The Concerns and Experience of Decision-Making Regarding Do-Not-Resuscitate Orders Among Caregivers in Hospice Palliative Care

2020 ◽  
Vol 38 (2) ◽  
pp. 123-129
Author(s):  
Ching-Chun Chiang ◽  
Shu-Chuan Chang ◽  
Sheng-Yu Fan
Keyword(s):  
Decision Making ◽  
Health Care Professionals ◽  
Medical Staff ◽  
Hospice Care ◽  
Family Members ◽  
Emotional Reactions ◽  
Do Not Resuscitate ◽  
Structured Interviews ◽  
End Of Life Decision ◽  
Hospice Palliative Care

A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Four themes were identified: (1) Patients: The caregivers respected the patients’ willingness and did not want to make them feel like “giving up.” (2) Caregivers’ self: They did not want to intensify the patients’ suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members’ opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals’ supports to deal with the concerns from patients and other family members as well as their emotional reactions.

scholarly journals The decision-making process in families of terminal ICU patients

Psico-USF ◽  
2019 ◽  
Vol 24 (3) ◽  
pp. 437-448
Author(s):  
Mayla Cosmo Monteiro ◽  
Andrea Seixas Magalhães ◽  
Terezinha Féres-Carneiro ◽  
Cristina Ribeiro Dantas
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Medical Staff ◽  
Family Members ◽  
Decision Making Process ◽  
Qualitative Descriptive ◽  
End Of Life Decision ◽  
The Relationship ◽  
Life Decision

Abstract The objective of this research is to investigate family members’ perceptions as to the end-of-life decision-making process in an ICU. The authors conducted a qualitative descriptive study in which they interviewed six family members of critically ill patients admitted to the ICU of a private hospital. Five categories of analysis emerged from the examination of the material. This study will discuss two of those categories: the decision-making process and the relationship with the medical staff. The results indicate that family members were satisfied with communication with the medical staff, an important aspect for the decision-making process. Within this context, the shared model, prioritization of palliative care and identification of futile treatments prevailed, aimed at ensuring the patient’s comfort and dignity at the end of life. The results also reveal the need for integration of palliative care in ICUs, particularly in end-of-life situations.

scholarly journals The Experience of Do-Not-Resuscitate Orders and End-of-Life Care Discussions among Physicians

2020 ◽  
Vol 17 (18) ◽  
pp. 6869
Author(s):  
Sheng-Yu Fan ◽  
Jyh-Gang Hsieh
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Family Members ◽  
Multiple Roles ◽  
Best Interests ◽  
Do Not Resuscitate ◽  
Time Urgency ◽  
Care Surgery ◽  
Eol Care ◽  
Analyze Data

Physicians have a responsibility to discuss do-not-resuscitate (DNR) decisions and end-of-life (EOL) care with patients and family members. The aim of this study was to explore the DNR and EOL care discussion experience among physicians in Taiwan. A qualitative study was conducted with 16 physicians recruited from the departments of hospice care, surgery, internal medicine, emergency, and the intensive care unit. The interview guidelines included their DNR experience and process and EOL care discussions, as well as their concerns, difficulties, or worries in discussions. Thematic analysis was used to analyze data. Four themes were identified. First, family members had multiple roles in the decision process. Second, the characteristics of the units, including time urgency and relationships with patients and family members, influenced physicians’ work. Third, the process included preparation, exploration, information delivery, barrier solution, and execution. Fourth, physicians shared reflections on their ability and the conflicts between law, medical professionals, and the best interests of patients. Physicians must consider not only patients’ but also family members’ opinions and surmount several barriers in decision-making. They also experienced negative and positive impacts from these discussions.

scholarly journals P.137 A qualitative study of families’ experiences with medical assistance in dying (MAiD) in Nova Scotia

2021 ◽  
Vol 48 (s3) ◽  
pp. S59-S59
Author(s):  
E Leck ◽  
C Jackson-Tarlton ◽  
E Crumley ◽  
G Gubitz
Keyword(s):  
Decision Making ◽  
Nova Scotia ◽  
Family Members ◽  
Sense Of Control ◽  
Medical Assistance ◽  
Structured Interviews ◽  
Eligibility Criteria ◽  
Medical Assistance In Dying ◽  
Life Journey ◽  
Iterative Coding

