During his residency training, Timothy H. Amass, MD, ScM, often saw family members standing at the window, wringing their hands or appearing upset, in the room of a patient who was dying. It was as though they thought things they would normally do, such as holding the person’s hand, was not allowed in the intimidating ICU setting.
“All professional societies recommend getting families involved, but there’s not a lot of guidance on how to do that,” says Amass, an assistant professor of medicine in the pulmonary sciences and critical care department at the University of Colorado.
Many family members may suffer from various types of psychiatric disorders, including PTSD, after a loved one’s ICU stay.1 Problems may last for months or years. Families struggle with a loss of control, coupled with the need to make life-changing decisions and sudden changes of status. “I thought we could target the idea of control,” Amass says.
Amass and colleagues gave some family members an informational booklet listing many ways they could participate in the care of their loved ones (if they wished to). The list included putting on some favorite music, posting pictures, massaging feet, holding hands, and brushing hair. Families were encouraged to ask nurses if they wanted to do something if it did not happen to be included on the list.
“The message is: You know your loved one best. Almost anything is OK as long as you are not putting the patient or others at risk,” says Amass, the study’s lead author.
Researchers talked to 131 family members in the “usual care” group and 129 in the intervention group to see how having more control in the ICU affected their stress levels.2 They observed fewer symptoms of PTSD in the intervention group. Before the intervention, only about 30% of family members touched patients at bedside before the intervention. “After we gave them permission, it went to almost 70%,” Amass reports. “It’s a very little thing, but also very powerful.”
Amass says the intervention is a way to bring back the normalcy of what families ordinarily would do to care for loved ones, before ICU care existed and people routinely died at home. Making favorite meals or playing songs seems out of place in the high-tech, high-stakes, clinical ICU setting. “Hospitals sort of sterilized that, and we wanted to find a way to bring that back in,” Amass says.
Although the authors did not look at this specifically, Amass believes the intervention could reduce end-of-life conflicts because it gives families more control. “When people say, ‘We want you to do everything for our loved one,’ they don’t always mean aggressive treatments,” Amass notes.
People might be making that kind of statement just to ensure their loved one is treated kindly and compassionately. On the other hand, if families feel disconnected from their loved one’s care, they might demand more. This could include aggressive treatment that is not in the patient’s best interest.
“It is a really nice, simple, no-cost intervention that allows people who are stripped of their humanity in the moment to gain some of that back,” Amass offers.
For one family, this meant ensuring the patient’s hair was combed every day. The man always carried a comb in his shirt pocket, and the family’s gesture was meaningful to him. Combing the patient’s hair, using his own comb, became part of the daily nursing workflow. The simple intervention also meant a great deal to the family.
“The family felt like the nurses knew their family member better as the man he always was, as opposed to just the patient in the bed,” Amass says.
- Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: Postintensive care syndrome-family. Crit Care Med 2012;40:618-624.
- Amass TH, Villa G, OMahony S, et al. Family care rituals in the ICU to reduce symptoms of post-traumatic stress disorder in family members — A multicenter, multinational, before-and-after intervention trial. Crit Care Med 2020;48:176-184.