scholarly journals Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers

2019 ◽  
Vol 102 (3) ◽  
pp. 494-502 ◽  
Author(s):  
Lisa Jane Brighton ◽  
Lucy Ellen Selman ◽  
Katherine Bristowe ◽  
Beth Edwards ◽  
Jonathan Koffman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Emotional Labour ◽  
Generalist Palliative Care

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia

2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Access To Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Scoping Review ◽  
End Of Life Care ◽  
Psychosocial Interventions ◽  
Life Care ◽  
Care Providers

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

Cannabis in End-of-Life Care: Examining Attitudes and Practices of Palliative Care Providers

2018 ◽  
Vol 50 (4) ◽  
pp. 348-354 ◽  
Author(s):  
Rachel Luba ◽  
Mitch Earleywine ◽  
Stacey Farmer ◽  
Melissa Slavin
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Attitudes And Practices

Cultural Issues in Palliative Care

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cultural Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Cultural Issues ◽  
Medical Interpreter ◽  
Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

scholarly journals What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

BMJ Open ◽  
2015 ◽  
Vol 5 (6) ◽  
pp. e007492 ◽  
Author(s):  
Bina Mistry ◽  
Daryl Bainbridge ◽  
Deanna Bryant ◽  
Sue Tan Toyofuku ◽  
Hsien Seow
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Community Based ◽  
What Matters

scholarly journals How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers

2021 ◽  
Vol 15 ◽  
pp. 263235242110459
Author(s):  
Anita Ho ◽  
Joshua S. Norman ◽  
Soodabeh Joolaee ◽  
Kristie Serota ◽  
Louise Twells ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Assisted Dying ◽  
Life Care ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Qualitative Thematic Analysis

Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto ( n = 22) were interviewed in person or by phone. Participants included physicians ( n = 22), nurses ( n = 15), social workers ( n = 7), and allied health professionals ( n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.

scholarly journals The role and response of primary healthcare services in the delivery of palliative care in epidemics and pandemics: A rapid review to inform practice and service delivery during the COVID-19 pandemic

2020 ◽  
Vol 34 (9) ◽  
pp. 1182-1192 ◽  
Author(s):  
Sarah Mitchell ◽  
Victoria Maynard ◽  
Victoria Lyons ◽  
Nicholas Jones ◽  
Clare Gardiner
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Service Delivery ◽  
End Of Life ◽  
Primary Healthcare ◽  
End Of Life Care ◽  
Healthcare Services ◽  
Rapid Review ◽  
Life Care ◽  
Care Providers

Background: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control. Aim: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics. Design: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence. Data sources: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020. Results: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to ‘systems’ (community providers feeling disadvantaged in terms of receiving timely information and protocols), ‘space’ (recognised need for more care in the community), ‘staff’ (training needs and resilience) and ‘stuff’ (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations). Conclusions: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.

scholarly journals An examination of home-based end-of-life care for cancer patients: a qualitative study

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Xiao Bin Lai ◽  
Li Qun Chen ◽  
Shu Hui Chen ◽  
Hai Ou Xia
Keyword(s):  
Health Service ◽  
Qualitative Study ◽  
Community Health ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Community Health Service ◽  
Life Care ◽  
Care Providers ◽  
Home Based

Abstract Background Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care. Methods This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019. Results Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient’s condition, managing the patient’s symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care. Conclusions Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.

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.

End-of-Life Care: Forensic Medicine v. Palliative Medicine

2003 ◽  
Vol 31 (3) ◽  
pp. 365-376 ◽  
Author(s):  
Joseph P. Pestaner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Forensic Medicine ◽  
End Of Life Care ◽  
Palliative Medicine ◽  
Assisted Suicide ◽  
Life Care ◽  
Care Providers ◽  
Natural Death

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens the patient’s life.” Practitioners of forensic medicine grapple with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles.

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