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.     

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.     

Advance directives in nursing home residents aged > or =65 years: United States 2004

In 1996, 53% of US nursing home residents had advance directives. This report defines documentation of advance directives in a nationally representative survey of US nursing home residents aged !65 years in 2004, as well as advance directive use in relation to demographic factors and receipt of specialty services including hospice/palliative care. In 2004, advance directives were documented in 69.9% of US nursing home residents aged !65 years and in 93.6% of residents receiving hospice/palliative care. Documentation of advance directives increased substantially between 1996 and 2004 and is nearly universal among residents receiving hospice/palliative care services. However in 2004, 3 of every 10 US nursing home residents did not have documentation of advance care plans. Continued efforts are needed to promote the importance of advance care planning among US nursing home residents.     

Barriers,challenges, and opportunities related to the provision of hospice care in assisted-living communities

The purpose of this project was to clarify the barriers, challenges, and opportunities associated with providing care to older adults residing in assisted-living communities. Three focus groups (hospice team members, family members of individuals who received hospice care while in assisted living, and administrators of assisted-living communities) were convened to discuss hospice care. Thematic analysis of the transcribed focus group tapes was used by the authors to identify the common and unique barriers, challenges, and opportunities identified by each group. All three groups were overwhelmingly in support of the right of residents in assisted-living communities to live and die in place, without being transferred to nursing homes or other acute-care facilities, and of the role that hospice plays in enabling residents to achieve that goal. The three groups also agreed that trends in the development of assisted-living communities create difficulties for the industry, confusion for consumers, and the need for increased accountability by providers. Delivering hospice care to places where consumers want to live and die in place will be a complex task. Among other things, traditional hospice care is not easily transported into the social models of care characterized by assisted-living environments. Changes in hospice organization policies and procedures will be necessary, as will broader, industry-wide reforms in areas such as recruitment, retention of qualified staff and consistent quality-of-care standards.     

A Comparative Analysis of Comprehensive Geriatric Assessments for Nursing Home Residents Receiving Palliative Care: A Systematic Review

Background/ObjectivesNursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness.DesignA systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012.SettingNursing homes.ParticipantsNursing home residents with palliative care needs.MeasurementsPsychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging.ResultsA total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer.ConclusionsThe interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs.     

Hospice in the Nursing Home: Perspectives of Front Line Nursing Home Staff

ObjectiveUse of hospice has been associated with improved outcomes for nursing home residents and attitudes of nursing home staff toward hospice influences hospice referral. The objective of this study is to describe attitudes of certified nursing assistants (CNAs), nurses, and social workers toward hospice care in nursing homes.Design, setting, and participantsWe conducted a survey of 1859 staff from 52 Indiana nursing homes.MeasurementsStudy data include responses to 6 scaled questions and 3 open-ended qualitative prompts. In addition, respondents who cared for a resident on hospice in the nursing home were asked how often hospice: (1) makes their job easier; (2) is responsive when a patient has symptoms or is actively dying; (3) makes care coordination smooth; (4) is needed; (5) taught them something; and (6) is appreciated by patients/families. Responses were dichotomized as always/often or sometimes/never.ResultsA total of 1229 surveys met criteria for inclusion. Of the respondents, 48% were CNAs, 49% were nurses, and 3% were social workers; 83% reported caring for a nursing home patient on hospice. The statement with the highest proportion of always/often rating was ‘patient/family appreciate added care’ (84%); the lowest was ‘hospice makes my job easier’ (54%). More social workers responded favorably regarding hospice responsiveness and coordination of care compared with CNAs (P = .03 and P = .05, respectively).ConclusionsA majority of staff responded favorably regarding hospice care in nursing homes. About one-third of nursing home staff rated coordination of care lower than other aspects, and many qualitative comments highlighted examples of when hospice was not responsive to patient needs, representing important opportunities for improvement.     

