Family perspectives on end-of-life care experiences in nursing homes

PURPOSE: The purpose of this study is to expand knowledge regarding end-of-life care received in nursing homes through the use of narrative interviews with family members close to the decedents. DESIGN AND METHODS: We conducted follow-up qualitative interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. Interviews were taped and transcribed and then coded by a five-member, multidisciplinary team to identify overarching themes. RESULTS: Respondents report that the needs of dying patients are often insufficiently addressed by health care professionals. Their low expectations of nursing homes and their experiences cause many to become vigilant advocates. Respondents report that physicians are often "missing in action," and they desire more and better trained staff. They indicate that regulations reinforce task-focused rather than person-centered care and add to patient and family burden. Although hospice services are reported to enhance end-of-life care, respondents also report late referrals and occasional misunderstandings about the role and scope of hospice. IMPLICATIONS: Sustained efforts on many fronts are needed to improve end-of-life care in nursing homes. Policy recommendations are suggested.     

End-of-life care in assisted living and related residential care settings: comparison with nursing homes

OBJECTIVES: To define the current state of end-of-life care in residential care/assisted living (RC/AL) facilities and nursing homes (NHs) and to compare these two types of care settings. DESIGN: Interviews of staff and family informants about deaths that occurred during a longitudinal study. SETTING: Fifty-five RC/AL facilities and 26 NHs in Florida, Maryland, New Jersey, and North Carolina. PARTICIPANTS: Two hundred twenty-four staff and family informants that best knew the 73 RC/AL residents and 72 NH residents who died in or within 3 days after discharge from a study facility. MEASUREMENTS: Telephone interviews conducted with the facility staff member who knew the decedent best and the family member who was most involved in care during the last month of life of the decedent. Data were collected on circumstances of death, perceptions of dying process, cause of death, care during the last month of life, mood, discomfort, and family satisfaction. RESULTS: Most decedents died in the facility where they had resided, and more than half of the subjects were alone when they died. Greater proportions of staff and family in the NHs knew that the resident's death was only days or weeks away. Both RC/AL and NH residents experienced few highly negative moods, and even on their most uncomfortable day, the overall discomfort was low for residents in both facility types. Summary ratings of family satisfaction were significantly higher for the RC/AL (32.1) than the NH (41.2) group (P=.016). CONCLUSION: These data suggest that end-of-life care in RC/AL settings appears similar in process and outcomes to that provided in NHs. Thus, aging and dying-in-place can effectively occur in RC/AL.     

Hospice and palliative care in nursing homes

This article reviews the challenges inherent in providing high-quality palliative care to dying nursing home residents and summarizes the efforts to address these challenges. It is suggested that a stronger physician presence and oversight of physicians knowledgeable in palliative care in nursing homes are needed to improve the quality of end-of-life care in nursing homes.     

Nursing home residents covered by Medicare risk contracts: early findings from the EverCare evaluation project

OBJECTIVES: To compare the characteristics of a sample of EverCare nursing home residents with two control groups: one composed of other residents in the same homes and another made up of residents in matched nursing homes. To compare levels of unmet need, satisfaction with medical care, and the use of advance directives. DESIGN: Quasi-experimental design using two control groups to minimize selection effects. Information collected by in-person surveys of nursing home residents and telephone surveys of proxies and family members. SETTING: Nursing homes affiliated with EverCare and matched control homes. PARTICIPANTS: Nursing home residents and their family members. MEASUREMENTS: Questionnaire addressing function (activities of daily living (ADLs)), unmet care needs, pain, use of advance directives, satisfaction, and caregiver burden. RESULTS: In general, the experimental and control groups were similar, but the EverCare sample had more dementia and less ADL disability. Family members in the EverCare sample expressed greater satisfaction with several aspects of the medical care they received than did controls. Satisfaction of residents in the EverCare sample was more comparable with that of controls. There was no difference in experience with advance directives between EverCare and control groups. CONCLUSIONS: EverCare appears to be a model of managed care worth tracking. It is producing care that is at least comparable with what is available in the fee-for-service environment, with evidence that families seem to appreciate the added attention. There is some suggestion that it has enrolled a less disabled but more demented population. Pending results on the effects of this care on hospitalization and emergency care should shed useful light.     

