The challenges and opportunities in providing end-of-life care in nursing homes

Approximately 20% of deaths in the United States occur in nursing homes. That percentage is expected to increase as the population continues to age. As a setting for end-of-life care, nursing homes provide both challenges and opportunities. This article examines factors that impede the delivery of high-quality end-of-life care in nursing homes, such as inadequate staff and physician training, regulatory and reimbursement issues, poor symptom management, and lack of psychosocial support for staff, residents, and families. In addition to discussing hindrances to providing end-of-life care, this article explores characteristics of nursing homes and their staff that support the care of terminally ill residents. Also included is an overview of models for delivering end-of-life care in nursing homes, including provision of hospice services, specialized palliative care units, and consultation services. Finally, this article discusses educational programs and current educational initiatives to enhance end-of-life care in nursing homes.     

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

The palliative care education needs of nursing home staff

BACKGROUND: Palliative care is delivered in a number of settings, including nursing homes, where staff often have limited training in palliative care. AIM: We explored the level of palliative care knowledge among qualified staff delivering end-of-life care in nursing home settings, to inform the development of an appropriate education and training programme. DESIGN: An audit of the educational needs assessment was performed using an anonymous postal questionnaire sent to 528 qualified nursing staff within 48 nursing homes. FINDINGS: In total, 227 questionnaires were returned giving a response rate of 43%. Results indicated that less than half the sample had obtained formal training in the area of pain assessment and management and less than a quarter had obtained training in non-malignant conditions. Registered nurses in this study reported a lack of awareness of palliative care principles or national guidelines. CONCLUSION: Qualified nursing home staff agree that palliative care is a valuable model for care in their setting. There are clear opportunities for improvement in nursing home care, based on education and training in palliative care. Results also support the need for enhanced liaison between nursing homes and specialist palliative care services.     

Discharging patients from hospice to nursing home: a retrospective case note review

This article presents a retrospective case note review of in-patients at one UK hospice considered for discharge to nursing homes during 1999 and 2000. The idea of a nursing home placement was introduced, on average, around 9 days after admission to the hospice; the most common reason cited being the inability to cope at home. Nearly a third of the patients expressed negative or ambivalent feelings about the idea. Transferring patients from hospice to nursing home is often necessary to avoid pressures on hospice beds. The potential distress of transferring patients, particularly when nearing the end of life, must be balanced against the needs of patients on hospice waiting lists. Of the 41 cases reviewed, 16 were transferred to nursing homes as planned, with a mean length of stay of just over 8 weeks. The current provision of palliative care in nursing homes raises ethical questions about transferring patients to an unfamiliar environment that may not necessarily be able to offer the same quality of palliative care. Clear communication with patients and their families and a consistent process are important to reduce some of the distress associated with this issue.     

A model long-term care hospice unit: care, community, and compassion

The purpose of this study was to investigate the factors that influenced the quality of care of terminally ill nursing home residents on a hospice unit in a city and county long-term care facility. The findings disclosed that the hospice team had created a cultural environment in which care, community, and compassion were the predominant components of their philosophy of palliative care. Communication at all levels-among staff, family, friends, and residents-was found to be a core hospice value, essential to community development. The results of this study illustrate that exemplary palliative care can be provided when an interdisciplinary team is dedicated to creating an environment where the principles of palliative care can be fully implemented. The authors conclude that there is a developing role for geriatric nurses to participate in further defining and providing palliative care for older people in their homes, hospitals, nursing homes, and residential care.     

Long-term care nurses' knowledge of end-of-life care

Long-term care (LTC) facilities usually contract with hospice agencies to provide palliative (comfort) care to their terminally ill residents, yet only 1% of nursing home residents enroll in hospice care. Integrating hospice services with nursing home services presents many challenges. One of the most critical challenges is the lack of education in palliative care among physicians, licensed nurses, and certified nursing assistants in LTC settings. A study of 164 licensed nurses from 24 LTC facilities in north central Texas found deficiencies in their knowledge of palliative care. The mean score on the Palliative Care Quiz for Nursing was 12.3 of a possible 20 (62%, SD = 2.7). Implications for practice include a critical need for in-service education on end-of-life content for practicing LTC nurses and integration of such content in all curricula for future nurses.     

