In 2016, the Society of Critical Care Medicine (SCCM) created the Patient-Centered Outcomes Research – Intensive Care Unit (PCOR-ICU) Collaborative, bringing multiprofessional ICU clinicians together to explore enhanced inclusion of families into ICU care. More than 60 ICUs participated, and still more wanted to get involved.
SCCM has now launched a new Family Engagement Collaborative. This unique shared learning experience will help ICU clinicians and leaders integrate positive family engagement in the ICU, building on the previous success of PCOR-ICU.
Participating ICUs will engage with subject matter experts as they modify existing family programs and build new initiatives based on audits and feedback. Members of the collaborative will support and encourage each other in an effort to push the development of new initiatives forward.
SCCM published “Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU” in the January 2017 issue of Critical Care Medicine. The guidelines present an increasing amount of evidence showing how critical illnesses affect not only the patient but the patient’s family members as well. It is often family members who are required to make stressful decisions about the patient’s plan of care because the patient is unable to participate in the decision process.
“Most family members—especially if they weren’t expecting to be in the ICU with their loved one—are super-overwhelmed, at least for the first few days,” said David Y. Hwang, MD, FCCM, who is an associate professor in the Division of Neurocritical Care and Emergency Neurology at Yale New Haven Hospital and will lead the Family Engagement Collaborative. “No matter how well you try to present things in those first 48 to 72 hours, what we find repeatedly from talking to families is that everything during those first couple of days is a huge blur.”
More than 50% of critical illness survivors have some type of disability after hospital discharge. A major caregiving burden is placed on the family members of these critical illness survivors. Approximately 25% to 50% of family members of critically ill patients experience psychological symptoms, such as acute stress, generalized anxiety, and depression, during and after a loved one’s critical illness.
Family members of ICU patients are placed in a challenging position. SCCM believes that it is up to the patient’s care team to help navigate these challenges. “A big challenge in ICU care is trying to set up a system so that family engagement naturally becomes a part of the culture in the ICU,” Dr. Hwang said. “In general, when things get busy in the ICU, it’s natural for things to become organized in a way that I would call provider-centric—convenient for clinicians and nurses and the hospital staff but maybe not the best for patients and especially their families.”
One of the ways that Dr. Hwang has seen improvements in family engagement is by asking family members what type of help and support they felt they needed or were not able to receive. In his role at Yale New Haven Hospital, Dr. Hwang helped oversee the Neuro-ICU Patient Family Advisory Council that allowed patients and their families to talk about the ICU experience and what enhancements could be made.
ICUs are incorporating family members into the daily care process in other ways too. The Children’s Hospital of Alabama introduced ICU diaries in the pediatric ICU that featured a combination of free writing areas and questions for family members. The St. Charles Medical Center in Bend, Oregon, USA, instituted more flexible visiting hours to give family members more freedom to spend time with their loved ones. Each institution may have a different tactic, but the overall goal remains constant—find ways to keep family members engaged with the ICU experience.
“The message is that every unit has different local needs,” Dr. Hwang said, “and the idea be-hind the collaborative is we can be a collection of sites focusing on family engagement and trying to advocate for the agenda.”
To help members better understand what families of ICU patients go through, the Family Engagement Collaborative is welcoming Kimberly LaRose, MEd, IMH-E, to serve as an advisor and faculty member for the collaborative so she can share her expertise on engaging families and providing patient- and family-centered critical care. Mrs. LaRose, who is a family advisor to the pediatric ICU at New York Presbyterian Komansky Children’s Hospital, is the mother of Jake LaRose, who, received SCCM’s 2018 ICU Heroes Award, after surviving 99 days in the pediatric intensive care unit after suffering from acute renal failure.
The collaborative will run for 10 months, beginning in the fall of 2019. Collaborative meetings will take place via monthly conference calls, and educational webinars will be offered and made available online. Teams will choose a single-focus initiative to yield clear, measurable, and reproducible results. The measurable component is particularly important, Dr. Hwang explained, to determine whether a new initiative is having the desired impact.
“There are a lot of initiatives that one can put forth in the ICU that we might assume families might like or benefit from, but it may not actually be the case,” Dr. Hwang said. “It’s possible we may not be having a benefit, or maybe something we put forth has unintended consequences.”
That is what happened to Dr. Hwang several years ago. His unit implemented specific times each week when the on-service attending physician and nurse manager would visit with the families of each ICU patient. The goal was to provide the families with the latest information about how the patient’s care was progressing and also show patients that ICU leadership would be present at the same times every week.
Instead, the team found out via survey responses that some family members were potentially dissatisfied with the program because they often were not able to participate at the specific time the leadership was available.
So how do you launch a successful family engagement initiative? Dr. Hwang offered a few pieces of advice:
- Build a team in your local unit where you will find some champions who are generally excited about family engagement.
- Recruit family members for participation. It helps to have varied perspectives.
- Try to get hospital leadership to see the value of your initiative. “Getting them on board and 100% supportive of your project makes a huge difference,” Dr. Hwang said.
- Take advantage of the variety of tools available to SCCM members, such as the Gap Analysis Tool that helps you figure out your needs based on the guidelines you want to implement.
Dr. Hwang also cautions anyone thinking about starting a new family engagement initiative to recognize that it takes a lot of time to get a program going. “Yes, you could do it on your own, but our hope and experience is this new collaborative will be a shared learning experience,” Dr. Hwang said. “It promotes the chances for success and makes the experience of putting together these activities more efficient and more engaging.”