Shared Death Experiences: A Little-Known Type of End-of-Life Phenomena Reported by Caregivers and Loved Ones

2021 ◽  
pp. 104990912110000
Author(s):  
Keyword(s):  
End Of Life ◽  
Anecdotal Evidence ◽  
Structured Interviews ◽  
Dying Patients ◽  
Therapeutic Value ◽  
Death Experience ◽  
Life Phenomena ◽  
Bereavement Care ◽  
Emotional Effects

Anecdotal evidence suggests that some loved ones and caregivers of dying patients undergo a type of end-of-life phenomena known as a shared death experience or SDE, whereby one feels that one has participated in a dying person’s transition to a post-mortem existence. Anecdotal evidence also suggests that SDEs can have a range of profound psycho-spiritual-emotional effects. However, SDEs have been all but ignored in hospice and palliative medicine, leaving professional bereavement services uninformed about SDEs and leaving individuals who report SDEs without adequate professional support to process and integrate them. To better understand the features and effects of SDEs, an inductive content analysis was performed on written accounts and transcripts of semi-structured interviews with 107 persons reporting a total of 164 SDEs. Analysis revealed 4 distinct though non-exclusive modes of an SDE: remotely sensing a death, witnessing unusual phenomena, feelings of accompanying the dying, and feelings of assisting the dying. Analysis also revealed 3 major domains of SDE effects: changes in belief, the reconciliation of grief, and the perception of continued relational bonds with the deceased. Interviews highlighted both difficulties and therapeutic value in people openly discussing their experiences with health professionals. We believe that integration of information about SDEs offers an opportunity to add to the breadth and quality of psychological, spiritual, and bereavement care.

Developing a national quality register in end-of-life care: The Swedish experience

2011 ◽  
Vol 26 (4) ◽  
pp. 313-321 ◽  
Author(s):  
Staffan Lundström ◽  
Bertil Axelsson ◽  
Per-Anders Heedman ◽  
Greger Fransson ◽  
Carl Johan Fürst
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Nursing Facilities ◽  
Life Care ◽  
Quality Register ◽  
Dying Patients ◽  
National Quality ◽  
Hospital Wards ◽  
National Quality Register

Background: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. Aim: To establish, test and manage a national quality register for end-of-life care. Design: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. Setting: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. Results: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. Conclusions: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.

Novice RNs' Lived Experience Providing End-of-Life Care: A Hermeneutic Phenomenology

2019 ◽  
Vol 23 (4) ◽  
pp. 302-311
Author(s):  
Ruby Z. Chu ◽  
Donna Taliaferro
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
End Of Life Care ◽  
Professional Growth ◽  
Life Care ◽  
Compassionate Care ◽  
Structured Interviews ◽  
Hermeneutic Circle ◽  
Dying Patients ◽  
Colaizzi's Method

This hermeneutic study explored the lived experience of novice RNs who care for dying patients in acute care settings to understand to meaning of their experience. Fourteen novice RNs participated in individual telephone semi-structured interviews. Transcripts were analyzed using Colaizzi's method. Results obtained were based on the hermeneutic circle. The findings identified 3 major themes: (a) obstacles in end-of-life care; (b) personal response; and (c) coping strategies and 12 subthemes. Despite the obstacles in care, compassionate care was provided that resulted in professional growth.

Exploring the therapeutic value of hope in palliative nursing

2010 ◽  
Vol 8 (3) ◽  
pp. 353-358 ◽  
Author(s):  
Karimah Alidina ◽  
Ildico Tettero
Keyword(s):  
Cancer Patients ◽  
Nursing Practice ◽  
Multidimensional Model ◽  
Advanced Cancer Patients ◽  
Life Threatening Illness ◽  
Dying Patients ◽  
Therapeutic Value ◽  
Life Threatening ◽  
Essential Resource

AbstractHope is a multi-dimensional concept that is integral to a dying person's needs. It is an essential resource that assists individuals with a life-threatening illness to cope during times of intense physical and psychological distress. The objective of this article is to explore and analyze the therapeutic value of hope. The phenomenon of hope will be explored through the analysis and application of Dufault and Martocchio's Multidimensional Model of Hope (MMH) to a clinical scenario. Factors determining hope in cancer patients as well as interventions that can foster hope in dying patients will be identified. Discussion includes examination of literature gaps, relevance to nursing practice, and practical strategies to engender hope and thereby enhance quality of life (QOL) in advanced cancer patients.

