scholarly journals Treatment choice when faced with high risk of poor outcome – and response to decisions made by surrogates on their behalf

2020 ◽  
Vol 8 (11) ◽  
Author(s):  
Charlie Corke ◽  
Stella-May Gwini ◽  
Sharyn Milnes ◽  
Ben Jong ◽  
Neil Orford
Keyword(s):  
Online Survey ◽  
Treatment Choice ◽  
Decision Makers ◽  
Care Plan ◽  
Poor Outcome ◽  
Advance Care Plan ◽  
Hypothetical Scenario ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision

Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers. We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker. Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed. This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective. Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions. Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.

Prognostication and Ethics

2018 ◽  
pp. 265-275 ◽  
Author(s):  
David Y. Hwang ◽  
Douglas B. White
Keyword(s):  
Traumatic Brain Injury ◽  
Decision Making ◽  
Decision Makers ◽  
Care Planning ◽  
Shared Decision ◽  
Inappropriate Treatment ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Key Topics ◽  
Surrogate Decision

This chapter provides an overview of prognostication and key topics in ethics as they relate to the practice of neurocritical care. Challenges with prognostication are summarized. Outcome prognostication tools for ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and traumatic brain injury are outlined along with a discussion of their limitations. Best practices for communicating prognosis are reviewed. Shared decision-making with surrogate decision-makers in intensive care units is discussed in detail, with attention to advance care planning documentation and resolution of situations in which clinicians may have conscientious objections to potentially inappropriate treatment.

scholarly journals Concerns of surrogate decision makers for patients with acute brain injury

Neurology ◽  
2020 ◽  
Vol 94 (19) ◽  
pp. e2054-e2068 ◽  
Author(s):  
David Y. Hwang ◽  
Andrea K. Knies ◽  
David Mampre ◽  
Stanislav Kolenikov ◽  
Marci Schalk ◽  
...  
Keyword(s):  
Brain Injury ◽  
Online Survey ◽  
Latent Class ◽  
Functional Disability ◽  
Vegetative State ◽  
Acute Brain Injury ◽  
Decision Makers ◽  
Term Care ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

ObjectiveTo determine whether groups of surrogates for patients with severe acute brain injury (SABI) with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1,588 adults recruited via a probability-based panel representative of the US population was conducted.MethodsParticipants acted as a surrogate for a GOC decision for a hypothetical patient with SABI and were randomized to 1 of 2 prognostic scenarios: the patient likely being left with a range of severe functional disability (SD) or remaining in a vegetative state (VS). Participants prioritized a list of 12 decisional concerns via best-worst scaling. Latent class analysis (LCA) was used to discover decisional groups.ResultsThe completion rate was 44.6%; data weighting was conducted to mitigate nonresponse bias. For 792 SD respondents, LCA revealed 4 groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The 4 groups were otherwise distinguished by unique concerns that their members highlighted: an older adult remaining severely disabled (34.4%), family consensus (26.4%), doubt regarding prognostic accuracy (20.7%), and cost of long-term care (18.6%). For the 796 VS respondents, LCA revealed 5 groups. Four of the 5 groups had similar concern profiles to the 4 SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns.ConclusionsAlthough surrogate decision makers for patients with SABI are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors. These data can help inform future interventions for supporting decision makers.

Implementation of group visits to improve outpatient oncology advance care planning.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 11-11
Author(s):  
Sarah Lowry ◽  
Hillary Lum ◽  
Seiko Izumi ◽  
Erik K Fromme
Keyword(s):  
Medical Record ◽  
Advance Care Planning ◽  
Decision Makers ◽  
Care Planning ◽  
Medical Visit ◽  
Improvement Project ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision ◽  
First Session

