Family Caregivers’ Characterization of Conversations Following an ACP Event

Schubart, Jane R.; Reading, Jean M.; Penrod, Janice; Stewart, Renee R.; Sampath, Ramya; Lehmann, Lisa Soleymani; Levi, Benjamin H.; Green, Michael J.

doi:10.1177/1049909118760302

Cited by 13 publications

(7 citation statements)

References 17 publications

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“…Some physicians in this study had prior experiences where patients had declined a decision-making conversation, but in an English study of severely ill COPD patients, 98 of 100 found EOL discussions appropriate [ 21 ]. In contrast, more families than patients seem uncomfortable talking about advanced care planning after it has been brought up by their physician [ 22 ], but still three out of four will address the subject several times with the patient afterwards [ 23 ]. Lack of clarity about the most appropriate timing has been found in other studies [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

Tuesen

Ågård

Bülow

et al. 2022

Scandinavian Journal of Primary Health Care

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Objective To explore patients’ and physicians’ perspectives on a decision-making conversation for life-sustaining treatment, based on the Danish model of the American Physician Orders for Life Sustaining Treatment (POLST) form. Design Semi-structured interviews following a conversation about preferences for life-sustaining treatment. Setting Danish hospitals, nursing homes, and general practitioners’ clinics. Subjects Patients and physicians. Main outcome measures Qualitative analyses of interview data. Findings After participating in a conversation about life-sustaining treatment using the Danish POLST form, a total of six patients and five physicians representing different settings and age groups participated in an interview about their experience of the process. Within the main research questions, six subthemes were identified: Timing, relatives are key persons, clarifying treatment preferences, documentation across settings, strengthening patient autonomy, and structure influences conversations. Most patients and physicians found having a conversation about levels of life-sustaining treatment valuable but also complicated due to the different levels of knowledge and attending to individual patient needs and medical necessities. Relatives were considered as key persons to ensure the understanding of the treatment trajectory and the ability to advocate for the patient in case of a medical crisis. The majority of participants found that the conversation strengthened patient autonomy. Conclusion Patients and physicians found having a conversation about levels of life-sustaining treatment valuable, especially for strengthening patient autonomy. Relatives were considered key persons. The timing of the conversation and securing sufficient knowledge for shared decision-making were the main perceived challenges. KEY POINTS Conversations about preferences for life-sustaining treatment are important, but not performed systematically. When planning a conversation about preferences for life-sustaining treatment, the timing of the conversation and the inclusion of relatives are key elements. Decision-making conversations can help patients feel in charge and less alone, and make it easier for health professionals to provide goal-concordant care. Using a model like the Danish POLST form may help to initiate, conduct and structure conversations about preferences for life-sustaining treatment.

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Section: Discussionmentioning

confidence: 99%

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

Tuesen

Ågård

Bülow

et al. 2022

Scandinavian Journal of Primary Health Care

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“…This idea was stressed considering the difference between imagining being sick and being sick. In the participants’ opinions, this difference requires that someone can protect the will of the sick through clear and transparent communication with the family members and the medical team [ 64 , 65 , 66 ]. In particular, it was considered crucial to respect the decisions regarding therapies that require more invasive interventions, while palliative care was highly valued.…”

Section: Discussionmentioning

confidence: 99%

“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives

Testoni

Palazzo

Calamarà

et al. 2021

Behavioral Sciences

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The study presents the results of qualitative research carried out within a death education project dedicated to advance treatment directives (ATDs) in which it was proposed to participants to empathize with people who had received a diagnosis of Amyotrophic Lateral Sclerosis (ALS). The study involved 104 people who discussed and reflected on issues related to the knowledge of having to die, palliative care and ATDs, investigating what choices they would have made if they had received such a diagnosis. Finally, they were asked to write a paper describing their impressions and hypothetical choices. Qualitative analysis has elucidated among fundamental themes. Four thematic areas emerged from the data analysis: (1) ATDs and the family; (2) the importance of reducing pain and suffering; (3) emotions and considerations regarding death, illness and spirituality; and (4) opinions on the DeEd course. It has emerged that some people are unfamiliar with palliative care or the right to self-determination and that addressing these issues helps manage the thought of the future with less terror. The experience of death education has therefore proven to be very positive in dealing with complex and often censored issues, allowing thinking about death in a less distressing way.

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“…Advance directives are legal documents describing preferences for future care and appointing a surrogate to make health care decisions in the event of incapacity (2). Today, advance care planning and advance directives are conceptualized as a health behavior (3), and their benefits are demonstrated at the individual (e.g., reducing unnecessary pain, unhelpful or invasive procedures or unwanted hospitalizations), family (e.g., minimizing stress and burden, avoiding conflicts among family members, and providing peace of mind), physician (e.g., reducing conflicts and misunderstanding with family members, avoiding ethical dilemmas), and social levels (e.g., reducing health care costs) (4)(5)(6)(7)(8)(9). Given the characteristics of dementia (10), completing advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for endof-life care of people with this disease (11).…”

Section: End-of Life and Advance Care Planningmentioning

confidence: 99%

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

2022

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BackgroundCompleting advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups.ObjectivesTo explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group.MethodsThis qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis.ResultsFour overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives.ConclusionsThere is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.

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Family Caregivers’ Characterization of Conversations Following an ACP Event

Cited by 13 publications

References 17 publications

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

Decision-making conversations for life-sustaining treatment with seriously ill patients using a Danish version of the US POLST: a qualitative study of patient and physician experiences

“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

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