Even before COVID-19, most of us could expect to be touched by the intensive care unit (ICU) at some point in our lives — whether as patients, or as family members of patients. The COVID-19 virus has increased that likelihood, and put many families in the unimaginably difficult situation of being separated from critically ill loved ones because of hospital visitation policies.
But the ICU has always been hard for family members, even when able to be present. Desperately worried, they’re plunged into an alien and intimidating world — and busy doctors and nurses have little time to provide orientation and full explanations. A spouse or other family member may have been the most important person in the patient’s world, but suddenly that person feels helpless and peripheral — forgotten in the waiting room.
What many family members don’t understand is that they have a powerful, central role to play as their loved one’s advocate. As an ICU doctor, I’ve seen this done with great effectiveness, time and time again.
Here is some advice for you, if you have a family member in the ICU:
1. Provide important information and continuity. Many healthcare professionals from different specialties will be taking care of your loved one, usually in shifts. The downside of this highly specialized care and teamwork is lack of continuity. You can help provide that, as perhaps the only person at your loved one’s bedside throughout, and certainly the only one present before the ICU stay.
Bring medical records and medication lists to share with the doctors. Keep track of the events of the hospitalization in a notebook, and be ready to share them with new team members. Trust your gut: you may be the first to recognize that something has changed or isn’t quite right. During the pandemic, you can still provide important information and continuity remotely.
2. Aid in preventing complications. It’s important to treat the cause of the illness, but it’s just as important to prevent complications, such as infections that spread in hospitals. This requires meticulous attention to “housekeeping” details that, because they may not feel as urgent, sometimes get forgotten. You can help keep these issues front and center, and there are two that are particularly important.
First, any piece of plastic in the body is a potential conduit for infection, and the longer it stays in place, the greater the risk. This includes large IVs, breathing tubes, and urinary catheters. Every day, ask caregivers whether it might be possible to remove a piece of plastic.
Second, offer to help your busy nurses with moving your loved one as much as possible. Some patients are so sick this may mean just turning them from side to side and gently stretching and bending their limbs for them. But many patients, even those on ventilators, can get out of bed to a chair or even stand and walk. Keeping patients moving helps to prevent pneumonia, blood clots, pressure ulcers, deconditioning, and other problems. If you can’t be present to help, you can still ask the nurses about their plans for mobilizing your loved one on a daily basis.
3. Help orient the patient. ICU patients are sometimes frightened, confused, sleep-deprived, and even delirious. If you can be there in person, you can provide comfort and orientation. Don’t be alienated by the tubes and machinery — pull a chair to the bedside, and hold your loved one’s hand. Talk to her soothingly and tell her where she is, the day and time, the names of her nurses and doctors, what’s going on at home with family or pets, and other orienting information. Make sure she has her glasses and hearing aids, if needed, to improve communication.
If she can write or point (but not speak), bring in a pad of paper or “communication board” with words she can point to. You may want to bring in eye shades, earplugs, or a white noise machine to help her get some sleep.
The pandemic makes all this much more difficult, but hospitals do their best to facilitate video conferencing and other remote communication, and you can make sure your loved one has communication and sleep aids at the bedside.
4. Make decisions on your loved one’s behalf. If your loved one is unable to make decisions for herself, you may be called on to help make them on her behalf. Sometimes these decisions feel like a terrible responsibility. It may help to remember that you aren’t deciding what you would want for your loved one, but trying to help the doctors understand what you think she would want. Sometimes, what you and your loved one would want will be quite different, and making the right decisions requires great courage and selflessness.
Lara Goitein is a pulmonary and critical care physician in Santa Fe, NM. She is author of the book, The ICU Guide for Families: Understanding Intensive Care and How You Can Support Your Loved One (Rowman & Littlefield, Dec. 1, 2021).