scholarly journals Lived experiences of palliative care among people living with HIV/AIDS: a qualitative study from Bihar, India

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e036179
Author(s):  
Mohit Nair ◽  
Pragya Kumar ◽  
Raman Mahajan ◽  
Amit Harshana ◽  
Kathryn Richardson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Lived Experiences ◽  
People Living With Hiv ◽  
Care Hospital ◽  
Life Care ◽  
Psychosocial Counselling ◽  
Living With Hiv

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.

End of life in hospitalised prisoners: a group comparison of palliative medicine and hospital use

2021 ◽  
pp. bmjspcare-2020-002703
Author(s):  
Stacey Panozzo ◽  
Tamsin Bryan ◽  
David Marco ◽  
Anna Collins ◽  
Carrie Lethborg ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Public Hospital ◽  
Prison Population ◽  
Care Hospital ◽  
Life Care ◽  
Comparator Group ◽  
Population Demographic

BackgroundProviding optimal palliative and end-of-life care for people in prison with advanced progressive disease is a growing challenge. This study aimed to examine hospital and palliative care utilisation for people in prison who are hospitalised during the final 3 months of life and to compare with a disease-matched non-incarcerated patient cohort.MethodsA retrospective cohort study of people in prison who died between 2009 and 2019 in an Australian public hospital that provides tertiary-level healthcare for 18% of Australia’s prison population. Demographic, clinical and service use data were extracted from medical records of eligible patients experiencing incarceration (prison group) and a disease-matched, non-incarcerated patient comparator group (comparator group).ResultsAt the time of death, patients in the prison group were aged a median of 20 years younger than the comparator group (median age 58 vs 78 years, p<0.01). The prison group experienced more than double the mean length of acute care hospital stay at the end of life. A higher proportion of patients in the prison group experienced an intensive care unit episode (22% vs 12%). More than two-thirds (71%) of the prison group patients were seen by palliative care prior to death, similar to the comparator group (p=0.44). Those transferred to the palliative care unit had a shorter length of stay and were admitted later, just prior to death (median 5 vs 8 days).ConclusionsPeople in prison have prolonged acute care public hospital stays and are more likely to experience escalation of care at the end of life. Future opportunity may exist for increased access to formal subacute care settings for people in prison with life-limiting illness to receive optimal palliative and end-of-life care.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

An autoethnography of death and dying in Northern Ireland

2020 ◽  
Vol 28 (4) ◽  
pp. 327-336
Author(s):  
Áine Carroll
Keyword(s):  
Palliative Care ◽  
Northern Ireland ◽  
End Of Life ◽  
Integrated Care ◽  
End Of Life Care ◽  
Lived Experiences ◽  
Internal Conflict ◽  
Life Care ◽  
Care Programme ◽  
Content Type

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.

Nurses' moral distress in end-of-life care: A qualitative study

2020 ◽  
pp. 096973302096485
Author(s):  
Elvira Luana De Brasi ◽  
Noemi Giannetta ◽  
Sara Ercolani ◽  
Elena Lucia Maria Gandini ◽  
Dina Moranda ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Research Question ◽  
Secondary Outcome ◽  
Life Care ◽  
Snowball Sampling ◽  
Care Education

Background: Moral distress is a neglected issue in most palliative education programmes, and research has largely focused on this phenomenon as an occupational problem for nursing staff. Research question: The primary outcome of this study was to explore the causes of morally distressing events, feelings experienced by nurses and coping strategies utilised by a nursing population at an Italian teaching hospital. A secondary outcome of this qualitative study was to analyse whether palliative care or end-of-life care education may reduce morally distressing events. Research design: A hermeneutic-phenomenological qualitative study was performed. Participants and research context: Participants were recruited through snowball sampling. The interviews were conducted and recorded by one interviewer and transcribed verbatim. Ethical considerations: Ethical approval was obtained from the Institutional Review Hospital Board. Findings: Six main themes emerged from the interview analyses: (1) the causes of moral distress; (2) feelings and emotions experienced during morally distressing events; (3) factors that affect the experience of moral distress; (4) strategies for coping with moral distress; (5) recovering from morally distressing events; and (6) end-of-life accompaniment. Varying opinions regarding the usefulness of palliative care education existed. Some nurses stated that participation in end-of-life courses did not help them cope with morally distressing events in the ward, and they believe that existing courses should be strengthened and better structured. Discussion: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients’ last requests. According to our findings, the concept of ‘good’ end-of-life accompaniment was extremely important to our sample for the prevention of morally distressing events. Conclusion: Nurses who work in the onco-haematological setting frequently experience moral distress. Determining the causes of moral distress at early stages is of paramount importance for finding a solution.

