Getting Patients’ Loved Ones off the Sidelines: The Family Involvement Menu

Years ago, I felt firsthand what it was like to be the helpless family member of a hospitalized patient. My mother had undergone surgery in a hospital nearly three hours away, and things had not gone well. She was unconscious when I arrived in the intensive care unit. One of the first things I noticed was that her lips were chapped. As I moved to apply lip balm, a perturbed nurse told me that such care was off limits. Later, I tried to massage my mother's shoulders, but I was told to stop, as it might agitate her. My mother's hair was parted on the wrong side, which I knew would have driven her mad. When I asked if I could brush her hair, the nurse looked at me as if I were crazy. The message was clear: I couldn't do anything but sit there.

Returning to The Johns Hopkins Hospital ICU where I was a nurse, I wondered if the families of my patients might experience similar feelings. Did they truly want to sit in the corner of the room, reading the newspaper as I took care of their loved one, or did they want to get involved? We might have told them that they were part of the care team, but did they feel it?

So I started asking them what they might want to do to contribute to the patient's care. Were they comfortable helping their loved ones to walk? Did they want to brush their teeth? Could they shave the patient? Would they like to provide distractions to the patient through books, music or other pastimes?

The result was the Family Involvement Menu, a simple laminated sheet that gave family members options for how they could help. Now, after families get settled on the unit, we introduce them to the menu, describe the options and let them select which, if any, they would like to perform. Some require a little training from nursing staff, while others take none.

The tasks that they can perform not only help them to feel engaged as care team members, but they can also contribute to quality care. We know, for instance, that oral care can reduce bacteria that can contribute to ventilator-associated pneumonia. We also understand that getting patients moving earlier in the ICU can reduce their chances of experiencing delirium, post-ICU weakness and post-traumatic stress disorder-like symptoms that haunt them well past their hospitalizations. Nurses certainly perform these tasks, but when family members do them, it frees up nurses to do other things. Oral care alone might take five to 10 minutes per patient each time, occurring as often as every two hours. Add it up and it can be a significant time savings.

After multiple versions, we finalized the Family Involvement Menu, and it was published recently in the Joint Commission Journal on Quality and Patient Safety. Since it was first rolled out several years ago, the tool has generated significant buzz, both within the hospital and among those who have learned about it at conferences and elsewhere. We have collaborated with other teams to adopt it. Through Project Emerge, a pilot project that aims to reduce multiple harms in the ICU, the menu has been brought online. Using a tablet computer, family members can learn what care activities are available, watch tutorials for those activities and select which ones they want to perform.

Along the way, we've learned valuable lessons about how to make it click on a unit. Below are some of the major ones.

Be Honest: Is Your Unit Ready?

As a first step, look inward to assess and understand the current culture of patient- and family-centered care in your clinical area. Has your unit implemented visitation 24 hours a day? When the health care team conduct rounds, are family members and patients encouraged to actively participate? Has the unit adopted other patient- and family-centered practices? If you're answering no to these questions, your culture may not be ready to support this new way of engaging families.

Get Staff on Board

This is probably the biggest issue. There are nurses who will instantly jump at this opportunity and others who will resist change. Some may never adopt new practices.

One of the strategies that we used to "convert" nurses to this new way of engaging patients was to present a case study. In this scenario, they were asked to put themselves in the place of a patient whose stay had been unexpectedly extended when a laparoscopic gall bladder removal had to be performed instead as an open surgery. What would they want their loved ones to be able to do for them in the hospital?

The answers we received were the kinds of things that the Family Involvement Menu encourages families to do. I pointed that out to the nurses and asked them if they would try using the menu for one week, just to see how it went. You will never get everyone to participate wholeheartedly, but by helping people to empathize — to see themselves as patients and family members — you can win some over.

Customize Your Menu

Please don't take my ICU's Family Involvement Menu and plop it into your unit. Make the menu your own.

In some care settings, such as pediatrics, family involvement is the norm. Oncology patients also typically have family members who are at their side for their journeys, and who are accustomed to helping with care practices because they already do them at home. On other units these tasks are not expected. To find out what works best for you, put together two lists: one showing the activities that nurses say they would be comfortable letting family members do, and the other showing those tasks that family member say they would be willing to carry out. Then marry the two lists and see what they have in common. This exercise can also help with staff engagement.

Engage Families

On the Weinberg ICU, where this menu was first introduced, we created a mini-script for nurses who are uncomfortable having this conversation to help them introduce the concept. We also reinforced the importance of timing. You may not want to share the menu immediately upon admission, when family members are still sifting through a thick admissions folder. Waiting until the second day of the hospitalization may be more effective. It's also important to reintroduce the menu at multiple points in a patient's stay. When a patient is first admitted, family members may not want to get involved in daily care activities. Once they realize that the hospitalization might last weeks or even months, they may reconsider.

Be Flexible

Recognize that your first efforts may not succeed, and be willing to pivot to try a different approach. You may find that the wording is wrong, or that three items on the menu are leading to dissatisfaction. The more you show your willingness to make it work for your local setting, the greater the buy-in.

The benefits of engaging families may go beyond the ICU or hospital floor. It can help prepare family members for transition of care. Patients are leaving the ICU sicker than in the past, onto floors where there are fewer nurses for each patient. Later, as they head home from the hospital, many of these family members will have no choice but to perform these tasks for their loved ones. The time is now to consider this opportunity to include family members and caregivers as part of the health care team. In fact, they may be one of the most valuable resources in the room.

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Learn More about the Family Involvement Menu

Watch a webinar from June 2015, as Rhonda Wyskiel and Bickey Chang discuss the creation of this tool and how to overcome implementation challenges.[/themify_box]