     

Predictors of social service staff involvement in selected palliative care tasks in nursing homes: an exploratory model

Little research has been conducted on nursing home social service staff and end-of-life care in nursing homes. To address this gap, a cross-sectional study on end-of-life issues for people with dementia in nursing homes was conducted in New York State, in which 138 nursing home social service staff participated. This exploratory study examined issues such as perceived confidence, perceived influence, and demographic variables in relation to self-reported frequency of tasks related to palliative care of nursing home residents with dementia. Results showed that participants in this survey who discussed specific treatment issues during advance directive discussions perceived themselves to have higher degrees of influence in their respective facilities, were directors or managers of their departments, and were more likely to engage in tasks related to palliative care.     

Staff perceptions of end-of-life care in long-term care

OBJECTIVE: Although residential care/assisted living facilities and nursing homes have increasingly become a significant site of death for older Americans, little is known about staff perceptions of end-of-life care, perceived need for improvement in care, and differences by type of setting. DESIGN, SETTING, AND PARTICIPANTS: Ninety-nine staff provided their perceptions of end-of-life care for 99 decedents from 74 residential care/assisted living facilities and nursing homes in four states as part of a larger cohort study. Staff were interviewed retrospectively regarding care provided during residents' last month of life. MEASUREMENTS: Staff reported on 11 areas of end-of-life care, describing the importance of each area and the level of improvement they felt was indicated. Weighted "need for change" scores were calculated as the product of perceived importance and need for improvement. RESULTS: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. CONCLUSION: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process.     

Nursing Home Residents Dying With Dementia in Flanders,Belgium: A Nationwide Postmortem Study on Clinical Characteristics and Quality of Dying

ObjectivesThere is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium.Design/Setting/ParticipantsTo obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying.MeasurementsHealth status, clinical complications, symptoms at the end of life, and quality of dying.ResultsWe identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying.ConclusionRegardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.     

Resident smoking in long-term care facilities--policies and ethics.

Objective: To characterize smoking behavior, facility policies related smoking, and administrators'' views of smoking-related problems in Veterans Affairs nursing home care units nationwide. Methods: An anonymous mail survey of long-term care facilities was administered to 106 nursing home supervisors at VA Medical Centers with nursing home care units. The response rate was 82%. Results: Administrators from 106 VA nursing home units reported smoking rates ranging from 5% to 80% of long-term care residents, with an average of 22%. Half of the nursing homes had indoor smoking areas. Frequent complaints from nonsmokers about passive smoke exposure were reported in 23% of the nursing homes. The nursing administrators reported that patient safety was their greatest concern. Seventy- eight percent ranked health effects to the smokers themselves a "major concern," while 70% put health effects to exposed nonsmokers in that category. Smoking in the nursing home was described as a "right" by 59% of respondents and a ¿privilege¿ by 67%. Some individuals reported that smoking was both a right and a privilege. Conclusion: Smoking is relatively common among VA long-term care patients. The promotion of personal autonomy and individual resident rights stressed in the Omnibus Budget Reconciliation Act of 1987 may conflict with administrative concerns about the safety of nursing home smokers and those around them.     

Defining the Role and Value of Physicians Who Primarily Practice in Nursing Homes: Perspectives of Nursing Home Physicians

ObjectiveTo identify the perceptions of physicians with expertise in nursing home care on the value of physicians who primarily practice in nursing homes, often referred to as “SNFists,” with the goal of enriching our understanding of specialization in nursing home care.DesignQualitative analysis of semistructured interviews.Setting and ParticipantsVirtual interviews conducted January 18-29, 2021. Participants included 35 physicians across the United States, who currently or previously served as medical directors or attending physicians in nursing homes.MethodsInterviews were conducted virtually on Zoom and professionally transcribed. Outcomes were themes resulting from thematic analysis.ResultsParticipants had a mean 19.5 (SD = 11.3) years of experience working in nursing homes; 17 (48.6%) were female; the most common medical specializations were geriatrics (18; 51.4%), family medicine (8; 22.9%), internal medicine (7; 20.0%), physiatry (1; 2.9%), and pulmonology (1; 2.9%). Ten (28.6%) participants were SNFists. We identified 6 themes emphasized by participants: (1) An unclear definition and loose qualifications for SNFists may affect the quality of care; (2) Specific competencies are needed to be a “good SNFist”; (3) SNFists are distinguished by their unique practice approach and often provide services that are unbillable or underreimbursed; (4) SNFists achieve better outcomes, but opinions varied on performance measures; (5) SNFists may contribute to discontinuity of care; (6) SNFists remained in nursing homes during the COVID-19 pandemic.Conclusions and ImplicationsThere is a strong consensus among physicians with expertise in nursing home care that SNFists provide higher quality care for residents than other physicians. However, a uniform definition of a SNFist based on competencies in addition to standardized performance measures are needed. Unbillable and underreimbursed services create disincentives to physicians becoming SNFists. Policy makers may consider modifying Medicare reimbursements to incentivize more physicians to specialize in nursing home care.     

