End-of-life Care Preferences Research Articles

Effectiveness of advance care planning programmes in improving end-of-life outcomes for individuals with dementia and their caregivers in nursing homes: protocol for a systematic review and meta-analysis

IntroductionWith advances in medicine and the resultant increased ageing population, dementia, including Alzheimer’s disease, has become a leading cause of death in individuals aged over 65 years in nursing homes....

Multi-site randomized trial of a collaborative palliative and oncology care model for patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) receiving non-intensive therapy.

LBA6508 Background: Patients with AML and high-risk MDS receiving non-intensive chemotherapy have substantial quality of life (QOL) impairments and often do not engage in timely discussions with their clinicians about their end-of-life (EOL) care preferences. Yet interventions to optimize EOL care delivery and QOL for this population are lacking. Methods: We conducted a multi-site randomized clinical trial of a collaborative palliative and oncology care model compared to usual care in 115 adult patients with AML and high-risk MDS receiving non-intensive therapy at two tertiary care academic hospitals. Patients with a new diagnosis or relapse/ refractory disease were eligible to participate within 30 days of initiating therapy. Patients assigned to the intervention met with a palliative care clinician monthly in the outpatient setting and a minimum of twice weekly during every hospital admission. Patients assigned to usual care were seen by palliative care only upon request. We used Natural Language Processing methods to interrogate the Electronic Health Record (EHR) with a validated algorithm to collect documented EOL care preferences. The primary outcome was to compare time from documentation of EOL care preferences to death between the study arms. Secondary outcomes obtained from the EHR include rates of documentation of EOL care preferences, hospitalization, and hospice utilization at the EOL. Patient-reported secondary outcomes include discussions with clinicians about EOL care preferences, QOL (Functional Assessment of Cancer Therapy – Leukemia), and psychological distress (Hospital Anxiety and Depression Scale) at 3 months after enrollment. Results: We enrolled 51.8% (115/222) of eligible patients. The rate of documented EOL care discussions in the EHR was higher among intervention patients vs. usual care (96.5% vs. 68.4%, P<0.001). Overall, 61.7% (71/115) of patients died, and those receiving the intervention had a longer time from documentation of EOL care preferences to death (41 days vs. 1.5 days, P<0.001). Intervention patients were more likely to report discussing their EOL care preferences with their clinicians (56.9% vs. 14.0%, P<0.001), and less likely to be hospitalized in the last 30 days of life (70.6% vs. 91.9%, P=0.031). There was no difference in hospice utilization at the EOL. At 3 months, patients assigned to the intervention reported better QOL (138.6 vs. 125.5, P=0.010), but no difference in depression or anxiety symptoms compared to those assigned to usual care. Conclusions: Palliative care significantly improved rates of discussion and documentation of EOL care preferences, reduced hospitalization at the EOL, and improved QOL in patients with AML and high-risk MDS. Clinical trial information: NCT03310918 .

The association of religion with advance care planning

Personal preferences influence end-of-life (EOL) decision-making and are commonly associated with engagement in the advance care planning process. Completing an advance directive (AD) allows individuals to formally document and legally report their EOL care preferences. This study explored how two aspects of religion—personal religious beliefs and formal religion practices—may be associated with advance care planning. A national sample of healthy adults in the United States aged 50 years and older (n = 514; 74% cisgender women) completed surveys detailing their EOL preferences, advance care planning, personal religious beliefs, and formal religion practices. Using Ordinary Least Squares (OLS), we find that a higher belief in God’s role at EOL was associated with a higher preference for life-prolonging measures. Using logistic regression, those with a higher belief in God’s role at EOL had lower odds of AD completion. Multiple dimensions of religion should be considered when studying health care preferences and decision-making.

