As Jane’s 7-year-old daughter, Kelsey, lay in the intensive care unit, shaking from seizures, Jane needed people to listen to her and trust her. Jane — not a textbook — knew which of the five different seizure medicines worked best for Kelsey, and which had little effect. But the doctors weren’t paying much attention to “just a mom.” With help from her patient navigator, Jane convinced the doctors to stop treating Kelsey like a seizure disorder and start treating her like Kelsey.
Navigators guide patients and their families as they move through the health care system. While interactions with navigators have traditionally happened outside of hospitals, particularly for cancer patients, their services are also needed for people in the hospital and their families.
In pediatric intensive care units, where I have worked for 15 years, parents and members of the health care team describe the importance of having a “point person” who can guide parents facing life-changing decisions for their child. To fill that need, I have partnered with parents, physicians, social workers, chaplains, and other health care professionals to develop a program called PICU Supports. It uses a navigator to provide emotional, decision-making, and communication support to parents of critically ill children. A study supported by the Patient-Centered Outcomes Research Institute to test the impact of the program is underway.
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While we don’t yet know how much PICU Supports will help families, the use of navigators in adult intensive care units is promising. A study published last month in the American Journal of Critical Care showed that a nurse navigator empowered to help family members of adult intensive care patients make decisions was well-received by the medical staff and recommended by families.
Earlier this year, another study showed that a facilitator trained to support communication between clinicians and families — and mediate conflict if needed — lessened symptoms of depression in family members of critically ill adult patients. The same research group just published data showing that a full-time communication facilitator in an adult intensive care unit can save up to $58,400 per week in total costs.
The emergence of patient navigator programs is partly a reaction to the increasing specialization in health care. The barrage of new medical knowledge and innovation, while leading to life-saving advances, has created a culture of super-specialized clinicians. In pediatric cardiology alone, for example, there are specialists in congenital heart disease, rhythm problems, imaging, procedures, and heart failure.
But medical problems don’t occur in isolation. Super-specialization leaves patients with multiple health care providers and few solutions for ensuring good communication among the team.
When I make plans for my patients in the pediatric intensive care unit each morning, discussions often include the bedside nurse, a resident and fellow (doctors in training), several subspecialists, a pharmacist, and a nutritionist. As the day goes on, I may talk with many others, such as a radiologist about imaging or a surgeon about an upcoming procedure. I am often left wondering how this all gets translated to my patients’ families.
We do our best to include families and patients (when appropriate) in our discussions. Yet for most parents, coming to grips with having a child in the intensive care unit is as much as they can handle. Few have the bandwidth to wade through the barrage of information in any meaningful way or ensure that the doctors are talking to one another.
That’s where patient navigators come in. They help coordinate a patient’s care and help him or her and family members understand information. But their influence extends beyond that. They also provide psychosocial and spiritual support.
Once intensive care is no longer needed, patients are still at risk for physical, cognitive, and mental changes that can affect their quality of life. Family members can also develop psychological problems like anxiety or depression. Navigators can help mitigate these long-term problems by addressing the emotional challenges associated with being hospitalized, particularly in the intensive care unit, and ensuring that decisions made during hospitalization fit with the goals and values of the patient and their family.
We don’t yet have all the answers about the value of patient navigators. It isn’t clear, for example, who makes the ideal navigator. Many programs use nurses or social workers, but spiritual care providers (also known as chaplains), or even former patients may also be a good fit.
Another unknown is whether we need to add more people to already large complex health care teams, or simply better use existing non-physician health care providers. Social workers, for example, often spend the bulk of their time helping with logistics, like obtaining parking passes or filling out paperwork. While such assistance is essential, it underutilizes their unique psychotherapy and counseling skills.
Sadly, many medical teams do not include essential psychosocial support providers, like social workers and spiritual care providers. In a survey of 448 oncologists, only half reported having someone to provide mental health support for their patients. In my field, it is not uncommon for one social worker to cover 40 to 50 patients and their families each day. Some patients and families need hours of care at a time, leaving many without the careful compassionate assistance they need.
Finally, patient navigators aren’t a substitute for better communication between physicians and their patients or families, and each other. As other experts have argued, educating physicians about communication should be emphasized as much as learning medical knowledge or practicing procedures.
Navigators may be essential to building trust and helping parents like Jane feel heard and understood. But we must also consider the importance of a well-staffed, coordinated, educated, multidisciplinary health care team that, in addition to doctors, includes at the very least nurses, social workers, and spiritual care providers.
Pseudonyms used to maintain patient anonymity.
Kelly Michelson, MD, is an attending physician in the pediatric intensive care unit at Ann & Robert H. Lurie Children’s Hospital of Chicago, associate professor of pediatrics and director of the Center for Bioethics and Medical Humanities at Northwestern University Feinberg School of Medicine.