Does hospice improve quality of care for persons dying from dementia?
Ontology highlight
ABSTRACT: Objectives
To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members.Design
Mortality follow-back survey.Setting
Death certificates were drawn from five states (AL, FL, TX, MA, and MN).Participants
Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death.Measurements
Ratings of the quality of end-of-life care, perceptions of unmet needs, and opportunities to improve end-of-life care. Two questions were also asked about the peacefulness of dying and quality of dying.Results
Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33-0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53-2.72). They also noted better quality of dying than those without hospice services.Conclusion
Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.
SUBMITTER: Teno JM
PROVIDER: S-EPMC3724341 | biostudies-literature | 2011 Aug
REPOSITORIES: biostudies-literature
Publications
Does hospice improve quality of care for persons dying from dementia?
Teno Joan M JM Gozalo Pedro L PL Lee Ian C IC Kuo Sylvia S Spence Carol C Connor Stephen R SR Casarett David J DJ
Journal of the American Geriatrics Society 20110728 8
<h4>Objectives</h4>To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members.<h4>Design</h4>Mortality follow-back survey.<h4>Setting</h4>Death certificates were drawn from five states (AL, FL, TX, MA, and MN).<h4>Participants</h4>Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death.<h4>Measurements</h4>Ratings of the quality of end-of-life care, perceptions of ...[more]
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Project description:BackgroundAfter over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society.ObjectiveTo describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying.DesignIn this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers.Participants and settingMulti-disciplinary hospice palliative care providers in acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying.Ethical considerationsThe research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms.ResultsThe 48 participants included hospice palliative care physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health providers (n = 4). The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at (1) the individual level: (a) a new end-of-life option, (b) patients' last chance to express control over their lives, (c) patient and family comfort and relief, and (d) a unique learning experience for hospice palliative care providers; (2) the team level: (a) supportive collegial relationships, (b) broadened discussions about end-of-life and palliative care, and (c) team debriefs provide opportunities for education and support; and (3) the institutional level: (a) improved processes to facilitate the implementation logistics.ConclusionWhile being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider's perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients' end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying.
| S-EPMC8866752 | biostudies-literature
Project description:The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.
| S-EPMC9662595 | biostudies-literature
Project description:IntroductionAccelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for "good" home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers.MethodsAs part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a piori framework, new themes were developed.FindingsOur findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family-care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs.InterpretationWith an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.
| S-EPMC9469964 | biostudies-literature
Project description: Not available
| S-EPMC9530694 | biostudies-literature
Project description:BackgroundNearly 50 million people worldwide have dementia and the increasing numbers requiring end-of-life and palliative care, has led to national efforts to define standards of care for this patient group. Little research, however, has been done to date about the experience of hospice care for people with dementia accessing these services. This study explores the views of hospice dementia care for bereaved carers of people with dementia and hospice clinicians.MethodsWe used purposive sampling for participant recruitment. Semi-structured qualitative interviews were conducted with bereaved carers and hospice clinical staff. Interviews were audio recorded and the transcriptions were analysed through thematic analysis. A total of 12 participants were interviewed from one service in the Northwest region in the UK. All were female and white British.ResultsParticipants described their experience of hospice dementia care in three main themes: Pre-access to service, roles and responsibility within hospice care, ease and difficulty of last period of end-of-life care.ConclusionRapid response teams delivering hospice home care could represent a better option to inpatient care and may be preferred by patients. This type of service, however, may require joined-up care with other community services, and this type of care needs to be considered and planned. Future studies should evaluate this type of community care.
| S-EPMC10627455 | biostudies-literature
Project description:BackgroundHospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies.MethodsA systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist.ResultsThe search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and "other" delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing.ImplicationsHospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.
