scholarly journals Reframing Patient’s Autonomy in End-of-Life Care Decision-Making: Constructions of Agency in Interviews with Physicians

2021 ◽  
Vol 17 (2) ◽  
pp. 70-87
Author(s):  
André Buscariolli ◽  
Kari Mikko Vesala
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Patient Autonomy ◽  
Research Literature ◽  
Life Care ◽  
Structured Interviews ◽  
Positive Attitudes ◽  
Patient’S Autonomy ◽  
Questionnaire Studies ◽  
Care Decision

In the research literature, critical viewpoints question the idea of patient autonomy as a robust basis for approaching end-of-life treatments. Yet physicians express distinctly positive attitudes towards patient autonomy and advance directives in questionnaire studies. In this article, we unravel taken-for-granted assumptions about the agency that physicians use when evaluating patient autonomy in end-of-life care. We use Goffmanian frame analysis to analyze semi-structured interviews with eight Finnish physicians. Instead of measuring standardized responses, we explore in detail how distinct evaluations of patient autonomy are made through approving or reserved stand-taking. The results show that the interviewees reframed patient autonomy with the help of biological, medical, ethical, and interaction frames. Through such reframing, the patient’s agency was constructed as vulnerable and weak in contrast to the medical expert with the legitimated capacity to act as an agent for the patient. Further, end-of-life treatment decisions by the patient, as well as the patient’s interests appeared as relationally defined in interactions and negotiations managed by the physician, instead of attesting the sovereign agency of an autonomous actor.

Oscillations, boundaries and ethical care: Social work practitioner-researcher experiences with qualitative end-of-life care research

2021 ◽  
pp. 147332502110451
Author(s):  
Felicity Moon ◽  
Christine Mooney ◽  
Fiona McDermott ◽  
Peter Poon ◽  
David W Kissane
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Psychosocial Care ◽  
General Medicine ◽  
Visual Methods ◽  
Life Care ◽  
Structured Interviews ◽  
Research Issues ◽  
Health Network ◽  
Human Research Ethics

Policy and research acknowledge that the quality of end-of-life care in hospitals can be poor, with families reporting significant concerns regarding physical and psychosocial care. In order to design appropriate evidenced-based care approaches, we conducted qualitative research examining the perspectives of bereaved families of patients who received end-of-life care in our health network. This paper reports on ethical dilemmas facing practitioner-researchers conducting interviews with bereaved families. We recruited 40 bereaved family members to participate in semi-structured interviews discussing the care a loved one received while a patient under the general medicine units. Bereaved participants expressed grief, humour and anger regarding their experience, and several reported perceptions of negligent and harmful care. Irrespective of the protocols in place to mitigate distress, this posed an ethical dilemma for the practitioner-researcher as a member of the health network, who needed to balance clinical and research roles when responding to distress. The practitioner-researcher’s own bias and assumptions emerged when analysing families’ distressing recollections. More broadly, the issues discussed have clinical implications for models of hospital bereavement support. Participants’ use of photos and mementos jointly served to include the presence of the deceased in the research interview, but also highlighted the potential to utilise visual methods to examine sensitive research issues. It helps every practitioner-researcher to distinguish between research-oriented goals and clinical responsibilities to care provision as they consider their human research ethics application before beginning any research.

Experiences of a Group of Senior Nursing Students with End of Life Care and Death in Turkey

2020 ◽  
pp. 003022282096123
Author(s):  
Deniz Sanli ◽  
Fatma Iltus
Keyword(s):  
Nursing Students ◽  
End Of Life ◽  
End Of Life Care ◽  
Quality Care ◽  
Death And Dying ◽  
Life Care ◽  
Death Attitudes ◽  
Positive Attitudes ◽  
Dying Patients ◽  
And Behaviors

Nursing students may feel unprepared to manage the care of dying individuals and may experience anxiety and fear related to death and dying. Preparing nursing students for this situation can help them provide quality care to dying patients. This study aimed to examine the end-of-life care values and behaviors and death attitudes of senior nursing students. In examining these variables, the Values and Behaviors of Intensive Care Nurses for End-of-Life Instrument and the Death Attitude Profile-Revised Scale were used. It was found that the students developed positive attitudes and behavior towards end-of-life care, and that they believed death to be a natural part of life and there is life after death. Students who felt that the information they received during their education was partially sufficient were more likely to have negative death attitudes. It can be recommended that teaching strategies in the education of the nursing students be developed.

Health Care Professionals’ Awareness of a Child’s Impending Death

2020 ◽  
Vol 30 (9) ◽  
pp. 1314-1325
Author(s):  
Kathie Kobler ◽  
Cynthia Bell ◽  
Karen Kavanaugh ◽  
Agatha M. Gallo ◽  
Colleen Corte ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Life Care ◽  
Structured Interviews ◽  
Study Approach ◽  
Multiple Data ◽  
Impending Death ◽  
Record Review

Health care professionals’ (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs’ initial awareness of a child’s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a “delicate dance of figuring out” key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.

scholarly journals Critical nursing and health care aide behaviors in care of the nursing home resident dying with dementia

BMC Nursing ◽  
2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Genevieve N. Thompson ◽  
Susan E. McClement
Keyword(s):  
Health Care ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Structured Interviews ◽  
Care Needs ◽  
Two Phase ◽  
Home Setting ◽  
Expert Nurses

Abstract Background With the aging of the population, dying with dementia will become one of the most common ways in which older adults will end their final years of life, particularly for those living in a nursing home. Though individuals living with dementia have complex care needs and would benefit from a palliative approach to care, they have traditionally not been recipients of such care. An important aspect of determining quality in end-of-life care is the identification of expert practices, processes or behaviors that may help achieve this care. However, for those living with dementia in nursing homes, we have a limited understanding of how to best support expert end of life care. To redress this gap in knowledge, the purpose of this study was to examine and describe expert care of the individual with dementia approaching death from the perspective of nurses and health care aides (HCAs) identified by their peers as having special expertise in caring for this population. Methods A qualitative research design known as Interpretative Description was used to conduct the study. Expert nurses and HCAs were identified through a two-phase nomination process. Individual semi-structured interviews were conducted with consenting participants. Data were analyzed using constant comparative analysis to determine the key critical behaviors. Results Analysis of data collected from expert nurses (n = 8) and HCAs (n = 7) revealed six critical behaviors when caring for residents dying with dementia. All nurses and HCAs unanimously endorsed that the overarching goal of care is similar for all residents who are actively dying; to achieve comfort. The six critical behaviors in caring for residents dying with dementia included: 1) recognizing and responding to changes in a resident’s pattern of behavior; 2) attending to the person; 3) working with the family; 4) engaging with others; 5) responding after the death has occurred; and 6) having a positive attitude toward care of the dying. Conclusions The critical behaviors described by nurses and HCAs in this study provides emerging evidence of best practices in care of those with dementia and their families, particularly near the end of life within the nursing home setting.

scholarly journals Exposure to Death is Associated with Positive Attitudes and Higher Knowledge About End-of-Life Care in Graduating Medical Students

2008 ◽  
Vol 11 (9) ◽  
pp. 1227-1233 ◽  
Author(s):  
Wendy G. Anderson ◽  
Jillian E. Williams ◽  
James E. Bost ◽  
David Barnard
Keyword(s):  
Medical Students ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Positive Attitudes
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