Growing Evidence That Surrogate Decision-makers Need Help
Role is ‘burdensome and distressing’
Surrogates reported better-quality communication with a family support intervention, found a recent study. Some strategies include:
• training nurses in advanced communication and support skills;
• including family support interventions in care pathways;
• adding nurses or social workers to the ICU team to support families.
Surrogates reported better-quality communication and patient- and family-centered care with a family support intervention, found a recent study.1 “The thing that drove us to want to do this study was we think there are ways to improve how we engage families in care decisions for incapacitated patients with advanced illness,” says Douglas B. White, MD, MAS, the study’s lead author.
About one in four patients are admitted to an ICU within 30 days of their death.2 “There are lots of problems with what happens there,” says White, chair of ethics in critical care medicine at University of Pittsburgh Medical Center (UPMC) and director of the University of Pittsburgh Program on Ethics and Decision Making In Critical Illness.
One worry is the degree to which the care provided matches patient preferences. Another is the toll that the decision-making process takes on family. “Lots of families leave ICUs with high rates of stress, anxiety, PTSD, and depression,” says White.
The study, which looked at 1,420 critically ill patients, found that length of stay in the ICU was shorter with the intervention than with usual care. “This was likely due to families being able to more rapidly make patient-centered decisions about transitioning to comfort-focused care,” says White.
The researchers did not bring in palliative care consults or add new team members. Instead, they trained the existing team in advanced communication and support skills. “We think the nursing teams in the ICUs are an underappreciated resource to deliver effective systematic support to families,” says White.
The intervention was then embedded in a care pathway for families in ICUs. “What’s nice about that is it’s potentially a much more scalable model than models that require outside resources,” says White.
Part of Clinical Culture
The goal is to provide good, basic support to all ICU families. “That is valuable for a couple of reasons,” says White. Fewer ethics consultations are requested simply because of inadequate communication. Necessary consults are less complex because there already has been good communication between the family and the team.
“Instead of cases where the caregivers and family are at loggerheads because of major disagreements and bad feelings, maybe you will instead see cases where there is just disagreement about one issue,” says White.
The approach calls for training of nurses in mediation and emotional support skills. Palliative care physicians — or ethicists — are well-positioned to take on this role. “It would be great for the ICU team and administration to align with ethics consults, who are expert communicators, on this role,” says White.
Few ICUs have a systematic approach to support families in ICUs. “There are lots of downsides to that,” says White. If left up to individual physicians as to whether and how families are supported, it happens inconsistently. “The field is shifting to develop processes of care that make routine family support the default,” says White.
There is increasing recognition of the importance of supporting ICU families consistently. “It’s not enough for hospital administrators just to say, ‘It’s important, but we’re not going to give you any [more] infrastructure to do it than you had before,’” says White.
Just as ICUs use clinical protocols for patient care, protocols can similarly be used to support families. “What’s nice about this intervention, as potentially a model for the field, is nurses can say, ‘What’s on the list for today in terms of the plan for family support?’” says White.
Family support interventions no longer fall by the wayside during busy times. As implementation science has shown, practice changes do not just happen, says White: “You have to put structures in place to make the things you think are important part of the fabric of the clinical culture.”
To make life-and-death decisions for another is “one of the most difficult tasks imaginable, raising countless tricky ethical issues,” says Kenneth W. Goodman, PhD, FACMI, director of the University of Miami’s Institute for Bioethics and Health Policy. “Yet we too often tend to leave these family members and friends in the lurch.”
Surrogates need resources to be successful. Ideally, this includes an ethics orientation on the principle of substituted judgment. “This is no mean feat against a background of grief, hope, love, and denial,” says Goodman.
Clinicians, in turn, need guidance in order to support families. This might take the form of ethicist-led workshops or an in-service titled “How to Help Family Members Decide,” suggests Goodman.
Surrogates often worry about being ill-prepared or making the “wrong” decision. “These are often high-stakes decisions, and emotionally taxing ones,” says Jonathan M. Marron, MD, MPH, teaching faculty at Harvard Medical School’s Center for Bioethics and a pediatric oncologist and clinical ethicist at Boston Children’s Hospital.
Surrogates are asked to disconnect themselves from their role as the patient’s loved one and make a decision as if they were the patient and not themselves. “This inherent conflict — and conflict of interest — is challenging. It can be both burdensome and distressing,” says Marron. Ethicists can support surrogates in these ways:
• reminding surrogates that they have been entrusted with the role for a reason and that they know the patient and can use that knowledge to identify what the patient likely would have wanted;
• asking surrogates to speak about what matters to the patient and what he or she enjoys. “Such an exploration can help surrogates to really put themselves in the patient’s shoes and feel better able to make decisions on a patient’s behalf,” says Marron;
• pointing out that for most surrogate decisions, there is not an obvious right or wrong answer. “We are all just working together to do the best we can to take care of the patient,” says Marron.
Two Key Concerns
A multicenter trial is currently underway to evaluate the effect of “a multifaceted surrogate support intervention on surrogates’ psychological distress, the quality of decisions about goals of care, and healthcare use.”3 “The study was motivated by the need for effective strategies to address two key concerns in the care of critically ill adults and their families,” says Jennifer Seaman, PhD, RN, the study’s lead author. These two issues are:
• incapacitated ICU patients frequently receive aggressive care that is likely not what they would choose;
• the decisional surrogates of critically ill patients have a high prevalence of anxiety and distress, which often persists well beyond the ICU episode.
“The intervention being tested seeks to address both these interrelated problems by providing surrogates with multiple types of support,” says Seaman, an assistant professor in the University of Pittsburgh School of Nursing’s department of acute and tertiary care.
A trained ICU nurse or social worker joins the ICU team as a family support specialist. This person delivers emotional, communication, decisional, and anticipatory grief support to surrogates through daily interactions during the ICU stay.
“Effective and scalable strategies to support surrogate decision-makers are essential to ensuring that critically ill patients receive care that is consistent with their values and preferences,” says Seaman.
1. White DB, Angus DC, Shields AM, et al. A randomized trial of a family-support intervention in intensive care units. N Engl J Med 2018; 378(25):2365-2375.
2. Teno JM, Gozalo P, Trivedi AN, et al. Site of death, place of care, and health care transitions among U.S. medicare beneficiaries, 2000-2015. JAMA 2018; 320(3):264-271.
3. Seaman JB, Arnold RM, Buddadhumaruk P, et al. Protocol and fidelity monitoring plan for Four Supports: A multicenter trial of an intervention to support surrogate decision makers in intensive care units. Ann Am Thorac Soc 2018; 15(9):1083-1091.
• Kenneth W. Goodman, PhD, FACMI, Director, Institute for Bioethics and Health Policy, University of Miami (FL). Phone: (305) 243-5723. Email: [email protected].
• Jonathan M. Marron, MD, MPH, Center for Bioethics, Harvard Medical School, Boston. Phone: (617) 632-3453. Email: [email protected].
• Jennifer Seaman, PhD, RN, Department of Acute and Tertiary Care, School of Nursing, University of Pittsburgh. Email: [email protected].
• Douglas B. White, MD, MAS, UPMC Endowed Chair, Ethics in Critical Care Medicine, University of Pittsburgh Medical Center. Phone: (412) 864-3757. Email: [email protected].
Surrogates reported better-quality communication with a family support intervention, found a recent study.
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