Symptom experience of dying long-term care residents

OBJECTIVES: To describe the end-of-life symptoms of nursing home (NH) and residential care/assisted living (RC/AL) residents, compare staff and family symptom ratings, and compare how staff assess pain and dyspnea for cognitively impaired and cognitively intact residents.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 230 long-term care facilities in four states.
PARTICIPANTS: Staff (n=674) and family (n=446) caregivers for dying residents.
MEASUREMENTS: Interview items measured frequency and severity of physical symptoms, effectiveness of treatment, recommendations to improve care, and staff report of assessment.
RESULTS: Decedents' median age was 85, 89% were white, and 77% were cognitively impaired. In their last month of life, 47% had pain, 48% dyspnea, 90% problems with cleanliness, and 72% symptoms affecting intake. Problems with cleanliness, intake, and overall symptom burden were worse for decedents in NHs than for those in RC/AL. Treatment for pain and dyspnea was rated very effective for only half of decedents. For a subset of residents with both staff and family interviews (n=331), overall ratings of care were similar, although agreement in paired analyses was modest (kappa=−0.043–0.425). Staff relied on nonverbal expressions to assess dyspnea but not pain. Both groups of caregivers recommended improved application of treatment and increased staffing to improve care.
CONCLUSION: In NHs and RC/AL, dying residents have high rates of physical symptoms and need for more-effective palliation of symptoms near the end of life.     

Use of a Structured Life Review and Its Impact on Family Interactions

Communication is vital to our ability to provide quality end-of-life care. Although research has focused on communication between healthcare professionals and the patient/family unit, this qualitative study explored the impact of a life review technique on family interactions. Life review interviews were conducted with 33 participants (residents of a nursing facility and their family members). Follow-up interviews with participants identified potential impacts on family interactions. Themes that emerged included affirmation of prior knowledge, living legacy, new information, opened communication, enhanced understanding, affirmation of the older adult, testimonials, and bridging distant family relationships. A review of the themes and potential uses for this technique are discussed.     

Pain, dyspnea, and the quality of dying in long-term care

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care.
DESIGN: After-death interviews.
SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states.
PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents.
MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea.
RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P =.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P =.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities.
CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.     

Effects of nursing practice environments on quality outcomes in nursing homes

The objective of this study was to determine whether nurse staffing levels and modifiable characteristics of the nursing practice environment are associated with important quality indicators represented by the percentage of residents with pressure ulcers and numbers of deficiency citations in nursing homes. A cross-sectional design linked nurse survey data, aggregated to the facility level, with Nursing Home Compare, a publicly available federal database containing nursing home-level measures of quality. The facility sample consisted of 63 Medicare- and Medicaid-certified nursing homes in New Jersey, and the nurse survey sample comprised 340 registered nurses providing direct resident care. Characteristics of the practice environment were measured using the Practice Environment Scale of the Nursing Work Index, included in the nurse survey. The total number of deficiency citations, the percentage of residents with pressure ulcers, nurse staffing levels, and facility characteristics were extracted from the Nursing Home Compare database. Results indicated that a supportive practice environment was inversely associated with the percentage of residents with pressure ulcers and fully mediated the effect of profit status on this important outcome. The nursing practice environment and facility size explained 25% of the variance in quality deficiencies. There were no associations between staffing levels and quality indicators. Findings indicate that administrative initiatives to create environments that support nursing practice may hold promise for improving quality indicators in nursing homes.     

Chronic benzodiazepine use in nursing homes: effects of federal guidelines, resident mix, and nurse staffing

