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When intensive care unit (ICU) hospitalists think of patient-centered care, their mind zeroes in with laser focus often on the patient — and only the patient.

The job of the ICU team is to stabilize the critically ill individual in front of them, use evidence-based practices, and move toward recovery. But patients who are critically ill don’t come in a vacuum. They come with families and other primary caregivers, whose own emotional state, knowledge of the patient’s baseline, and strong desire to help can improve the care process or, paradoxically, derail it.

In fact, the role of these caregivers is so important that when the Society of Critical Care Medicine released its Guidelines on Family-Centered Care for Adult ICUs: 2024, it “reaffirmed the importance of family presence policies as default practice and suggested options for family attendance on rounds and participation in bedside care.”

Despite the fact that the Society’s recommendations are backed up with extensive studies, and would seem to be common sense given the depth, breadth, and recency of caregivers’ experience with the patient at hand, they brush up against what has been standard practice in most ICU settings for decades.

“The reasons to support families are multiple,” said Giora Netzer, MD, vice president and chief experience officer for the academic-focused 11-hospital University of Maryland Medical System (UMMS) and co–vice chair of the task force charged with producing the guidelines.

“We can talk about things from a humanistic thrust, but the truth is that there’s also very good clinical rationale,” he said. “When we support families better in our patients who survive, they’re going to have better functional outcomes. In our patients who will not leave the ICU, who will succumb to their illness, we’re better able to guide (caregivers) to matching care to the patient’s needs, which is also good for care and reduces suffering.

“The why it isn’t just the abstract ‘It’s the right thing,’ it’s the good thing in terms of clinical outcomes.”

In implementation, there may be a bit of a disconnect, however: Incorporating family members and other lay caregivers harmoniously into medical and other ICUs is a concept contrary to that encountered by so many practitioners in this space. A 2009 study published in American Journal of Respiratory and Critical Care Medicine showed that as many as 70% of ICU team members had faced conflicts with family members or other lay caregivers.

Respondents ranked disagreements with caregivers among their top three on-the-job stressors, with team members indicating that family members often want to “take control” or “second-guess interventions,” especially those that involve invasive lifesaving measures. Friction of this sort casts caregivers as obstacles to patient care in the eyes of hospital physicians, who are juggling scarce time and cognitive overload, and thus leads the clinician to exclude the patient’s primary caregiver from important discussions. The mistrust grows from there and so does the conflict.

“I’ve seen this firsthand. You have families disputing diagnoses, questioning treatment plans, and sometimes just physically being in the way when you’re trying to provide care,” said Kimberly Best, RN, a dispute resolution expert whose experiences working in the critical care environment for two decades led her to found Best Conflict Solutions, LLC. “Even with the best intentions, these people can even interrupt the care of other patients by insisting on attention for their loved one.”

Family members can be such a triggering subject within the cohort of ICU team members that UMMS’s Netzer has on several occasions drawn a comparison between the sometimes negative outlook on patient caregivers and common euphemisms for an off-color word. Writing about the topic of families in the highly charged ICU setting as “the f-bomb” is Netzer’s way of loosening up the clinical team for an open discussion of prickly feelings regarding a challenge they were never trained to handle.

“My journey is not unlike that of a lot of ICU clinicians: We love the acuity and the pace, we like the armamentarium of understanding physiology and advanced therapeutics and all the support that we have, and bringing that to bear — that’s the happy place. The family — that’s not historically the happy place,” said Netzer, who’s responsible for leading UMMS’s patient experience program in serving and partnering with patients and families.

There are several reasons for that, Netzer said. One is “the long-standing and arbitrary demarcation we make between ‘hard skills’ and so-called ‘soft skills.’ We’re not trained in it, and so we’re not comfortable with it. Also, we’re in situations of literally the worst moments of human beings’ lives, we’ve had conflicts with families, and that can be emotionally devastating.”

It can cause doctors to reflexively think negatively toward families.

“There’s a good number of really excellent, well-meaning, well-intentioned clinicians, where if you bring up families, that first instinct is going to be ‘Mmmm…I don’t want to talk about that.’”

How then do ICU care teams manage these situations? What if this fraught dynamic could be reframed to build trust and collaboration with the primary caregiver? What if they became allies rather than liabilities?

