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. 2021 Dec;35(10):1865-1877.
doi: 10.1177/02692163211028079. Epub 2021 Jun 28.

How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative study

A Aranka Akkermans  1 , J M W J Joyce Lamerichs  2 , M J Marcus Schultz  3   4   5 , T G V Thomas Cherpanath  3 , J B M Job van Woensel  6 , M Marc van Heerde  6 , A H L C Anton van Kaam  7 , M D Moniek van de Loo  7 , A M Anne Stiggelbout  8 , E M A Ellen Smets  1 , M A Mirjam de Vos  9
Affiliations

How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative study

A Aranka Akkermans et al. Palliat Med. 2021 Dec.

Abstract

Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach.

Aim: To explore how doctors involve families in the decision-making process regarding life-sustaining treatment on the neonatal, pediatric, and adult intensive care.

Design: Exploratory inductive thematic analysis of 101 audio-recorded conversations.

Setting/participants: One hundred four family members (61% female, 39% male) and 71 doctors (60% female, 40% male) of 36 patients (53% female, 47% male) from the neonatal, pediatric, and adult intensive care of a large university medical center participated.

Results: We identified eight relevant and distinct communicative behaviors. Doctors' sequential communicative behaviors either reflected consistent approaches-a shared approach or a physician-driven approach-or reflected vacillating between both approaches. Doctors more often displayed a physician-driven or a vacillating approach than a shared approach, especially in the adult intensive care. Doctors did not verify whether their chosen approach matched the families' decision-making preferences.

Conclusions: Even though tailoring doctors' communication to families' preferences is advocated, it does not seem to be integrated into actual practice. To allow for true tailoring, doctors' awareness regarding the impact of their communicative behaviors is key. Educational initiatives should focus especially on improving doctors' skills in tactfully exploring families' decision-making preferences and in mutually sharing knowledge, values, and treatment preferences.

Keywords: Qualitative research; communication; critical care; decision making; family; palliative care.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Four phases of coding and analysis.
Figure 2.
Figure 2.
Overview of which behaviors reflected a shared approach, which behaviors reflected a physician-driven approach, and two in-between behaviors.
Figure 3.
Figure 3.
Simplified visualization of the two ways in which doctors vacillated between approaches.
See this image and copyright information in PMC

References

    1. Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet 2010; 376(9749): 1347–1353. - PubMed
    1. Davidson JE, Aslakson RA, Long AC, et al.. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med 2017; 45(1): 103–128. - PubMed
    1. Kon AA, Davidson JE, Morrison W, et al.. Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med 2016; 44(1): 188–201. - PMC - PubMed
    1. Norman G. What few appreciate: the gray zone of medical decisions, https://www.linkedin.com/pulse/20140324195914-10808081-what-few-apprecia... (2014, accessed 21 August 2020).
    1. Michelson KN, Frader J, Sorce L, et al.. The process and impact of stakeholder engagement in developing a pediatric intensive care unit communication and decision-making intervention. J Patient Exp 2016; 3(4): 108–118. - PMC - PubMed