Hospital-Based Palliative and End-of-Life Care in the COVID-19 Pandemic: A Scoping Review

Aim: To identify the nature of the evidence reporting hospital-based palliative and end-of-life care during the COVID-19 pandemic. Background: The COVID-19 pandemic has seen an increase in the numbers of seriously ill people being cared for across all health services worldwide. Due to the rapid progression of severe symptoms, the majority of staff working in hospitals and other healthcare centres were providing end-of-life care. Little is known about the level of hospital-based palliative care service provided during the COVID-19 pandemic, particularly during surges in admission rates with an increased number of deaths accruing. Methods: A scoping review was conducted to search and select potential studies. The scoping review was guided by the framework of Arskey and O’Malley and advanced by the use of the methodology of the Joanna Briggs Institute. Results: Eighteen studies published between March 2020 and July 2021 were identified. Three broad categories included overall management strategy and logistics, symptom prevalence and management of patients with COVID-19 and end-of-life care needs within the current pandemic. Conclusions: This review highlights increased awareness and knowledge of palliative and end-of-life care provided in hospitals. The review also highlights the response of hospital-based palliative care teams to an evolving crisis, within the context of developed health systems under sustained and overwhelming pressure. Implications: Newly established clinical links and referral pathways developed during the initial COVID-19 surge between hospital-based palliative care and other healthcare teams, be continued and further enhanced. Understanding of the role of specialist palliative care providers in supporting palliative and end-of-life care within the hospital setting needs further investigation.

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

Journal of Palliative Care ◽

10.1177/0825859718804108 ◽

2018 ◽

Vol 34 (1) ◽

pp. 62-69 ◽

Cited By ~ 7

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.

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

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211010722 ◽

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.

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

Journal of Psychoactive Drugs ◽

10.1080/02791072.2018.1462543 ◽

2018 ◽

Vol 50 (4) ◽

pp. 348-354 ◽

Cited By ~ 10

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

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Cultural Issues in Palliative Care

Hospice and Palliative Medicine and Supportive Care Flashcards ◽

10.1093/med/9780190633066.003.0018 ◽

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.

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Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review

Families in Society The Journal of Contemporary Social Services ◽

10.1177/1044389418809083 ◽

2018 ◽

Vol 99 (4) ◽

pp. 301-316 ◽

Cited By ~ 5

Author(s):

Daniel S. Gardner ◽

Meredith Doherty ◽

Gleneara Bates ◽

Aliza Koplow ◽

Sarah Johnson

Keyword(s):

Palliative Care ◽

End Of Life ◽

Scoping Review ◽

End Of Life Care ◽

Ethnic Disparities ◽

Racial And Ethnic Disparities ◽

Life Care ◽

Search Terms ◽

Communities Of Color ◽

Social Environmental

Despite the advances and spread of palliative care programs, communities of color remain significantly underserved. Although these disparities are widely known, there is a marked lack of empirical evidence. The authors conducted a systematic scoping review that synthesized the literature since 2000 about racial and ethnic disparities in palliative and end-of-life care. We searched PubMed, Medline, SocIndex, CINAHL, Social Work Abstracts, and PsycINFO, using search terms including palliative care or end-of-life care, disparities or barriers or utilization, and race or ethnicity or African American or Hispanic. Findings lend support to extant literature that social-environmental barriers and disparities distinctly affect access to care for these populations. The review expands upon understanding of how social determinants drive disparities in palliative and end-of-life care and suggests implications for practice, policy, and research in promoting health equity in serious illness.

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

BMJ Open ◽

10.1136/bmjopen-2014-007492 ◽

2015 ◽

Vol 5 (6) ◽

pp. e007492 ◽

Cited By ~ 22

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

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Aggressiveness of end-of-life care before and after the utilization of a palliative care service.

Journal of Clinical Oncology ◽

10.1200/jco.2011.29.15_suppl.9135 ◽

2011 ◽

Vol 29 (15_suppl) ◽

pp. 9135-9135

Author(s):

W. Gonsalves ◽

T. Tashi ◽

T. Davies ◽

S. Ortman ◽

R. Thota ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Care Service ◽

Palliative Care Service ◽

Life Care ◽

Before And After

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Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

Palliative & Supportive Care ◽

10.1017/s1478951517000232 ◽

2017 ◽

Vol 16 (3) ◽

pp. 260-268 ◽

Cited By ~ 11

Author(s):

Yoko Naoki ◽

Yoshinobu Matsuda ◽

Isseki Maeda ◽

Hideka Kamino ◽

Yoko Kozaki ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Family Caregivers ◽

Caregiver Burden ◽

End Of Life Care ◽

Care Service ◽

Palliative Care Service ◽

Family Satisfaction ◽

Life Care ◽

Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

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

Palliative Care and Social Practice ◽

10.1177/26323524211045996 ◽

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.

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