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.

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.

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.

Does post-registration palliative care education for nurses improve practice? A systematic review

2019 ◽  
Vol 25 (11) ◽  
pp. 552-564 ◽  
Author(s):  
Angela Thavaraj ◽  
Karen Gillett
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Outcome Measures ◽  
End Of Life Care ◽  
Quantitative Data ◽  
Life Care ◽  
Care Education ◽  
Palliative Care Education ◽  
The Impact

Aims: We aimed to answer the question: what is the evidence that post-registration palliative care education for nurses improves practice? Background: The 2008 End of Life Care Strategy emphasised the need for a workforce equipped to provide high-quality end-of-life care for patients and their families. As registered nurses are the healthcare professionals spending most time with patients and families at the end of life, associated policy documents stress the importance of educating nurses to equip them with the necessary knowledge and skills to provide effective care. Despite education being a consistent recommendation, the ability of education to influence nursing practice is uncertain. Methods: We undertook a systematic review of literature using Joanna Briggs Institute Methodology for Mixed Methods by searching the Medline, Embase and CINAHL databases between January 2006 and December 2018. Findings: Ten studies met the inclusion criteria, seven contained quantitative data. Six demonstrated improvements in outcome measures, but not all results were statistically significant. Most quantitative data related to self-reported measures of confidence. Six studies contained qualitative findings that were categorised into themes: confidence, practice change, skills and proactivity. Conclusion: Little research exists exploring the impact of post-registration palliative care education for nurses. Existing outcome measures do not clearly demonstrate changes to end-of-life practice. Research is suggested to establish links between self-reported confidence and improvements to practice. Evaluation of the impact on practice should be an integral component of end-of-life education initiatives.

scholarly journals Education is an important factor in end-of-life care: results from a survey of Brazilian physicians’ attitudes and knowledge in end-of-life medicine

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Thais Ioshimoto ◽  
Danielle Ioshimoto Shitara ◽  
Gilmar Fernades do Prado ◽  
Raymon Pizzoni ◽  
Rafael Hennemann Sassi ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Medical Schools ◽  
Medical Residency ◽  
Life Care ◽  
Prior Training ◽  
Care Education ◽  
Palliative Care Education ◽  
Dying Patients

Abstract Background According to the Latin America Association for palliative care, Brazil offers only 0.48 palliative care services per 1 million inhabitants. In 2012, no accredited physicians were working in palliative care, while only 1.1% of medical schools included palliative care education in their undergraduate curricula. As a reflection of the current scenario, little research about end-of-life care has been published so that studies addressing this subject in the Brazilian setting are crucial. Methods A cross-sectional study study conducted with students applying for the medical residency of the Federal University of São Paulo were invited to voluntarily participate in an anonymous and self-administered questionnaire survey. The latter included demographic information, attitudes, prior training in end-of-life care, prior end-of-life care experience, the 20-item Palliative Care Knowledge Test (PCKT) and a consent term. Results Of the 3086 subjects applying for residency, 2349 (76%) answered the survey, 2225 were eligible for analysis while 124 were excluded due to incomplete data. Although the majority (99,2%) thought it was important to have palliative care education in the medical curriculum, less than half of them (46,2%) reported having received no education on palliative care. The overall performance in the PCKT was poor, with a mean score of 10,79 (± 3). While philosophical questions were correctly answered (81,8% of correct answers), most participants lacked knowledge in symptom control (50,7% for pain, 57,3% for dyspnea, 52,2% for psychiatric problems and 43,4% for gastrointestinal problems). Doctors that had already concluded a prior residency program and the ones that had prior experience with terminal patients performed better in the PCKT (p < 0,001). The high-performance group (more than 50% of correct answers) had received more training in end-of-life care, showed more interest in learning more about the subject, had a better sense of preparedness, as well as a higher percentage of experience in caring for terminal patients (p < 0,001). Conclusions Our study showed that Brazilian physicians lack not only the knowledge, but also training in end-of-life medicine. Important factors to better knowledge in end-of-life care were prior training, previous contact with dying patients and prior medical residency. Corroborating the literature, for this group, training showed to be a key factor in overall in this area of knowledge. Therefore, Brazilian medical schools and residency programs should focus on improving palliative training, especially those involving contact with dying patients.

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.

Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review

2021 ◽  
pp. 026921632110295
Author(s):  
Mariana Dittborn ◽  
Pamela Turrillas ◽  
Matthew Maddocks ◽  
Javiera Leniz
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Latin America ◽  
End Of Life ◽  
End Of Life Care ◽  
Universal Access ◽  
Empirical Studies ◽  
Religious Community ◽  
Life Care ◽  
Advanced Illness

Background: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. Aim: To synthesize and appraise the evidence about patients with advanced illness and their caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America. Design: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. Data sources: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. Results: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver’s role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients’ preference to be informed about their condition contrasting with caregivers’ reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. Conclusion: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.

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.

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