scholarly journals Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

2021 ◽  
Vol 19 (2) ◽  
pp. 129-134
Author(s):  
Lori Wiener ◽  
Abby R. Rosenberg ◽  
Brian Pennarola ◽  
Abigail Fry ◽  
Meaghann Weaver
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Nuclear Family ◽  
The United States ◽  
Personal Contact ◽  
Life Care ◽  
Care Providers ◽  
Healthcare Provision

AbstractObjectiveParents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).MethodThe Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.ResultsA total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.Significance of resultsThe COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

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 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

The impact of a one month palliative care rotation on medical residents working in a tertiary cancer center in Jordan.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 168-168
Author(s):  
Omar M. Shamieh ◽  
Alia Alawneh ◽  
Wafa Ahamd ◽  
Sewar S Salmany ◽  
Barakat Altamimi ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Medical Residents ◽  
Cancer Center ◽  
Clinical Rotation ◽  
Life Care ◽  
The Impact ◽  
Tertiary Cancer Center

168 Background: Palliative care education and training remains inadequate for medical professionals especially in developing countries. We evaluated the impact of a one month palliative care clinical rotation on medical residents’ attitude, competency, and knowledge related to palliative care in a tertiary cancer center in Jordan. Methods: All transitional Internal Medicine residents rotated in a monthly palliative care rotation at King Hussein Cancer Center (KHCC), in Amman, Jordan, were requested to participate in this educational intervention study. A concise curriculum in palliative and end of life care, adapted from the Education for Physicians on End-Of-Life Care (EPEC) Curriculum and delivered by our faculty was piloted as a part of the clinical rotation. Residents spent one month in the inpatient palliative care unit, in addition to 10 hours of classroom interactive sessions. The curriculum comprised of five modules: 1- Principles of palliative care, 2- Pain management, 3- Management of distressing symptoms, 4- Communication skills, 5- End-of- life care. To assess our educational outcomes, we adapted a previously developed instruments by David Weisman and used by the National Residency Education in the United States. All Instruments were completed by each resident before and after the rotation, and included self-assessment of attitude, competency and a knowledge test comprising of 32-items of multiple choice questions. Results: Twenty of 27 (74%) residents who started the palliative care rotation completed the required education and had paired evaluations. There was improvement in all three instruments: 37% improvement in competence (p < 0.0001), 17% Improvement in knowledge (p = 0.015), and 5% improvement in attitude (p = 0.02). Conclusions: The one-month mandatory rotation improved knowledge, attitude and competence related to palliative care for medical residents.

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 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.

Nurses' moral distress in end-of-life care: A qualitative study

2020 ◽  
pp. 096973302096485
Author(s):  
Elvira Luana De Brasi ◽  
Noemi Giannetta ◽  
Sara Ercolani ◽  
Elena Lucia Maria Gandini ◽  
Dina Moranda ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Research Question ◽  
Secondary Outcome ◽  
Life Care ◽  
Snowball Sampling ◽  
Care Education

Background: Moral distress is a neglected issue in most palliative education programmes, and research has largely focused on this phenomenon as an occupational problem for nursing staff. Research question: The primary outcome of this study was to explore the causes of morally distressing events, feelings experienced by nurses and coping strategies utilised by a nursing population at an Italian teaching hospital. A secondary outcome of this qualitative study was to analyse whether palliative care or end-of-life care education may reduce morally distressing events. Research design: A hermeneutic-phenomenological qualitative study was performed. Participants and research context: Participants were recruited through snowball sampling. The interviews were conducted and recorded by one interviewer and transcribed verbatim. Ethical considerations: Ethical approval was obtained from the Institutional Review Hospital Board. Findings: Six main themes emerged from the interview analyses: (1) the causes of moral distress; (2) feelings and emotions experienced during morally distressing events; (3) factors that affect the experience of moral distress; (4) strategies for coping with moral distress; (5) recovering from morally distressing events; and (6) end-of-life accompaniment. Varying opinions regarding the usefulness of palliative care education existed. Some nurses stated that participation in end-of-life courses did not help them cope with morally distressing events in the ward, and they believe that existing courses should be strengthened and better structured. Discussion: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients’ last requests. According to our findings, the concept of ‘good’ end-of-life accompaniment was extremely important to our sample for the prevention of morally distressing events. Conclusion: Nurses who work in the onco-haematological setting frequently experience moral distress. Determining the causes of moral distress at early stages is of paramount importance for finding a solution.

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