Palliative care in nursing homes: a comparison of high- and low-level providers

The purpose of this study was to explore staff perceptions and concerns about the use of palliative care services in the nursing home setting. Six administrators from nursing homes were purposively selected for key informant interviews. Four common themes emerged, including issues related to the culture of care, the model of care, the relationships with hospice partners, and the role of staff. Recognition of staff perceptions is an important first step in improving the utilization of palliative care services. Staff insight provided clarification related to impediments in promoting a culture of care that was person-centered and relationship-based. We conclude by identifying the solutions for raising the level of dialogue to promote palliative care practice in the nursing home environment.     

The role of hospice care in the nursing home setting

The last days of life for a substantial proportion of dying older adults are spent in nursing homes. Considering this, the provision of Medicare hospice care in nursing homes would appear to be an equitable use of Medicare expenditures as well as a valid investment in improving the quality of life for dying nursing home residents. However, government concerns regarding possible abuse of the hospice benefit in nursing homes, as well as suggestion that the payment for the benefit in nursing homes may be excessive, has perhaps slowed the adoption of hospice services into the nursing home setting. Currently, access to hospice care in nursing homes is inequitable across facilities, and across geographic areas. In nursing homes where hospice is available and present, however, recent research documents superior outcomes for residents enrolled in hospice, and perhaps for nonhospice residents. Still, more research is needed, particularly research focusing on the government costs associated with the provision of hospice care in nursing homes. If subsequent research continues to support the "added value" of hospice care in nursing homes and at the same or less total costs, the issue of foremost concern becomes how equitable access to Medicare hospice care in nursing homes can be achieved. Access may be increased to some extent by changing government policies, and conflicting regulations and interpretive guidelines, so they support and encourage the nursing home/hospice collaboration.     

Palliative care nursing education: opportunities for gerontological nurses

Approximately 80% of Americans who die each year are 65 or older. Increasingly, gerontological nurses are asked to deliver high quality end-of-life care. Studies, however, have identified deficiencies in the delivery of care to older adults who are dying-particularly those who die in nursing homes. Enhancing nursing education and training in end-of-life care is one strategy proposed as a remedy for inadequate care for nursing home residents who are dying. This article reviews the current status of end-of-life nursing home care, describes the philosophy and components of quality palliative care, and provides information about opportunities and resources for educating gerontological nurses in end-of-life care.     

An evaluation of the impact of the Gold Standards Framework on collaboration in end-of-life care in nursing homes. A qualitative and quantitative evaluation

BackgroundIn the United Kingdom approaching 20% of people aged 85 years and over live in care homes and most will die there. Improving end-of-life care is a government health priority and homes may work with primary care staff and specialist palliative practitioners to provide comprehensive end-of-life care. Consequently effective collaboration between care home and health service practitioners is vital to ensure high quality end-of-life care.ObjectivesTo evaluate the impact of a training programme to improve end-of-life care in nursing homes, on collaboration between nursing home staff and other health practitioners.DesignEvaluation using survey methods and qualitative case studies.Participants and settingAll 95 nursing homes in the first national ‘Gold Standards Framework in Care Homes’ programme in England were invited to participate in the evaluation.MethodsA survey of homes’ characteristics, the approaches to end-of-life care, and liaison with other services, was completed pre and post programme implementation. Case studies were conducted in a sub-sample of 10 homes to provide important context and depth to the evaluation.ResultsPre and post surveys were returned by 49 (52%) homes. Improved collaborations as a result of the programme were anticipated by 31% of managers. Challenges to collaboration included working with large numbers of general practitioners, out-of-hours services and access to specialist practitioners. Improved collaborations between home staff and health service practitioners were identified by 33% of managers as one of the main programme outcomes. Staff reported increased knowledge of end-of-life care, and enhanced confidence, which in turn resulted in improved communication and collaboration. Post-programme, staff felt more confident initiating contact and discussing residents’ end-of-life care with general practitioners and those working in specialist palliative care services.ConclusionsThe Gold Standards Framework in Care Homes programme can contribute towards end-of-life care by helping to improve the quality and quantity of communication and collaboration between nursing home staff and primary care and specialist practitioners. Further research is needed to determine why this was not consistent across all homes.     

Hospice experience and perceptions in nursing homes

The purpose of this study was to describe the experiences and perceptions of hospice nurses caring for residents in long-term care facilities. The study used a fax-back survey to gather data from 69 hospice nursing and nurse managers in 24 hospices across one Midwestern state. Respondents reported negative experiences with pain management and care coordination in the nursing home setting. Although hospice is thought to be a benefit to residents, hospice staff report frustration in caring for nursing home patients, especially in trying to control pain. The study identifies opportunities for improvement in hospice and nursing home staff relationships.     

