With increased therapeutic capabilities in healthcare today, many patients with multiple progressive comorbidities are living longer. They experience recurrent hospitalizations and often undergo procedures that are not aligned with their personal goals. That is why it is essential to discuss and document healthcare preferences prior to an acute event when significant interventions could occur, especially for patients with serious and progressive illness. Completion of an advance directive and a physician order for life-sustaining treatment (POLST) supports provision of goal-concordant care. Further, for patients who have do not attempt resuscitation (DNAR) orders or are diagnosed with advanced dementia, having a POLST is essential. This may be best accomplished with hospitalization discharge plans. Our 896-bed academic medical center, Cedars-Sinai Medical Center, launched a quality initiative in 2015 to complete POLSTs for patients being discharged with DNAR status or with dementia returning to a skilled nursing facility. As part of interdisciplinary progression of care rounds, emphasis was placed on those patients for whom POLST completion was indicated. Proactive, facilitated discussions with patients, family members, and attending physicians were initiated to support POLST completion. The completed forms were then uploaded to the electronic health record. Individual units and physicians received regular feedback on POLST completion rates, and the data were later shared at medical staff quality improvement meetings.During the initiative, POLST completion rates for DNAR patients discharged alive rose from 41% in fiscal year (FY) 2014 to 75% in FY 2019. Similar improvement was seen for patients with dementia discharged to skilled nursing facilities, regardless of code status (rising from 14% in FY 2014 to 54% in FY 2019). Subsequently, we have expanded our efforts to include early discussion and completion of these advanced care planning documents for patients recently diagnosed with high mortality cancers (ovarian, pancreatic, lung, glioblastoma), focusing on the completion of advanced care planning documentation and palliative care referrals.
In the Netherlands during the past decade, a growing number of people with dementia (PWDs) requested euthanasia, and each year more of such requests were granted. We aimed to get quantitative insights in problems and needs general practitioners (GPs) have when confronted with a euthanasia request by a person with dementia (PWD). A concept survey was composed. Expert validity of the survey was achieved through pilot testing A postal survey was sent to a random sample of 900 Dutch GPs, regardless their opinion on or practical experience with euthanasia. Collected data were analysed with descriptive statistics. Of 894 GPs, 423 (47.3%) completed the survey, of whom 176 (41.6%) had experience with euthanasia requests from PWDs. Emotional burden was reported most frequently (86; 52.8%), as well as feeling uncertain about the mental competence of the PWD (77; 47.2%), pressure by relatives (70; 42.9%) or the PWD (56; 34.4%), and uncertainty about handling advance euthanasia directives (AEDs) (43; 26.4%). GPs would appreciate more support by a SCEN physician (an independent physician for support, information and formal consultation around euthanasia). (291; 68.8%), a geriatric consultation team (185; 43.7%), the end-of-life clinic (184; 43.5%), or a palliative care consultation team (179; 42.3%). Surprisingly the need for moral deliberation was hardly mentioned. The reported burden and the rise in numbers and complexity of euthanasia requests from PWDs warrants primary care support by easier access to colleagues with expertise and training on end of life care needs of patients with dementia and their caregivers.
BACKGROUND/OBJECTIVES: Experts have suggested that patients represented by professional guardians receive higher intensity end-of-life treatment than other patients, but there is little corresponding empirical data.
DESIGN: Retrospective cohort study.
SETTING AND PARTICIPANTS: Among veterans aged 65 and older who died from 2011 to 2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these veterans had professional guardians. Decedent veterans with professional guardians were matched to decedent veterans without guardians in a 1:4 ratio, according to age, sex, race, dementia severity, and nursing facility type (VA based vs non-VA).
MEASUREMENTS: Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, three or more nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death.
RESULTS: ICU admission was more common among patients with professional guardians than matched controls (17.5% vs 13.7%), but the difference was not statistically significant (adjusted odds ratio = 1.33; 95% confidence interval = .89–1.99). There were no significant differences in receipt of any other treatment; nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, and feeding tube placement, three or more end-of-life hospitalizations, and in-hospital death were more common among matched controls.