Stability of End-of-Life Care Wishes and Gender-Specific Characteristics of Outpatients with Advanced Cancer under Palliative Therapy: A Prospective Observational Study

Introduction: Early integration of palliative care and advance care planning (ACP) play an increasingly important role in the treatment of patients with advanced cancer. Advance directives (ADs) and patients’ preferences regarding end-of-life (EoL) care are important aspects of ACP. In the outpatient setting, the prevalence of those documents and EoL care wishes is not well investigated, and changes in the longitudinal course are poorly understood. Methods: From June 2020 to August 2022, 67 outpatients with advanced solid tumors undergoing palliative cancer therapy were interviewed on the topic of ACP in a longitudinal course. From this database, the prevalence of ADs, healthcare proxy, EoL care wishes, and the need for counseling regarding these issues were collected. In addition, EoL care wishes were examined for their stability. Results: Fifty-one patients (76.1%) reported having ADs, and 41 patients (61.2%) reported having a healthcare proxy. Nineteen patients (37.3%) with ADs and 11 patients (68.7%) without ADs indicated a wish for counseling. Reported EoL care wishes remained stable over a period of approximately 6 months. Nevertheless, intraindividual changes occurred over time within the different EoL care preferences. The desire for resuscitation and dialysis were significantly higher in men than in women (resuscitation: 15 of 21 men [71.4%] versus 9 of 22 women [40.9%], odds ratio [OR] 3.611, 95% confidence interval [CI], 1.01–12.89, p = 0.048; dialysis: 16 of the 23 men [69.6%] versus 9 of the 25 women [36.0%], OR: 4.063, 95% CI: 1.22–13.58, p = 0.023). Conclusion: Our results show a reasonably high percentage of ADs and healthcare proxies in our study cohort. The observed stability of EoL requests encourages the implementation of structured queries for ADs and healthcare proxy for outpatients undergoing palliative treatment. Our data suggest that gender-specific characteristics should be further investigated in this context.

The influence of religion/spirituality (R/S) on end of life (EOL) outcomes among patients of Dharmic religions with cancer: A mixed methods study.

230 Background: Spiritual support of cancer patients has been associated with improved EOL outcomes; however, little is known about EOL experiences among cancer patients who identify with a Dharmic religion (DR; Hinduism, Buddhism, Sikhism, Jainism). This study used mixed methods to evaluate utilization and EOL care preferences among DR cancer patients. Methods: We conducted a secondary analysis of data from a separate retrospective study of utilization of chaplaincy services by patients hospitalized at a specialty cancer center in New York City between 2015 and 2019. This database included information about patients' religious identification and about accepted measures of EOL care utilization: hospice enrollment in the last 3 days; chemotherapy use in the last 14 days; urgent care center (UCC) visits or ICU admissions within the last 30 days; and inpatient deaths. Bivariate analyses examined associations between religious identification and EOL care metrics. In 2020, we prospectively conducted semi-structured qualitative interviews to explore EOL care preferences among DR patients with cancer at this hospital. Data were coded and analyzed independently and iteratively by two investigators, and themes were identified. Results: Among 28711 patients (99% NDR), DR patients had significantly higher rates of EOL care utilization on every measure (Table). Only 41% of DR patients had ≥ 1 chaplaincy visit. Twenty-two patients (91% Hindu, 9% Sikh) and 11 NDR chaplains were interviewed. Few patients felt religion influenced their preferences for CPR and intubation. Some patients felt uncomfortable discussing EOL practices with their care team, and several chaplains acknowledged lacking knowledge in EOL practices. To improve EOL care for DR patients, chaplains suggested improving chaplaincy training and developing relationships with community-based leaders and volunteers. Conclusions: While DR patients had higher EOL care utilization, most did not report religion influenced their EOL care preferences. Chaplains’ unfamiliarity with DR-specific EOL practices was identified as a barrier. Future work to optimize EOL care for DR patients should improve chaplaincy training and access to faith-concordant spiritual care providers.[Table: see text]

GCIG SB-001/NSGO-CTU-PEACE/ANZGOG 1923/2020: Palliation in gynae-oncology—Patients' expectations and assessment of care.

