scholarly journals Family Members’ Informal Roles in End-of-Life Decision Making in Adult Intensive Care Units

2012 ◽  
Vol 21 (1) ◽  
pp. 43-51 ◽  
Author(s):  
Jill R. Quinn ◽  
Madeline Schmitt ◽  
Judith Gedney Baggs ◽  
Sally A. Norton ◽  
Mary T. Dombeck ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Intensive Care Units ◽  
Family Members ◽  
The Family ◽  
Decision Making Processes ◽  
End Of Life Decision ◽  
Life Decision

Background To support the process of effective family decision making, it is important to recognize and understand informal roles that various family members may play in the end-of-life decision-making process. Objective To describe some informal roles consistently enacted by family members involved in the process of end-of-life decision making in intensive care units. Methods Ethnographic study. Data were collected via participant observation with field notes and semistructured interviews on 4 intensive care units in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical, a surgical, a burn and trauma, and a cardiovascular intensive care unit. Participants Health care clinicians, patients, and family members. Results Informal roles for family members consistently observed were primary caregiver, primary decision maker, family spokesperson, out-of-towner, patient’s wishes expert, protector, vulnerable member, and health care expert. The identified informal roles were part of families’ decision-making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision making within the family system and between the family and health care domains. Conclusions These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these informal roles of family members can help clinicians recognize and understand the functions of these roles in families’ decision making at the end of life and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.

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.

Intensive care nurses’ involvement in the end-of-life process – perspectives of relatives

2012 ◽  
Vol 19 (5) ◽  
pp. 666-676 ◽  
Author(s):  
Ranveig Lind ◽  
Geir F Lorem ◽  
Per Nortvedt ◽  
Olav Hevrøy
Keyword(s):  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Decision Making Process ◽  
Intensive Care Nurses ◽  
Decision Making Processes ◽  
Nurses Role ◽  
End Of Life Decision ◽  
Life Decision

In this article, we report findings from a qualitative study that explored how the relatives of intensive care unit patients experienced the nurses’ role and relationship with them in the end-of-life decision-making processes. In all, 27 relatives of 21 deceased patients were interviewed about their experiences in this challenging ethical issue. The findings reveal that despite bedside experiences of care, compassion and comfort, the nurses were perceived as vague and evasive in their communication, and the relatives missed a long-term perspective in the dialogue. Few experienced that nurses participated in meetings with doctors and relatives. The ethical consequences imply increased loneliness and uncertainty, and the experience that the relatives themselves have the responsibility of obtaining information and understanding their role in the decision-making process. The relatives therefore felt that the nurses could have been more involved in the process.

Ethical Problems in End-of-Life Decisions for Elderly Norwegians

2007 ◽  
Vol 14 (2) ◽  
pp. 242-257 ◽  
Author(s):  
Marjorie A Schaffer
Keyword(s):  
Health Care ◽  
Decision Making ◽  
End Of Life ◽  
Elderly People ◽  
Health Professionals ◽  
Family Members ◽  
End Of Life Decisions ◽  
Ethical Problems ◽  
End Of Life Decision ◽  
Life Decision

Norwegian health professionals, elderly people and family members experience ethical problems involving end-of-life decision making for elders in the context of the values of Norwegian society. This study used ethical inquiry and qualitative methodology to conduct and analyze interviews carried out with 25 health professionals, six elderly people and five family members about the ethical problems they encountered in end-of-life decision making in Norway. All three participant groups experienced ethical problems involving the adequacy of health care for elderly Norwegians. Older people were concerned about being a burden to their families at the end of their life. However, health professionals wished to protect families from the burden of difficult decisions regarding health care for elderly parents at the end of life. Strategies are suggested for dialogue about end-of-life decisions and the integration of palliative care approaches into health care services for frail elderly people.

scholarly journals At the end: A vignette-based investigation of strategies for managing end-of-life decisions in the intensive care unit

2020 ◽  
pp. 175114372095472
Author(s):  
Tom W Reader ◽  
Ria Dayal ◽  
Stephen J Brett
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Family Members ◽  
Decision Makers ◽  
End Of Life Decisions ◽  
Life Decisions ◽  
End Of Life Decision ◽  
Life Decision

Background Decision-making on end-of-life is an inevitable, yet highly complex, aspect of intensive care decision-making. End-of-life decisions can be challenging both in terms of clinical judgement and social interaction with families, and these two processes often become intertwined. This is especially apparent at times when clinicians are required to seek the views of surrogate decision makers (i.e., family members) when considering palliative care. Methods Using a vignette-based interview methodology, we explored how interactions with family members influence end-of-life decisions by intensive care unit clinicians ( n = 24), and identified strategies for reaching consensus with families during this highly emotional phase of care. Results We found that the enactment of end-of-life decisions were reported as being affected by a form of loss aversion, whereby concerns over the consequences of not reaching a consensus with families weighed heavily in the minds of clinicians. Fear of conflict with families tended to arise from anticipated unrealistic family expectations of care, family normalization of patient incapacity, and belief systems that prohibit end-of-life decision-making. Conclusions To support decision makers in reaching consensus, various strategies for effective, coherent, and targeted communication (e.g., on patient deterioration and limits of clinical treatment) were suggested as ways to effectively consult with families on end-of-life decision-making.

scholarly journals KINLESSNESS AT THE TIME OF DEATH: IMPLICATIONS FOR END-OF-LIFE DECISION-MAKING

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S237-S237
Author(s):  
Katherine Ornstein ◽  
Christine Mair ◽  
Marie Skov Kristensen ◽  
Melissa Aldridge ◽  
Lau Caspar Thygesen
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Older Women ◽  
Family Members ◽  
Population Based ◽  
Time Of Death ◽  
The Family ◽  
End Of Life Decision ◽  
Living Adult ◽  
Life Decision

Abstract As our society continues to age and family size decreases, there is increasing concern about lack of caregiver availability. This may be especially important in the context of end-of-life decision-making. The goal of this study was to characterize the size and composition of the family network of adults at the time of death using a population-based register study. All adults in Denmark who died of natural causes 2009-2016 (n= 401,000) were linked to living adult family members (parents, children, spouses, sibling, great/grandchildren). While the majority of decedents were linked to multiple family members (median =5), 21.6% had no identified living family at the time of their death. Kinlessness was especially common among older women and those with dementia. In addition to supporting caregiving families at the end-of-life, we must also recognize that there are many kinless individuals who may benefit from early formal care planning services to facilitate end-of-life decision-making.

scholarly journals End-of-life decision making for cancer patients in an intensive care unit

2015 ◽  
Vol 3 (S1) ◽  
Author(s):  
M Tavares ◽  
I Neves ◽  
F Coelho ◽  
O Afonso ◽  
A Martins ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Decision ◽  
Life Decision
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