Family Issues in End-of-life Decision Making and End-of-life Care

2002 ◽  
Vol 46 (2) ◽  
pp. 284-298 ◽  
Author(s):  
WILLIAM E. HALEY ◽  
REBECCA S. ALLEN ◽  
SANDRA REYNOLDS ◽  
HONGBIN CHEN ◽  
ALLISON BURTON ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Issues ◽  
End Of Life Decision ◽  
Life Decision

scholarly journals A framework for resolving disagreement during end of life care in the critical care unit

2010 ◽  
Vol 33 (4) ◽  
pp. 240 ◽  
Author(s):  
Karen Choong ◽  
Cynthia Cupido ◽  
Erin Nelson ◽  
Donald M Arnold ◽  
Karen Burns ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Critical Care ◽  
Conflict Resolution ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
End Of Life Decision ◽  
Life Decision

Background: End-of-life decisions regarding the administration, withdrawal or withholding of life-sustaining therapy in the critical care setting can be challenging. Disagreements between health care providers and family members occur, especially when families believe strongly in preserving life, and physicians are resistant to providing medically “futile” care. Such disagreements can cause tension and moral distress among families and clinicians. Purpose: To outline the roles and responsibilities of physicians, substitute decision makers, and the judicial system when decisions must be made on behalf of incapable persons, and to provide a framework for conflict resolution during end-of-life decision-making for physicians practicing in Canada. Source: We used a case-based example to illustrate our objectives. We employed a comprehensive approach to understanding end-of-life decision making that included: 1) a search for relevant literature; 2) a review of provincial college policies; 3) a review of provincial legislation on consent; 4) a consultation with two bioethicists and 5) a consultation with two legal experts in health law. Principal Findings: In Canada, laws about substitute decision-making for health care are primarily provincial or territorial. Thus, laws and policies from professional regulatory bodies on end-of-life care vary across the country. We tabulated the provincial college policies on end-of-life care and the provincial legislation on consent and advance directives, and constructed a 10-step approach to conflict resolution. Conclusion: Knowledge of underlying ethical principles, understanding of professional duties, and adoption of a process for mediation and conflict resolution are essential to ensuring that physicians and institutions act responsibly in maintaining a patients’ best interests in the context of family-centred care.

End-of-life care in the intensive care unit: a challenge for nurses

2001 ◽  
Vol 10 (4) ◽  
pp. 230-237 ◽  
Author(s):  
PA Miller ◽  
S Forbes ◽  
DK Boyle
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Practice ◽  
Care Planning ◽  
Life Care ◽  
Cultural Issues ◽  
End Of Life Decision ◽  
Life Decision

Results from several research studies combined with increasing public tensions surrounding physician-assisted suicide have fueled a growing awareness of the inadequacies of end-of-life care. Investigators also suggest that intensive care unit nurses have a limited role in end-of-life decision making and care planning. This article explores cultural issues influencing end-of-life care in intensive care units, explores factors surrounding the limited involvement of critical care nurses in end-of-life decision making and care planning, and offers recommendations for changing nursing practice. Because improving end-of-life care will require cultural changes, an understanding of the cultural issues involved is needed. Recommendations for changing nursing practice include a model of end-of-life care that incorporates the goals of both cure and comfort care, as well as a shared decision-making process. Nurses are essential to improving end-of-life care in today's intensive care units.

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.

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

2015 ◽  
Vol 24 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Natalie Pattison ◽  
Geraldine O’Gara ◽  
Timothy Wigmore
Keyword(s):  
Decision Making ◽  
Critical Care ◽  
Medical Treatment ◽  
End Of Life ◽  
End Of Life Care ◽  
Free Text ◽  
Life Care ◽  
End Of Life Decision ◽  
Life Decision ◽  
Critical Care Outreach

Background Little research has examined the involvement of critical care outreach teams in end-of-life decision making. Objective To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. Methods A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. Results Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. Conclusion A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.

End-of-Life Decision Making in the Seriously Ill Hospitalized Patient: An Organizing Framework and Results of a Preliminary Study

2000 ◽  
Vol 16 (1_suppl) ◽  
pp. S31-S39 ◽  
Author(s):  
Daren K. Heyland ◽  
Joan Tranmer ◽  
Deb Feldman-Stewart
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Information Exchange ◽  
End Of Life Care ◽  
Decision Making Process ◽  
Life Care ◽  
Preliminary Study ◽  
End Of Life Decision ◽  
Seriously Ill ◽  
Life Decision

Recent studies of patient/family satisfaction with end-of-life care suggest that improvements in communication and decision making are likely to have the greatest impact on improving the quality of end-of-life care. The apparent failure of recent studies specifically designed to improve decision making strongly suggest that there are powerful determinants of the decision making process that are not completely understood. In this paper, we present an organizing framework that describes the decision making process and breaks it into three analytic steps: information exchange, deliberation, and making the decision. In addition, we report the results of a preliminary study of end-of-life decision making that incorporates aspects of this organizing framework. Thirty-seven seriously ill hospitalized patients were interviewed. The majority wanted to share decisional responsibility with physicians. We demonstrated the feasibility of measuring certain aspects of the decision making process in such patients. By providing and using a framework related to end-of-life decision making, we hope to better understand the complex interaction and processes between dying patients, caregivers, and physicians.

