Is Care for the Dying Improving in the United States?

Background: Striking changes occurred in health care in the United States between 2000 and 2013, including growth of hospice and hospital-based palliative care teams, and changes in Medicare payment policies. Objective: The aim of this study was to compare informants' reports and ratings of the quality of end-of-life care for decedents between 2000 and 2011?2013. Methods: The study design comprised retrospective national surveys. Subjects were decedents age 65 years and older residing in the community from two time periods. Similar survey questions were asked at the two time periods. Bivariate and multivariate analyses were conducted, using appropriate survey weights to examine response differences between time periods, after adjusting for the decedent's age, race, pattern of functional decline, and the presence of a cancer diagnosis, as well as the respondent's relationship to the decedent. Results: A total of 1208 informants were interviewed; 622 in 2000 and 586 in 2011?2013. Respondents from deaths in 2011?2013 were more likely to state that their loved ones experienced an unmet need for pain management (25.2% versus 15.5% in 2000, adjusted odds ratio [AOR] 1.9, 95% confidence interval [CI] 1.1-3.3). More respondents reported that religion and spirituality were addressed in the later time period (72.4% not addressed compared with 58.3%, AOR 1.4, 95% CI 1.1-1.9). High rates of unmet need for palliation of dyspnea and anxiety/depression remained. The overall rating of quality did not improve but decreased (with 56.7% stating care was excellent in 2000 and 47.0% in the later survey, AOR 0.70, 95% CI 0.52-0.95). Conclusions: Substantial unmet needs in end-of-life care remain. Continued efforts are needed to improve the quality of end-of-life care.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/140119/1/jpm.2015.0039.pd

Patterns of Cost for Patients Dying in the Intensive Care Unit and Implications for Cost Savings of Palliative Care Interventions.

BACKGROUND: Terminal intensive care unit (ICU) stays represent an important target to increase value of care. OBJECTIVE: To characterize patterns of daily costs of ICU care at the end of life and, based on these patterns, examine the role for palliative care interventions in enhancing value. DESIGN: Secondary analysis of an intervention study to improve quality of care for critically ill patients. SETTING/PATIENTS: 572 patients who died in the ICU between 2003 and 2005 at a Level-1 trauma center. METHODS: Data were linked with hospital financial records. Costs were categorized into direct fixed, direct variable, and indirect costs. Patterns of daily costs were explored using generalized estimating equations stratified by length of stay, cause of death, ICU type, and insurance status. Estimates from the literature of effects of palliative care interventions on ICU utilization were used to simulate potential cost savings under different time horizons and reimbursement models. MAIN RESULTS: Mean cost for a terminal ICU stay was 39.3K ± 45.1K. Direct fixed costs represented 45% of total hospital costs, direct variable costs 20%, and indirect costs 34%. Day of admission was most expensive (mean 9.6K ± 7.6K); average cost for subsequent days was 4.8K ± 3.4K and stable over time and patient characteristics. CONCLUSIONS: Terminal ICU stays display consistent cost patterns across patient characteristics. Savings can be realized with interventions that align care with patient preferences, helping to prevent unwanted ICU utilization at end of life. Cost modeling suggests that implications vary depending on time horizon and reimbursement models

Late Transitions and Bereaved Family Member Perceptions of Quality of End‐of‐Life Care

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/146458/1/jgs15455.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/146458/2/jgs15455_am.pd

Changes in Advance Care Planning in Nursing Homes Before and After the Patient Self‐Determination Act: Report of a 10‐State Survey

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/111179/1/j.1532-5415.1997.tb02963.x.pd

Changes in Hospitalization Associated with Introducing the Resident Assessment Instrument

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/111190/1/j.1532-5415.1997.tb02973.x.pd

Selecting Outcomes to Ensure Pragmatic Trials Are Relevant to People Living with Dementia

Outcome measures for embedded pragmatic clinical trials (ePCTs) should reflect the lived experience of people living with dementia (PLWD) and their caregivers, yet patient‐ and caregiver‐reported outcomes (PCROs) are rarely available in large clinical and administrative data sources. Although pragmatic methods may lead to use of existing administrative data rather than new data collected directly from PLWD, interventions are truly impactful only when they change outcomes prioritized by PLWD and their caregivers. The Patient‐ and Caregiver‐Reported Outcomes Core (PCRO Core) of the IMbedded Pragmatic Alzheimer's Disease (AD) and AD‐Related Dementias Clinical Trials (IMPACT) Collaboratory aims to promote optimal use of outcomes relevant to PLWD and their caregivers in pragmatic trials. The PCRO Core will address key scientific challenges limiting outcome measurement, such as gaps in existing measures, methodologic constraints, and burdensome data capture. PCRO Core investigators will create a searchable library of AD/AD‐related dementias (ADRD) clinical outcome measures, including measures in existing data sources with potential for AD/ADRD ePCTs, and will support best practices in measure development, including pragmatic adaptation of PCROs. Working together with other Cores and Teams within the IMPACT Collaboratory, the PCRO Core will support investigators to select from existing outcome measures, and to innovate in methods for measurement and data capture. In the future, the work of the IMPACT Collaboratory may galvanize broader embedded use of outcomes that matter to PLWD and their care partners in large health system