| S-EPMC9283206 | biostudies-literature
Project description:BackgroundDespite extensive theoretical debate, empirical research on medical aid in dying (MAID) largely has disregarded broader, contextual factors as potential correlates of attitudes in hospice clinicians.ObjectiveInformed by institutional theory and neofunctional attitude theory, the objective of the current study was to quantitatively examine hospice clinicians' attitudes toward MAID as functions of institutional characteristics relating to (Aim 1) individual adherence to hospice values and (Aim 2) state law.DesignWe used a cross-sectional design.MethodsA national convenience sample of interdisciplinary hospice clinicians recruited through US professional membership associations self-administered an online survey. Measures included attitudes toward MAID, attitudes toward the hospice philosophy of care, attitudes toward the principle that hospice care should not hasten death, orientation toward patient-centeredness, professional exposure to working in a state where MAID is legal, and demographic characteristics. Data were analyzed via a partial proportional odds model.ResultsThe sample (N = 450) comprised hospice physicians (227 [50.4%]), nurses (64 [14.2%]), social workers (74 [16.4%]), and 85 chaplains (85 [18.9%]). Results of the partial proportional odds model indicated that professional exposure to working in a state where MAID is legal was significantly associated with over twice the cumulative odds of MAID support. Although neither orientation toward patient-centered care nor attitudes toward the hospice philosophy of care was significantly associated with attitudes toward MAID, results showed that disagreement with the narrower principle that hospice care should not hasten death was significantly associated with 6-to-7 times the cumulative odds of MAID support.ConclusionFindings suggest that contextual factors-namely, the environments in which hospice clinicians practice-may shape attitudes toward MAID. Unanticipated results indicating that hospice professionals' adherence to hospice values was not significantly associated with attitudes toward MAID underscore the need for further research on these complex associations, given previous theoretical and empirical support.
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Project description:ObjectiveTo examine the association between medical home enrollment and receipt of recommended care for Medicaid beneficiaries with multiple chronic conditions (MCC).Data sources/study settingSecondary claims data from fiscal years 2008-2010. The sample included nonelderly Medicaid beneficiaries with at least two of eight target conditions (asthma, chronic obstructive pulmonary disease, diabetes, hypertension, hyperlipidemia, seizure disorder, major depressive disorder, and schizophrenia).Study designWe used linear probability models with person- and year-level fixed effects to examine the association between patient-centered medical home (PCMH) enrollment and nine disease-specific quality-of-care metrics, controlling for selection bias and time-invariant differences between enrollees.Data collection methodsThis study uses a dataset that links Medicaid claims with other administrative data sources.Principal findingsPatient-centered medical home enrollment was associated with an increased likelihood of receiving eight recommended mental and physical health services, including A1C testing for persons with diabetes, lipid profiles for persons with diabetes and/or hyperlipidemia, and psychotherapy for persons with major depression and persons with schizophrenia. PCMH enrollment was associated with overuse of short-acting β-agonists among beneficiaries with asthma.ConclusionsThe PCMH model can improve quality of care for patients with multiple chronic conditions.
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Project description:BackgroundPatients approaching the end of their life do not experience their existential and spiritual needs being sufficiently met by the healthcare professionals responsible for their care. Research suggest that this is partly due to a lack of insight about spiritual care among healthcare professionals. By developing, implementing, and evaluating a research-based educational course on spiritual care targeting hospice staff, we aimed to explore the perceived barriers for providing spiritual care within a hospice setting and to evaluate the post-course impact among staff members.MethodsCourse development and evaluation was based on primary exploratory action research and followed the UK Medical Research Council's framework for complex intervention research. The course was implemented at two Danish hospices and comprised thematic days that included lectures, reflective exercises and improvised participatory theatre. We investigated the course impact using a questionnaire and focus group interviews. The questionnaire data were summarized in bar charts and analysis of the transcribed interviews was performed based on Interpretative Phenomenological Analysis.Results85 staff members participated in the course. Of these, 57 answered the evaluative questionnaire and 15 participated in 5 focus group interviews. The course elements that the participants reported to be the most relevant were improvised theatre unfolding existential themes and reflexive group activities. 98% of participants found the course relevant, answering either "relevant" or "very relevant". 73,1% of participants answered "to a considerable extent" or "to a great extent" when asked to what extent they assessed the content of the course to influence their work in hospice. The focus group data resulted in 3 overall themes regarding perceived barriers for providing spiritual care: 1. Diverse approaches is beneficial for spiritual care, but the lack of a shared and adequate spiritual language is a communicative barrier, 2. Existential conversation is complicated by patients' overlapping physical and existential needs, as well as miscommunication, and 3. Providing spiritual care requires spiritual self-reflection, self-awareness, introspection, and vulnerability.ConclusionsThis study provides insights into the barriers facing spiritual care in a hospice setting. Furthermore, the course evaluations demonstrate the valuable impact of spiritual care training for health care professionals. Further course work development is warranted to enhance the "science" of spiritual care for the dying.
| S-EPMC8286591 | biostudies-literature
Project description:ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and participantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and implicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.
| S-EPMC10372780 | biostudies-literature