scholarly journals The second patient? Family members of cancer patients and their role in end-of-life decision making

2018 ◽  
Vol 17 (1) ◽  
Author(s):  
Katsiaryna Laryionava ◽  
Timo A. Pfeil ◽  
Mareike Dietrich ◽  
Stella Reiter-Theil ◽  
Wolfgang Hiddemann ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Cancer Patients ◽  
Family Members ◽  
End Of Life Decision ◽  
Life Decision

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

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.

scholarly journals 重審生命倫理學視域下身體話語的地位——以臨終決策為線索

2015 ◽  
Vol 13 (1) ◽  
pp. 83-94
Author(s):  
Jue WANG
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Personal Identity ◽  
Ethical Issues ◽  
Family Members ◽  
The Body ◽  
Confucian Ethics ◽  
Individual Autonomy ◽  
End Of Life Decision ◽  
Life Decision

LANGUAGE NOTE | Document text in Chinese; abstract also in English.對於生命終極的關懷，臨終決策是現代生命倫理學不可忽視的一個重大話題。本文試圖從身體的角度論證當代生命倫理學話語由於失落了身體而陷入一場深刻的危機。具體而言，本文將通過對臨終決策困境的分析展示危機的根源，論證身體經驗及相關倫理關係是生命倫理學不可或缺的基礎。作者認為，只有作為身體倫理，生命倫理學才能充分實現它的學術追問和學科理念。身心二元論只是一個虛構，身體性存在才是人格同一性的真正基礎。因此，建設生命倫理學不只是擁抱某些抽象的自主原則，或是某些精緻的道德主體的體系，更關鍵的問題是要回答“我們希望成為何等樣的人，希望將來生活在怎樣的世界中”。How is the body articulated in language and discourse during end-of-life decision making? How do individuals and their family members represent and define the relationships between person, body, and self? Recently, studies have been conducted on the decision-making process in the field of end-of-life care. Most researchers focus on patients’ determination (vis-à-vis physicians’ beneficence), which gives rise to a plethora of issues, such as patients’ self-identity, self-continuity, relationships, freedom of choice,and rights.In this paper, end-of-life decision making is considered from the perspective of the relationship between the body and one’s personal identity. It is argued that the current bioethical discourse on individual autonomy and patients’ rights is inadequate to address the ethical issues relating to end-of-life decision making. Instead of purely theoretically conceptualizing the sovereignty of the patient over his or her body, the author explores the issue in relation to the phenomenology of lived-body experience as described by the American bioethicist Margret P. Battin. The rights available to the patient are not the only significant issue during end-of-life decision-making; aspects of the patient’s physicality are also relevant. Discourse on representations of the body and embodied action/autonomy aids our understanding of end-of-life choices. Finally, these body-related issues are linked with the Confucian understanding of what a person is. According to Confucian ethics, personal identity should not be viewed as an abstract “thing”; instead, it is defined by a person’s relationships with others, especially family members, in his/her most vulnerable moments.DOWNLOAD HISTORY | This article has been downloaded 138 times in Digital Commons before migrating into this platform.

Differences in end-of-life decision making among black and white ambulatory cancer patients

1996 ◽  
Vol 11 (11) ◽  
pp. 651-656 ◽  
Author(s):  
Elizabeth D. McKinley ◽  
Joanne M. Garrett ◽  
Arthur T. Evans ◽  
Marion Danis
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Cancer Patients ◽  
Black And White ◽  
End Of Life Decision ◽  
Life Decision

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.

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.

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