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Purpose In intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations. Method A qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families. Results Seventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together. Conclusion This study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation., Author(s): Aranka Akkermans [sup.1] [sup.2], Sanne Prins [sup.1] [sup.2], Amber S. Spijkers [sup.1] [sup.2], Jean Wagemans [sup.3], Nanon H. M. Labrie [sup.4], Dick L. Willems [sup.5], Marcus J. Schultz [sup.6] [...]

Background: Quality of Life (QoL) may be a factor in physicians' decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD. Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL. Results: Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way. Conclusions: The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making.

Palliative care is a comprehensive approach aimed at improving the quality of life of patients with serious illness and their families. Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care (HPC) from a familial standpoint in the context of South and Southeast Asia. This paper aims to describe family perspectives on key elements of good home palliative care in both regions. We conducted a scoping review using Arksey and O'Malley's methodological framework. The search was done in 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Inclusion criteria were (1) exploring family experiences of palliative care, (2) home setting, and (3) South and Southeast Asian countries. Twenty-four studies were included from Bangladesh (n = 1), India (n = 6), Indonesia (n = 7), Malaysia (n = 2), Singapore (n = 2), and Thailand (n = 6). Five key elements of HPC from family perspectives were comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. The crucial role of religious and spiritual activities and the need for facilitation in facing systemic barriers were specific to South and Southeast Asia. HPC teams should be able to provide holistic support for patients and their families, which is influential for the quality of care. Improving care on a systemic level in these regions should be a policy priority. [ABSTRACT FROM AUTHOR]

Background: The objective of this study was to provide an overview of concepts, methods of assessment and assessors in empirical studies on quality of life (QoL) of persons with Profound Intellectual and Multiple Disabilities (PIMD). Method: A narrative literature review was conducted by searching electronic databases until December 2016, and the included studies were then analysed thematically. Results: Twenty-one articles were included in the analysis. Multidimensional concepts of QoL consisting of both subjective and objective components were found, although the articles used different distinctions for each. QoL was assessed by behavioural observations or interviews/questionnaires. Family members, primary caregivers and more distant observers (or a combination of these three) determined QoL. Triangulation of assessors and methodological pluralism were used. Conclusions: This review highlighted several components of QoL in persons with PIMD, as well as challenges in researching the QoL of persons who are not able to express themselves verbally. The distinction between objective and subjective QoL was difficult to clarify, with interpretation being both inevitable and necessary. Although triangulation is seen to be good practice in QoL assessment, the role of proxies in assessing the QoL of persons with PIMD needs further investigation.

The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake. [ABSTRACT FROM AUTHOR]