OBJECTIVES: To assess the overall prescribing and chronic use of benzodiazepines (BZs) in nursing homes before and after implementation of BZ guidelines by the Health Care Finance Administration (HCFA). A second aim was to identify facility predictors of BZ prescribing and chronic use after guideline implementation. DESIGN: Nonexperimental, observational study design. SETTING: Drug use was assessed in 16 randomly selected skilled nursing facilities in Wisconsin before 1990 and again in 1993-1994. PARTICIPANTS: One thousand one hundred eighty-one Medicaid-funded residents at baseline and 1,650 Medicaid-funded residents at follow-up. MEASUREMENTS: Drug use measures included percentage of residents with prescribed BZs and percentage of residents with chronic BZ use (defined as >or=4 months of continuous use). A 4-month cutoff was used because HCFA guidelines consider this length of continuous use to be potentially excessive. Facility predictors of drug use included resident demographic and diagnostic mix, size, ownership, Medicaid per diem, and nurse staffing. RESULTS: Before 1990, one-fourth of all residents were prescribed a BZ and nearly one-tenth of all residents had chronic BZ use. Federal guidelines had nonsignificant effects on these measures; BZ prescribing declined only 3.6% (26.4-22.8%) and chronic use declined only 1.3% (9.2-7.9%). Regression results showed that overall prescribing at follow-up was higher in facilities with more female residents (beta= .52, P= .018) and residents with psychiatric disorders (beta= .41, P= .045). However, nurse staffing was the only significant predictor of chronic BZ use. As expected, better nurse staffing was associated with lower rates of chronic use (beta= -0.46, P= .037). CONCLUSION: Efforts to improve BZ use in nursing homes must address the need for better nurse staffing and better assessment and management of psychiatric disorders that can trigger BZ prescribing.     

Purchasing or providing nursing home care: can quality of care data provide guidance

OBJECTIVES: To examine whether quality of care differed for veterans in Department of Veterans Affairs (VA) nursing homes and those on contract in community nursing homes, and whether the VA was contracting with nursing homes providing better quality of care than other nursing homes. DESIGN: Observational study using administrative databases from 1997 to 1999. SETTING: Ten VA and 650 community nursing homes in New York state. PARTICIPANTS: Four thousand seven hundred sixty-three veteran and 195,438 nonveteran residents of these nursing homes. MEASUREMENTS: Risk-adjusted rates of pressure ulcer development, functional decline, behavioral decline, and mortality. RESULTS: Veterans in VA nursing homes were significantly (P< .05) less likely to develop a pressure ulcer (odds ratio (OR)=0.63) but more likely to experience functional decline (OR=1.6) than veterans in community nursing homes. Residents of community nursing homes with VA contracts were significantly (P< .05) less likely to develop a pressure ulcer (OR=0.91) but more likely to die than residents in noncontract homes. Few nursing homes were consistently among the best or worst performers on all measures; only seven of 650 nursing homes were in the top or bottom decile and 34 in the top or bottom quartile for each measure. CONCLUSION: Large purchasers and providers of nursing home care such as the VA are unlikely to find information on quality of care useful in making decisions on whether they should "make" or "buy" care. Nursing homes performing well on one quality measure may perform poorly on another, and it is difficult to identify nursing homes that are consistently among the best or worst. Other consumers may encounter similar difficulties when using data on nursing home quality.     

Advance care planning and end-of-life care for hospitalized nursing home residents

OBJECTIVES: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life. DESIGN: Constant comparative analysis of deceased nursing home resident cases.SETTING: A not-for-profit Jewish nursing home. PARTICIPANTS: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center. MEASUREMENTS: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker. RESULTS: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management. CONCLUSION: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.     

Randomized trial of a warfarin communication protocol for nursing homes: an SBAR-based approach

Background

More than 1.6 million Americans currently reside in nursing homes. As many as 12% of them receive long-term anticoagulant therapy with warfarin. Prior research has demonstrated compelling evidence of safety problems with warfarin therapy in this setting, often associated with suboptimal communication between nursing home staff and prescribing physicians.

Methods

We conducted a randomized trial of a warfarin management protocol using facilitated telephone communication between nurses and physicians in 26 nursing homes in Connecticut in 2007-2008. Intervention facilities received a warfarin management communication protocol using the approach “Situation, Background, Assessment, and Recommendation” (SBAR). The protocol included an SBAR template to standardize telephone communication about residents on warfarin by requiring information about the situation triggering the call, the background, the nurse's assessment, and recommendations.

