Satisfaction with end-of-life care for nursing home residents with advanced dementia

OBJECTIVES: To identify factors associated with satisfaction with care for healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia. DESIGN: Cross-sectional study. SETTING: Thirteen NHs in Boston. PARTICIPANTS: One hundred forty-eight NH residents aged 65 and older with advanced dementia and their formally designated HCPs. MASUREMENTS: The dependent variable was HCPs' score on the Satisfaction With Care at the End of Life in Dementia (SWC-EOLD) scale (range 10-40; higher scores indicate greater satisfaction). Resident characteristics analyzed as independent variables were demographic information, functional and cognitive status, comfort, tube feeding, and advance care planning. HCP characteristics were demographic information, health status, mood, advance care planning, and communication. Multivariate stepwise linear regression was used to identify factors independently associated with higher SWC-EOLD score. RESULTS: The mean ages+/-standard deviation of the 148 residents and HCPs were 85.0+/-8.1 and 59.1+/-11.7, respectively. The mean SWC-EOLD score was 31.0+/-4.2. After multivariate adjustment, variables independently associated with greater satisfaction were more than 15 minutes discussing advance directives with a care provider at the time of NH admission (parameter estimate=2.39, 95% confidence interval (CI)=1.16-3.61, P<.001), greater resident comfort (parameter estimate=0.10, 95% CI=0.02-0.17, P=.01), care in a specialized dementia unit (parameter estimate=1.48, 95% CI=0.25-2.71, P=.02), and no feeding tube (parameter estimate=2.87, 95% CI=0.46-5.25, P=.02). CONCLUSION: Better communication, greater resident comfort, no tube feeding, and care in a specialized dementia unit are modifiable factors that may improve satisfaction with care in advanced dementia.     

POLST recall,concordance, and decision quality outcomes among nursing home residents and surrogate decision-makers

Background

POLST orders are actionable in an emergency, so it is important that the decisions be of high quality and concordant with current preferences. The goal of this study is to determine the relationship between concordance and decision quality outcomes, including decision satisfaction and decisional conflict, among nursing facility residents and surrogates who recall POLST.

Methods

We completed structured interviews in 29 nursing facilities with 275 participants who had previously signed a POLST form. This included residents who were still making their own medical decisions (n = 123) and surrogate decision-makers for residents without decisional capacity (n = 152). POLST recall was defined as remembering talking about and/or completing the POLST form previously signed by the participant. Concordance was determined by comparing preferences elicited during a standardized interview with the POLST form on file. Decisional conflict, decision satisfaction, and conversation quality were assessed with standardized tools.

Results

Half of participants (50%) remembered talking about or completing the POLST form, but recall was not associated with the length of time since POLST completion or concordance with existing preferences. In multivariable analyses, there was no association between POLST recall, concordance, and decision quality outcomes, though satisfaction was associated with conversation quality.

Conclusions

Half of the residents and surrogates in this study recalled the POLST they previously signed. Neither the age of the form nor the ability to recall the POLST conversation should be considered indicators of whether existing POLST orders match current preferences. Findings confirm a relationship between POLST conversation quality and satisfaction, underscoring the importance of POLST completion as a communication process.     

Decisions to hospitalize nursing home residents dying with advanced dementia

OBJECTIVES: To describe the prevalence of, timing of, and factors associated with decisions not to hospitalize nursing home residents with advanced dementia who were dying. DESIGN: Retrospective cohort study. SETTING: Six hundred seventy five-bed nursing facility in Boston. PARTICIPANTS: Two hundred forty residents in a teaching nursing home who died between January 2001 and December 2003 with advanced dementia. MEASUREMENTS: The prevalence and timing of do-not-hospitalize (DNH) orders were determined from the medical record. Data describing demographic characteristics, health conditions, advance care planning, sentinel events, and health services usage during the last 6 months of life were examined. Factors associated with having a DNH order were identified. RESULTS: At the time of death, 83.8% of subjects had a DNH order. The prevalence of DNH orders was 50.0% and 34.4%, 30 and 180 days before death, respectively. Hospital transfers were common during the last 6 months of life (24.6%). Factors independently associated with having a DNH order before death included surrogate decision-maker was not the subject's child (adjusted odds ratio (AOR)=4.39, 95% confidence interval (CI)=1.52-12.66), eating problems (AOR=4.17, 95% CI=1.52-11.47), aged 92 and older (AOR=2.78, 95% CI=1.29-5.96), and length of stay 2 years or longer (AOR=2.34, 95% CI=1.11-4.93). CONCLUSION: For most institutionalized persons with advanced dementia, a decision to forgo hospitalization is not made until death is imminent. Thus, hospital transfers are common near the end of life. The finding that DNH orders are associated with patient and surrogate factors can help clinicians identify cases in which decisions to forgo hospitalizations may be facilitated.     