CONCLUSION: Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.
Objective: This report describes a pilot hospice inpatient unit dedicated to individuals experiencing distressing behaviors from dementia.
Background: Patients with dementia who experience distressing symptoms cannot be well managed on typical inpatient units. Hospice of the Valley selected one unit to dedicate to dementia care.
Methods: Data were analyzed from 237 patients admitted to the unit between May 2019 and April 2020. Behaviors were identified and rated for severity on admission, discharge, and postdischarge. Rates of inpatient death and associated behaviors were calculated.
Results: Fifty percent of patients had their behaviors sufficiently managed to allow discharge. The most common behavior exhibited was agitation; the most common symptom leading to death was pain.
Discussion: An inpatient hospice unit dedicated to patients with dementia can be successful. The hospice agency gains admissions that would otherwise be diverted to behavioral care settings. This successful pilot may be a model for other hospices.
IMPORTANCE AND OBJECTIVE: Conducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.
DESIGN: For this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians' moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).
SETTING AND PARTICIPANTS: Physicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians' moral considerations.
MAIN OUTCOMES: Physicians' moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.
RESULTS: Of 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician's interpretation or the context.
CONCLUSIONS: Physicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
Le concept de thanatose fait du déni de l’angoisse de mort le primum movens de certains troubles cognitifs dans les démences des personnes âgées. Il met ainsi l’accent sur leur origine langagière et donc intersubjective. Il voit dans l’exclusivité accordée aujourd’hui à leur origine organique une dérive conceptuelle liée à ce déni. Son utilisation en synergie avec le modèle anatomoclinique met fin à cette exclusivité et lève le déni. Elle permet de distinguer parmi ces troubles ceux qui définitivement inintelligibles sont effectivement d’origine organique et ceux qui s’avérant finalement intelligibles sont liés à l’âgisme généré lui aussi par l’angoisse de mort. Admettre la nécessité de les disjoindre est un préalable indispensable à l’amélioration du pronostic de ces démences.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
Agitation is a common, treatable symptom that profoundly impacts quality of life and exacerbates caregiver fatigue in the hospice setting for patients with dementia. The objective of this study was to analyze the efficacy of tailored nonpharmacological interventions for mitigation of unwanted behaviors in the population of patients with behavioral and psychological symptoms in dementia while receiving hospice care. The 4-domain Pittsburgh Agitation Scale (PAS; Motor, Verbal, Aggressive, Resistance to Care) was used for multiple baseline and posttest measurements of agitation. Effectiveness of nonpharmacological interventions was evaluated using analysis of variance for repeated measures for the total PAS score. Motor agitation was the presenting problem with highest-rated severity compared with Verbal, Aggression, and Resistance to Care domains. Analysis of variance demonstrated no difference between baseline referral and pretest total PAS measures (P = .8), but a significant drop in total PAS agitation after intervention (P < .001). The best outcomes, however, were with patients receiving both nonpharmacological and standard pharmacological interventions as opposed to nonpharmacological interventions alone (P = .034). For patients with dementia presenting with behavioral and psychological symptoms, selected nonpharmacological interventions provide significant mitigation of agitation.
BACKGROUND: Euthanasia has been regulated by law under strict conditions in the Netherlands since 2002. Since then the number of euthanasia cases has constantly increased, and increased exponentially for patients with dementia (PWD). The number of euthanasia requests by such patients is even higher. Recently, an interview study showed that physicians who are confronted with a PWD's euthanasia request experience problems with communication, pressure from relatives, patients, and society, workload, interpretation of the law, and ethical considerations. Moreover, if honoured, the physician and patient may interpret the right moment for euthanasia differently.
AIM: To identify ways of supporting GPs confronted with a PWD's euthanasia request.
