G473(P) End of life care in children with neurodisability and concurrent palliative care needs: an audit of local paediatric palliative services

2019 ◽  
Author(s):  
Li FHQ ◽  
G Santhanam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Needs ◽  
Palliative Care Needs

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.

An Admiral Nursing and hospice partnership in end-of-life care: Innovative practice

Dementia ◽  
2018 ◽  
Vol 19 (7) ◽  
pp. 2484-2493
Author(s):  
Karen Harrison Dening ◽  
Jaqueline Crowther ◽  
Sadaf Adnan
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Stage ◽  
Life Care ◽  
Care Providers ◽  
Care Needs ◽  
People With Dementia ◽  
Health And Social Care ◽  
Palliative Care Needs

Addressing palliative care needs of people with dementia appropriately, identifying the end-of-life stage, meeting the needs of family carers as well as supporting the preferences and wishes of the person with the diagnosis can all present challenges to generalist health and social care providers. In partnership with Dementia UK and Kirkwood Hospice in West Yorkshire embarked upon a two-year pilot to introduce the first end-of-life care Admiral Nurse to their Specialist Community Palliative Care Team to identify and support people with dementia who required palliative and end-of-life care. This paper describes and discusses this innovative partnership and outcomes from year one evaluation and sets out future plans.

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 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.

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.

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.

Seeking Excellence in End of Life Care (SEE Care): A Multi-Centered Acute Hospitals Service Evaluation

2021 ◽  
pp. 104990912110278
Author(s):  
Simon Tavabie ◽  
Anja Berglund ◽  
David Barclay ◽  
Steve Bass ◽  
Naomi Collins ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Service Evaluation ◽  
Hospital Inpatient ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Care Plans ◽  
Inpatient Population ◽  
Palliative Care Needs

Context: A proportion of UK hospital inpatients have palliative care needs but do not access specialist services. Objectives: To contemporaneously evaluate the significance of unmet specialist palliative care needs within the hospital inpatient population. Methods: Prospective multi-centered service evaluation was conducted through 4 snapshots across 4 acute NHS hospital trusts. All patients identified as dying in each hospital were included. Data extraction included symptom burden, medications and completion of care plans. Results: End-of-life care plans were completed for 73%, symptom-focused prescribing present in 96%. Symptoms were not well managed for 22%, with 4% suffering moderate to severely. Specific intervention was triggered in 56% of patients, consisting of prescribing advice and holistic support. Conclusion: There are significant unmet specialist palliative care needs within the hospital inpatient population. Contemporaneous data collection coupled with an outreach approach helps palliative care services better understand the experiences of dying people, alongside where improvement is needed.

scholarly journals What is the evidence that people with frailty have needs for palliative care at the end of life? A systematic review and narrative synthesis

2019 ◽  
Vol 33 (4) ◽  
pp. 399-414 ◽  
Author(s):  
Daniel Stow ◽  
Gemma Spiers ◽  
Fiona E Matthews ◽  
Barbara Hanratty
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Family Needs ◽  
Psychosocial Needs ◽  
Care Needs ◽  
Critical Phases

Background: The number of older people living and dying with frailty is rising, but our understanding of their end-of-life care needs is limited. Aim: To synthesise evidence on the end-of-life care needs of people with frailty. Design: Systematic review of literature and narrative synthesis. Protocol registered prospectively with PROSPERO (CRD42016049506). Data sources: Fourteen electronic databases (CINAHL, Cochrane, Embase, EThOS, Google, Medline, NDLTD, NHS Evidence, NICE, Open grey, Psychinfo, SCIE, SCOPUS and Web of Science) searched from inception to October 2017 and supplemented with bibliographic screening and reference chaining. Studies were included if they used an explicit definition or measure of frailty. Quality was assessed using the National Institute for Health tool for observational studies. Results: A total of 4,998 articles were retrieved. Twenty met the inclusion criteria, providing evidence from 92,448 individuals (18,698 with frailty) across seven countries. Thirteen different measures or definitions of frailty were used. People with frailty experience pain and emotional distress at levels similar to people with cancer and also report a range of physical and psychosocial needs, including weakness and anxiety. Functional support needs were high and were highest where people with frailty were cognitively impaired. Individuals with frailty often expressed a preference for reduced intervention, but these preferences were not always observed at critical phases of care. Conclusion: People with frailty have varied physical and psychosocial needs at the end of life that may benefit from palliative care. Frailty services should be tailored to patient and family needs and preferences at the end of life.

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