Results

There were 435 residents who received warfarin therapy during the study period for 55,167 resident days in the intervention homes and 53,601 in control homes. In intervention homes, residents' international normalized ratio (INR) values were in the therapeutic range a statistically significant 4.50% more time than in control homes (95% confidence interval [CI], 0.31%-8.69%). There was no difference in obtaining a follow-up INR within 3 days after an INR value ≥4.5 (odds ratio 1.02; 95% CI, 0.44-2.4). Rates of preventable adverse warfarin-related events were lower in intervention homes, although this result was not statistically significant: the incident rate ratio for any preventable adverse warfarin-related event was .87 (95% CI, .54-1.4).

Conclusion

Facilitated telephone communication between nurses and physicians using the SBAR approach modestly improves the quality of warfarin management for nursing home residents. (Registered on ClinicalTrials. gov; URL:http://clinicaltrials.gov/. Registration number: NCT00682773).     

End-of-life care in black and white: race matters for medical care of dying patients and their families

OBJECTIVES: To compare the end-of-life medical care experienced by African-American and white decedents and their families. DESIGN: Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design. SETTING: Hospitals, nursing homes, and home-based medical services across the United States. PARTICIPANTS: Surrogates (N=1,447; primarily family members) for decedents from 22 states. MEASUREMENTS: Validated end-of-life care outcomes concerning symptom management, decision-making, informing and supporting families, individualized care, coordination, service utilization, and financial impact. RESULTS: Family members of African-American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician communication, concerns with being informed (OR=2.5), and concerns with family support (OR=2.6). Family members of African Americans were less likely than those of whites to report that the decedent had treatment wishes (OR=0.3) or written advance care planning documents (OR=0.4). These differences persist when limiting the sample to respondents whose expectations for life-sustaining treatments matched treatments received. Family members of African-American decedents also were more likely to report financial hardship due to savings depletion (OR=2.1) or difficulty paying for care (OR=2.0) and that family/friends (OR=2.0) or home health workers (OR=1.9) provided home care. CONCLUSION: This national study brings evidence that racial disparities persist into end-of-life care, particularly regarding communication and family needs. Results also suggest different home care patterns and levels of financial impact.     

Bereaved family member perceptions of quality of end-of-life care in U.S. regions with high and low usage of intensive care unit care

OBJECTIVES: To compare the quality of end-of-life care of persons dying in regions of differing practice intensity. DESIGN: Mortality follow-back survey. SETTING: Geographic regions in the highest and lowest deciles of intensive care unit (ICU) use. PARTICIPANTS: Bereaved family member or other knowledgeable informants. MEASUREMENTS: Unmet needs, concerns, and rating of quality of end-of-life care in five domains (physical comfort and emotional support of the decedent, shared decision-making, treatment of the dying person with respect, providing information and emotional support to family members). RESULTS: Decedents in high- (n=365) and low-intensity (n=413) hospital service areas (HSAs) did not differ in age, sex, education, marital status, leading causes of death, or the degree to which death was expected, but those in the high-intensity ICU HSAs were more likely to be black and to live in nonrural areas. Respondents in high-intensity HSAs were more likely to report that care was of lower quality in each domain, and these differences were statistically significant in three of five domains. Respondents from high-intensity HSAs were more likely to report inadequate emotional support for the decedent (relative risk (RR)=1.2, 95% confidence interval (CI)=1.0-1.4), concerns with shared decision-making (RR=1.8, 95% CI=1.0-2.9), inadequate information about what to expect (RR=1.5, 95% CI=1.3-1.8), and failure to treat the decedent with respect (RR=1.4, 95% CI=1.0-1.9). Overall ratings of the quality of end-of-life care were also significantly lower in high-intensity HSAs. CONCLUSION: Dying in regions with a higher use of ICU care is not associated with improved perceptions of quality of end-of-life care.     