TPS5635 Background: Patients with advanced gynaecological cancers who are approaching end of life (EOL) have a high symptom burden and following several prior lines of therapy, a low likelihood of response to further anti-cancer treatment. Despite this, 20-30% of women with gynecological cancer received chemotherapy in the last 30 days of life, with potentially detrimental effects on health and quality of life. Little is known about patients' and carers' perceptions and preferences in this phase of illness. Eliciting patient’s values and preferences for EOL care and shared decision-making are central elements of GCIG SB-001/NSGO-CTU-PEACE with the aim of improving patient-centered EOL care. The primary aim of PEACE is to assess the feasibility of collecting data on patient satisfaction towards EOL. Secondary aims include collecting data on patient and carer satisfaction with care, as well as prospective collection of details of their care. Methods: PEACE will prospectively enroll patients in Norway and Australia. Key eligibility criteria include: Patients with gynaecological cancer at an advanced stage with a predicted life expectancy of approximately 4 months. Patients may be on anti-cancer treatment or may be under observation/palliative care. In addition, the patient must be able (both physically and cognitively) to complete patient-reported outcome measures independently. The study will also include an appointed carer (not mandatory). Patient and carer satisfaction with care and the importance of domains of care will be assessed with the CANHELP-Lite individualized (Canadian Health Care Evaluation Project) instrument and FACIT (Functional Assessment of Chronic Illness Therapy). Carer’s perception of the bereavement period and the quality of the patient’s death will be assessed with the CANHELP lite bereavement and the Quality of Death and Dying questionnaire. The study will prospectively collect data on EOL treatment. Patient and carer satisfaction with care and quality of the dying process will be summarized by standard descriptive statistical measures. A sample size of 65 patients would have at least 80% power with 95% confidence to rule out a 60% completion rate in favour of the more interesting 75% rate. Assuming a 10% drop-out rate, PEACE will enrol 73 patients. Enrolment commenced in December 2022. ClinicalTrials.gov Identifier: NCT05142150 Clinical trial information: NCT05142150 .

Key components of goals of care conversations on determining end-of-life care for advanced cancer patients.

12130 Background: Early goals of care (GOC) conversations appear to improve end of life (EOL) care in patients with advanced cancer. However, interventions to facilitate GOC conversations may be unsuccessful in changing EOL outcomes due to incomplete understanding of the components of such conversations essential to impacting EOL care. This study seeks to identify the specific components of GOC conversations between patients and oncologists that are associated with less aggressive EOL care. Methods: This was a secondary, sequential mixed-methods analysis of data collected as part of the Values and Options in Cancer Care (VOICE) study, an RCT to improve communication between patients and oncologists. We used qualitative methods to describe and quantify components of GOC conversations occurring in recorded oncology office visits. We then conducted logistic regression analyses to examine the associations between key components identified with less aggressive EOL care. Results: 107 patients who died within 1 year of the recorded visit were included for analysis. Content related to GOC conversations could be found in 80.4% of visits. Most commonly discussed content was related to treatment (72.9%), followed by prognosis (43.9%), EOL care (17.8%), and patient values and preferences (16.8%). In adjusted analyses, discussion of treatment expectation, offer of an alternative to cancer-directed treatment, and mention of hospice were significantly associated with less aggressive EOL care, OR 4.66 (p = 0.047), OR 6.09 (p = 0.008), and OR 7.60 (p = 0.046) respectively. We did not find significant association between discussion of life expectancy and EOL care. Conclusions: GOC conversations may be more effective at impacting EOL care when it includes discussion regarding treatment expectations and offer of an alternative option to cancer-directed therapy, such as hospice.

Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Background Currently, there is little understanding of how patients with dementia and their caregivers view end-of-life (EOL) care. We thus aimed to study and understand the perception of EOL care by patients with mild dementia and their family caregivers. Methods We conducted qualitative in-depth interviews with 25 patients with mild dementia and their family caregivers belonging to Chinese ethnicity in Singapore. Patients’ and family caregivers’ understanding of illness, patients’ preferences for EOL care and caregiver concerns for the patients were discussed. Thematic analysis was conducted on the transcribed results of the interviews. Results We identified three main themes of person-centred EOL care: planning for cognitive decline and death, supporting patients to die peacefully at home, and supporting family caregivers to cope with patient’s condition. Most patients wanted to die peacefully and be cared for at their home. However, they were reluctant to initiate discussions regarding their future health care and seemed to be in denial that they may decline cognitively in future. Caregiver burden was noticeable for all family caregivers interviewed. Conclusion . Results highlight three important components that would enhance the delivery of patient-centred EOL care in patients with mild dementia. Strategies based on these components can enable family caregivers and health care providers to plan for and provide patient-centred EOL care concordant with patients’ wishes.