DESIGN AND SETTING: Two expert nominal group meetings were organised with Dutch care physicians for older people, GPs, legal experts, a healthcare chaplain, a palliative care consultant, and a psychologist.
METHOD: A total of 15 experts participated in the meetings. Both meetings were audio-recorded, transcribed verbatim, and analysed using thematic analysis.
RESULTS: Four themes emerged from the meetings: support provided by healthcare professionals, influencing public opinion, educational activities, and managing time and work pressure. The need for support was considered highest for GPs for all of these themes.
CONCLUSION: Consensus was reached with the help of experts on support needs for GPs confronted with euthanasia requests from PWD. A concise and clear explanation of the law is strongly desired. Changing public opinion seems the most challenging and a long-term aim. Communication training for finding the right balance between the physician's professional responsibility and the patient's autonomy should be made available, as a short-term aim.
Background: For residential aged care facility (RACF) residents with dementia, lack of prognostic guidance presents a significant challenge for end of life care planning. In an attempt to address this issue, models have been developed to assess mortality risk for people with advanced dementia, predominantly using long-term care minimum data set (MDS) information from the USA. A limitation of these models is that the information contained within the MDS used for model development was not collected for the purpose of identifying prognostic factors. The models developed using MDS data have had relatively modest ability to discriminate mortality risk and are difficult to apply outside the MDS setting. This study will aim to develop a model to estimate 6- and 12-month mortality risk for people with dementia from prognostic indicators recorded during usual clinical care provided in RACFs in Australia.
Methods: A secondary analysis will be conducted for a cohort of people with dementia from RACFs participating in a cluster-randomized trial of a palliative care education intervention (IMPETUS-D). Ten prognostic indicator variables were identified based on a literature review of clinical features associated with increased mortality for people with dementia living in RACFs. Variables will be extracted from RACF files at baseline and mortality measured at 6 and 12 months after baseline data collection. A multivariable logistic regression model will be developed for 6- and 12-month mortality outcome measures using backwards elimination with a fractional polynomial approach for continuous variables. Internal validation will be undertaken using bootstrapping methods. Discrimination of the model for 6- and 12-month mortality will be presented as receiver operating curves with c statistics. Calibration curves will be presented comparing observed and predicted event rates for each decile of risk as well as flexible calibration curves derived using loess-based functions.
Discussion: The model developed in this study aims to improve clinical assessment of mortality risk for people with dementia living in RACFs in Australia. Further external validation in different populations will be required before the model could be developed into a tool to assist with clinical decision-making in the future.
PURPOSE: Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.
METHODS: We identified adults cared for in a multihospital healthcare system who died between 2010-2017. We categorized patients by 4 primary chronic conditions: heart failure, pulmonary disease, renal disease, or dementia. Within each condition, we examined the effect of multimorbidity (presence of 4 or more chronic conditions) on hospital and ICU admission in the last 30 days of life, in-hospital death, and advance care planning (ACP) documentation >30 days before death. We performed logistic regression to estimate associations between multimorbidity and end-of-life care utilization, stratified by the presence or absence of ACP documentation.
RESULTS: ACP documentation >30 days before death was associated with lower odds of in-hospital death for all 4 conditions both in patients with and without multimorbidity. With the exception of patients with renal disease without multimorbidity, we observed lower odds of hospitalization and ICU admission for all patients with ACP >30 days before death.
CONCLUSIONS: Patients with dementia and multimorbidity had the highest odds of high-intensity end-of-life care. For patients with dementia, heart failure, or pulmonary disease, ACP documentation >30 days before death was associated with lower likelihood of in-hospital death, hospitalization, and ICU use at end-of-life, regardless of multimorbidity.