Strategies and innovative models for delivering palliative care in nursing homes

The goals of palliative care address critical issues for individuals with complex and serious illness residing in nursing homes, including pain and symptom management, communication, preparation for death, decisions about treatment preferences, and caregiver support. Because of the uncertain prognosis associated with chronic nonmalignant diseases such as dementia, many nursing home residents are either not referred to hospice or have very short or very long hospice stays. The integration of palliative care into nursing homes offers a potential solution to the challenges relating to hospice eligibility, staffing, training, and obtaining adequate reimbursement for care that aligns with resident and surrogate's preferences and needs. However, the delivery of palliative care in nursing homes is hindered by both regulatory and staffing barriers and, as a result, is rare. In this article, we draw on interviews with nursing home executives, practitioners, and researchers to describe the barriers to nursing home palliative care. We then describe 3 existing and successful models for providing nonhospice palliative care to nursing home residents and discuss their ongoing strengths and challenges. We conclude with specific policy proposals to expedite the integration of palliative care into the nursing home setting.     

A Research and Policy Agenda for Transitions from Nursing Homes to Home

SUMMARY

More than 1 million adults make the transition from nursing homes to the community every year, often using formal health services including Medicare Part A skilled home health care. Although the need for discharge planning is well described, and the risks associated with care transitions are increasingly recognized, there is very limited information about the process and outcomes as patients move from nursing home to home. This paper reviews pertinent published data and health services research as background information and outlines a research agenda for studying these important transitions.     

Association Between Clinician Specialization in Nursing Home Care and Nursing Home Clinical Quality Scores

ImportanceWhile the number of prescribing clinicians (physicians and nurse practitioners) who provide any nursing home care remained stable over the past decade, the number of clinicians who focus their practice exclusively on nursing home care has increased by over 30%.ObjectivesTo measure the association between regional trends in clinician specialization in nursing home care and nursing home quality.DesignRetrospective cross-sectional study.Setting and ParticipantsPatients treated in 15,636 nursing homes in 305 US hospital referral regions between 2013 and 2016.MeasuresClinician specialization in nursing home care for 2012–2015 was measured using Medicare fee-for-service billings. Nursing home specialists were defined as generalist physicians (internal medicine, family medicine, geriatrics, and general practice) or advanced practitioners (nurse practitioners and physician assistants) with at least 90% of their billings for care in nursing homes. The number of clinicians was aggregated at the hospital referral region level and divided by the number of occupied Medicare-certified nursing home beds. Nursing Home Compare quality measure scores for 2013–2016 were aggregated at the HHR level, weighted by occupied beds in each nursing home in the hospital referral region. We measured the association between the number of nursing home specialists per 1000 beds and the clinical quality measure scores in the subsequent year using linear regression.ResultsAn increase in nursing home specialists per 1000 occupied beds in a region was associated with lower use of long-stay antipsychotic medications and indwelling bladder catheters, higher prevalence of depressive symptoms, and was not associated with urinary tract infections, use of restraints, or short-stay antipsychotic use.Conclusions and ImplicationsHigher prevalence of nursing home specialists was associated with regional improvements in 2 of 6 quality measures. Future studies should evaluate whether concentrating patient care among clinicians who specialize in nursing home practice improves outcomes for individual patients. The current findings suggest that prescribing clinicians play an important role in nursing home care quality.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

An instrumental variables approach to post-acute care nursing home quality: Is there a dime's worth of evidence that continuing care retirement communities provide higher quality?

For the affluent elderly, continuing care retirement communities (CCRCs) have become a popular option for long term care and other health care needs related to aging. While CCRCs have experienced significant growth over the last few decades, very little is known about the quality of care CCRCs provide. This paper is the first to rigorously study CCRCs on a national scale and the only study that focuses on nursing home quality. Using a national sample from 2005, we determine if the quality of post-acute care provided by CCRC nursing homes is superior to traditional nursing homes. To mimic randomization of patients, instrumental variables analysis is used with relative distance as an exclusion restriction to handle the endogeneity of the type of facility where care is provided. After adjusting for endogeniety, we find that CCRC nursing homes provide post-acute care quality that is similar or lower to traditional nursing homes, depending on the quality measure.