Background: MAiD became legal in Canada in 2015, with Bill C-14 delineating eligibility criteria and access. Previous research found families are intimately involved with decision-making, with conflicting perspectives on how they cope. Our study sought to learn about the experiences of family members, and determine what supports might be beneficial to improve MAiD delivery and aftercare. Methods: We conducted hour-long semi-structured interviews with 20 family members of individuals who had MAiD. Interviews took place by telephone or virtually via MS Teams, and transcripts were analyzed using an iterative coding process and thematic analysis. Results: Prominent themes emphasized the importance of respecting autonomy, decision-making, and allowing people to regain a sense of control, particularly with so much taken away. The death itself was described as peaceful. Interviewees were overwhelmingly filled with relief and gratitude for being able to respect the individual’s wishes. Interviewees spoke of importance of support for themselves, and the desire to build a network of individuals with similar experiences; to share their stories, grieve together, and support the next generation. Conclusions: These results will help improve MAiD delivery and aftercare in Nova Scotia, by informing, developing and enabling access to resources for individuals who accompany a family member on their end-of-life journey.

scholarly journals Reporting of “dialysis adequacy” as an outcome in randomised trials conducted in adults on haemodialysis: a systematic review

2018 ◽  
Author(s):  
Sanne Steyaert ◽  
Els Holvoet ◽  
Evi Nagler ◽  
Simon Malfait ◽  
Wim Van Biesen
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Outcome Measures ◽  
Health Care Professionals ◽  
Controlled Trials ◽  
Cochrane Central Register ◽  
Structured Interviews ◽  
Dialysis Adequacy ◽  
Registration Number ◽  
Randomised Controlled

ABSTRACTBackgroundClinical trials are most informative for evidence-based decision-making when they consistently measure and report outcomes of relevance to stakeholders, especially patients, clinicians, and policy makers. However, sometimes terminology used is interpreted differently by different stakeholders, which might lead to confusion during shared decision making. The construct dialysis adequacy is frequently used, suggesting it is an important outcome both for health care professionals as for patients.ObjectiveTo assess the scope and consistency of the construct dialysis adequacy as reported in randomised controlled trials in hemodialysis, and evaluate whether these align to the insights and understanding of this construct by patients.MethodsTo assess scope and consistency of dialysis adequacy by professionals, we performed a systematic review searching the Cochrane Central Register of Controlled Trials (CENTRAL) up to July 2017. We identified all randomised controlled trails (RCT) including patients on hemodialysis and reporting dialysis adequacy, adequacy or adequacy of dialysis and extracted and classified all reported outcomes. To explore interpretation and meaning of the construct of adequacy by patients, we conducted 10 semi-structured interviews with HD patients using thematic analysis. Belgian registration number B670201731001.FindingsFrom the 31 included trials, we extracted and classified 98 outcome measures defined by the authors as adequacy of dialysis, of which 94 (95%) were biochemical, 3 (3%) non-biochemical surrogate and 2 (2%) patient-relevant. The three most commonly reported measures were all biochemical. None of the studies defined adequacy of dialysis as a patient relevant outcome such as survival or quality of life.Patients had a substantially different understanding of the construct dialysis adequacy than the biochemical interpretation reported in the literature. Being alive, time spent while being on dialysis, fatigue and friendliness of staff were the most prominent themes that patients linked to the construct of dialysis adequacy.Conclusion Adequacy of dialysis as reported in the literature refers to biochemical outcome measures, most of which are not related with patient relevant outcomes. For patients, adequate dialysis is a dialysis that enables them to spend as much quality time in their life as possible.

The enactment stage of end-of-life decision-making for children

2018 ◽  
Vol 17 (2) ◽  
pp. 165-171
Author(s):  
Jane Elizabeth Sullivan ◽  
Lynn Heather Gillam ◽  
Paul Terence Monagle
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Medical Intervention ◽  
Process Time ◽  
Decision Making Process ◽  
Structured Interviews ◽  
Bereaved Parents ◽  
Process Factors ◽  
End Of Life Decision ◽  
Life Decision

AbstractObjectivesTypically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents’ experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.MethodsA qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.ResultsTwenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child’s condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people’s actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.Significance of resultsA novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician’s support for parents as they care for their child.

scholarly journals The Influence of Emotion on Preservice Teachers as they Learn to Assess Student Learning Assess Student Learning

2021 ◽  
Vol 46 (4) ◽  
pp. 16-34
Author(s):  
Frances Edwards ◽  
Keyword(s):  
Decision Making ◽  
Preservice Teachers ◽  
Qualitative Study ◽  
Student Learning ◽  
Emotional Reactions ◽  
Emotional Engagement ◽  
Structured Interviews