Although long-term care (LTC) home staff of nurses and personal support workers spend the most time providing direct care, their role in end of life decision-making for residents with dementia has largely been unacknowledged. Staff's perceptions of their role play a significant part in how they support people with dementia and family care partners. The purpose of this study was to examine LTC home staff's perspectives of their role in end of life decision-making for LTC home residents with dementia. For this interpretive descriptive study, 21 semi-structured interviews were conducted in two urban LTC homes with nine personal support worker (PSWs), eight registered practical nurses (RPNs), and four registered nurses (RNs). Additionally, a focus group was conducted, consisting of each a PSW, RPN, and RN. A voice-centred relational analysis was used to situate LTC home staff's perspectives within broader social contexts. Findings suggest that little has changed in LTC homes in the last 50 years. Rooted in dichotomies between medical and social care paradigms, ideologies of rationality and professionalism created tensions, hierarchical roles, and staff's minimal involvement in decision-making. A relational approach is needed to account for the interdependency of care and the relationships that LTC home staff have with residents, family care partners, and the sociopolitical environment.
OBJECTIVES: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.
METHODS: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care.
RESULTS: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL.
CONCLUSION: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.
Most long-term care (LTC) residents are of age >65 years and have multiple chronic health conditions affecting their cognitive and physical functioning. Although some individuals in nursing homes return home after receiving therapy services, most will remain in a LTC facility until their deaths. This article seeks to provide guidance on how to assess and effectively select treatment for delirium, behavioral and psychological symptoms for patients with dementia, and address other common challenges such as advanced care planning, decision-making capacity, and artificial hydration at the end of life. To do so, we draw upon a team of physicians with training in various backgrounds such as geriatrics, palliative medicine, neurology, and psychiatry to shed light on those important topics in the following "Top 10" tips.
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.
Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.
Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.
Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.
Participants: Residents with a dementia diagnosis or scoring =2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).
Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.
Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.
Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended =3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.
Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
Background: Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum.
Methods: Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert ‘think-tank’ to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement.
Results: Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual’s decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks.
Conclusions: The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.
OBJECTIVES: Nursing homes (NHs) are critical end-of-life (EOL) care settings for 70% of Americans dying with Alzheimer's disease/related dementias (ADRD). Whether EOL care/outcomes vary by NH/market characteristics for this population is unknown but essential information for improving NH EOL care/outcomes. Our objectives were to examine variations in EOL care/outcomes among decedents with ADRD and identify associations with NH/market characteristics.
DESIGN: Cross-sectional.
OUTCOMES: Place-of-death (hospital/NH), presence of pressure ulcers, potentially avoidable hospitalizations (PAHs), and hospice use at EOL. Key covariates were ownership, staffing, presence of Alzheimer's units, and market competition.
SETTING AND PARTICIPANTS: Long-stay NH residents with ADRD, age 65 + years of age, who died in 2017 (N = 191,435; 14,618 NHs) in NHs or hospitals shortly after NH discharge.
METHODS: National Medicare claims, Minimum Data Set, public datasets. Descriptive analyses and multivariable logistic regressions.
RESULTS: As ADRD severity increased, adjusted rates of in-hospital deaths and PAHs decreased (17.0% to 6.3%; 11.2% to 7.0%); adjusted rates of dying with pressure ulcers and hospice use increased (8.2% to 13.5%; 24.5% to 40.7%). Decedents with moderate and severe ADRD had 16% and 13% higher likelihoods of in-hospital deaths in for-profit NHs. In NHs with Alzheimer's units, likelihoods of in-hospital deaths, dying with pressure ulcers, and PAHs were significantly lower. As ADRD severity increased, higher licensed nurse staffing was associated with 14%-27% lower likelihoods of PAHs. Increased NH market competition was associated with higher likelihood of hospice use, and lower likelihood of in-hospital deaths among decedents with moderate ADRD.
CONCLUSIONS AND IMPLICATIONS: Decedents with ADRD in NHs that were nonprofit, had Alzheimer's units, higher licensed nurse staffing, and in more competitive markets, had better EOL care/outcomes. Modifications to state Medicaid NH payments may promote better EOL care/outcomes for this population. Future research to understand NH care practices associated with presence of Alzheimer's units is warranted to identify mechanisms possibly promoting higher-quality EOL care.