Elevated end-of-life spending: A new measure of potentially wasteful health care spending at the end of life.

To construct a new measure of end-of-life (EoL) spending-the elevated EoL spending-and examine its associations with measures of quality of care and patient and physician preferences in comparison with the commonly used total Medicare EoL spending measures. Medicare claims data for a 20% random sample of Medicare fee-for-service (FFS) patients, from the health care quality data for 2015-2016, from the Hospital Compare and the Medicare Geographic Variation public use file, and survey data about patient and physician preferences. We constructed the elevated EoL spending measure as the differential monthly spending between decedents and survivors with the same one-year mortality risk, where the risk was predicted using machine learning models. We then examined the associations of the hospital referral region (HRR)-level elevated EoL spending with various health care quality measures and with the survey-elicited patient and provider preferences. We also examined analogous associations for monthly total EoL spending on decedents. Medicare FFS patients who were continuously enrolled in Medicare Parts A & B in 2015 and were alive as of January 1, 2016. We found a large variation in the elevated EoL spending across HRRs in the United States. There was no evidence of an association between HRR-level elevated EoL spending and established health care quality measures, including those specific to EoL care, whereas total EoL spending was positively associated with certain quality of care measures. We also found no evidence that elevated EoL spending was associated with patient preferences for EoL care. However, elevated EoL spending was positively and significantly associated with physician preferences for treatment intensity. Our findings suggested that elevated EoL spending captures different resource use from conventional measures of EoL spending and may be more valuable in identifying potentially wasteful spending.

Health Care System Distrust, Race, and Surrogate Decision-Making Regarding Code Status.

Previous studies have shown that black patients are more likely to prefer life-sustaining treatments such as cardiopulmonary resuscitation at end-of-life (EOL) compared to non-Hispanic white patients. Given prior racial disparities in health care, distrust has been proposed to explain these preferences. As many hospitalized older adults require surrogates to make medical decisions, we explored surrogates' code status preferences and the role of trust in these decisions. We conducted secondary analyses of an observational study of patient/surrogate dyads admitted to three hospitals in a Midwest metropolitan area. Distrust was assessed using the Revised Health Care System Distrust Scale. A single item asked the surrogate which code status they thought was best for the patient, full code or do not resuscitate. We enrolled 350 patient/surrogate dyads (101 black; 249 white). In bivariate analysis, higher proportion of black surrogates preferred full code (62.4% vs. 38.3%, p=0.0001). After adjusting for trust and sociodemographic and psychological covariates, race was still significantly associated with preference for full code (adjusted odds ratio=2.13; 95% confidence interval: 1.16-3.92; p=0.0153). Surrogate race was not associated with distrust in bivariate or multivariable analysis, adjusting for sociodemographic and psychological covariates (p=0.3049). Although black race was associated with preferences for full code status, we observed no association between race and distrust. Differences in code status preference may be due to other factors related to race and culture. To ensure that patients are receiving EOL care that is consistent with their values, more work is needed to understand the cultural complexities behind EOL care preferences.

Advance care planning and caregiver outcomes: intervention efficacy – systematic review

ContextCaregivers make difficult end-of-life (EOL) decisions for patients, often adversely affecting their own psychological health. Understanding whether advance care planning (ACP) interventions benefit caregivers can enable healthcare systems to use...