11 Background: Oncology patients that participate in advance care planning (ACP) and complete advance directives (AD) are more likely to receive goal-concordant end of life care. The AD documentation rate within our academically-affiliated community outpatient oncology clinic is below national and institutional averages. A group medical visit effectively facilitated ACP in a geriatric primary care setting. This quality improvement project implemented a similar ACP conversation group (ACPCG) in an outpatient oncology setting. Methods: Adult patients in a community oncology clinic were contacted and invited to participate in ACPCG by a nurse practitioner who works in the clinic. Using a facilitation guide, the 2-session intervention included sharing past ACP experiences, identifying surrogate decision makers, starting conversations, and discussing surrogate flexibility. Recruitment, retention, and patient ACP outcomes were measured. Results: Seventy-six patients were successfully contacted and seventeen signed up (22% recruitment rate). Twelve patients participated in the first session, and five attended the second session (42% retention). Recruitment was time intensive, and several patients responded that ACP was not relevant to their situation. Six participants completed an AD prior to attending the first session (50%) but only one had an AD in their medical record. Two had surrogate decision makers documented prior to the intervention (16%). Participants reported the ACPCG as helpful in making the process less overwhelming. There was no increase in AD documentation rates within the medical record four weeks after the intervention, but the rate of surrogate documentation increased to seven (58%). Conclusions: Participants had higher than average rates of AD completion prior to the intervention but had not shared the document with their providers. While the ACPCG was well received by patients, implementation faced multiple challenges. More efficient recruitment methods and strategies to facilitate better patient understanding of ACP are needed.

PP30  The ambulance service and the child and young person’s advance care plan: listening to families and professionals

2020 ◽  
Vol 37 (10) ◽  
pp. e14.1-e14
Author(s):  
Karen Shaw ◽  
Jenna Spry ◽  
Serena Cottrell ◽  
Carole Cummins ◽  
Nicki Fitzmaurice ◽  
...  
Keyword(s):  
Online Survey ◽  
Planning Process ◽  
Young Person ◽  
Ambulance Service ◽  
Care Plan ◽  
Individual Interviews ◽  
Advance Care Plan ◽  
Service Staff ◽  
Advance Care ◽  
Limiting Condition

BackgroundThe Child and Young Person’s Advance Care Plan (CYPACP) is a set of resources to help families and professionals agree a plan of care to be followed when a child/young person with a life-limiting condition develops potentially (i) reversible intercurrent illnesses or (ii) life-threatening complications of their condition. It covers clinical, psychosocial and spiritual issues, is designed for use in all environments that the child encounters, and can be used as a resuscitation and/or end-of-life plan. Little is known about the experiences of Ambulance Service staff who receive copies of these plans and may be called upon to follow the recommendations for treatment and resuscitation.MethodsAs part of a regional qualitative research study, families who have a CYPACP and members of the ambulance service were invited to share their views and experiences of the CYPACP via an online survey, in focus groups or individual interviews. Underpinned by an interpretative framework, thematic and linguistic analyses are being used to understand the implementation in ‘real-world’ settings, and how the CYPACP shapes the experience, delivery and quality of care.ResultsTo date 20 families with a CYPACP and 25 members of the ambulance service have taken part. Analysis is on-going. Preliminary findings show that despite families with CYPACPs having multiple experiences of interactions with the ambulance service, it is rare for ambulance crews to attend a call where a child has a CYPACP in place. Findings also suggest that there are critical points within the process of conveying the information contained within the CYPACP document that could be improved.ConclusionFollowing full analysis, it is anticipated that the ambulance services involvement with the CYPACP planning process will be better understood and that improvement strategies, including revision to existing documentation and identification of specific support needs can be made.

Does Caregiver Participation in Advance Care Planning Using a Decision Support Tool Together With Patients Reduce Caregiver Strain, Burden and Anxiety Over Time? A Post-Hoc Analysis of a Randomized Controlled Trial

2021 ◽  
pp. 104990912110402
Author(s):  
Bronson R. Kunzler ◽  
Andrew J. Foy ◽  
Benjamin H. Levi ◽  
Lauren J. Van Scoy ◽  
Erik B. Lehman ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Decision Support Tool ◽  
Study Groups ◽  
Decision Makers ◽  
Support Tool ◽  
Randomized Controlled ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Surrogate Decision ◽  
Post Hoc

Context: Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones. Objectives: To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers. Methods: Post-hoc analysis of a randomized controlled trial evaluating caregivers’ perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs “Making Your Wishes Known” (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain. Results: 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one’s vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively). Conclusion: Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers’ involvement in ACP interventions.

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