Association between advance directives and quality of end-of-life care: a national study

OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self-Determination Act. DESIGN: Mortality follow-back survey. SETTING: People who died in a nursing home, hospital, or at home. PARTICIPANTS: Bereaved family member or other knowledgeable informant. MEASUREMENTS: Telephone interviewers that asked about the use of written ADs, use of life-sustaining treatment, and quality of care by asking whether staff provided desired symptom relief, treated the dying with respect, supported shared decision-making, coordinated care, and provided family with the needed information and emotional support. RESULTS: Of the 1,587 people who died, 70.8% had an AD. Persons who died at home with hospice or in a nursing home were more likely to have an AD. In addition, those with an AD were less likely to have a feeding tube (17% vs 27%) or use a respirator in the last month of life (11.8% vs 22.0%). Bereaved family members who reported that the decedent did not have an AD were more likely to report concerns with physician communication (adjusted odds ratio (AOR)=1.4, 95% confidence interval (CI)=1.1-1.6) and with being informed about what to expect (AOR=1.2, 95% CI=1.0-1.3). No statistically significant differences were observed in other outcomes. Even in those with an AD, important quality concerns remained; one in four reported an unmet need in pain, one in two reported inadequate emotional support for the patient, and one in three stated inadequate family emotional support. CONCLUSION: Bereaved family member report of completion of an AD was associated with greater use of hospice and fewer reported concerns with communication, yet important opportunities remain to improve the quality of end-of-life care.     

Quality of care of nursing home residents hospitalized with heart failure

OBJECTIVES: To determine whether the quality of heart failure (HF) care of hospitalized nursing home (NH) residents is different from that of patients admitted from other locations. DESIGN: Retrospective chart review. SETTING: Nursing home residents discharged from hospitals. PARTICIPANTS: Medicare beneficiaries aged 65 and older. MEASUREMENTS: Subjects were discharged with a primary discharge diagnosis of HF in Alabama in 1994. They were categorized as having been admitted from a NH or other locations. Bivariate logistic regression analysis was used to estimate crude odds ratios (ORs) and 95% confidence intervals (CIs) for left ventricular function (LVF) evaluation and angiotensin-converting enzyme (ACE) inhibitor use for NH residents relative to nonresidents. Multivariate generalized linear models were developed to determine independence of associations. RESULTS: Subjects (N = 1,067 years) had a mean age +/- standard deviation of 79 +/- 7.4, 60% were female, and 18% were African Americans. Fewer NH residents (n = 95) received LVF evaluation (39% vs 60%, P <.001) and ACE inhibitors (50% vs 72%, P =.111). NH residents had lower odds for LVF evaluation (OR = 0.42, 95% CI = 0.27-0.64). The odds for ACE inhibitor use, although of similar magnitude, did not reach statistical significance (OR = 0.40, 95% CI = 0.12-1.28). After adjustment of patient and care characteristics, admission from a NH was significantly associated with lower LVF evaluation (adjusted OR = 0.64, 95% CI = 0.49-0.82) but not with ACE inhibitor use (adjusted OR = 0.59, 95% CI = 0.16-2.14). CONCLUSIONS: Quality of HF care received by hospitalized NH residents was lower than that received by others. Further studies are needed to determine reasons for the lack of appropriate evaluation and treatment of NH patients with HF who are admitted to hospitals.     