Racial Differences in Advance Care Planning and Preferences for End-of-Life Care: Has COVID-19 Changed Anything? (RP312)

Outcomes1. Determine whether the COVID-19 pandemic changed patients’ perceived willingness to talk about advance care planning and preferences for care in the event of severe COVID-19 illness2. Determine whether the preferences for care changed during COVID-19 for Black and White patientsImportanceRates of advance care planning (ACP) are lower and preferences for life-prolong therapies are higher among Black patients than White patients.ObjectiveTo examine whether the COVID-19 pandemic, which has disproportionately affected Black patients, has changed racial differences in beliefs about ACP or preferences for end-of-life (EOL) care.MethodsWe used data from EQUAL ACP, a comparative effectiveness trial of 2 ACP interventions in seriously ill patients ≥65 years old seen in 10 primary care clinics in the South. We asked about COVID-19-related ACP and preferences for care. We used chi-square tests to examine racial differences in responses.ResultsThe sample included 164 Black and 109 White patients. The mean age was 75 years; 63% were female. Similar proportions of Black and White patients (15.9% and 16.8%) reported being “more willing to talk to family/friends/doctors” about wishes for medical care as a result of the pandemic, although most (81.7% and 82.6%) reported “no change in willingness” (p = 0.85). A greater proportion of White than Black patients (26.6% vs. 20.7%) reported talking to family or friends about their wishes for COVID-19-related medical care. There were significant racial differences (p < .001) in EOL care preferences in the event of severe COVID illness. Black patients (36% vs. 12%) were more likely to want all treatments to keep them alive as long as possible, and White patients (75% vs. 55%) were more likely to only want a time-limited trial of life-prolonging measures.ConclusionIn this sample, most patients reported that the COVID-19 pandemic has not changed their wiliness to participate in ACP discussions. Black patients were more likely than White patients to want life-prolonging measures in the event of severe COVID illness.ImpactFurther studies should identify disparities in the quality of palliative care for patients with COVID-19 and determine potential drivers.

Factors Influencing Older Adults' End-of-Life Care Preferences.

The objective of this study was to explore factors influencing Taiwanese older adults' end-of-life (EOL) care preferences. A cross-sectional questionnaire survey was conducted in 2 geriatric wards of a veterans' hospital. Fifty-five older adults aged 65 years or older were included. Structured questionnaires were used to collect data regarding demographic characteristics, EOL care preferences, stages of change for advance care planning behaviors, and reluctance to burden others. The study revealed that nearly 60% of the participants preferred to let their spouses, adult children, or health care professionals make the decisions. Furthermore, 83.6% of the participants lived with their family members and were moderately to severely disabled with a certain degree of dependence on their family members. Sex, independence, discussion of advance care planning with family members, and completion of advance directives were significantly correlated with EOL care preferences. The regression model showed that the participants' discussion of advance care planning with their family members influenced their EOL care preferences. The results demonstrate that family is an essential consideration for older adults choosing EOL care. Accordingly, because Chinese culture focuses on family harmony, improving communication between older adults and their family members is crucial for promoting advance care planning.

Preferences for End-of-Life Care Among Patients With Terminal Cancer in China

In China, little is known about end-of-life (EOL) care preferences of patients with terminal cancer. Understanding these patients' treatment preferences is needed to improve patient-centered health care, better inform surrogates and medical staff about patient preferences, and enhance the quality of EOL care. To examine preferences for EOL care among patients with terminal cancer in China. In this survey study, patients older than 50 years who had terminal cancer were randomly selected from medical records at a single hospital in China. Data on patients' EOL care preferences were collected by discrete choice experiment (DCE) from August to November 2018 and were analyzed from October 2020 to March 2021. The main outcome was patient preferences in EOL care, derived using a mixed logit model. Each DCE scenario described 6 attributes: hospitalization days, life extension, quality of life, adverse treatment events, place-of-death preference, and out-of-pocket costs. The marginal willingness to pay (WTP) in US dollars was estimated from regression coefficients. Of 188 patients selected for the survey, 183 participated (97.3%). Among the respondents, the mean [SD] age was 61 [8.4] years, and 128 (69.8%) were male. Patients' preferences for moderate increase in survival time, better quality of life, death at home, and lower out-of-pocket costs were significantly associated with their choices between treatment models. Extending life by 10 months (vs 4 months: β, 1.63; 95% CI, 0.81-2.44) and a better quality of life (very good vs poor: β, 1.79; 95% CI, 0.96-2.62) were the most important attributes to patients. The uptake rate for a treatment scenario increased by 61.6% when the quality of life improved from poor to very good, and when life extension increased from 4 months to 10, the uptake rate increased by 57.2%. The uptake increased by 12.5% when the place of death changed from hospital to home. However, it decreased by 31.4% when the costs increased to $21 174. The study found a WTP of $38 854 (95% CI, $19 468-$95 096) to improve quality of life from a poor to a very good level, substantially higher than the WTP for a life extension of 6 months ($35 308; 95% CI, $17 745-$80 279) or 1 year ($27 572; 95% CI, $16 389-$58 027) compared with the baseline scenario of a 4-month extension. Patients were willing to pay $8860 (95% CI, $621-$26 474) to die at home rather than in a hospital. The findings suggest that in addition to extending life moderately for patients with terminal cancer, improving quality of life during EOL care and supporting home deaths may deserve greater attention. The findings also suggest that physicians and surrogates should ask about patients' care preferences and better inform them of their choices to improve EOL care outcomes.