This paper explores the experience of emotion for eight preservice teachers as they learn to assess their students while concurrently being assessed. This qualitative study utilised semi-structured interviews and assessment-related artefacts. Findings indicate that emotional engagement influenced preservice teachers’ assessment decision making. The teachers also experienced emotional reactions as in turn they were assessed. This paper argues for the need of preservice teachers to be cognisant of the influence of emotion on themselves and their work, to allow them to better rationalise their assessment decision making and reflect on their practice.

scholarly journals THE EXAMINATION OF DETERMINANTS AND BARRIERS TO END-OF-LIFE DECISION MAKING AND PLANNING

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S236-S237
Author(s):  
Brittany E Gaines ◽  
Debra J Dobbs
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Rural Areas ◽  
Hospice Care ◽  
Service Providers ◽  
Advance Care ◽  
End Of Life Decision ◽  
The Impact

Abstract As individuals are living longer, in many cases with chronic diseases, there is an increased focus on end-of-life (EOL) planning and decision making. This includes a broad spectrum of choices including advance care planning (ACP) and turning to palliative care or hospice care. Although there has been an increase in palliative and hospice care enrollment and ACP engagement over the past decade, participation remains low for certain subgroups of the population. The purpose of this symposium is to offer insight into reasons for these varying rates of engagement by exploring determinants and barriers to EOL decision making and planning and by examining caregiver knowledge of EOL decision making and planning from the service provider perspective. The first three studies examine various types of influences in EOL decision making and planning. Inoue and colleagues explore factors associated with the length of hospice stay, and Gaines and colleagues examine the impact of environmental characteristics in ACP. Ornstein and colleagues use Denmark registry data to assess the role of kinlessness at the time of death in EOL decision making and healthcare utilization. The final presentation by Noh and colleagues examines how service providers in rural areas perceive community residents’ knowledge of ACP and palliative care. The discussion following these presentations will compare findings across different forms of EOL decision making and planning, consider the impact of the varying methodological approaches used, and highlight implications of these works for potential interventions and policies related to EOL decision making and planning.

End-of-life decision-making in pediatric oncology

2015 ◽  
pp. 894-908
Author(s):  
Pamela S. Hinds ◽  
Linda L. Oakes ◽  
Wayne L. Furman
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Pediatric Oncology ◽  
Current Literature ◽  
Health Care Professionals ◽  
Healthcare Professionals ◽  
End Of Life Decision ◽  
Life Decision ◽  
Use Of Health Care

The purposes of this chapter are to offer a review of the current literature (both clinical and research-based) on end-of-life decision-making in pediatrics, with a special emphasis on pediatric oncology, and to offer guidelines for the use of health-care professionals in assisting children, adolescents, their parents, and other healthcare professionals in making such decisions.

Finnish Nurses’ Views on End-of-Life Discussions and a Comparison with Physicians’ Views

2004 ◽  
Vol 11 (2) ◽  
pp. 165-178 ◽  
Author(s):  
Hanna-Mari Hildén ◽  
Pekka Louhiala ◽  
Marja-Liisa Honkasalo ◽  
Jorma Palo
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Active Treatment ◽  
Positive Attitude ◽  
Living Wills ◽  
Do Not Resuscitate ◽  
Almost All ◽  
End Of Life Decision ◽  
Life Decision ◽  
Dnr Orders

This study investigated Finnish nurses’ experiences and views on end-of-life decision making and compared them with physicians’ views. For this purpose, a questionnaire was sent to 800 nurses, of which 51% responded. Most of the nurses had a positive attitude towards and respect for living wills, more often than physicians. Most also believed that a will had an effect on decision making. Almost all of the nurses considered it their responsibility to talk to physicians about respecting living wills. Do-not-resuscitate (DNR) orders were often interpreted to imply partial or complete palliative (symptom-orientated) care, which may cause confusion. Half of the nurses reported that a DNR decision was discussed always or often with a patient who was able to communicate; physicians were more positive in this respect. Surprisingly, many nurses (44%) stated that active treatment continued too long. Two-thirds thought that their opinions were taken into account sufficiently, even though only half believed that, in general, they had some impact.

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit

2020 ◽  
pp. 136345932094647
Author(s):  
Julia I Bandini
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Family Experiences ◽  
End Of Life Decision ◽  
Life Decision

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members’ experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians’ compassionate caring for both patients and families through the “little things” or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient’s death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient’s death. Most importantly, the notion that ACP as a social process may be a “gift” to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

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