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Invited Commentary
Critical Care Medicine
August 18, 2021

Implementing and Enhancing Multifaceted Systems Interventions to Improve Goals-of-Care Discussions Among Patients With Serious Illness—An Opportunity for Human-Centered Design

Author Affiliations
  • 1Division of Gerontology and Geriatric Medicine, Department of Medicine, University of Washington, Seattle
  • 2Cambia Palliative Care Center of Excellence, University of Washington, Seattle
  • 3Division of Pulmonary, Critical Care, and Sleep Medicine, Harborview Medical Center, Department of Medicine, University of Washington, Seattle
JAMA Netw Open. 2021;4(8):e2121497. doi:10.1001/jamanetworkopen.2021.21497

Multifaceted interventions that combine educational and systems-based approaches can increase timely goals-of-care discussions and improve patient and clinician experience1,2 but have been infrequently evaluated in the inpatient setting. The qualitative study by Lagrotteria et al3 assesses the experience and perceptions of 19 general internists, 3 nurse practitioners, and 1 social worker after implementation of the Serious Illness Care Program (SICP) at 2 Canadian teaching hospitals. The multifaceted intervention uses a combination of patient and clinician priming and communication tools, including a patient preparation letter, a postconversation family communication guide, and the clinician-facing Serious Illness Conversation Guide, which provides an evidence-based framework to discuss prognosis and elicit patient values, goals, and preferences.1 These elements are combined with a 2.5-hour interactive clinician communication training module as well as workflow improvements through the use of a unit nurse coordinator who screens and prepares patients and family members for conversations and schedules meetings to decrease administrative burden on busy clinicians.3

Overall, clinicians reported that the intervention allowed them to expand the scope of goals-of-care discussions beyond a narrow conversation about code status to more comprehensive assessments of patient values, goals, and preferences. The authors attributed much of these reported improvements to key elements within the SICP and the structure and language that was provided to guide conversations. In addition, clinicians reported increased humanization of patient care, alignment of care with patient values, and enhanced clinician experience and normalization of serious illness conversations within clinicians’ day-to-day practice.3 These findings have been supported by another qualitative evaluation of clinicians using such interventions in other settings.4 However, an important novel finding of this study is that it identified several system-based features of the SICP that facilitated behavior change among clinicians, including the presence of a unit champion to reduce the administrate burden of coordinating goals-of-care discussions, lifting up the voices of interprofessional team members, having access to physical conversation guides in the units, and streamlining documentation of goals-of-care discussions in the electronic health record by using premade templates. These findings offer insight into the reasons why educational interventions in isolation have been ineffective in enhancing goals-of-care discussions5 and why multimodal and interprofessional system-based interventions may provide more benefit.

The study has several limitations. First, the study does not account for the views of nonresponders, which may introduce bias. It is possible that a more representative sample would have revealed additional shortcomings of the intervention given that individuals who held negative viewpoints may have been less likely to participate. For example, the authors referred to possible drawbacks of the intervention in their thematic analysis, including ongoing challenges regarding time and integration with workflows. These issues have frequently been cited as barriers to initiating conversations about serious illness,6 yet the study did not fully explore how this intervention alleviated or contributed to this burden. Second, because only 4 participants were nonphysicians, other interprofessional team members and stakeholders who are essential to the implementation of such multimodal interventions, including bedside nurses and the nurse coordinators who helped to facilitate the study, are underrepresented. In addition, given the focus on clinicians, it is difficult to draw conclusions regarding the acceptability and impact of the SICP for nonphysicians and systems as a whole. Third, this study did not explore the perspectives of patients and their family members who participated in these discussions, which is an important aspect for future studies. Despite these limitations, the Lagrotteria et al3 study provides important insights into the clinicians’ experience of this multimodal intervention.

Evaluating and enhancing the outcomes of multifaceted interventions to improve goals-of-care discussions ultimately requires methodologies that can assess the complex and dynamic interactions among clinicians, patients, family members, teams, the intervention, and the larger health care system, or what some systems thinkers would call a messy problem. Human-centered design (HCD) can provide a framework for evaluating such complex relationships by identifying all important stakeholders who are involved in the implementation of a system-based intervention, breaking down processes and problems into their most relevant components, and generating targeted and informed solutions that are designed to keep patient and clinician interests at the forefront of the intervention.7 Human-centered design is a generative and iterative process that includes several important characteristics: (1) insight, or developing an understanding of stakeholders and their needs; (2) ideation, or engaging stakeholders throughout the design process; and (3) implementation, or executing the intervention and testing prototypes.7