scholarly journals End of Life: A New Life Course Stage for Older Adults and Their Families?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 647-647
Author(s):  
Deborah Carr
Keyword(s):  
Older Adults ◽  
Life Course ◽  
End Of Life ◽  
Research Policy ◽  
Life Experiences ◽  
Policy And Practice ◽  
Dying Patients ◽  
Legal Context ◽  
Uncontrollable Event

Abstract Over the past two centuries, death has transitioned from an unexpected and uncontrollable event to a protracted process that requires individuals and families to make difficult decisions regarding where and under what conditions one will die. This new life course stage, spanning the period from diagnosis to death, provides older adults and their families an opportunity to prepare for difficult medical decisions, yet also may be a time marked by suffering and conflict. In this paper, I provide an overview of the technological, demographic, and legal context of end-of-life in the 21st century, and its implications for the quality of life for dying patients and their families. I underscore that historical shifts have created a context in which the quality of one’s end-of-life experiences and autonomy are stratified by race and socioeconomic status, creating challenges for older adults and their loved ones. I highlight implications for research, policy, and practice.

A Pilot Study Evaluating the Effectiveness of a Training Module Designed to Improve Hospice Palliative Care Volunteers’ Ability to Deal With Unusual End-of-Life Phenomena

2020 ◽  
pp. 003022282093522
Author(s):  
Stephen Claxton-Oldfield ◽  
Robert Hicks ◽  
Jane Claxton-Oldfield
Keyword(s):  
Palliative Care ◽  
Pilot Study ◽  
End Of Life ◽  
Life Experiences ◽  
Training Module ◽  
Community Based ◽  
Paired Samples ◽  
Dying Patients ◽  
Life Phenomena ◽  
Hospice Palliative Care

The need for training to help healthcare professionals and hospice palliative care volunteers deal with unusual experiences at or around the end of a person’s life is an oft-repeated theme in the scientific literature. A pilot study was conducted to examine the effectiveness of a training module designed to improve volunteers’ ability to recognize, understand, and respond to unusual end-of-life phenomena (EOLP) in their work with dying patients and their families. Twenty-four volunteers from two community-based hospice palliative care programs completed the 25-item Coping with Unusual End-of-Life Experiences Scale (CUEES) prior to and immediately after attending a lecture and PowerPoint training module. A series of paired samples t tests revealed significant pre- and post-training differences on 14 items, suggesting that volunteers felt more knowledgeable about EOLP, better prepared to deal with EOLP, and more comfortable talking about EOLP with others following the training. The need for additional data is discussed.

scholarly journals Impact of Palliative Medicine Involvement on End-of-Life Services for Patients With Cancer With In-Hospital Deaths

2017 ◽  
Vol 13 (9) ◽  
pp. e749-e759 ◽  
Author(s):  
Alison Wiesenthal ◽  
Debra A. Goldman ◽  
Deborah Korenstein
Keyword(s):  
End Of Life ◽  
Solid Tumor ◽  
Diagnostic Testing ◽  
Cancer Center ◽  
Do Not Resuscitate ◽  
Patients With Cancer ◽  
Dying Patients ◽  
Hospital Deaths ◽  
Do Not Resuscitate Orders

Purpose: Palliative care (PC) has been shown to improve the quality of care and resource utilization for inpatients. We examined the relationship between PC consultation before and during final admission and patterns of care for dying patients at our tertiary cancer center. Methods: We retrospectively reviewed adult patients with solid tumor cancer with a length of stay ≥ 3 days who died in hospital between December 2012 and November 2014. We recorded services, including laboratory testing, imaging, blood products, medications, diet orders, do not resuscitate orders, and consultations, delivered within 3 days of death. We assessed the differences among services delivered to patients with outpatient PC, inpatient PC only, and no PC involvement. Results: Of 695 patients, 21% received outpatient PC, 46% received inpatient PC only, and 33% received no PC. During their final admission, 11.2% of patients received radiation therapy, and 12.5% received tumor-directed therapy, with no differences on the basis PC involvement ( P = .09 to .17). In the last 3 days of life, imaging tests occurred in 50.1%; patients with outpatient or inpatient-only PC underwent fewer studies (43.5% and 47.3%) than did those with no PC involvement (58.1%; P = .048). Do not resuscitate orders were in place within the 6 months before final admission at a greater rate for patients with outpatient PC (22%) than for patients with inpatient-only PC (8%) or those with no PC involvement (12%; P = .002). Conclusion: In this retrospective cohort of patients with solid tumor dying in hospital, few patients received cancer-directed therapies at the end of life. Involvement of PC was associated with a decrease in diagnostic testing and other services not clearly promoting comfort as patients approached death.

