Surrogate Decision-Makers’ Trust in Clinical Team Is Affected by Many Factors

By Stacey Kusterbeck

Surrogate decision-makers start out with a baseline of trust in intensive care unit (ICU) providers, but this can change depending on many factors, found a recent study.¹ “Healthcare professionals must be cognizant of the significant effect that seemingly minor interactions with surrogate decision-makers can have on their level of trust in the healthcare team,” says Caleb Armstrong, PhD, RN, CCRN, the study’s lead author and an ICU nurse at Parkland Health in Dallas.

Armstrong and colleagues reviewed 64 articles on surrogate decision-makers’ trust in ICU providers. Surrogate decision-makers’ level of trust was affected by these factors:

• Technical competence: If surrogates observed teamwork and collaboration among the clinical team, it increased trust. Trust decreased if surrogates thought that clinicians provided inappropriate treatment, were unable to predict the disease course, or did not pay attention to the patient’s needs.
• Communication: Using simple terms, including the family in bedside rounds, and providing frequent updates all increased trust. Conveying information by phone instead of in-person decreased trust.
• Honesty: Giving truthful updates, even if the news is bad, and acknowledging mistakes and prognostic uncertainty increased trust. Withholding information, offering only vague information, and unexpected shifts from a mostly positive to a negative outlook decreased trust.
• Benevolence: Trust increased if surrogates perceived healthcare providers as sincere, compassionate, and empathetic. Decreased trust resulted from constantly changing ICU staff and the perception that the patient was getting lower-quality care because of health insurance status, race, or socioeconomic status.
• Interpersonal skills: Healthcare providers making eye contact, using humor, engaging in small talk, or asking about the patient or family’s background increased trust. Trust decreased if healthcare providers did not introduce themselves, used an uncaring tone of voice, or were perceived as being cold and rushed.

The researchers also examined how surrogates’ decision-making and behavior was affected by the level of trust they had in ICU providers. When there was greater trust, surrogates’ decisions were more closely aligned with patient wishes. Family meetings and goals of care conversations were more effective, and there were fewer conflicts between the surrogate and the clinical team.

“This literature review confirmed what most of us know intuitively: Surrogate decision-maker trust in healthcare professionals is critically important. It can have major effects on patients, surrogates, and healthcare professionals,” concludes Armstrong.

Ethicists might consider directly addressing the topic of trust during ethics consultations. “Perhaps including a question about how the medical team perceives the current level of surrogate decision-maker trust would be helpful in gathering initial data for an ethics consult about a difficult patient situation,” suggests Armstrong.

If the individual requesting an ethics consult reports a lack of surrogate decision-maker trust, the ethicist can dig deeper. Armstrong suggests asking these questions:

• What behaviors is the clinical team seeing that make them suspect distrust?
• Can the clinical team identify a specific event that might have led to this distrust? Was there a major miscommunication earlier in the hospitalization?
• Was there a sudden decline in the patient’s condition that the family attributes (correctly or not) to a failure on the healthcare team’s part?

“Having an idea of what led to the loss of trust can help the ethicist in working through the difficulties arising from the situation,” Armstrong explains.

When speaking directly to the family, ethicists should pay careful attention to any behaviors or comments that suggest distrust. Sometimes the family says outright that they do not trust the healthcare team. Other times, it is not explicitly stated, but the subtext of the conversation suggests trust is an issue. “There are many ways this may be expressed,” says Armstrong. Some families express anger at the healthcare team or unfavorably compare the patient’s current care with a previous experience at a different hospital. Some mention in passing that a relative has to stay with the patient all the time to make sure that the patient’s needs are attended to by the staff. “If a lack of trust is apparent, then the ethicist can include a trust-building component in their suggestions back to the healthcare team who made the referral,” says Armstrong.

For ICU providers, it is important to recognize that many surrogate decision-makers are encountering the hospital environment for the very first time. “While these situations may be routine for healthcare professionals, they are deeply unfamiliar and emotionally charged for families. It’s easy to forget how overwhelming this can be,” says Ariel Clatty, PhD, director of medical ethics at UPMC Presbyterian Shadyside & Western Psychiatric Hospitals.