Death in the nursing home: resident, family, and staff perspectives

The actual experience of dying in the United States is far different from the expressed desires of most Americans. Although most Americans express a preference for dying at home, 73% of Americans die in medical institutions, with 23% dying in nursing homes (Teno, 2004). In this article, the author examines end-of-life care in the nursing home. A literature review identified more than 100 published articles relevant to end-of-life care in nursing homes. Of these, the author evaluated empirical research studies from the perspectives of residents, family members, and nursing home staff with findings specific to seriously ill nursing home residents. By identifying problematic issues and contributing factors, nurses can modify their practice to improve end-of-life care and substantially reduce suffering for nursing home residents and their families.     

The emergence of Medicare hospice care in US nursing homes

Although Medicare-financed hospice care has been provided in nursing homes in the USA for over 10 years, very little is known regarding the use of this government health care benefit in nursing homes. Using resident assessment data and hospice and inpatient Medicare claim data from five US states, we were able to identify and describe nursing home residents receiving hospice care between 1992 and 1996, and their hospice utilization patterns. Six per cent of all dying nursing home residents received hospice care at some point in time and, in 1996, an estimated 24% of all Medicare hospice patients in the five study states received hospice while in a nursing home. Of those residents beginning hospice care after nursing home admission, 48% were 85 years or older, 70% were female, 94% were white, 76% were unmarried and 62% had a non-cancer principal diagnosis. The average length of stay in the hospice programme for residents receiving hospice care while in the nursing home was 90.6 days, the median 35 and the mode 2. Hospice care in US nursing homes is a prevalent model of care that appears further to extend the Medicare hospice benefit to older adults who are female and to those with non-cancer diagnoses. Lengths of stay in the programme are similar to those observed in the community and the average length of stay is substantially shorter than previously estimated by an influential government study.     

Assessing the educational needs and concerns of nursing home staff regarding end-of-life care

The purpose of this study was to explore and describe the educational needs and concerns of licensed nursing staff and certified nursing assistants (CNAs) regarding end-of-life (EOL) care. Focus group interviews were conducted at two nursing homes in the Pacific Northwest. Separate interviews were conducted for licensed staff (RNs and LPN/LVNs) and CNAs. A total of 15 licensed staff and 39 CNAs participated in the study. Interviews were transcribed and themes were extracted through consensus reached by three investigators. The major concerns of these nursing home staff focused on symptom management, communication and interactions, goals of care, role delineation, time constraints, self-care needs, and emotional attachment to residents. Although both groups described similar themes, specific issues within each topic often were different for licensed staff and CNAs. These findings can be used to guide the design of educational programs aimed at assisting nursing home staff in providing high level end-of-life care.     

The Medicare hospice benefit's influence on dying in nursing homes

For dying nursing home residents, the prevalence of symptoms and care utilization prior to death has yet to be empirically described for a population-based sample. Yet, related work has suggested that the quality of care for dying nursing home residents is less optimal. The provision of Medicare hospice care in nursing homes offers a means for improving terminal care in nursing homes. However, other than controversial findings emanating from the U.S. Office of Inspector General's (OIG's) hospice studies, there is a dearth of evaluative research on the comparative costs and the benefits of Medicare hospice care in nursing homes. In this article, we discuss current knowledge concerning the dying experience of nursing home residents and of the influence of the Medicare hospice benefit in nursing homes. In doing so, we critique the OIG's study of hospice care in nursing homes and we raise concerns regarding access to the Medicare hospice benefit in nursing homes. We conclude by delineating the research needed to more fully understand the dying experience of nursing home residents and the influence of Medicare hospice care provision on this experience.     

