scholarly journals Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

2019 ◽  
Vol 37 (5) ◽  
pp. 385-398
Author(s):  
Ping Ying Choo ◽  
Geraldine Tan-Ho ◽  
Oindrila Dutta ◽  
Paul Victor Patinadan ◽  
Andy Hau Yan Ho
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Mixed Methods Research ◽  
Family Care ◽  
Well Being ◽  
Future Research ◽  
Life Care ◽  
Wide Range

Background: Preserving terminally ill patients’ dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. Aim: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. Design: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. Data Sources: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. Results: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient–family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. Conclusions: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients’ existential suffering as well as caregivers’ burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

scholarly journals The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures

2017 ◽  
Vol 31 (4) ◽  
pp. 346-355 ◽  
Author(s):  
Christine Rowland ◽  
Barbara Hanratty ◽  
Mark Pilling ◽  
Bernard van den Berg ◽  
Gunn Grande
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
End Of Life Care ◽  
Family Care ◽  
Well Being ◽  
Background Information ◽  
Life Care ◽  
Data Set ◽  
Care Givers ◽  
Care Giving

Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

Family Caregivers’ Pain Management in End-of-Life Care: A Systematic Review

2016 ◽  
Vol 34 (5) ◽  
pp. 470-485 ◽  
Author(s):  
Nai-Ching Chi ◽  
George Demiris
Keyword(s):  
Systematic Review ◽  
Pain Management ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Experimental Studies ◽  
Care Team ◽  
Cochrane Library ◽  
Future Research ◽  
Life Care

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers’ experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers’ experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers’ engagement in pain management and communication with the hospice care team about pain control; family caregivers’ knowledge, skills, and self-efficacy in pain management; and family caregivers’ concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low; it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers’ needs and barriers to pain management based on larger and more diverse patient and caregiver samples.

scholarly journals Impact of the COVID-19 pandemic on end of life care delivery in care homes: A mixed method systematic review

2021 ◽  
pp. 026921632110298
Author(s):  
Adam Spacey ◽  
Sam Porter ◽  
Michele Board ◽  
Janet Scammell
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Service Providers ◽  
Care Delivery ◽  
Care Homes ◽  
Current Evidence ◽  
Future Research ◽  
Life Care ◽  
The Impact

Background: Current evidence suggests that COVID-19 is having a negative impact on the delivery of end of life care in care homes around the world. There is a need to collate current evidence to provide a comprehensive overview to assess extent of the problem. Aim: To describe and evaluate the impact of the COVID-19 pandemic on end of life care delivery in care homes. Design: Systematic review and narrative synthesis of studies reporting qualitative and quantitative data. Data sources: The databases MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and March 2021. Results: Nine studies were included. For care home staff, challenges included significant increases in responsibility and exposure to death, both of which have taken an emotional toll. Results indicate that staff tended not to be offered adequate emotional support or afforded the time to grieve. For those receiving end of life care, results indicate that the end of life care that they tended to receive, especially in the form of advance planning, was disrupted by the pandemic. Conclusion: The effect of the pandemic has been to exacerbate existing problems in the provision of end of life care in care homes for both service providers and users, making that which was previously opaque starkly visible. Future research is needed to explore the effects of the pandemic and its management on those receiving end of life care in care homes and their significant others.

La percezione degli operatori sanitari sulle cure palliative come mezzo per promuovere la qualità di vita dei pazienti e prevenire le richieste eutanasich / Healthcare workers’ perception of palliative care as a means to foster patients' quality of life and to prevent euthanasia requests*

2019 ◽  
Vol 68 (1) ◽  
pp. 25-39
Author(s):  
Konstantinos Mastorakis ◽  
Massimo Continisio ◽  
Maria Francesca Siotto ◽  
Luca Navarini ◽  
Franco Carnevale ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Well Being ◽  
Life Care ◽  
National Monitoring ◽  
Spiritual Well Being ◽  
Hospice Workers

