Health services research in palliative care and end-of-life care

2015 ◽  
Author(s):  
Tinne Smets ◽  
Luc Deliens
Keyword(s):  
Palliative Care ◽  
Health Services Research ◽  
Health Services ◽  
End Of Life ◽  
End Of Life Care ◽  
Complex Interventions ◽  
Control Group ◽  
Life Care ◽  
Care Needs ◽  
Services Research

Health services research in palliative care and end-of-life care involves the study of palliative care needs, access and quality of palliative care, and the feasibility, effectiveness, and cost of palliative and end-of-life care services and interventions. The evaluation of services and interventions involving patients with advanced illness presents unique challenges, both ethical and methodological. In this chapter, several research designs that are useful for the service evaluation of complex interventions in palliative care and end-of-life care are discussed and examples of studies using these designs are described. The designs that are described include both experimental and non-experimental designs. The problems and challenges that doing research with dying patients presents are subsequently described and possible solutions proposed. The challenges dealt with in this chapter include defining the intervention, determining relevant outcome measures, randomization of patients to intervention and control group, achieving recruitment and minimizing attrition, heterogeneity of the patient group, and obtaining informed consent.

Health services research in palliative and end of life care

2021 ◽  
pp. 1328-1334
Author(s):  
Tinne Smets ◽  
Luc Deliens
Keyword(s):  
Palliative Care ◽  
Health Services Research ◽  
Health Services ◽  
Medical Research ◽  
End Of Life ◽  
Research Council ◽  
Life Care ◽  
Services Research ◽  
Care Services ◽  
Palliative Care Services

Clear information about the effectiveness of services and interventions is often lacking in palliative care service planning. The development of palliative care services and interventions should be based on evidence that they will increase the likelihood of desired outcomes, but also understanding the process of the intervention and how it might work in practice are vital in building an evidence base that informs policy and practice. Health services research in palliative care covers topics such as palliative care needs, access to palliative care, quality of care and feasibility, effectiveness, and cost of palliative care services and interventions. Patients needing palliative care often have complex needs and require complex services and interventions. The Medical Research Council guidance for developing, evaluating, and implementing complex interventions, the MORECare statement on ‘best practice’ methods for research evaluating end of life care, and the Medical Research Council guidance on process evaluation offer useful support for researchers undertaking health services research. To evaluate complex services and interventions, a wide ranch of study designs can be used. Studies that enrol patients with advanced illness present unique challenges, both ethical and methodological.

Pulmonary referrals to specialist palliative medicine: a survey

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Chronic Respiratory Disease ◽  
Life Care ◽  
Care Needs ◽  
Patients With Cancer ◽  
Referral Criteria ◽  
Referral Practices ◽  
Palliative Care Needs

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

27 Understanding public attitudes: a crucial component for developing palliative care services

2018 ◽  
Vol 8 (3) ◽  
pp. 370.1-370 ◽  
Author(s):  
Ishrat Islam ◽  
Anthony Byrne ◽  
Annmarie Nelson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Social Services ◽  
End Of Life Care ◽  
Online Survey ◽  
Public Attitudes ◽  
List Type ◽  
Life Care ◽  
Services Research ◽  
Survey Tool

IntroductionA major challenge in developing new models of palliative care is to identify the current needs of the public patients and carer (Dixon 2015). There is a lack of evidence on people’s attitudes towards end of life care (EoLC) in Wales.AimTo increase understanding of people’s feelings views knowledge and preferences around EoLC.MethodAn online survey was conducted using an electronic survey tool. Descriptive statistics and thematic analysis were used to perform data analysis.Results2210 people (Age: Mean +SD; 55+14 years) participated in the survey 43% of those were members of the general public 29% were patients/carers and 23% were health professionals. 49% of respondents thought that available palliative care was inadequate and 92% believed that end of life care for dying people should have equal priority for the NHS. 95% of respondents thought that expressing preferences around EoLC in advance was important but only 13% had done this in practice and 60% did not know how to plan their EoLC. However the top three needs in EoLC were identified as having a trained carer (84%) access to other professionals (59%) and emergency care (44%). The top three preferences for EoLC were being surrounded by loved ones (62%) maintaining dignity (55%) and a feeling of peace (40%). Just 24% respondents would chose to be at home while receiving EoLC.ConclusionsUnderstanding public attitudes is essential to understanding changing contexts of care. Developing a need-based palliative care model enhances an effective service delivery.Reference. Dixon J, et al. Equity in the provision of palliative care in the UK: Review of evidence2015;pg. 1–145. London: Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf

First steps: Health and social care professionals beginning to address the palliative and end of life care needs of people with diverse gender identities and sexual orientations in Lebanon

Sexualities ◽  
2020 ◽  
pp. 136346072093238
Author(s):  
Claude Chidiac
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Stigma ◽  
Life Care ◽  
Care Needs ◽  
Mena Region ◽  
Healthcare Needs ◽  
Health And Social Care ◽  
The Impact

The available evidence demonstrates that lesbian, gay, bisexual, and transgender (LGBT) people face challenges when accessing palliative care services, and receive suboptimal care at the end of life. This is mainly attributed to assumed heterosexuality, lack of knowledge and understanding of LGBT issues and specific healthcare needs, discrimination, homophobia, and transphobia. In Lebanon, legal and institutional support for LGBT individuals is minimal, and palliative care provision remains scarce and fragmented. This compounds the impact of social stigma and marginalisation, and results in unrecognised palliative and end of life care needs for the LGBT individual. This short commentary discusses the development of an LGBT palliative care workshop in Lebanon, which was the first initiative of its kind in the Middle East and North Africa (MENA) region. It also explores how this initiative has led to further developments, and how these efforts can be replicated in other countries in the MENA region.

scholarly journals A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia

2019 ◽  
Vol 33 (4) ◽  
pp. 415-429 ◽  
Author(s):  
Sarah Amador ◽  
Elizabeth L Sampson ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Quality Indicators ◽  
End Of Life Care ◽  
Critical Appraisal ◽  
Complex Interventions ◽  
Service Development ◽  
Life Care ◽  
People With Dementia ◽  
Effective Care

Background: A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation. Aim: To identify and critically evaluate quality indicators for end-of-life care in dementia. Results: We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines. Conclusions: We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.

scholarly journals End of Life Care in Scotland: Trends in the Population in Need of Palliative Care

2018 ◽  
Vol 3 (2) ◽  
Author(s):  
Anna Schneider ◽  
Iain Atherton
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Living Arrangements ◽  
End Of Life Care ◽  
Service Use ◽  
Census Data ◽  
Estimation Method ◽  
Life Care ◽  
Care Providers ◽  
Care Needs

BackgroundEstimation of population-wide palliative care needs is crucial for end-of-life care planning, and literature around it has grown in the last years. However, no estimates have yet been published for Scotland. ObjectivesThis paper provides estimates of how many people require palliative care in Scotland and describes changes in the composition of this subpopulation. What are their living arrangements? How have their medical conditions, health service use, and health trajectories changed? Methods (including data)The analysis is based on linked hospital records, death records, and Scottish Census data from 2001/02 and 2011/12. The palliative care estimation method by Murtagh et al. is utilised, as well as the illness trajectories distinguished by Murray et al. Comparative cross-sectional descriptive statistics are provided. FindingsWhile a recent paper suggests that palliative care need in England/Wales has increased from 72.5% in 2006 to 74.9% in 2014, the share of people with a palliative care need among all deaths in Scotland has decreased from 80.6% to 78.3% in the period of this study. The share of people aged 85+ rose from 26.6% to 31.4%, and we observe a doubling of cases with prolonged dwindling at the end of their life. Despite their high need for care, 4 in 5 people lived in a private household in their last year of life, and 1 in 3 people lived alone. ConclusionsOur findings suggest a change in the volume of care need and in the types of care required. They have strong implications for care providers.

scholarly journals Palliative and End-of-Life Care: More Work is Required

2020 ◽  
Vol 17 (20) ◽  
pp. 7429
Author(s):  
Doris Y. P. Leung ◽  
Helen Y. L. Chan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Empirical Studies ◽  
Life Care ◽  
Care Needs ◽  
Goals Of Medicine ◽  
Palliative Care Education ◽  
Policy Frameworks ◽  
Complex Care Needs

There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology. The results generally suggest the merits of palliative care and reveal room for further improvement in palliative care education, manpower, infrastructure, and legal and policy frameworks.

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