Hospice Use Among Nursing Home Patients

ObjectivesAmong hospice patients who lived in nursing homes, we sought to: (1) report trends in hospice use over time, (2) describe factors associated with very long hospice stays (>6 months), and (3) describe hospice utilization patterns.Design, setting, and participantsWe conducted a retrospective study from an urban, Midwest cohort of hospice patients, aged ≥65 years, who lived in nursing homes between 1999 and 2008.MeasurementsDemographic data, clinical characteristics, and health care utilization were collected from Medicare claims, Medicaid claims, and Minimum Data Set assessments. Patients with overlapping nursing home and hospice stays were identified. χ² and t tests were used to compare patients with less than or longer than a 6-month hospice stay. Logistic regression was used to model the likelihood of being on hospice longer than 6 months.ResultsA total of 1452 patients received hospice services while living in nursing homes. The proportion of patients with noncancer primary hospice diagnoses increased over time; the mean length of hospice stay (114 days) remained high throughout the 10-year period. More than 90% of all patients had 3 or more comorbid diagnoses. Nearly 20% of patients had hospice stays longer than 6 months. The hospice patients with stays longer than 6 months were observed to have a smaller percentage of cancer (25% vs 30%) as a primary hospice diagnosis. The two groups did not differ by mean cognitive status scores, number of comorbidities, or activities of daily living impairments. The greater than 6 months group was much more likely to disenroll before death: 33.9% compared with 13.8% (P < .0001). A variety of patterns of utilization of hospice across settings were observed; 21% of patients spent some of their hospice stay in the community.ConclusionsAny policy proposals that impact the hospice benefit in nursing homes should take into account the difficulty in predicting the clinical course of these patients, varying utilization patterns and transitions across settings, and the importance of supporting multiple approaches for delivery of palliative care in this setting.     

Does investor-ownership of nursing homes compromise the quality of care?

Quality problems have long plagued the nursing home industry. While two-thirds of U.S. nursing homes are investor-owned, few studies have examined the impact of investor-ownership on the quality of care. The authors analyzed 1998 data from inspections of 13,693 nursing facilities representing virtually all U.S. nursing homes. They grouped deficiency citations issued by inspectors into three categories ("quality of care," "quality of life," and "other") and compared deficiency rates in investor-owned, nonprofit, and public nursing homes. A multivariate model was used to control for case mix, percentage of residents covered by Medicaid, whether the facility was hospital-based, whether it was a skilled nursing facility for Medicare only, chain ownership, and location by state. The study also assessed nurse staffing. The authors found that investor-owned nursing homes provide worse care and less nursing care than nonprofit or public homes. Investor-owned facilities averaged 5.89 deficiencies per home, 46.5 percent higher than nonprofit and 43.0 percent higher than public facilities, and also had more of each category of deficiency. In the multivariate analysis, investor-ownership predicted 0.679 additional deficiencies per home; chain-ownership predicted an additional 0.633 deficiencies per home. Nurse staffing ratios were markedly lower at investor-owned homes.     

IAGG/IAGG GARN International Survey of End-of-Life Care in Nursing Homes

This article reports the findings of a survey on end-of-life (EOL) care in nursing homes of 18 long-term care experts across 15 countries. The experts were chosen as a convenience-based sample of known experts in each country. The survey was administered in 2016 and included both open-ended responses for defining hospice care, palliative care, and “end of life,” and a series of questions related to the following areas—attitudes toward EOL care, current practice and EOL interventions, structure of care, and routine barriers. Overall experts strongly agreed that hospice and palliative care should be available in long-term care facilities and that both are defined by holistic, interdisciplinary approaches using measures of comfort across domains. However, it appears the experts felt that in most countries the reality fell short of what they believed would be ideal care. As a result, experts call for increased training, communication, and access to specialized EOL services within the nursing home.     