Use, usability, and impact of a card-based conversation tool to support communication about end-of-life preferences in residential elder care \u2013 a qualitative study of staff experiences

BackgroundProactive conversations about individual preferences between residents, relatives, and staff can support person-centred, value-concordant end-of-life (EOL) care. Nevertheless, prevalence of such conversations is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Using tools may help staff to facilitate EOL conversations. While many EOL-specific tools are script-based and focus on identifying and documenting treatment priorities, the DöBra card tool is developed to stimulate reflection and conversation about EOL care values and preferences. In this study, we explore staff’s experiences of use, usability, and perceived impact of the DöBra cards in supporting discussion about EOL care in RCH settings.MethodsThis qualitative study was based on data from two participatory action research processes in which RCH staff tested and evaluated use of DöBra cards in EOL conversations. Data comprise 6 interviews and 8 group meetings with a total of 13 participants from 7 facilities. Qualitative content analysis was performed to identify key concepts in relation to use, usability, and impact of the DöBra cards in RCH practice.ResultsBased on participants’ experiences of using the DöBra cards as an EOL conversation tool in RCHs, we identified three main categories in relation to its usefulness. Outcomes of using the cards (1) included the outlining of content of conversations and supporting connection and development of rapport. Perceived impact (2) related to enabling openings for future communication and aligning care goals between stakeholders. Use and usability of the cards (3) were influenced by supporting and limiting factors on the personal and contextual level.ConclusionsThis study demonstrates how the DöBra cards was found to be useful by staff for facilitating conversations about EOL values, influencing both the content of discussion and interactions between those present. The tool encouraged reflection and interaction, which staff perceived as potentially helpful in building preparedness for future care-decision making. The combination of providing a shared framework and being adaptable in use appeared to be key features for the DöBra cards usability in the RCH setting.

Differences in Attitude towards End-Of-Life Care among Haemodialysis Patients and their Family Members in Two Malaysian Hospitals

INTRODUCTION: End-of-life (EOL) care has become an important topic of discussion in those with chronic illness, especially in End Stage Renal Disease (ESRD) patients on dialysis. This study explored attitudes towards the EOL care among haemodialysis patients and compared them with the patients’ family members. MATERIALS AND METHODS: The study was a cross-sectional descriptive study conducted in two tertiary hospitals in Malaysia. The data was collected by using a survey questionnaire from 164 participants which consisted of 82 pairs of patients and their relatives. RESULTS: ‘Patient’ and ‘family’ groups demonstrated differences in their preferences regarding EOL care options. Family members group favoured cardiopulmonary resuscitation (81.7% vs 41.4%) (p &lt;0.001), endotracheal intubation (80.5% vs 43.9%) (p = 0.989) and nasogastric tube feeding (87.8% vs 67%) (p = 0.001) more than patients themselves. The physician was the most nominated surrogate decision-maker by the patient (91.5%). Majority of the patients (57.3%) felt uncomfortable discussing EOL care options. There was significant correlation between duration of dialysis and patients’ EOL preferences where patients less than 5 years on haemodialysis favoured CPR (55.9% vs 31.3%; p = 0.026), intubation (55.9% vs 35.4%) and nasogastric tube feeding (82.3% vs 56.3%; p = 0.013) compared to patients who had been on haemodialysis for 5 years or longer. CONCLUSION: This study demonstrated significant differences between the attitudes of the patients and their relatives regarding EOL care preferences.