From Roadblock to Ally: The Shift in Perspective

The hospitalist’s role in the treatment of a patient who is critically ill has a hard stop at the facility’s threshold regardless of outcome, whereas the lay caregiver is with them for the long haul. Making an investment in the patient’s closest ally on the front end may seem laborious and feel like just one more thing to do, but data show that it pays off huge dividends.

“Instead of seeing family members as obstacles, I’ve found tremendous value in reframing them as potential team members,” said Best, the conflict management specialist and former critical care nurse for two decades. “These are the people who know the patient’s preferences, their typical responses, their history in ways that aren’t always captured in the medical record. Acknowledging the emotional needs of the family member and getting them active in the care — in appropriate ways — helps take the burden off of me and helps them feel useful.”

Best recalls working with an ICU team struggling with a particularly involved family.

“The daughter of a patient was constantly questioning everything, and the staff was getting frustrated,” Best said. “We implemented a simple change — inviting her to participate in daily rounds, giving her specific ways she could help with her father’s comfort, and asking her to share her observations about subtle changes she noticed. The transformation was remarkable — she went from being seen as ‘difficult’ to becoming an invaluable resource for the team.”

Best said that while this approach admittedly takes an upfront investment in time and resources from the ICU team, quantifiable improvements in patient care are plentiful: Patients receive more personalized care, their caregivers experience less anxiety during and after their time in the ICU, and patients and their caregivers report greater satisfaction with care. She said lawsuits decrease as well, while healthcare providers also report greater job satisfaction.

How to Become Collaborative

Here are some steps to consider in working toward a more caregiver-positive ICU environment.

Acknowledge Their Role

A patient’s primary caregiver often feel powerless in the high-stakes ICU. At UMMS, Netzer and his team have elevated their role with their ICU teams, institutionalizing the policy that primary lay caregivers are a feature in the ICU teams, not a bug — they are central to the locus of care. “Families are not visitors. Families are part of our patients’ personhood. If anything, we are the visitors in our patient’s lives,” he said.

The UMMS policy guarantees, among other things, that family members are able to spend the night in the ICU to support their loved one if they so choose, unless there is a reason it would be medically contraindicated.

Uncover Goals of Care Together

Having conversations about the patient’s baseline function, quality of life, and future priorities allows the patient’s primary care person to align expectations with reality. Open-ended questions can be helpful in these discussions, especially if the patient is nonverbal.

Open-ended questions can reveal whether the family prioritizes more time or quality of life, guiding conversation toward meaningful interventions.

Assign Constructive Roles

Zac Shepherd, a longtime ICU nurse and currently an ICU travel nurse with Aya Healthcare, said that with their chaos and frantic activity, ICUs can be incredibly dehumanizing places. He said that asking a caregiver for their input and reminding them that “we’re all in this together” can reinforce some small sense of control over the events that are transpiring.

Giving an anxious or overwhelmed person a specific, constructive task can provide them with focus and purpose. Best offers some examples:

• Involve the family in comfort care like a gentle massage or reading to the patient
• Ask them to maintain a communication log to share updates with extended family and friends, which reduces repeated questions to staff
• Invite them to participate in mobility exercises when appropriate, with proper guidance

Here are some additional suggestions:

• If a primary care person is fixated on medications, invite them to keep a journal of changes and questions, then provide a dedicated time to ask these questions during the care team rounds.
• If a patient is on a fluid restriction but is allowed to have ice, consider asking the caregiver to be in charge of providing their patient with ice. Sometimes, the simplest tasks are the best.
• Perhaps the patient loves a particular type of music. Ask the primary caregiver curate a playlist that they can listen to (at a reasonable decibel level, of course) during visitation hours.

Élie Azoulay’s research shows that families are more likely to act disruptively when they feel uninformed or excluded from care discussions. Improving communication through proactive education and structured family meetings was shown to reduce conflict and enhance collaboration between families and ICU staff. So following up on any disruptions at a calmer time later in the day with a structured meeting that hinges on clear, effective communication, not just about the patient’s condition and treatment plan but also to set expectations about how the ICU works, can go a long way toward eliminating issues.