Nel 2010 è stata emanata in Italia la Legge 38, che punta a migliorare formazione e tirocini nel campo delle cure palliative, sebbene al momento non esista un sistema nazionale di monitoraggio di tali pratiche su scala nazionale. A livello internazionale l’eutanasia si è andata sempre più configurando come trattamento possibile fra le cure di fine vita, mentre in Italia resta formalmente illegale. Esistono alcuni studi italiani sulle prospettive dei pazienti rispetto alle cure palliative e all’eutanasia, ma la letteratura relativa alla percezione degli operatori sanitari palliativisti è esigua. Scopo del presente studio è l’indagine di tali percezioni, sia rispetto alla qualità delle cure palliative sia al potenziale ruolo dell’eutanasia nelle cure di fine vita in Italia. La ricerca è stata condotta in tre hospice romani. È stato sviluppato e somministrato un questionario con 75 item graduati secondo la scala Likert a 5 punti, utilizzando come metodi di analisi l’analisi fattoriale e, per la parte statistica, SPSS. Il questionario è stato completato da 56 soggetti. Nella percezione dei partecipanti, i fattori rilevanti per la qualità delle cure palliative sono risultati sette: sofferenza fisica e sociale, benessere psicologico e spirituale, benessere emozionale, partecipazione alle decisioni, compassione, speranza ed empatia. Inoltre, le cure palliative ridurrebbero il desiderio di morte e di eutanasia. I fattori più importanti che emergono dal lavoro sono la sofferenza o il benessere sociali, fisici e psicologici. Gli operatori sanitari coinvolti nello studio non sostengono l’ipotesi dell’eutanasia e anzi ritengono che le cure palliative riducano il desiderio di ottenerla. ---------- In 2010, the State Law no 38 was enacted in Italy, seeking to improve palliative care education and training. There is currently no national monitoring system for palliative care practices in Italy. Euthanasia has become increasingly available internationally as an alternative amidst end-of-life care options, although in Italy this is not the case, and it is formally illegal. Although there are a few studies regarding patients’ perspectives regarding the issue of palliative care and euthanasia in Italy, there is limited literature focused on the perspectives of palliative care health care professionals. The purpose of this study is to explore the perspectives of hospice workers regarding both the quality of palliative care and the potential role of euthanasia in end-of-life care in Italy. This research was conducted with hospice clinicians in three hospices in Rome. A 75 item 5-point Likert scale questionnaire was developed and administered. Factor analysis was used, and descriptive statistics were performed using SPSS. Fifty-six respondents completed the questionnaire. From participants’ perspectives, there are seven significant factors explaining the quality of palliative care in Italy: social and physical suffering, psychological and spiritual well-being, emotional well-being, participation in decision making, compassion, hope, and empathy in care, while reducing patients’ desire for death and euthanasia. The most important of these factors regard social, physical and psychological suffering and well-being. Hospice workers in this study did not support euthanasia and felt that palliative care decreases the patient’s desire for euthanasia. * The manuscript was presented as an abstract in an International Congress on Palliative Care.

Pediatric End-of-Life Care in Rural America: A Systematic Review

2021 ◽  
pp. 104990912110642
Author(s):  
Whitney Stone ◽  
Jessica Keim-Malpass ◽  
Melanie J. Cozad ◽  
Mary Lou Clark Fornehed ◽  
Lisa C. Lindley
Keyword(s):  
Systematic Review ◽  
Rural Communities ◽  
End Of Life ◽  
Rural Areas ◽  
End Of Life Care ◽  
Pediatric Care ◽  
Future Research ◽  
Rural Children ◽  
Life Care ◽  
Rural America

Background: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. Objective: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. Methods: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. Results: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. Conclusions: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

scholarly journals Dignity Therapy for End-of-Life Care Patients: A Literature Review

2021 ◽  
Vol 8 ◽  
pp. 237437352199695
Author(s):  
Pearl Ed Cuevas ◽  
Patricia Davidson ◽  
Joylyn Mejilla ◽  
Tamar Rodney
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Cultural Context ◽  
Age Groups ◽  
Empirical Support ◽  
Family Care ◽  
Life Care ◽  
Dignity Therapy ◽  
Meta Analyses

Dignity therapy as an intervention has been used for individuals receiving palliative care. The goal of this review is to explore the current state of empirical support to its use for end-of-life care patients. Data sources were articles extracted from search engines PubMed, Cochrane, Embase, CINAHL, Web of Science, and PsycINFO. The years searched were 2009 to 2019 (10-year period). The review process was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Results revealed the feasibility, acceptability, satisfaction, and effectiveness of dignity therapy for life-limiting cases/conditions of patients in different age groups. It also highlighted the importance of the therapy setting and the need to apply this in the cultural context. The meaning of dignity therapy to patients and their family care members also emerged. Findings showed most patients displayed the need to leave a legacy and from this their core values surfaced. In conclusion, this review highlighted the contribution of dignity therapy to the holistic care of patients who hope to leave a legacy. The therapy was also relevant to decrease the anxiety; depression, and burden of family members throughout the palliative care period of their loved ones.

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

2021 ◽  
Author(s):  
Prasanna Ananth ◽  
Sophia Mun ◽  
Noora Reffat ◽  
Soo Jung Kang ◽  
Sarah Pitafi ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Care Quality ◽  
Life Care ◽  
Children With Cancer ◽  
Symptom Screening ◽  
Palliative Care Consultation ◽  
Patient Reported

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

scholarly journals Music therapy for end-of-life care: An updated systematic review

2016 ◽  
Vol 30 (9) ◽  
pp. 877-883 ◽  
Author(s):  
Tracey McConnell ◽  
David Scott ◽  
Sam Porter
Keyword(s):  
Systematic Review ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care
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