Association Between State Regulations Supportive of Third-party Services and Likelihood of Assisted Living Residents in the US Dying in Place

Importance Older adults are increasingly residing in assisted living residences during their last year of life. The regulations guiding these residential care settings differ between and within the states in the US, resulting in diverse policies that may support residents who wish to die in place. Objective To examine the association between state regulations and the likelihood of assisted living residents dying in place. The study hypothesis was that regulations supporting third-party services, such as hospice, increase the likelihood of assisted living residents dying in place. Design, Setting, and Participants This retrospective cohort study combined data about assisted living residences in the US from state registries with an inventory of state regulations and administrative claims data. The study participants comprised 168 526 decedents who were Medicare beneficiaries, resided in 8315 large, assisted living residences (with ≥25 beds) across 301 hospital referral regions during the last 12 months of their lives, and died between 2017 and 2019. Descriptive analyses were performed at the state level, and 3-level multilevel models were estimated to examine the association between supportive third-party regulations and dying in place in assisted living residences. The data were analyzed from September 2021 to August 2022. Exposures Supportive (vs “silent,” ie, not explicitly mentioned in regulatory texts) state regulations regarding hospice care, private care aides, and home health services, as applicable to licensed/registered assisted living residences across the US. Main Outcomes and Measures Presence in assisted living residences on the date of death. Results The median (IQR) age of the 168 526 decedents included in the study was 90 (84-94) years. Of these, 110 143 (65.4%) were female and 158 491 (94.0%) were non-Hispanic White. Substantial variation in the percentage of assisted living residents dying in place was evident across states, from 18.0% (New York) to 73.7% (Utah). Supportive hospice and home health regulations were associated with a higher odds of residents dying in place (adjusted odds ratio [AOR], 1.38; 95% CI, 1.24-1.54; P \u3c .001; and AOR, 1.21; 95% CI, 1.10-1.34; P \u3c .001, respectively). In addition, hospice regulations remained significant in fully adjusted models (AOR, 1.46; 95% CI, 1.25-1.71). Conclusions and Relevance The findings of this cohort study suggest that a higher percentage of assisted living residents died in place in US states with regulations supportive of third-party services. In addition, assisted living residents in licensed settings with regulations supportive of hospice regulations were especially likely to die in place

Comfort Feeding Only: A Proposal to Bring Clarity to Decision-Making Regarding Difficulty with Eating for Persons with Advanced Dementia

Feeding and eating difficulties leading to weight loss are common in the advanced stages of dementia. When such problems arise, family members are often faced with making a decision regarding the placement of a percutaneous endoscopic gastrostomy tube. The existing evidence based on observational studies suggests that feeding tubes do not improve survival or reduce the risk of aspiration, yet the use of feeding tubes is prevalent in patients with dementia, and the majority of nursing home residents do not have orders documenting their wishes about the use of artificial hydration and nutrition. One reason is that orders to forgo artificial hydration and nutrition get wrongly interpreted as “do not feed,” resulting in a reluctance of families to agree to them. Furthermore, nursing homes fear regulatory scrutiny of weight loss and wrongly believe that the use of feeding tubes signifies that everything possible is being done. These challenges might be overcome with the creation of clear language that stresses the patient's goals of care. A new order, “comfort feeding only,” that states what steps are to be taken to ensure the patient's comfort through an individualized feeding care plan, is proposed. Comfort feeding only through careful hand feeding, if possible, offers a clear goal-oriented alternative to tube feeding and eliminates the apparent care-no care dichotomy imposed by current orders to forgo artificial hydration and nutrition

Advanced Dementia: State of the Art and Priorities for the Next Decade

Dementia is a leading cause of death in the United States. This article outlines the current understanding of advanced dementia and identifies research priorities for the next decade. Research over the past 25 years has largely focused on describing the experience of patients with advanced dementia. This work has delineated abundant opportunities for improvement, including greater recognition of advanced dementia as a terminal illness, better treatment of distressing symptoms, increased access to hospice and palliative care services, and less use of costly and aggressive treatments that may be of limited clinical benefit. Addressing those opportunities must be the overarching objective for the field in the coming decade. Priority areas include designing and testing interventions that promote high-quality, goal-directed care; health policy research to identify strategies that incentivize cost-effective and evidence-based care; implementation studies of promising interventions and policies; and further development of disease-specific outcome measures. There is great need and opportunity to improve outcomes, contain expenditures, reduce disparities, and better coordinate care for the millions of persons in the United States who have advanced dementia

Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel

Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives