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

scholarly journals UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey

2016 ◽  
Vol 8 (4) ◽  
pp. 424-427 ◽  
Author(s):  
Sarah Amador ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Elizabeth L Sampson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Online Survey ◽  
Symptom Control ◽  
Good Practice ◽  
Dementia Care ◽  
National Council ◽  
Life Care ◽  
Wide Range

BackgroundPeople living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care.MethodsAn online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics.Results15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision.ConclusionsRecent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, ‘Hospice-enabled Dementia Care’.

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.

48 Junior doctors and end of life care: a systematic review and narrative synthesis

2018 ◽  
Vol 8 (3) ◽  
pp. 378.1-378
Author(s):  
Aamena Bharmal ◽  
Tessa Morgan ◽  
Stephen Barclay
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Empirical Literature ◽  
Junior Doctors ◽  
List Type ◽  
Narrative Synthesis ◽  
Life Care ◽  
Dying Patients

BackgroundNearly 50% of all deaths in the UK occur in hospitals.1 The majority of these patients die in a generalist setting2 where their medical care is predominately provided by junior doctors. There is a growing recognition of a need to embed palliative care into doctors’ training.3Little evidence exists, however, concerning junior doctors’ current experiences of palliative care.AimsTo review the empirical literature between 2000 and 2018 concerning junior doctors experience of and preparation for palliative and end of life care.MethodsSystematic review and narrative synthesis of qualitative and quantitative studies within six databases to find empirical studies on junior doctors experience of adult palliative care in inpatient hospital or hospice settings.ResultsFrom the initial 6308 titles identified, 32 studies met the inclusion criteria with a further five identified from reference searching.Three key themes were identified:‘Significance of death and dying’‘Thrown into the deep end’‘Addressing the gaps’. All the studies provided evidence that junior doctors care for many dying patients very early in their career. Junior doctors do not feel adequately prepared to care for dying patients and feel unsupported when doing so. Junior doctors report emotional distress when caring for their first few dying patients, memories of which continue to affect them throughout their careers. Their attitudes towards end–of–life care varied: some reported it as a privilege while others associated it with a culture of disengagement that stigmatised dying patients.ConclusionsJunior doctors need further support, education and preparation for their exposure to palliative care. Experiential learning, reflective practice and role modelling are described as the most effective ways to learn palliative care and this also teaches them other transferrable skills such as communication, teamwork and professionalism that are vital for their future careers.References. Office for National Statistics Deaths Registered in England and Wales2016.. Gomes B, Higginson I. Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Med2008;22:33–41.. General Medical Council. Tomorrow’s doctors: Recommendations on undergraduate medical education 2002 (2nd ed.). London: GMC.

scholarly journals Experiences, challenges and perspectives for ensuring end-of-life patient care: A national online survey with general practitioners in Germany

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254056
Author(s):  
Jannik M. Tielker ◽  
Jan P. Weber ◽  
Steffen T. Simon ◽  
Claudia Bausewein ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Online Survey ◽  
Personal Contact ◽  
Life Care ◽  
Dying Patients

Background The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients. Objectives To describe GPs’ experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany. Materials and methods In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists. Results In total, 410 GPs responded; 61.5% indicated that the quality of their patients’ end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%). Conclusions The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic. To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care.

scholarly journals Honoring Preferences—The Consistency Between End-of-Life Care and a Veteran’s Goal for Comfort Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Logistic Regression ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multivariate Logistic Regression ◽  
Comfort Care ◽  
Lower Odds ◽  
Medicare Data ◽  
Life Sustaining Treatment

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).

scholarly journals Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ishrat Islam ◽  
Annmarie Nelson ◽  
Mirella Longo ◽  
Anthony Byrne
Keyword(s):  
Social Media ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Public Attitudes ◽  
Death And Dying ◽  
Service Utilisation ◽  
Life Care ◽  
Manner Of Death ◽  
Attitudes Towards Death

Abstract Background Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. Methods An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. Results 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

Help Me Understand: Providing Palliative Care to Individuals With Serious Mental Illness

2021 ◽  
pp. 104990912110107
Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
End Of Life ◽  
Serious Mental Illness ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Life Care ◽  
Case Examples ◽  
Increased Risk ◽  
Palliative Care Teams

Individuals with serious mental illness (SMI) have shortened life expectancy with increased risk of developing comorbid medical illnesses. They might have difficulty accessing care and can be lost to follow-up due to complex socioeconomic factors, placing them at greater risk of dying from chronic or undiagnosed conditions. This, in combination with stigma associated with SMI, can result in lower quality end-of-life care. Interdisciplinary palliative care teams are in a unique position to lend assistance to those with SMI given their expertise in serious illness communication, values-based care, and psychosocial support. However, palliative care teams might be unfamiliar with the hallmark features of the various SMI diagnoses. Consequently, recognizing and managing exacerbations of SMI while delivering concurrent palliative or end-of-life care can feel challenging. The goal of this narrative review is to describe the benefits of providing palliative care to individuals with SMI with concrete suggestions for communication and use of recovery-oriented language in the treatment of individuals with SMI. The salient features of 3 SMI diagnoses—Bipolar Disorders, Major Depressive Disorder, and Schizophrenia—are outlined through case examples. Recommendations for working with individuals who have SMI and other life-limiting illness are provided, including strategies to effectively manage SMI exacerbations.

scholarly journals Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital

2021 ◽  
pp. 026921632110020
Author(s):  
Kieran L Quinn ◽  
Amy T Hsu ◽  
Christopher Meaney ◽  
Danial Qureshi ◽  
Peter Tanuseputro ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Major Surgery ◽  
Life Care ◽  
Healthcare Use ◽  
National Cohort ◽  
Acute Healthcare ◽  
Invasive Intervention

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

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