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.

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 Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Assisted Living ◽  
End Of Life Care ◽  
Life Care ◽  
Term Care ◽  
Care Partners ◽  
Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

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.

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.

Enabling first and second year doctors to negotiate ethical challenges in end-of-life care: a qualitative study

2021 ◽  
pp. bmjspcare-2020-002672
Author(s):  
Sinead Donnelly ◽  
Simon Walker
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Well Being ◽  
First Year ◽  
Life Care ◽  
Ethical Challenges ◽  
Life And Death ◽  
Medicine Physician ◽  
Second Year

ObjectiveTo understand the unique ethical and professional challenges confronting first and second year doctors in caring for people who are dying, and to learn what factors help or hinder them in managing these.Method6 first year and 7 second year doctors were interviewed one-to-one by a senior palliative medicine physician (SD), quarterly over 12 months, using a semistructured approach. Thematic analysis was conducted with the findings, following the general inductive approach.Results21 hours of recorded interviews were analysed by SD, and ethical and professional issues were identified. These were discussed with SW, and sorted into seven broad categories. The participants’ accounts of the issues convey a strong ethical sensitivity, developed through their undergraduate training. A recurring challenge for them through their first 12–24 months of work as doctors is being responsible for the decisions, knowing that what they do can have life and death consequences. The participants frequently describe senior doctors as an important source of support, and the lack of such support as leading to moral distress and demoralisation. Another important factor is having opportunity to discuss and reflect on the decisions after they are made. Where such reflection had been facilitated properly, participants displayed considerable growth in their ability to manage ethical challenges.ConclusionSenior support and opportunities for reflection need to be recognised as key factors in enabling first and second year to respond appropriately to ethical challenges in end-of-life care, and in sustaining their well-being through this critical stage of their professional life.

Physician Influence on Variation in Receipt of Aggressive End-of-Life Care Among Women Dying of Ovarian Cancer

2021 ◽  
Author(s):  
Megan A. Mullins ◽  
Shitanshu Uppal ◽  
Julie J. Ruterbusch ◽  
Michele L. Cote ◽  
Philippa Clarke ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Unit Stay ◽  
End Of Life Care ◽  
Invasive Procedure ◽  
Life Care ◽  
Data Set ◽  
Physician Practices

PURPOSE: End-of-life care for women with ovarian cancer is persistently aggressive, but factors associated with overuse are not well understood. We evaluated physician-level variation in receipt of aggressive end-of-life care and examined physician-level factors contributing to this variation in the SEER-Medicare data set. METHODS: Medicare beneficiaries with ovarian cancer who died between 2000 and 2016 were included if they were diagnosed after age 66 years, had complete Medicare coverage between diagnosis and death, and had outpatient physician evaluation and management for their ovarian cancer. Using multilevel logistic regression, we examined physician variation in no hospice enrollment, late hospice enrollment (≤ 3 days), > 1 emergency department visit, an intensive care unit stay, terminal hospitalization, > 1 hospitalization, receiving a life-extending or invasive procedure, and chemotherapy (in the last 2 weeks). RESULTS: In this sample of 6,288 women, 51% of women received at least one form of aggressive end-of-life care. Most common were no hospice enrollment (28.9%), an intensive care unit stay (18.6%), and receipt of an invasive procedure (20.7%). For not enrolling in hospice, 9.9% of variation was accounted for by physician clustering ( P < .01). Chemotherapy had the highest physician variation (12.4%), with no meaningful portion of the variation explained by physician specialty, volume, region, or patient characteristics. CONCLUSION: In this study, a meaningful amount of variation in aggressive end-of-life care among women dying of ovarian cancer was at the physician level, suggesting that efforts to improve the quality of this care should include interventions aimed at physician practices and decision making in end-of-life care.

scholarly journals Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper

2015 ◽  
Vol 9 (1) ◽  
pp. e14-e14 ◽  
Author(s):  
Stephanie Sivell ◽  
Hayley Prout ◽  
Noreen Hopewell-Kelly ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Qualitative Research ◽  
End Of Life ◽  
Home Environment ◽  
End Of Life Care ◽  
Terminally Ill ◽  
Well Being ◽  
Research Centre ◽  
Life Care ◽  
Home Setting ◽  
Terminally Ill Patients

ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.

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