Building organizational compassion among teams delivering end-of-life care in the intensive care unit: The 3 Wishes Project

2020 ◽  
Vol 34 (9) ◽  
pp. 1263-1273 ◽  
Author(s):  
Meredith Vanstone ◽  
Marina Sadik ◽  
Orla Smith ◽  
Thanh H Neville ◽  
Allana LeBlanc ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Life Care ◽  
Dying Patients ◽  
Qualitative Descriptive

Background: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians. Aim: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit. Design: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework. Setting/participants: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders. Results: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians. Conclusions: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.

Working at the Intersection of Palliative End-of-Life and Mental Health Care: Provider Perspectives

2020 ◽  
pp. 082585972095136
Author(s):  
Tanya Park ◽  
Kathy Hegadoren ◽  
Bernadette Workun
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Mental Illness ◽  
Mental Health Care ◽  
End Of Life ◽  
Structured Interviews ◽  
Provider Perspectives ◽  
Mental Health Care Provider ◽  
Mental Health Challenges

Objective: Palliative, end-of-life care (PEOLC) providers are poorly resourced in addressing the needs of patients with mental health challenges, and the dying experiences of this cohort—particularly those with a comorbid, chronic and persistent mental illness (CPMI)—are poorly documented. We sought to explore the experiences of PEOLC providers with regard to caring for patients with mental health challenges, and gather insights into ways of improving accessibility and quality of PEOLC for these patients. Method: Twenty providers of PEOLC, from different disciplines, took part in semi structured interviews. The data were coded and analyzed using a reflexive, inductive-deductive process of thematic analysis. Results: The most prominent issues pertained to assessment of patients and differential diagnosis of CPMI, and preparedness of caregivers to deliver mental health interventions, given the isolation of palliative care from other agencies. Among the assets mentioned, informal relationships with frontline caregivers were seen as the main support structure, rather than the formal policies and procedures of the practice settings. Strategies to improve mental health care in PEOLC centered on holistic roles and interventions benefiting the entire palliative population, illustrating the participants saw little point in compartmentalizing mental illness, whether diagnosed or not. Significance of Results: Continuity of care and personal advocacy can significantly improve quality of life for end-of-life patients with mental health challenges, but bureaucracy and disciplinary siloing tend to isolate these patients and their caregivers. Improved interdisciplinary connectivity and innovative, hybridized roles encompassing palliation and psychiatry are 2 strategies to address this disconnect, as well as enhanced training in core mental health care competencies for PEOLC providers.

scholarly journals Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

2021 ◽  
pp. 026921632199473
Author(s):  
Pamela Durepos ◽  
Noori Akhtar-Danesh ◽  
Jenny Ploeg ◽  
Tamara Sussman ◽  
Sharon Kaasalainen
Keyword(s):  
Mixed Methods ◽  
End Of Life ◽  
Family Caregivers ◽  
Psychometric Testing ◽  
Delphi Survey ◽  
Validity And Reliability ◽  
Structured Interviews ◽  
Term Care ◽  
Palliative Approach

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled ‘Caring Ahead’ to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the ‘Caring Ahead’ preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers’ feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

scholarly journals One chance to get it right: improving clinical handovers for better symptom control at the end of life

2021 ◽  
Vol 10 (3) ◽  
pp. e001436
Author(s):  
Gabriel Goldraij ◽  
Vilma Adriana Tripodoro ◽  
Melisa Aloisio ◽  
Sandra Analía Castro ◽  
Christina Gerlach ◽  
...  
Keyword(s):  
End Of Life ◽  
Symptom Control ◽  
Educational Process ◽  
Patient Comfort ◽  
Family Carers ◽  
Previous Night ◽  
Dying Patients ◽  
Pdsa Cycle ◽  
Out Of Hours Care

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives’ perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina.By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care.Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March–May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method.During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night.Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one.The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to ‘Did doctors and nurses do enough for the patient to be comfortable during the night?’ increased from 75% to 100% between the first and the second QI cycle.In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients.

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