An autoethnography of death and dying in Northern Ireland

2020 ◽  
Vol 28 (4) ◽  
pp. 327-336
Author(s):  
Áine Carroll

PurposeIn Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”. The purpose of this autoethnography is to share the author’s lived experience so that it might be used to improve services.Design/methodology/approachAutoethnography is employed as the research method. The author describes her experience of caring for father over the last six months of his life. She explores the tensions between the different players involved in the care of her father and the family and the internal conflict that developed within her as daughter, carer, care coordinator and doctor. Using multiple data sources, selected data entries were explored through reflexive, dyadic interviews to explore the experience and meaning in each story.FindingsThe author found that autoethnography was a powerful tool to give voice to the carer experience. Narration can be a powerful tool for capturing the authentic lived experiences of individuals and families and is a tool seldom utilised in integrated care. This account provides an insight into the author's expectations of integrated palliative care, as a designer and implementer and now an academic in integrated care and concludes with some reflections about the gap between policy and practice in palliative care services in Northern Ireland.Originality/valueAutoethnography can be a powerful tool for capturing the authentic lived experiences of individuals and families and is an essential component of the quadruple aim.

2019 ◽  
Vol 27 (2) ◽  
pp. 111-122 ◽  
Author(s):  
Marina Raco ◽  
Teresa Burdett ◽  
Vanessa Heaslip

Purpose Due to an international ageing population, global health organisations have recognised the challenges arising from fragmented interaction between health and social sectors in the end of life care. The purpose of this paper is to explore the existing literature on integrative palliative care services for older people. Design/methodology/approach An integrative review was conducted using the Preferred Reporting Items for Systematic reviews and Meta-Analyses. Papers included in the review focused upon integrated care within palliative care systems (January 2007–2017). A certain number of papers were excluded when the review focused on individuals younger than 65, not written in English and not being focused on integrated palliative care. Findings Nine studies fitted the inclusion criteria and three themes were identified: person-centred care, co-ordination of care, and education and training. The review identifies that integrated palliative care requires co-ordinated techniques that focus upon the quality of life, individual needs and awareness of vulnerability rather than fixation on inevitable mortality. Research limitations/implications The emerging presence of the need for integrated palliative care requires further research in order to develop coherent models of integrated palliative care which can be incorporated into practice. Originality/value This review identified themes relevant to the emerging issues in the global health sector of end of life care. The literature suggests that the optimised use of an integrated care approach to a palliative model of care is required and in need of further investigation.


2017 ◽  
Vol 30 (2) ◽  
pp. 184-193 ◽  
Author(s):  
Karen Gillett ◽  
Liz Reed ◽  
Liz Bryan

Purpose The purpose of this paper is to describe the delivery of facilitated action learning sets as an integral component of a multidisciplinary end-of-life care course. Design/methodology/approach The educational intervention described in this paper is delivered by specialist palliative care practitioners to those working with dying patients and their families in non-specialist settings. The programme consists of two components: the first taught/experience-based component takes place in a hospice. The second integral component involves action learning sets which are facilitated by specialist palliative care staff over a six-month period. This paper reports the challenges, learning and benefits of using action learning sets to improve end-of-life care. Findings Action learning sets provide support which enables staff to implement changes to end-of-life care. Participants in the successful action learning sets were motivated to change practice and identified themselves as change agents. Management support was vital to allow participants the authority to implement changes to practice. Practical implications Facilitators need to gain participant and management commitment to the action learning process before the programme begins if they are to be successful in achieving changes to end-of-life care. Originality/value Hospices and other health care organisations work in partnership to deliver this programme, and this paper demonstrates how action learning sets can increase mutual understanding and communication between specialist and non-specialist end-of-life care settings.


2019 ◽  
Vol 19 (4) ◽  
pp. 512
Author(s):  
Ascensión Doñate-Martínez ◽  
Jorge Garcés ◽  
Soledad Giménez ◽  
Bernardo Valdivieso ◽  
Elisa Soriano ◽  
...  

2014 ◽  
Vol 10 (3) ◽  
pp. 172-197 ◽  
Author(s):  
Tina Maschi ◽  
Suzanne Marmo ◽  
Junghee Han

