Dataset Information

Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data.

ABSTRACT:

Background

Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions.

Aim

To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days.

Design

Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records.

Setting/participants

People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes.

Results

Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58-0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days.

Conclusions

Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

SUBMITTER: Leniz J

PROVIDER: S-EPMC8532216 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data.

Leniz Javiera J Higginson Irene J IJ Yi Deokhee D Ul-Haq Zia Z Lucas Amanda A Sleeman Katherine E KE

Palliative medicine 20210531 9

<h4>Background</h4>Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions.<h4>Aim</h4>To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days.<h4>Design</h4>Retrospective cohort study using Discover, an ...[more]

PMID: 34053356

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Project description:BackgroundPeople with dementia are most at risk of experiencing serious health related suffering, if they do not have a palliative care approach introduced early enough in the illness. It can be challenging for nurses to assess experienced needs of people, who are thought no longer able to self-report such as people with dementia. Assessment help to understand the care the patient and their family need promptly. It is unknown how nurses recognise holistic palliative care needs in people with dementia during routine care.MethodsScoping review where EMBASE, MEDLINE, CINAHL, PsycInfo databases, and references were searched with an advanced search strategy, which was built on three concepts (nurses, dementia, and nursing assessment) using corresponding Medical Subject Headings. Data were charted in a piloted extraction form, based on the assessment domains within the nursing process followed by summarise and synthesise results narratively.Results37 out of 2,028 qualitative and quantitative articles published between 2000 and 2021, and relating to 2600 + nurses, were identified. Pain was sole focus of assessment in 29 articles, leaving 8 articles to describe assessment of additional needs (e.g., discomfort). Nurses working in a nursing home assess pain and other needs by observing the persons with dementia behaviour during routine care. Nurses in the acute care setting are more likely to assess symptoms with standard assessment tools at admission and evaluate symptoms by observational methods. Across settings, about one third of pain assessments are supported by person-centred pain assessment tools. Assessments were mostly triggered when the person with dementia vocalised discomfort or a change in usual behaviour was observed. Nurses rely on family members and colleagues to gain more information about needs experienced by people with dementia.ConclusionThere is a scarcity of evidence about techniques and methods used by nurses to assess needs other than pain experienced by people with dementia. A holistic, person-centred screening tool to aid real-time observations at the bedside and used in conversations with health care professionals and families/friends, may improve need recognition other than pain, to ensure holistic needs could then be addressed timely to improve care in people with dementia.

Project description:Background and objectivesPeople living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature.MethodsA collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis.ResultsAll items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature.ConclusionsSeveral areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.

Project description:BackgroundPalliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community.MethodsA scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion.ResultsThe search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers.ConclusionsWhile the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.

Project description:The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.

Project description:BackgroundHomeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.MethodsPubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement.ResultsTwenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care.ConclusionsA patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.

Dataset Information

Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data.

Background

Aim

Design

Setting/participants

Results

Conclusions

Publications

Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data.

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