COACH: Caring for Older Adults and Caregivers at Home

Dementia is a major cause of disability and dependency in older adults and it has a physical, psychological, social, and economic impact on the affected individual as well as their caregivers. Most Americans with dementia receive care from their family members, and friends2. Care giving is associated with an increased level of psychological distress and lower subjective well-being and physical health2; caregiver support groups have been found to reduce angry and depressive feelings, improve caregiver's skills, maintain favorable health behaviors and quality of life, and increase social support and satisfaction for caregivers3. There is often a strong preference to keep the affected individual at home for as long as possible; however, significant behavioral challenges and caregiver strain lead to placement in a long-term care facility4. COACH is an innovative, longitudinal, home-based dementia care program serving veterans with dementia and their caregivers. The program originated as a clinical demonstration project by the Geriatric, Research, Education and Clinical Center at the Durham VA Health Care System (DVAHCS) in 2010. It became a fully established, permanent program in 2012 and expanded to rural Eastern North Carolina in 2014. COACH is designed to improve quality of life for veterans with dementia and their caregivers, with the goal of helping veterans remain at home for as long as possible. The criteria for COACH include veterans enrolled in VAHCS who are 65 or more years of age with moderate to severe cognitive impairment and who have a live-in caregiver. Enrolled veterans cannot be in another home-based program and must live within 50 miles from the COACH team's home clinic. The process begins with a consult to the COACH program from any health care provider. Once the veteran and their care giver are screened and found eligible, a LCSW and a RN conduct a comprehensive assessment. This includes psychosocial assessment; home safety assessment; evaluation of patient's cognitive and functional abilities; evaluation of patient's behaviors; medication review; and evaluation of care giver stress, knowledge of dementia, coping abilities, screening for depression and family resources. RN and LCSW consult with an interdisciplinary team of a geriatrician, a geriatric psychiatrist, and a geriatric pharmacist weekly to develop a comprehensive treatment plan integrating best evidence-based practices. After the initial assessment, LCSW and RN conduct follow ups via home visits or video and telephone contact at one, three, and six months. Home visits continue every six months with quarterly follow-ups via video or telephone, and additional ad-hoc home visits as recommended by the interdisciplinary team or needed by the caregiver. The team provides ongoing support and education to caregivers in five major areas of care. 1. Behavioral symptoms management: focuses on non-pharmacological approaches like communication skills, reminiscence and validation techniques, behavioral activation 2. Safety: addresses any safety hazards that may affect the veteran like driving or falls. 3. Advance care planning: offers anticipatory guidance and education on advance directives and end of life care preferences. 4. Caregiver burden: offers ongoing support to caregivers, emphasizes self-care. 5. Dementia related medical concerns: Offers pharmacological recommendations for safety, appropriateness, and compliance; guidance on strategies to maintain functioning, assistance with activities of daily living, and cover needs for durable medical equipment in the home. To augment the educational interventions, the program offers weekly caregiver support groups and monthly educational series talks on dementia. In the last in the last ten years, the program has served nearly 1,200 veterans, with about 100 new veterans enrolled each year. It has demonstrated ability to improve dementia care at home, delay long-term care facility placement6, reduce caregiver burden, and improve safety at home5. COACH exceeds all national dementia performance measures5.

Comparison of Advance Care Planning and End-of-Life Care Intensity Between Dementia Versus Cancer Patients.