Physician practice patterns in nursing homes

This review of the literature describes models of physician practice in nursing homes including the barriers to increasing physician workforce in nursing homes and the impact of various physician practice models on quality of care in nursing homes. Traditional nursing home practice is first described followed by a review of the literature pertaining to nurse practitioners and physician assistants in nursing home practices, closed staffing models, managed care, and nursing home specialist models. Literature describing barriers to increasing the physician workforce in nursing homes is then presented including training, reimbursement, and malpractice insurance for physicians who work in nursing homes. Finally, the impact of physician practice models on quality of care is reviewed with a focus on frequency of visits, hospitalizations, cost-effectiveness, communication, and patient satisfaction.     

Continuous Palliative Sedation Until Death: The Development of a Practice Protocol for Nursing Homes

ObjectivesChallenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes.MethodsThe development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels.ResultsThe final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying.Conclusions and ImplicationsThis study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.     

Purchasing High-Quality Community Nursing Home Care: A Will to Work With VHA Diminished by Contracting Burdens

ObjectivesThe Veterans Health Administration (VHA) purchases community nursing home care; however, the administrative burden may lead nursing homes to avoid contracting with the VHA. This study aimed to describe how the VHA's purchasing policies impede or facilitate contracting with nursing homes.DesignSemistructured interviews of key stakeholders in the VHA's community nursing home contracting process.Setting and ParticipantsWe interviewed 15 VHA and 21 nursing home staff at 6 VHA medical centers and 17 nursing homes. VHA medical centers were selected from sites with the greatest magnitude of difference in quality rankings between VHA contracted and noncontracted nursing homes in the same market area.MethodsQualitative content analysis of interviews.ResultsFive themes emerged: (1) VHA purchases nursing home care to fill gaps in geographic, specialty, and quality care needs; (2) business opportunities and the mission to care for Veterans motivate nursing homes to work with the VHA; (3) the VHA's reputation for unreliable or insufficient payment and inability of nursing homes to comply with federal wage standards serve as barriers to establishing contracts; (4) complexity of establishing a contract, ambiguity about new policies, and inadequate VHA staffing for the nursing home inspection team hinder the VHA's ability to establish contracts with nursing homes; and (5) nursing homes that have established corporate processes, nursing home administrators with prior experience working with the VHA, and relationships between VHA and nursing home staff serve as facilitators to establishing new nursing home contracts.Conclusions and ImplicationsNursing homes will work with the VHA, but the process of executing VHA contracts is burdensome. Streamlining and standardizing the purchasing processes and ensuring timely payment may expand the number of nursing homes willing to contract with the VHA, thereby increasing choices for Veterans and becoming a model for other long-term care networks.     

New Dimensions of Staffing Patterns in Nursing Homes and Nursing Home Quality: Comparing Staffing Instability to Staffing Turnover

ObjectiveThis study examines how measures of staffing—turnover and instability—are associated with one another and how they independently contribute to quality of care in nursing homes.DesignCross-sectional analysis of 2021–2022 administrative data. Data included the Payroll Based Journal for daily staffing information, merged with Nursing Home Care Compare (NHCC) data for nursing home characteristics, total staffing turnover, and nursing home quality.Setting and ParticipantsA total of 11,840 nursing homes nationally reporting data on daily staffing and staffing turnover.MethodsWe explored correlations between measures of staffing and estimated facility-level regression models with robust standard errors. The dependent variables were indicators of nursing home quality included in the NHCC 5-star ratings. The independent variables of interest were average total staffing hours per resident-day, total staffing turnover, and total staffing instability.ResultsFor the 11,840 nursing homes in the study, there was a weak positive correlation between turnover and instability, with some overlap between nursing homes with high instability and high turnover. Regression analysis revealed that staffing instability and turnover contributed independently to nursing home quality, with instability having a stronger association with some measures of quality and turnover with others. Staffing instability was positively and more strongly associated with long-stay residents' decline in activities of daily living levels and receipt of antipsychotic drugs and short-stay residents' functioning at discharge. Turnover was positively and more strongly associated with long-stay residents' prevalence of pressure ulcers and worsening mobility, and short-stay residents’ hospitalizations.Conclusion and ImplicationsInstability and turnover in total nursing home staffing independently contribute to nursing home quality. This suggests that adding measures of staffing instability to the existing measures of average staffing and staff turnover in NHCC may enhance the report card's value for providers engaged in quality improvement and consumers searching for high-quality nursing homes.     