Factors Associated with Potentially Preventable Hospitalization in Nursing Home Residents in New York State: A Survey of Directors of Nursing

OBJECTIVES: To describe characteristics of New York State nursing homes and identify factors associated with potentially preventable hospitalization in nursing home residents. DESIGN: Cross‐sectional survey. SETTING: Randomly selected nursing homes in New York State. PARTICIPANTS: One hundred forty‐seven directors of nursing (DONs). MEASUREMENTS: Data were collected using a Web‐based survey completed in January 2008. Variables included specific aspects of facility environment, nurse and aide services, resource availability, perceived determinants of hospitalization, and nursing home practice. Stepwise multivariate linear regression examined the associations between perceived determinants and potentially preventable hospitalization. RESULTS: Factors associated with potentially preventable hospitalization included presence of nursing staff trained to communicate effectively with physicians (P<.001); easy access to urgent laboratory results in less than 4 hours on weekends (P=.03); that physicians attempt to treat patients within the nursing home and admit to the hospital as a last resort (P<.001); higher reported proportion of residents enrolled in managed care plans for regular medical care (P=.04); higher perceived likelihood that illness will cause death (P=.03); perceived inadequate access by physicians to residents' and prior medical history, laboratory results, and electrocardiograms (ECGs) (P=.02), as reported by DONs. CONCLUSION: Efficient and effective care depends on continuity of communication between nurses and physicians and adequate access to patients' medical history, laboratory results, and ECGs. The following operational strategies may help institutions reduce potentially preventable hospitalizations: ensure effective communication between nursing staff and physicians regarding patients' condition; provide physicians with easy access to stat laboratory results in less than 4 hours on weekends and adequate access to the patient's medical history, laboratory results, and ECGs; and motivate physicians to treat residents within the nursing home whenever possible.     

Is the mealtime experience in nursing homes understood? A qualitative study

Aim: The aim of the present study was to explore the significance of the mealtime experience among residents of nursing homes in Spain. Methods: A qualitative phenomenological approach was followed. An initial purposeful sampling of Spanish residents in for‐profit nursing homes in the southern area of Madrid was carried out. A theoretical sampling was also implemented in order to gain a more in‐depth understanding of dependence. Inclusion criteria for nursing home residents were: age (60 years or older) and lack of any cognitive impairment. Data were collected using unstructured and semistructured interviews. Data collection was concluded once theoretical saturation was reached, and the data were analysed using the Giorgi proposal. Results: A total of 26 residents with a mean age of 83 years were included. Three main themes that describe the significance of meals in nursing homes emerged from the data: (i) timing of the meals – mealtimes serve as a point of reference for organizing activities in the nursing home and orient the residents during the day; (ii) table allocation – table allocation depends on the judgment of the personnel, the behavior of each resident and on the input from the residents that use a table; and (iii) the meals themselves – food is experienced as a privilege, as a sign of autonomy and normality, and as an indicator of personal identity. Conclusion: Understanding the social significance of meals for residents in nursing homes would provide deeper insight into resident expectations. This will in turn help to improve service and quality of life for residents. Geriatr Gerontol Int 2013; 13: 482–489 .     

Frontline caregiver daily practices: a comparison study of traditional nursing homes and the Green House project sites

OBJECTIVES: To describe differences in frontline caregiver daily practice in two types of skilled nursing facility (SNF) settings, Green House (GH) homes and traditional SNF units, related to overall staffing (nursing and nonnursing departments), direct care and indirect care time per resident day, and staff time interacting with residents. DESIGN: Observational, interview, and survey study comparing frontline caregiver daily practice in GH homes and traditional SNFs. SETTING: Twenty‐seven sites (GH homes and traditional SNF units). PARTICIPANTS: Two hundred forty staff from participating sites. MEASUREMENTS: Site and resident characteristics, nursing and nonnursing department staff hours per resident day (HPRDs), certified nursing assistant (CNA) direct and indirect care HPRDs, and CNA HPRDs engaged with residents. RESULTS: Staffing from nursing and nonnursing departments combined, excluding administrative, was 0.3 less HPRDs (18 minutes) in GH homes than in traditional SNFs. CNAs in GH homes, although responsible for more nonnursing activities such as laundry and housekeeping, spent 0.4 more HPRDs (24 minutes) in direct care activities than CNAs in traditional SNFs. CONCLUSION: The results challenge the assumption that staffing efficiencies cannot be achieved in small environments such as a GH home. Although the GH model has higher ratio of CNA staff to residents than traditional SNF units, overall staff time (combined total of nursing and nonnursing HPRDs) is slightly less in GH homes. The GH model allows for expanded responsibilities of CNAs in indirect care activities and more time in direct care activities and engaging directly with resident.