Purpose – The growing numbers of terminally ill and dying in prison has high economic and moral costs as global correctional systems and the society at large. However, to date little is known about the extent to which palliative and end-of-life care is infused within global prison health care systems. The purpose of this paper is to fill a gap in the literature by reviewing and critically appraising the methods and major findings of the international peer-reviewed literature on palliative and end-of-life care in prison, identify the common elements of promising palliative and end-of-life services in prison, and what factors facilitate or create barrier to implementation. Design/methodology/approach – A content analysis was conducted of the existing peer-reviewed literature on palliative and end-of-life care in prison. English-language articles were located through a comprehensive search of peer-reviewed journals, such as Academic Search Premier Literature databases using differing combinations of key word search terms, “prison,” “palliative care,” and “end-of-life care.” A total of 49 studies published between 1991 and 2013 met criteria for sample inclusion. Deductive and inductive analysis techniques were used to generate frequency counts and common themes related to the methods and major findings. Findings – The majority (n=39) of studies were published between 2001-2013 in the USA (n=40) and the UK (n=7). Most were about US prison hospice programs (n=16) or barriers to providing palliative and end of life care in prisons (n=10). The results of the inductive analysis identified common elements of promising practices, which included the use of peer volunteers, multi-disciplinary teams, staff training, and partnerships with community hospices. Obstacles identified for infusing palliative and end-of-life care in prison included ethical dilemmas based on custody vs care, mistrust between staff and prisoners, safety concerns, concern over prisoners’ potential misuse of pain medication, and institutional, staff, and public apathy toward terminally ill prisoners and their human rights to health in the form of compassionate and palliative care, including the use of compassionate release laws. Research limitations/implications – Implications for future research that foster human rights and public awareness of the economic and moral costs of housing the sick and dying in prisons. More research is needed to document human rights violations as well as best practices and evidence-based practices in palliative and end-of-life care in prisons. Future studies should incorporate data from the terminally ill in prison, peer supports, and family members. Future studies also should employ more rigorous research designs to evaluate human rights violations, staff and public attitudes, laws and policies, and best practices. Quantitative studies that use experimental designs, longitudinal data, and multiple informants are needed. Qualitative data would allow for thick descriptions of key stakeholders experiences, especially of the facilitators and barriers for implementing policy reform efforts and palliative care in prisons. Practical implications – This review provides a foundation on which to build on about what is known thus far about the human right to health, especially parole policy reform and infusing palliative and end-of-life care for the terminally ill and dying in prisons. This information can be used to develop or improve a new generation research, practice, policy, and advocacy efforts for that target terminally ill and dying in prison and their families and communities. Social implications – There are significant social implications to this review. From a human rights perspective, the right to freedom from torture and cruel and unusual punishment is a fundamental human right along with prisoners’ rights for an appropriate level of health care. These rights should be guaranteed regardless of the nature of their crime or whether they are in a prison placement. The information provided in this review can be used to educate and possible transform individual's and society's views toward the terminally ill and dying who are involved in the criminal justice system. Originality/value – This paper extends the extant literature by using both quantitative and qualitative analysis methods to organize, summarize, and critically analyze the international literature on palliative care and end of life care in prison. This review is designed to increase awareness among the international community of the pain and suffering of the terminally ill in prison and the facilitators and barriers to providing them compassionate care while in custody.


BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e036179
Author(s):  
Mohit Nair ◽  
Pragya Kumar ◽  
Raman Mahajan ◽  
Amit Harshana ◽  
Kathryn Richardson ◽  
...  

ObjectivesThis study aimed to assess the lived experiences of palliative care among critically unwell people living with HIV/AIDS (PLHA), caregivers and relatives of deceased patients. It also aimed to understand the broader palliative care context in Bihar.DesignThis was an exploratory, qualitative study which used thematic analysis of semistructured, in-depth interviews as well as a focus group discussion.SettingAll interviews took place in a secondary care hospital in Patna, Bihar which provides holistic care to critically unwell PLHA.ParticipantsWe purposively selected 29 participants: 10 critically unwell PLHA, 5 caregivers of hospitalised patients, 7 relatives of deceased patients who were treated in the secondary care hospital and 7 key informants from community-based organisations.ResultsCritically ill PLHA emphasised the need for psychosocial counselling and opportunities for social interaction in the ward, as well as a preference for components of home-based palliative care, even though they were unfamiliar with actual terms such as ‘palliative care’ and ‘end-of-life care’. Critically unwell PLHA generally expressed preference for separate, private inpatient areas for end-of-life care. Relatives of deceased patients stated that witnessing patients’ deaths caused trauma for other PLHA. Caregivers and relatives of deceased patients felt there was inadequate time and space for grieving in the hospital. While both critically ill PLHA and relatives wished that poor prognosis be transparently disclosed to family members, many felt it should not be disclosed to the dying patients themselves.ConclusionsDespite expected high inpatient fatality rates, PLHA in Bihar lack access to palliative care services. PLHA receiving end-of-life care in hospitals should have a separate dedicated area, with adequate psychosocial counselling and activities to prevent social isolation. Healthcare providers should make concerted efforts to inquire, understand and adapt their messaging on prognosis and end-of-life care based on patients’ preferences.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 752-752
Author(s):  
Joan Carpenter ◽  
Winifred Scott ◽  
Mary Ersek ◽  
Cari Levy ◽  
Jennifer Cohen ◽  
...  

Abstract This study examined the alignment between Veterans’ end-of-life care and a Life-Sustaining Treatment (LST) goal “to be comfortable.” It includes Veterans with VA inpatient or community living center stays overlapping July 2018--January 2019, with a LST template documented by January 31, 2019, and who died by April 30, 2019 (N = 18,163). Using VA and Medicare data, we found 80% of decedents with a comfort care goal received hospice and 57% a palliative care consult (compared to 57% and 46%, respectively, of decedents without a comfort care goal). Using multivariate logistic regression, a comfort care goal was associated with significantly lower odds of EOL hospital or ICU use. In the last 30 days of life, Veterans with a comfort care goal had 43% lower odds (AOR 0.57; 95% CI: 0.51, 0.64) of hospitalization and 46% lower odds of ICU use (AOR 0.54; 95% CI: 0.48, 0.61).


Author(s):  
Kate L. M. Hinrichs ◽  
Cindy B. Woolverton ◽  
Jordana L. Meyerson

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.


2021 ◽  
pp. 026921632110020
Author(s):  
Kieran L Quinn ◽  
Amy T Hsu ◽  
Christopher Meaney ◽  
Danial Qureshi ◽  
Peter Tanuseputro ◽  
...  

Background: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. Aim: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. Settings and participants: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person’s hospitalization in which they died. Results: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. Conclusions: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.


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