Growth of Physicians and Nurse Practitioners Practicing Full Time in Nursing Homes

ObjectivesThe objective was to describe the growth of physicians, nurse practitioners (NPs), and physician assistants (PAs) who practice full time in nursing homes, to assess resident and nursing home characteristics associated with receiving care from full-time providers, and describe variation among nursing homes in use of full-time providers.DesignRetrospective cohort study.Setting and ParticipantsA 20% national sample Medicare data on long-term care residents in 2008 to 2018 and the physicians, NPs, and PAs who submitted charges to Medicare for their care.MethodsWe measured the percentage of provider charges for services rendered in nursing homes, in addition to resident and facility characteristics.ResultsFull-time nursing home providers increased from 26.0% of all nursing home providers in 2008 to 44.6% in 2017. The largest increase was in NPs: from 1986 in 2008 to 4479 in 2017. Resident age, sex, Medicaid eligibility, and race/ethnicity had minimal association with the odds of having a full-time provider, whereas residents with an NP primary care provider were 23.0 times more likely (95% confidence interval = 21.6, 24.6) to have a full-time provider. Residents who received care from both a physician and an NP or PA increased from 33.6% in 2008 to 62.5% in 2018. There was large variation among facilities in the percentage of residents with full-time providers, from 5.72% of residents with full-time providers in the bottom quintile of facilities to 91.44% in the top quintile. Individual nursing homes accounted for 59% of the variation in whether a resident had a full-time provider.Conclusions and ImplicationsThe percentage of nursing home residents with full-time providers continues to grow, with very large variation among nursing homes.     

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.     

Exploratory study on end-of-life issues: barriers to palliative care and advance directives

BACKGROUND: In the United States, as in most developed countries, death is rarely unexpected. It usually occurs in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms, improve the quality of their lives, and strive for a peaceful death. Professionals who serve dying patients need to recognize the importance of advance directives as part of a patient's decision to forgo curative treatment for palliative care. OBJECTIVES: SOLACE (Supporters of Life-Affirming Care at End of Life) is a coalition of interdisciplinary professionals in the northern Virginia community dedicated to improving end-of-life care. The objectives of the SOLACE survey were to identify and describe: 1) professionals' perceptions about barriers related to hospice and palliative care, 2) professionals' opinions about barriers related to dying at home, 3) professionals' perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care. METHODS: From several consultations with hospice experts, a survey questionnaire was developed to solicit responses from professionals on palliative care, dying at home, and advance directives. Measures that assessed obstacles to palliative care were modified from previous studies to yield composite barrier scores. From a sample of a variety of participants at a national conference on palliative care (n = 200), 101 subjects returned questionnaires (51 percent) yielding 100 usable completed forms from attendees who demonstrated an interest in palliative care and, in some cases, a high level of personal or professional experience. Survey results were analyzed on respondents' perceptions concerning barriers related to advance directives and the delivery of palliative care. RESULTS: Of the 13 obstacle statements, results show that respondents rated the top three barriers as 1) physician reluctance to make referrals (mean = 4.23), 2) physician lack of familiarity with availability and suitability of hospice (mean = 3.93), and 3) association of hospice with death (mean = 3.93). There was a statistically significant difference in scores for respondents from hospitals and respondents from hospices on their assessment of barriers for the association of hospice with death (t = -2.09, p < .05) and the lack of information about the severity of or irreversibility of the patients illness (t = -2.78, p < .01).