Increasing our understanding of nonphysical suffering within palliative care: A scoping review

2021 ◽  
pp. 1-16 ◽  
Author(s):  
Maxxine Rattner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Healthcare Providers ◽  
Palliative Sedation ◽  
Primary Sources ◽  
Future Research ◽  
Social Emotional ◽  
Relief Of Suffering ◽  
Hastened Death

Abstract Objective Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap. Method Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria. Results Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering. Significance of results This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

scholarly journals Complexity In The Context of Palliative Care: A Scoping Review

2021 ◽  
Author(s):  
Hironori Ohinata ◽  
Maho Aoyama ◽  
Mitsunori Miyashita
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
Healthcare Providers ◽  
The United States ◽  
Patient Specific ◽  
Future Research ◽  
Care Needs ◽  
Living Situation ◽  
Research Activities ◽  
Specific Factors

Abstract Background: Understanding the factors of complexity of patients in palliative care is very important for healthcare providers in addressing the care needs of their patients. However, the healthcare providers’ perception of the factors of complexity in palliative care lacks a common understanding. This study aimed to determine the scope of research activities and specific factors of complexity in the context of palliative care.Methods: A scoping literature review was performed, following the methods described by the Joanna Briggs Institute. We conducted an electronic literature search in MEDLINE (Ovid), PsycINFO, Web of Science Core Collection, and CINAHL, examining literature from May 1972 to 2020.Results: We identified 32 peer-reviewed articles published in English before 2020. The target literature mainly originated in Europe and the United States. The research methods included quantitative studies (n=13), qualitative studies (n=12), case studies (n=3), and reviews (n=4). We reviewed 32 studies and summarized the factors of complexity into three levels: the patient’s level, the healthcare setting level, and the socio-cultural landscape level. We identified factors affecting patient-specific complexity, including sex, race, age, living situation, family burden, resources, treatment, decision-making, communication, prognosis, disease, and comorbidity/complexity. Other factors identified as contributing to patient complexity were the interaction of physical, psychological, social, and spiritual categories, as well as the healthcare providers’ confidence and skills, and the socio-cultural components.Conclusions: This scoping review shows specific factors of complexity and future challenges in the context of palliative care. Future research should include the factors of complexity identified in this review and conduct longitudinal studies on the interactions among them. In addition, it is necessary to examine specific complexity factors in patients from various social and ethnic backgrounds.

A scoping review of palliative care for persons with severe persistent mental illness

2019 ◽  
Vol 17 (04) ◽  
pp. 479-487 ◽  
Author(s):  
Erin E. Donald ◽  
Kelli I Stajduhar
Keyword(s):  
Mental Illness ◽  
Palliative Care ◽  
Scoping Review ◽  
Research Question ◽  
Healthcare Providers ◽  
Premature Death ◽  
Future Research ◽  
Research Activity ◽  
Complex Needs ◽  
Persistent Mental Illness

AbstractObjectivePeople with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.MethodA systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.ResultFour major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.Significance of resultsThis review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.

Are patient portals being used to support palliative and end-of-life care?: A scoping review (Preprint)

2021 ◽  
Author(s):  
M. Pilar Ingle ◽  
Cristina Valdovinos ◽  
Kelsey L. Ford ◽  
Shou Zhou ◽  
Sheana Bull ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Future Research ◽  
Patient Portal ◽  
Patient Portals ◽  
User Acceptability ◽  
National Coalition ◽  
Meta Analyses ◽  
Hospice And Palliative Care

BACKGROUND Although patient portals are widely used for health promotion, little is known about use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. OBJECTIVE To identify and assess user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. METHODS A scoping review of the academic literature directed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). We searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention, focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care, targeted adults with serious illness and/or caregivers, and were offered via patient portal tethered to an electronic medical record. Authors independently screened titles and abstracts (N=796) for eligibility. Full texts (N=84) sources were reviewed. Descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool were abstracted from included sources (N=19). RESULTS Nineteen articles describing 12 tools were included, addressing the following PCEOL domains: ethical/legal (N=5), physical (N=5), and psychological/psychiatric (N=2). No tools for bereavement or hospice were identified. Studies reported high acceptability of tools among users; however, few sources commented on usability among older adults. CONCLUSIONS PCEOL patient portal tools are understudied. As medical care increasingly moves towards virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portals resources and evaluate their impact on health outcomes.

Spiritual issues in palliative medicine

2021 ◽  
pp. 1063-1071
Author(s):  
Susan McClement ◽  
Genevieve Thompson ◽  
Jamie Penner
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Spiritual Care ◽  
Healthcare Providers ◽  
Future Research ◽  
Care Needs ◽  
Spiritual Assessment ◽  
Whole Person ◽  
Future Research Directions ◽  
Spiritual Suffering

The focus of palliative care is the whole person, including biopsychosocial, cultural, and spiritual dimensions of patient needs. The burgeoning literature examining the topic of spirituality within healthcare in general, and within palliative care in particular, underscores the notion that attending to patients’ spiritual care needs is a vital part of providing optimal palliative care. Yet healthcare providers frequently report that they feel ill equipped to provide spiritual care at the end of life and wrestle with many questions and uncertainties: What is spirituality? Why is it important? What is spiritual suffering? Who should provide spiritual care? How is a spiritual assessment conducted? What are some spiritual interventions for end of life care? What are some future research directions in the area of spiritual care? Answers to these questions form the basis of this chapter.