Effect of do-not-resuscitate orders on hospitalization of nursing home residents evaluated for lower respiratory infections

OBJECTIVES: To determine resident and facility characteristics associated with do-not-resuscitate (DNR) orders and to test the effect of DNR orders on hospitalization of acutely ill nursing home (NH) residents with lower respiratory tract infections (LRIs). DESIGN: Prospective cohort. SETTING: Thirty-six NHs (almost 4,000 residents) in central and eastern Missouri in the Missouri Lower Respiratory Infection study. PARTICIPANTS: NH residents with a LRI (n=1031). MEASUREMENTS: Data were obtained from new Minimum Data Set evaluations, resident examination, and chart review. Associations between resident, physician, and facility characteristics and the presence of a DNR order and hospitalization within 30 days from evaluation for an LRI were analyzed. RESULTS: Sixty percent of subjects had a DNR order, and 2% had a do-not-hospitalize order. Resident characteristics associated with a DNR order included older age, white race, having a surrogate decision-maker, NH residence for longer than 3 years, and more-impaired cognition. Residents with DNR orders were more likely to live in facilities with more licensed beds, a lower proportion of Medicaid recipients, and a higher prevalence of influenza vaccination. After controlling for potential confounders, residents with a DNR order before the acute illness episode were significantly less likely to be hospitalized (adjusted odds ratio=0.69, 95% confidence interval=0.49-0.97). CONCLUSION: DNR orders independently reduce the risk of hospitalization for LRI and may function as a marker for undocumented care limitations or as a mandate to limit care (unrelated to resuscitation) in NH residents with LRI.     

Physicians "missing in action": family perspectives on physician and staffing problems in end-of-life care in the nursing home

OBJECTIVES: To understand the roles of physicians and staff in nursing homes in relation to end-of-life care through narrative interviews with family members close to a decedent. DESIGN: Qualitative follow-up interviews with 54 respondents who had participated in an earlier national survey of 1,578 informants. SETTING: Brown University interviewers conducted telephone interviews with participants throughout the United States. PARTICIPANTS: The 54 participants agreed to a follow-up qualitative interview and were family members or close to the decedent. MEASUREMENTS: A five-member, multidisciplinary team to identify overarching themes taped, transcribed, and then coded interviews. RESULTS: Respondents report that healthcare professionals often insufficiently address the needs of dying patients in nursing homes and that "missing in action" physicians and insufficient staffing create extra burdens on dying nursing home residents and their families. CONCLUSION: Sustained efforts to increase the presence of physicians and improve staffing in nursing homes are suggested to improve end-of-life care for dying residents in nursing homes.     

Advance care planning by proxy for residents of long-term care facilities who lack decision-making capacity

This report examines whether long-term care facilities should implement policies and procedures to support advance care planning by proxy for residents who lack decision-making capacity. The report focuses on advance care planning in the Department of Veterans Affairs. After reviewing clinical, legal, and ethical perspectives, the authors conclude that advance proxy planning is ethically sound and can improve patient care. However, because experience with advance proxy planning is still fairly limited, the authors do not recommend that a particular standardized approach be mandated at the national level. Instead, local facilities are advised to develop their own policies and then evaluate their effect. The report contains specific recommendations for the advance proxy planning process.     

The personal and social context of planning for end-of-life care

OBJECTIVES: To examine the potential facilitators of or deterrents to end-of-life planning for community-dwelling older adults, including personal (health-related and sociodemographic) and social (physician and family) influences. DESIGN: In-person interviews with older adults, telephone interviews with physicians and family members. SETTING: Cleveland, Ohio. PARTICIPANTS: Two hundred thirty-one adults aged 65 to 99 who were aging in place, 99 of their primary care physicians, and 127 of their family members. MEASUREMENTS: Questions assessing older adults' discussions with others about end-of-life plans, implementation of advance directives, and physical (Older American Resources and Services) illness index and mental (Short Portable Mental Status Questionnaire) health status. RESULTS: Just fewer than half of older adults had executed an advance directive and discussed their wishes with others. Only personal characteristics of elderly individuals were related to end-of-life plans, with whites, unmarried individuals, and younger adults more likely to have made preparations. Older adults' health status, as evaluated by the patient, physician, and caregiver, did not relate to the tendency to have made advance care plans. Older adults' family members were much more likely to report knowledge of advance care plans than were physicians. CONCLUSION: These findings suggest that many physicians are not talking with their patients about their end-of-life wishes. Furthermore, the propensity to have such discussions may relate more to the personal preferences and level of comfort of patients, physicians, and family members than on the health status of the older adult.     