scholarly journals Access to Palliative Care for Cancer Patients Living in a Northern and Rural Environment in Ontario, Canada: The Effects of Geographic Region and Rurality on End-of-Life Care in a Population-Based Decedent Cancer Cohort

2019 ◽  
Vol 13 ◽  
pp. 117955491982950 ◽  
Author(s):  
Michael SC Conlon ◽  
Joseph M Caswell ◽  
Stacey A Santi ◽  
Barbara Ballantyne ◽  
Margaret L Meigs ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Acute Care Hospital ◽  
Geographic Region ◽  
Administrative Databases ◽  
Care Hospital ◽  
Life Care ◽  
To Receive

Background: Access to palliative care has been associated with improving quality of life and reducing the use of potentially aggressive end-of-life care. However, many challenges and barriers exist in providing palliative care to residents in northern and rural settings in Ontario, Canada. Aim: The purpose of this study was to examine access to palliative care and associations with the use of end-of-life care in a decedent cohort of northern and southern, rural and urban, residents. Design: Using linked administrative databases, residents were classified into geographic and rural categories. Regression methods were used to define use and associations of palliative and end-of-life care and death in acute care hospital. Setting/Participants: A decedent cancer cohort of Ontario residents (2007-2012). Results: Northern rural residents were less likely to receive palliative care (adjusted odds ratio [OR] = 0.90, 95% confidence interval [CI]: 0.83-0.97). Those not receiving palliative care were more likely to receive potentially aggressive end-of-life care and die in an acute care hospital (adjusted OR = 1.20, 95% CI: 1.02-1.41). Conclusions: Palliative care was significantly associated with reduced use of aggressive end-of-life care; however, disparities exist in rural locations, especially those in the north. Higher usage of emergency department (ED) and hospital resources at end of life in rural locations also reflects differing roles of rural community hospitals compared with urban hospitals. Improving access to palliative care in rural and northern locations is an important care issue and may reduce use of potentially aggressive end-of-life care.

scholarly journals Nurse-led patient-centred intervention to increase written advance directives for outpatients in early-stage palliative care: study protocol for a randomised controlled trial with an embedded explanatory qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e037144
Author(s):  
Katia Iglesias ◽  
Catherine Busnel ◽  
Florian Dufour ◽  
Sophie Pautex ◽  
Laurence Séchaud
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Study Protocol ◽  
End Of Life Care ◽  
Early Stage ◽  
Life Care ◽  
Group A ◽  
Randomised Controlled

IntroductionDiscussing the evolution of life-threatening diseases and end-of-life issues remains difficult for patients, relatives and professionals. Helping people discuss and formalise their preferences in end-of-life care, as planned in the Go Wish intervention, could reduce health-related anxiety in the advance care planning (ACP) and advance directive (AD) process. The aims of this study are (1) to test the effectiveness of the Go Wish intervention among outpatients in early-stage palliative care and (2) to understand the role of defence mechanisms in end-of-life discussions among nurses, patients and relatives.Methods and analysisA mixed-methods study will be performed. A cluster randomised controlled trials with three parallel arms will be conducted with 45 patients with chronic progressive diseases impacting life expectancy in each group: (1) Group A, Go Wish intervention for patients and their relatives; (2) Group A, Go Wish intervention for patients alone and (3) Group B, for patients (with a waiting list), who will receive the standardised information on ADs (usual care). Randomisation will be at the nurse level as each patient is referred to one of the 20 participating nurses (convenience sample of 20 nurses). A qualitative study will be conducted to understand the cognitive and emotional processes and experiences of nurses, patients and relatives confronted with end-of-life discussions. The outcome measurements include the completion of ADs (yes/no), anxiety, quality of communication about end-of-life care, empowerment, quality of life and attitudes towards ADs.Ethics and disseminationThe study protocol has been approved by the Human Research Ethics Committee of the Canton of Geneva, Switzerland (no. 2019–00922). The findings will be disseminated to practice (nurses, patients and relatives), to national and international scientific conferences, and peer-reviewed journals covering nursing science, psychology and medicine.Trial registration numberNCT04065685.

scholarly journals Emotional labour in palliative and end-of-life care communication: A qualitative study with generalist palliative care providers

2019 ◽  
Vol 102 (3) ◽  
pp. 494-502 ◽  
Author(s):  
Lisa Jane Brighton ◽  
Lucy Ellen Selman ◽  
Katherine Bristowe ◽  
Beth Edwards ◽  
Jonathan Koffman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Emotional Labour ◽  
Generalist Palliative Care

scholarly journals Acute-Care Hospital Use Patterns Near End-of-Life for Cancer Patients Who Die in Hospital in Canada