The HCD insight phase frequently uses qualitative approaches similar to those used by Lagrotteria et al3 to evaluate the impact of interventions for end users and combines these approaches with ethnographic observations and behavioral evaluations to better understand processes and interactions between end users, the environment in which they work, and the system at large.8 As such, HCD not only helps us broaden our lens to include individual and environmental factors not addressed by many traditional qualitative methods, it also helps us define why and how outcomes come to pass. This process provides additional insight into potential facilitators and barriers to implementation by expanding the evaluative lens beyond just the individual clinician or patient. For example, ethnography could help to discern the consequences of the SICP intervention for workflow, documentation, and the general uptake of the intervention, whereas behavioral evaluations could highlight how the intervention changed clinician interactions with patients, family members, interprofessional team members, supervisors, and their environment. In addition, once these facilitators and barriers are identified, HCD can produce more innovative system-based solutions by inviting stakeholders to partake in the design process.8 In fact, HCD has successfully been used to create tools that enhance communication regarding serious illness.9

A potential drawback of using HCD and other system-based evaluative techniques is that the interventions that emerge are frequently tailored to a specific environment and may not be generalizable. A recent study of 3 institutions reported substantial differences in institutional culture regarding conversations about serious illness that have implications for intensity of care at the end of life.10 This issue poses a major challenge in creating scalable interventions and suggests that interventions may have to be adapted for different institutions. Notably, this reality further underscores the utility of agile approaches such as HCD in evaluating, enhancing, and adapting multifaceted interventions to improve communication about serious illness and goals-of-care between patients, their family members, and their clinicians. Solutions likely lie in coupling system-based design methods with insights from HCD and traditional clinical research methods to promote pragmatic, successful, and scalable solutions to enhance goals-of-care discussions.

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Article Information

Published: August 18, 2021. doi:10.1001/jamanetworkopen.2021.21497

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Abedini NC et al. JAMA Network Open.

Corresponding Author: J. Randall Curtis, MD, MPH, Division of Pulmonary, Critical Care, and Sleep Medicine, Harborview Medical Center, Department of Medicine, University of Washington, 325 Ninth Ave, PO Box 359762, Seattle, WA 98104 (jrc@uw.edu).

Conflict of Interest Disclosures: Dr Curtis reported receiving grants from the Cambia Health Foundation and the National Institutes of Health outside the submitted work. No other disclosures were reported.

References
1.
Bernacki  R, Paladino  J, Neville  BA,  et al.  Effect of the Serious Illness Care Program in outpatient oncology: a cluster randomized clinical trial.   JAMA Intern Med. 2019;179(6):751-759. doi:10.1001/jamainternmed.2019.0077 PubMedGoogle ScholarCrossref
2.
Curtis  JR, Downey  L, Back  AL,  et al.  Effect of a patient and clinician communication-priming intervention on patient-reported goals-of-care discussions between patients with serious illness and clinicians: a randomized clinical trial.   JAMA Intern Med. 2018;178(7):930-940. doi:10.1001/jamainternmed.2018.2317 PubMedGoogle ScholarCrossref
3.
Lagrotteria  A, Swinton  M, Simon  J,  et al.  Clinicians’ perspectives after implementation of the Serious Illness Care Program: a qualitative study.   JAMA Netw Open. 2021;4(8):e212517. doi:10.1001/jamanetworkopen.2021.21517Google Scholar
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Paladino  J, Koritsanszky  L, Nisotel  L,  et al.  Patient and clinician experience of a serious illness conversation guide in oncology: a descriptive analysis.   Cancer Med. 2020;9(13):4550-4560. doi:10.1002/cam4.3102 PubMedGoogle ScholarCrossref
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Curtis  JR, Back  AL, Ford  DW,  et al.  Effect of communication skills training for residents and nurse practitioners on quality of communication with patients with serious illness: a randomized trial.   JAMA. 2013;310(21):2271-2281. doi:10.1001/jama.2013.282081 PubMedGoogle ScholarCrossref
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Bernacki  RE, Block  SD; American College of Physicians High Value Care Task Force.  Communication about serious illness care goals: a review and synthesis of best practices.   JAMA Intern Med. 2014;174(12):1994-2003. doi:10.1001/jamainternmed.2014.5271 PubMedGoogle ScholarCrossref
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IDEO.org. The Field Guide to Human-Centered Design. IDEO.org; 2015. Accessed March 29, 2021. https://www.designkit.org//resources/1
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Melles  M, Albayrak  A, Goossens  R. Innovating health care: key characteristics of human-centered design. Int J Qual Health Care. 2021;33(Suppl 1):37-44. doi:10.1093/intqhc/mzaa127
9.
Abedini  NC, Merel  SE, Hicks  KG,  et al.  Applying human-centered design to refinement of the Jumpstart guide, a clinician- and patient-facing goals-of-care discussion priming tool.   J Pain Symptom Manage. Published online June 17, 2021.PubMedGoogle Scholar
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Dzeng  E, Dohan  D, Curtis  JR, Smith  TJ, Colaianni  A, Ritchie  CS. Homing in on the social: system-level influences on overly aggressive treatments at the end of life. J Pain Symptom Manage. 2018;55(2):282-289. doi:10.1016/j.jpainsymman.2017.08.019
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