Goals-of-care conversations after stroke survival

Introduction

Goals-of-care conversations (GOCC) are important but rare among stroke survivors. Serious illness communication priming guides like the Jumpstart guide¹ can increase GOCC but have not been adapted for use in stroke survivors. The goal of this study was to use the first two steps of human-centered design² to (1) develop a better understanding of stakeholders’ perspectives on stroke-specific GOCC and their needs (“insight”) and to (2) engage these stakeholders in the design process of a stroke-specific Jumpstart guide (“ideation”).

Methods

We conducted semi-structured, qualitative interviews with a purposive sample of diverse stroke survivors, caregivers, and outpatient neurology and primary care clinicians across a large, university-affiliated health system. We assessed barriers to GOCC and acceptability of a stroke-specific Jumpstart guide. Three investigators (NLM, NCA, CJC) conducted thematic analysis of interview transcripts; interviews ended after achieving thematic saturation. The University of Washington institutional review board approved this study, and participants provided verbal informed consent. The data that support the findings of this study are available from the authors upon reasonable request.

Results

We interviewed 16 stroke or primary care clinicians, 7 stroke survivors alone, 2 stroke survivor-caregiver dyads, and 2 caregivers alone. Over half the participants identified as female (9 clinicians, 4 stroke survivors, and 3 caregivers) and reported being from racially and/or ethnically minoritized backgrounds (8 clinicians, 6 stroke survivors, and 2 caregivers).

Overall, clinicians reported having GOCC with stroke survivors, although acknowledged wide variability in the timing and content of these conversations. The decision to have a GOCC seemed largely driven by the clinician’s sense of the patient’s functional impairments: “[There are] so many more triggers, … like people who are discharged to a skilled nursing facility, …and there’s probably an age cutoff” (Cl3). Some primary care physicians considered stroke alone as a trigger for a GOCC in the outpatient visit, whereas most neurologists did not see an isolated stroke as a reason to have a GOCC. Stroke survivors and caregivers also reported having GOCC, but more often with friends or family and less often with clinicians (“I talked to my wife…. I don’t think it’s very comfortable talking to the doctor about dying…. it’s like you’re giving up” (P10)).

Three key barriers to GOCC identified by participants (Table) included (1) lack of consensus around GOCC mechanics (who, why, what); (2) cultural, racial, and ethnic factors including limited trust in the US healthcare system and varied values around illness and death; and (3) system-based barriers such as absence of key participants and lack of time.

Table:

Barriers to Goals-of-care communication identified by patients (P), caregivers (Ca) and clinicians (Cl).

Mechanics of GOCC
Who should conduct GOCC?	“I probably should be prodded more to have [GOCC], …this idea of staying in your lane, … should I do it or the PCP?” (Cl17).
	“I think we all need to be having the conversations, …we all ought to see ourselves as practicing within a continuity of care…” (Cl11).
	“I talked to my wife…. I don’t think it’s very comfortable, talking to the doctor about dying…. [I]t’s like you’re giving up” (P10).
Why have GOCC?	“By the time I’m seeing them at follow up … they’ve kind of gotten into a rhythm with dealing with this level of disability, and feeling like, ‘Okay, this is fine, this is manageable’” (Cl1).
	“If you don’t have your affairs in order, [clinicians] are going to do whatever they can to keep you alive. And that may mean that somebody is going to be living a long, awful life…” (Ca2).
What content should be covered?	“… understand more about what [the patient’s] definition of a good quality of life is and what deficits they are okay with living and how much time they would be willing to live in a nursing facility and [their] chance to get better. Because, then it can help make decisions about the things like TPA and thrombectomy and code status” (Cl8).
Healthcare disparities
	“Having been a woman all my life, and Latina, you know healthcare professionals can be very … dismissive of symptoms, and this has happened to me numerous times” (P8).
	“a number of my patients have expressed to me that ‘Well, let’s be honest here, none of us really know, only God knows, and we’re all in God’s hands...’“ (Cl15).
System-based barriers to GOCC
Lack of key participants	Family: “you’re talking to a patient who may not really be able to communicate well for themselves” (Cl3).
	Interpreter: “some words... don’t directly translate [and the message] can get lost in translation” (Cl4).
Lack of time	“would wreck my entire clinic…” (Cl7).
	“…doctors are so busy, they’re trying to just talk about most important stuff…. It’s not like… having drinks with your doctor and say, ‘Hey, I’ve been thinking about this.’ It just doesn’t happen” (P1)
	“I never really asked my dad [about his goals] because we were always focused on the financial situation” (Ca5).

Finally, when presented with the adapted stroke-specific Jumpstart guides, participants found them acceptable and appreciated the reminder that GOCC “can be short. It doesn’t have to take an hour…” (Cl12); “I like that it’s not overwhelming…. it’s hard to talk about but I think just short and sweet” (P2).

Discussion

Patients, families and clinicians acknowledged the need for GOCC for stroke survivors and their own responsibility in this process. The Jumpstart guide was welcomed to facilitate these conversations.

Counter to commonly held belief, existing evidence suggests that GOCC, if approached with consent and individualized attention, do not decrease hope or increase distress, and that patients and caregivers appreciate early prognostic information in order to engage in more thoughtful conversations.³ Use of the Jumpstart guide in hospitalized patients increased GOCC documentation, with a larger effect size among racially and ethnically minoritized patients.¹ Additional work is needed to implement and assess efficacy of this guide in this unique population.

List of nonstandard abbreviations and nonstandard acronyms used:

GOCC

Goals-of-care conversations

P

patient

Ca

Caregiver

Cl

Clinician