Changes over time in POLST use and content by race and ethnicity among California nursing home residents

Background

Physician Orders for Life-Sustaining Treatment (POLST) are commonly used for nursing home (NH) residents. Treatment orders differ across race and ethnicity, presumably related to cultural and socioeconomic variation and levels of access to care and trust. Because national efforts focus on addressing the underpinnings of racial and ethnic differences in treatment (i.e., access to care and trust), we describe POLST use and content by race and ethnicity.

Methods

California requires NHs to document POLST completion and content in the Minimum Data Set. We describe POLST completion and content for all California NH residents from 2011 to 2016 (N = 1,120,376). Adjusting for resident characteristics, we compared changes in completion rate and differences by race and ethnicity in POLST content—orders for cardiopulmonary resuscitation (CPR), do not resuscitate (DNR), CPR with full treatment, DNR with selective treatment or comfort orders, and if unsigned.

Results

POLST completion increased across all racial and ethnic groups from 2011 to 2016; by 2016, NH residents had a POLST two-thirds or more of the time. In 2011, Black residents had a POLST with a CPR order 30.4% of the time, Hispanic residents 25.6%, and White residents 19.7%. By 2016, this grew to 42.5%, 38.2%, and 28.1%, respectively, with Black and Hispanic residents demonstrating larger increases than White residents (p < 0.001). Increases over time in POLST with CPR and full treatment were greater for Black and Hispanic residents compared to White residents. The increase in POLST with DNR and DNR with Selective treatment and Comfort orders was greater for White compared to Black patients (p < 0.001). Unsigned POLST with CPR and DNR orders decreased across all racial and ethnic groups.

Conclusions

Racial and ethnic differences in POLST intensity of care orders increased between 2011 and 2016 suggesting that efforts to mitigate factors underlying differences were ineffective. Studies of newer POLST data are imperative.     

Advance end-of-life healthcare planning in an acute NHS hospital setting; development and evaluation of the Expression of Healthcare Preferences (EHP) document

Objective: design and evaluate a document to enable older inpatientsin an NHS hospital to discuss and record end-of-life healthcarepreferences. Design: user and professional collaboration to design the Expressionof Healthcare Preferences (EHP). Prospective questionnaire surveyand outcome evaluation. Setting and Participants: inpatients on wards for older adultsin a London NHS Hospital Trust. Results: the EHP consists of a form and explanatory booklet.95 patients (mean age 81, median MMSE 28) received the EHP.61 (64% (54–74%)) read the EHP and 29 (48% (35–61%))of these recorded their healthcare preferences in the EHP form.The form prompted end-of-life care discussions between 43% (30–57%)of these patients and medical staff and between 52 (38–65)of these patients and "those close to them". The EHP was highlyrated: on a score of 1 to 10 it was thought to be helpful (medianscore 8), interesting (8), informative (8) and reassuring (7)but not upsetting (1). Conclusion: the EHP is an end-of-life advance healthcare planningtool that we have shown can be used to prompt older inpatientsto discuss and record their end-of-life healthcare preferences.     

Advance care planning in COPD

The review aims to discuss current concepts in advance care planning (ACP) for patients with COPD, and to provide a narrative review of recent trends in ACP and end-of-life care for patients with COPD. ACP, which involves patient-clinician communication about end-of-life care, can improve outcomes for patients and their families, and may be especially relevant for patients with COPD. Effective patient-clinician communication is needed to inform and prepare patients about their diagnosis, treatment, prognosis and what dying might be like. It is important for clinicians to understand patients' values and preferences for life-sustaining treatments as well for their site of terminal care. Unfortunately, discussions about ACP and end-of-life care in current practice are scarce, and their quality is often poor. ACP can improve outcomes for patients and their relatives. The challenge remains in the practical implementation of ACP in the clinical setting, especially for patients with COPD. ACP should be implemented alongside curative-restorative care for patients with advanced COPD. The disease course of COPD is such that there will rarely be a clear transition point predicting the timing of the need for initiation of end-of-life care. Future studies should focus on interventions that facilitate concurrent ACP and prepare patients for making in-the-moment decisions, with the goal of improving the quality of end-of-life care.