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 109s-109s
Author(s):  
J. Tung ◽  
K. Decaria ◽  
D. Dudgeon ◽  
E. Green ◽  
R. Shaw Moxam ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Acute Care ◽  
End Of Life Care ◽  
Acute Care Hospital ◽  
Care Hospital ◽  
Life Care

Background: Acute-care hospitals have a role in managing the needs of people with cancer when they are at the end-of-life; however, overutilization of hospital care at the end-of-life results in poorer quality of life and can worsen the patient's experience. Early integration of comprehensive palliative care can greatly reduce unplanned visits to the emergency department, reduce avoidable admissions to hospital, shorten hospital stays, and increase the number of home deaths as well as improve the quality of life of patients with advanced cancer. Aim: To describe the current landscape of acute-care hospital utilization near the end-of-life across Canada and indirectly examine access to palliative care in cancer patients who die in hospital. Methods: Data were obtained from the Canadian Institute for Health Information. The analysis was restricted to adults aged 18+ who died in an acute care hospital in 2014/15 and 2015/16 for nine provinces and three territories. The Discharge Abstract Database was used to extract acute-care cancer death abstracts. Data on intensive care unit (ICU) admissions includes only facilities that report ICU data. Results: Acute care utilization at end-of-life remains commonplace. In Canada (excluding Québec), 43% (48,987) of deaths from cancer occurred in acute-care hospitals, with 70% admitted through the emergency department (ED). In the last six months of life, cancer patients dying in hospital had a median cumulative length of stay ranging from 17 to 25 days, depending on the province. Between 18.1% and 32.8% of patients experienced two or more admissions to the hospital in the last month of life. The proportion of cancer patients admitted to the ICU in the last 14 days of life ranged from 6.4% to 15.1%. Patient demographics (age, sex, place of residence) and clinical factors (cancer type) were often predictors of hospital utilization at end-of-life and likely point to inequities in access to palliative and end-of-life care. Conclusion: Despite previous patient surveys indicating that patients would prefer to receive care and spend their finals days at home or in a hospice, there appears to be overuse of and overreliance on acute care hospital services near the end-of-life in Canada. The high rates of hospital deaths and admissions through the ED at the end-of-life for cancer patients may signal a lack of planning for impeding death and inadequate availability of or access to community- and home-based palliative and end-of-life care services. Acute care hospitals may have a role in managing the health care needs of people affected by cancer; however, end-of-life care should be an option in other settings that align with patient preferences. Standards or practice guidelines to identify, assess and refer patients to palliative care services earlier in their cancer journey should be developed and implemented to ensure optimal quality of life.

Measuring palliative and end-of-life care for cancer patients who die in hospital in Canada.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 58-58
Author(s):  
Kristen Decaria ◽  
Deborah Dudgeon ◽  
Esther Green ◽  
Raquel Shaw Moxam ◽  
Rami Rahal ◽  
...  
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Acute Care ◽  
End Of Life Care ◽  
Acute Care Hospital ◽  
Hospital Utilization ◽  
Care Hospital ◽  
Life Care

58 Background: High acute hospital utilization rates near end-of-life can signal that community-based palliative care may not be suiting patients’ needs. Early integration of comprehensive palliative care can greatly reduce unplanned visits to the emergency department, reduce multiple admissions to hospital, shorten hospital stays, and increase the number of home deaths as well as improving the quality of life of advanced cancer patients. This analysis reports on indicators that describe the current landscape of acute-care hospital utilization at end-of-life and indirectly examines access to palliative care in patients who died of cancer in a hospital. Methods: Data were provided by the Canadian Institute for Health Information. The Discharge Abstract Database was used to extract acute-care cancer death abstracts. Data on ICU admissions include only facilities that report ICU data. Emergency department visit data were obtained from the National Ambulatory Care Reporting System. The analysis was restricted to adults aged 18+ who died in an acute-care hospital in fiscal years 2014/15 and 2015/16 for nine provinces and three territories. Results: A total of 48,987 (43%) cancer patient deaths occurred in an acute-care hospitals, with 70% admitted through the emergency department. Preliminary analysis revealed interprovincial variation in the cumulative length of stay in hospital 6 months prior to death from a median stay of 17 to 25 days. Some variation was also seen in the proportion of patients admitted to hospital two or more times in the last month of life (ranging from 18% to 33%), and the proportion of cancer patients admitted to ICU in the last 14 days of life (ranging from 15% to 6%). Patient demographics (age, sex, place of residence) and clinical factors (cancer type) were often predictors of hospital utilization at end-of-life. Conclusions: This study provides information on the current landscape of acute-care hospital utilization by cancer patients at end-of-life across Canada and identifies interprovincial variations in management of end-of-life care. An area of focus for the Palliative and End-of-Life National Network continue to be developing nationally agreed upon system-wide palliative care indicators.

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