While advanced care planning (ACP) is recommended in dementia and cancer care, there are unique challenges in ACP for individuals with dementia, such as the insidious onset and progression of cognitive impairment, potentially leading to high-intensity care at the end of life (EOL) for this population. To compare ACP completion and receipt of high-intensity care at the EOL between decedents with dementia versus cancer. Retrospective longitudinal cohort study. Participants of the U.S. Health and Retirement Study who died between 2000 and 2014 with dementia (n = 2099) and cancer (n = 1137). Completion of three types of ACP (living will, durable power of attorney for healthcare [DPOAH], discussions of preferences for EOL care) and three measures of EOL care intensity (in-hospital death, intensive care unit [ICU] care in the last 2 years of life, life support use in the last 2 years of life). Use of living will was lower in dementia than in cancer (adjusted proportion, 49.9% vs. 56.9%; difference, - 7.0 percentage points [pp, 95% CI, - 13.3 to - 0.7]; p = 0.03). Use of DPOAH was similar between the two groups, but a lower proportion of decedents with dementia had discussed preferences compared to decedents with cancer (53.0% vs. 68.1%; - 15.1 pp [95% CI, - 19.3 to - 10.9]; p < 0.001). In-hospital death was higher in dementia than in cancer (29.5% vs. 19.8%; + 9.7 pp [95% CI, + 5.9 to + 13.5]; p < 0.001), although use of ICU care was lower (20.9% vs. 26.1%; - 5.2 pp [95% CI, - 9.8 to - 0.7]; p = 0.03). Use of life support was similar between the two groups. Individuals with dementia complete ACP less frequently and might be receiving higher-intensity EOL care than those with cancer. Interventions targeting individuals with dementia may be necessary to further improve EOL care for this population.

Advance Care Planning and Hospice Use Among People with Dementia: A Report from the Health and Retirement Survey

Abstract People with Alzheimer’s disease and related dementias (ADRD) frequently receive sub-optimal end-of-life care (EOLC), often enduring invasive procedures such as tube feeding, resuscitation, and surgery within days of their death. While advance care planning (ACP) has shown effectiveness in improving EOLC for those with ADRD, there are many barriers to ACP specific to the ADRD population. Research suggests that hospice care is optimal in reducing end of life suffering for ADRD patients. This study aimed to empirically assess hospice utilization and ACP for individuals with ADRD compared to individuals without ADRD, and to assess the impact of ACP on hospice utilization for individuals with ADRD. Data came from the 2016-2018 wave of the Health and Retirement Study (HRS), a national longitudinal study collecting health and demographic data on older Americans. This analysis evaluated survey responses from 1,224 proxy respondents for individuals who died during this period. In this sample, people with ADRD were both significantly more likely to have utilized hospice care (OR=1.37) and to have written EOLC instructions in place (OR=1.19). Those with ADRD were 22% less likely to have discussed their EOLC wishes with their proxy than those without ADRD. Having a written EOLC plan in place significantly increased the odds of hospice utilization (OR=1.37) but discussion around EOLC preferences increased odds of hospice utilization at a higher rate (OR=1.59). These results support policy to advance earlier ACP conversations around EOLC preferences and the implementation of written EOLC instructions to reduce suffering for individuals with ADRD diagnoses .

Change of Health and Change of Preferences on Life-Sustaining Treatment: Evidence From a Longitudinal Study

Background: Decision-making for end-of-life (EoL) care is not a one-off choice. Older adults may change their preferences for life-sustaining treatments along their health continuum. Guided by prospect theory, we hypothesize that perceived change in health status is a driver behind preference changes. Method: Health and Retirement Study Wave 2012 to 2018 data. Sample is limited to 5,646 older adults who reported whether they requested to limit treatment in living will during two waves of data. Two possible preference changes were tested: from limited to default care and from default to limited care. Change in health status was indicated by changes (1=same, 2=improve, 3=decline) in physical pain, general health, activities of daily living, instrumental activities of daily living (IADL), and number of diagnoses. Multilevel logistic regression models were used to understand how change of health status was related to changes in EoL preferences. Results: 700 older adults changed their preferences some time in 8 years. Those who changed their preferences are more likely to be older and not married, and to have lower socioeconomic background. Older adults who experienced deteriorated pain levels were more likely to change their preferences from default to limited care (OR=3.77, p<.05) and less likely to change from limited to default care (OR=0.63, p<.05). Change in IADL is also a significant predictor of change of preferences. Implication: The findings highlight the importance of periodic reassessment of EoL care preferences with older adults. We discuss policy and practice implications regarding health changes as underlying mechanisms of preference changes.