When providers fail to explain diagnoses, treatment options, or risks clearly — or when patients feel their concerns are dismissed — trust can quickly deteriorate. “That’s why it’s so important to approach each case with sensitivity to the unique dynamics of each patient and family. Effective, empathetic communication is a cornerstone of trust-building,” underscores Clatty.

Unfortunately, healthcare providers have multiple competing priorities and lack time for the in-depth conversations that build trust. “The moral imperative is to do right by the patient, rather than the business of the hospital. It is best if a social worker, palliative care doctor, or ethicist can manage longer timeframes to have these thoughtful discussions with family surrounding end-of-life values of a patient,” says Clatty.

Loss of trust can happen if family members hear conflicting information from different clinicians. “Families will tell me that they feel like various doctors and teams are not on the same page, which makes them worried about how well everyone is working together to take care of their loved one,” says Hilary Mabel, JD, HEC-C, core faculty and healthcare ethicist at Emory University Center for Ethics.

A consulting team may share that the patient experienced improvement with respect to one organ system, but the primary team continues to signal that the patient’s overall prognosis remains poor. When Mabel consults on a case like this, she arranges a team meeting to strengthen consistency of messaging. A family meeting following the team meeting also is sometimes beneficial to acknowledge the perceived inconsistencies and demonstrate that teams now are working together.

Frequent physician turnover is another cause of loss of trust. On many services, the attending physician changes over once a week. “In some cases, it is more often because physicians need to switch for personal reasons or because the group has actually decided on a more frequent cadence. Families get worried that the nuances of their loved one’s condition or medical history are not fully appreciated by someone who just came on service,” says Mabel. Mabel has seen families decline to make a decision until a physician has been on service for several days. Some families hold off on making a decision until a particular physician is back on service. “These conditions seem to give families more peace of mind that their loved one’s clinical situation is really understood,” says Mabel.

Clinicians can build trusting relationships with surrogates by identifying the sources of distress that interfere with ethical decision-making. In some cases, surrogates’ burdens are compounded by financial concerns. “Clinicians are often less aware of surrogate burdens as their main focus is on the patient. And the costs of care are not often considered, partly because the costs are not often presented to the clinician at any point in the process of caring for a patient,” says Christopher Becker, MD, an assistant professor of neurology at University of Michigan.

Becker and colleagues surveyed 318 surrogate decision-makers of 256 patients with stroke.² Nearly half of all stroke patients had a family member who was very worried or moderately worried about affording the cost of their medical care. Lack of insurance and Mexican American ethnicity were associated with greater cost concerns. “Since families play such a large role in care and share the patient burden, we thought it would be important to evaluate financial toxicity in relation to surrogate decision-makers,” says Jessica Baker, another of the study authors. In other fields, such as oncology, studies have shown financial burdens are related to patient mortality.³ “While these particular primary outcomes have yet to be studied in stroke, it is clear that financial burden impacts patients’ experiences. Most neurologists can recall patient anecdotes describing financial stressors in the aftermath of a stroke,” says Baker.

The researchers wanted to understand the financial effects of stroke on surrogate decision-makers to characterize specific concerns and identify risk factors, with the goal of eventually developing tools and support resources for patients and their families. “It’s easy to overlook the financial side of things when you are taking care of a patient who has had a severe stroke. The first step for clinicians is to screen for financial concerns,” says Becker.

If the surrogate decision-maker reports financial concerns, the clinical team could refer them to a social worker or other resource for financial assistance. “But we can miss the opportunity to help if the financial concerns are not brought to light,” says Becker.

Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.

References

1. Armstrong C, Duke G. Surrogate decision-makers’ trust in health care professionals in the adult intensive care unit: A scoping review. Crit Care Nurse. 2025;45(3):23-32.

2. Becker CJ, Baker JE, Zhang G, et al. Financial concerns are common among family surrogate decision-makers of patients with stroke: A mixed methods study. Neurol Clin Pract. 2025;15(2):e200451.

3. Smith GL, Lopez-Olivo MA, Advani PG, et al. Financial burdens of cancer treatment: A systematic review of risk factors and outcomes. J Natl Compr Canc Netw. 2019;17(10):1184-1192.