scholarly journals “It was one of those complicated cases”: health practitioners’ perspectives and practices of providing end-of-life care for people with profound intellectual and multiple disability

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Hille Voss ◽  
April Loxton ◽  
Julie Anderson ◽  
Joanne Watson
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Multiple Disability ◽  
Health And Social Care ◽  
Health Practitioners ◽  
End Of Life Decision ◽  
Life Decision

Abstract Background Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners’ perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. Methods Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. Results Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. Conclusions Due to negative perceptions of a person with PIMD’s decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability.

scholarly journals Value Awareness: A New Goal for End-of-life Decision Making

2019 ◽  
Vol 4 (1) ◽  
pp. 238146831881752 ◽  
Author(s):  
Baruch Fischhoff ◽  
Amber E. Barnato
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Decision Aids ◽  
Relevant Information ◽  
Life Care ◽  
Policy Tool ◽  
End Of Life Decision ◽  
Life Decision

The principal policy tool for respecting the preferences of patients facing serious illnesses that can prompt decisions regarding end-of-life care is the advance directive (AD) for health care. AD policies, decision aids for facilitating ADs, and clinical processes for interpreting ADs all treat patients as rational actors who will make appropriate choices, if provided relevant information. We review barriers to following this model, leading us to propose replacing the goal of rational choice with that of value awareness, enabling patients (and, where appropriate, their surrogates) to be as rational as they can and want to be when making these fateful choices. We propose approaches, and supporting research, suited to individuals’ cognitive, affective, and social circumstances, resources, and desires.

Bereaved families’ experiences of end-of-life decision making for general medicine patients

2021 ◽  
pp. bmjspcare-2020-002743
Author(s):  
Felicity Moon ◽  
Christine Mooney ◽  
Fiona McDermott ◽  
Alistair Miller ◽  
Peter Poon
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Patient Preferences ◽  
End Of Life Care ◽  
General Medicine ◽  
Medical Decision ◽  
Life Care ◽  
Hospitalised Patients ◽  
End Of Life Decision ◽  
Life Decision

BackgroundFamily involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and conflict. There is a need to understand how best to support families involved in decisions regarding the transition from active to palliative treatment in hospital settings.AimTo explore bereaved families’ experiences of end-of-life decision making for general medicine patients.DesignA qualitative exploratory study framed by social constructionism using semistructured interviews and thematic analysis.Setting and participantsThe general medicine units of one large public hospital in Melbourne, Australia. We recruited 28 bereaved family members of patients who had received end-of-life care.FindingsPatients and families depended on physicians to explain clinical complexity and treatment beneficence; however, trust in medical judgement was mediated by participant’s own interpretations of clinical progress. Families sought to be respected as advocates and experienced distress if physicians disregarded their perspectives and insight concerning patient preferences. Ideally, families supported patients to express their preferences to physicians. Otherwise, families contextualised treatment decisions through their knowledge of patient’s values and quality of life. Families often felt burdened by or excluded from medical decision making and experienced distress and confusion regarding their rights to request or refuse treatment.ConclusionOur study highlights how families contribute to decision making to ensure end-of-life care treatments reflect patient preferences. Physicians can ease families’ distress around treatment withdrawal by providing a meaningful explanation of complex clinical issues, clarifying decision-making roles and acknowledge families’ desire to protect and advocate for their loved one.

scholarly journals Teaching End-of-Life Decision Making to Undergraduate Nursing Students

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 327-328
Author(s):  
Sherry Greenberg ◽  
Nancy Innella ◽  
Bryan Pilkington
Keyword(s):  
Decision Making ◽  
Nursing Students ◽  
End Of Life ◽  
End Of Life Care ◽  
Specific Response ◽  
Life Care ◽  
Undergraduate Nursing Students ◽  
Undergraduate Nursing ◽  
End Of Life Decision ◽  
Life Decision

Abstract This presentation highlights the development, implementation, and results of an educational session with undergraduate nursing students about end-of-life decision making. The purpose of this qualitative thematic analysis study was to explore student perspectives of end-of-life decision making following an education session. The aims were to 1) develop themes from student feedback on end-of-life decision making and 2) refine educational strategies to teach end-of-life decision making to nursing students. The study was conducted with 72 junior level baccalaureate nursing students enrolled in an undergraduate gerontological nursing course. An interactive lecture was developed, following short philosophical ethics readings, which brought the students up to date on the history of end-of-life discussions, key cases, and different frameworks to approach a cluster of ethical issues associated with end-of-life care. A debate pedagogical model was employed as an engaging activity in which students directly applied recently learned concepts. In the debate activity, students were divided into two teams. Each team was assigned a position, which was a specific response to the case question: Should practitioners assist in their patient’s committing suicide? Should practitioners offer medical aid in dying? Each team conferred, presented their position, responded to the arguments or reasons from the opposing position. The session ended with a debrief by the course instructors. In the first semester, 31 nursing students completed four open-ended questions following the class. Results included increased student confidence discussing end-of-life issues and identification of two concepts commonly referred to in end-of-life care discussions and in bioethics, autonomy and dignity.

Sign in / Sign up

Export Citation Format

Share Document