Female Veteran Use of Palliative and Hospice Care: A Scoping Review

2021 ◽  
Author(s):  
Brandon M Varilek ◽  
Mary J Isaacson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
End Of Life Care ◽  
Hospice Care ◽  
Healthcare Providers ◽  
Female Veterans ◽  
Life Care ◽  
Serious Illness ◽  
Female Veteran

ABSTRACT Introduction The number of female veterans in the USA in the age range of 55-64 years increased 7-fold from 2000 to 2015. Female veterans are more likely to suffer from certain mental health disorders, respiratory diseases, neurologic diseases, and some forms of cancer when compared to their male counterparts. Veterans Affairs (VA) healthcare providers need to be prepared to care for this growth of female veterans with serious illness. These serious illnesses require appropriate medical management, which often includes palliative care. It is imperative to determine how VA healthcare providers integrate palliative and hospice care for this population. The purpose of our scoping review was to explore the palliative and hospice care literature specific to female veterans to learn: (1) what evidence is available regarding female veterans’ use of palliative and hospice care? (2) To meet the needs of this growing population, what gaps exist specific to female veterans’ use of palliative and hospice care? Methods A scoping review methodology was employed following the nine-step process described by the Joanna Briggs Institute for conducting scoping reviews. Results Nineteen articles met the inclusion criteria. Fourteen quantitative articles were included which comprised 10 retrospective chart reviews, one randomized controlled trial, one correlation, one quality improvement, and one cross-sectional. The remaining five were qualitative studies. The sample populations within the articles were overwhelmingly male and white. Content analysis of the articles revealed three themes: quality of end of life care, distress, and palliative care consult. Conclusions The female veteran population is increasing and becoming more ethnically diverse. Female veterans are not well represented in the literature. Our review also uncovered a significant gap in the study methodologies. We found that retrospective chart reviews dominated the palliative and hospice care literature specific to veterans. More prospective study designs are needed that explore the veteran and family experience while receiving end of life care. With the rising number of older female veterans and their risk for serious illness, it is imperative that research studies purposefully recruit, retain, analyze, and report female veteran statistics along with their male counterparts. We can no longer afford to disregard the value of the female veterans’ perspective.

scholarly journals Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review

2018 ◽  
Vol 34 (2) ◽  
pp. 139-144 ◽  
Author(s):  
Farah Madi ◽  
Hussein Ismail ◽  
Fouad M. Fouad ◽  
Hala Kerbage ◽  
Shahaduz Zaman ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Scoping Review ◽  
Life Experiences ◽  
Death And Dying ◽  
Future Research ◽  
Inclusion Criteria ◽  
Life Challenges ◽  
High Commissioner ◽  
Final Settlement

Background: The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field. Methods: We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records. Results: Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying. Implications: Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.

Nurse Burnout in Hospice and Palliative Care: A Scoping Review

2021 ◽  
pp. 105413732110398
Author(s):  
Erica Frechman ◽  
Patricia M. Wright
Keyword(s):  
Professional Development ◽  
Palliative Care ◽  
Scoping Review ◽  
Future Research ◽  
Self Awareness ◽  
Personal Factors ◽  
Workplace Issues ◽  
Mitigating Factors ◽  
Hospice And Palliative Care ◽  
Nursing Professional

Burnout in hospice and palliative care nurses is a growing issue, especially in light of the COVID-19 pandemic. However, few studies have focused specifically on burnout in this population. A scoping review was undertaken to identify what is known about burnout among hospice and palliative care nurses, and to unify disparate findings. Analysis of eight articles revealed three overarching categories: personal factors, organizational/workplace factors, and nursing professional development factors. Each category was then divided into three cross-cutting subcategories: contributory and noncontributory factors, mitigating factors, and workplace issues. Recommendations for individuals include self-care as well as self-awareness of intrinsic characteristics that can predispose one to burnout. Within the workplace, leaders are challenged to support evidence-based practice and ongoing education. Role modeling positive communication skills, effective conflict mitigation, responsiveness, promotion of equity, and workplace commitment also help to create a culture of wellness. Nursing professional development may aid in resilience-building, and promotion of self-efficacy, self-confidence, and assertiveness. Although all identified recommendations were derived from the literature, no interventional studies have been conducted to test the effects of suggested interventions. Future research should include interventional studies as well as qualitative research to capture nuanced experiences of burnout in hospice and palliative care nurses.

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.

scholarly journals Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors

2019 ◽  
Vol 33 (6) ◽  
pp. 704-711 ◽  
Author(s):  
Franziska Flaig ◽  
Julia D Lotz ◽  
Kathrin Knochel ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Prenatal Diagnosis ◽  
Parental Support ◽  
Psychosocial Support ◽  
Healthcare Providers ◽  
Care Program ◽  
Future Research ◽  
Counseling Services ◽  
Qualitative Interview Study ◽  
Perinatal Palliative Care

Background: A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%–85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease. Aim: We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived. Design: This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña. Setting/participants: A total of 10 professionals from three different pregnancy counseling services participated in the study. Results: The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved. Conclusion: A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.

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

2018 ◽  
Vol 99 (4) ◽  
pp. 301-316 ◽  
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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