End-of-life care for nursing home residents dying from cancer in Nova Scotia,Canada, 2000–2003

INTRODUCTION: With our population aging, an increasing proportion of cancer deaths will occur in nursing homes, yet little is known about their end-of-life care. This paper identifies associations between residing in a nursing home and end-of-life palliative cancer care, controlling for demographic factors. METHODS: For this population-based study, a data file was created by linking individual-level data from the Nova Scotia Cancer Centre Oncology Patient Information System, Vital Statistics, and the Halifax and Cape Breton Palliative Care Programs for all persons 65 years and over dying of cancer from 2000 to 2003. Multivariate logistic regression was used to compare nursing home residents to nonresidents. RESULTS: Among the 7,587 subjects, 1,008 (13.3%) were nursing home residents. Nursing home residents were more likely to be female [adjusted odds ratio (OR) 1.4, 95% confidence interval (CI) 1.2-1.7], older (for > or = 90 vs 65-69 years OR 5.4, CI 4.1-7.0), rural (OR 1.5, CI 1.2-1.8), have only a death certificate cancer diagnosis (OR 4.2, CI 2.8-6.3), and die out of hospital (OR 8.5, CI 7.2-10.0). Nursing home residents were less likely to receive palliative radiation (OR 0.6, CI 0.4-0.7), medical oncology consultation (OR 0.2, CI 0.1-0.4), and palliative care program enrollment (Halifax OR 0.2, CI 0.2-0.3; Cape Breton OR 0.4, CI 0.3-0.7). CONCLUSION: Demographic characteristics and end-of-life services differ between those residing and those not residing in nursing homes. These inequalities may or may not reflect inequities in access to quality end-of-life care.     

A Measure of Palliative Care in Nursing Homes

ContextEfforts to improve care for nursing home residents stand to be enhanced by measures to assess the degree to which staff provide palliative care. As the incidence of death in nursing homes increases with the aging population, the gap in measurement must be addressed. To that end, we report the development and psychometric testing of a nursing home palliative care survey.ObjectivesThe purpose of this study was to evaluate the psychometric properties of the Palliative Care Survey (PCS) for use in nursing homes.MethodsPsychometric evaluation of the instrument was completed in two phases. Phase 1 focused on individual item analyses and subsequent revision or deletion of items, and Phase 2 evaluated evidence for reliability and validity. Phase 1 included 26 nursing homes and staff (n = 717), and Phase 2 included 85 nursing homes and staff (n = 2779). Data were analyzed using item-total correlations, Cronbach’s alpha, confirmatory factor analysis, and analysis of variance.ResultsSupport was obtained for a 51-item PCS made up of two constructs, Palliative Care Practice and Palliative Care Knowledge.ConclusionThe PCS measures the extent to which the nursing home staff engage in palliative care practices and have knowledge consistent with good end-of-life care. Both practice and knowledge are an essential foundation to providing good end-of-life care to nursing home residents. Efforts to improve care for the dying in nursing homes have been slowed by an absence of measurement tools that capture care processes, a gap that the PCS reported here helps fill.     

Staff and family relationships in end-of-life nursing home care

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff-family relationships. The article is based on a nationwide survey examining Norwegian nursing homes' end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards 'usually' explore residents' preferences for care and treatment at the end of their life, and few have written procedures on the involvement of family caregivers when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills.     

Spiritual caring: end of life in a nursing home

The purpose of this qualitative study was to explore spiritual care for dying nursing home residents from the perspectives of registered nurses, practical nurses, certified nursing assistants, advanced practice nurses, and physicians. Five major themes emerged: honoring the person's dignity, intimate knowing in the nursing home environment, wishing we could do more, personal knowing of self as caregiver, and struggling with end-of-life treatment decisions. Spiritual caring was described within the context of deep personal relationships, holistic care, and support for residents. Spiritual care responses and similarities and differences in the experiences of participants are presented. Education and research about how to assist residents and families as they struggle with difficult end-of-life decisions, adequate time and staff to provide the kind of care they "wished they could," and development of models that honor the close connection and attachment of staff to residents could enhance end-of-life care in this setting.     

Transferring dying nursing home residents to the hospital: DON perspectives on the nurse's role in transfer decisions.

This qualitative study elicits factors that influence decision-making by nurses about transferring a dying resident from the nursing home to the hospital. Focus groups with directors of nursing (DONs) from long-term care facilities revealed those decisions are influenced by knowledge (or lack thereof) of resident or family preferences, nurse interactions with physicians, nursing home technological and personnel resources, and nurse concerns about institutional liability. DONs can improve transfer decisions by communicating with all parties, clarifying nursing home processes for end-of-life care, and scheduling early and thorough conversations with residents and families about end-of-life care. DONs can implement improvements through staff education on communication issues, rigorous evaluation and performance outcome measures related to patient transfer, and conveyance to staff of the institution's mission and the nursing service's values.