After cardiac arrest, family members need support, too

Family members or loved ones who must make treatment decisions for people who have survived cardiac arrest benefited greatly from resources and interventions to help guide their decisions and provide support for them throughout the recovery process, according to preliminary research to be presented at the American Heart Association's Resuscitation Science Symposium 2023.

The meeting, to be held Nov. 11-12 in Philadelphia, is a premier global exchange of the most recent advances related to treating cardiopulmonary arrest and life-threatening traumatic injury.

According to the American Heart Association, cardiac arrest occurs suddenly and often without warning when the heart's electrical system malfunctions, which causes the heart to stop beating. People who experience cardiac arrest outside of a hospital setting and survive typically have some level of physical, cognitive and emotional effects, some of which can linger for months or years. Often a family member or a loved one must become a surrogate decision-maker due to temporary or permanent loss of brain function after the cardiac arrest.

"As systems, processes and education surrounding emergency procedures and treatment for cardiac arrest improve, the number of people who survive a sudden cardiac arrest is increasing," said Katie Dainty, Ph.D., a member of the American Heart Association CPR and ECC guidelines writing group and research chair in patient-centered outcomes at North York General Hospital in Toronto, Canada.

"While survival from cardiac arrest looks different for each patient, there are numerous decisions that must be made surrounding that person's acute and long-term medical treatment, psycho-social needs and recovery. In many ways, family members and surrogate decision-makers are 'co-survivors' of this life-altering event and it is crucial that we turn our attention to understanding their evolving emotional, physical and informational needs as they navigate their new life and roles."

Studies from two different research groups focus on supporting surrogate decision-makers for cardiac arrest survivors:

The tool to empower (TEMPO) Surrogate decision makers of comatose survivors of cardiac arrest: a pilot trial of a novel decision tool

In a study to evaluate the effectiveness of an informational pamphlet, researchers tested the Tool to EMPOwer Surrogate Decision Makers (TEMPO) brochure. They enrolled 41 families to determine if, after receiving the information, family members of people who had survived cardiac arrest, felt like they were more knowledgeable and better able to make decisions regarding their loved ones' care.

The family members completed a brief 8-question knowledge questionnaire on the day their loved one experienced cardiac arrest prior to being given the TEMPO pamphlet. They were then asked to complete the same questionnaire approximately 24 hours after reviewing the pamphlet.

Researchers questioned the participants on their knowledge, feelings of self-efficacy in decision making and acceptability of the pamphlet. Overall, they found that caregiver knowledge improved, and participants felt empowered to make decisions after reviewing the pamphlet.

About 85% of the study participants found the TEMPO pamphlet to be useful and 91% responded that it made choices they had to make concerning their loved one's care easier.

"Prior research has shown that families do desire information regarding the event that their loved one's have just experienced" said lead author Sarah Perman, M.D., M.S.C.E., an associate professor of emergency medicine at Yale University in New Haven, Connecticut. "Supporting decision makers during post-cardiac arrest care has been identified as an area where medical care is deficient, and looking ahead, we intend to conduct a larger trial of TEMPO that will test the parameters from this study, in addition to evaluating patient and decision makers' physical and emotional outcomes."

Study background:

• Three quarters of the study participants were women.
• Participants self-selected race/ethnicity and included 54% white people, 22% Black people and 24% Hispanic people.
• The participants' relationships with the patients varied with almost half (44%) being spouses. The other surrogate caregivers' relationships to patients were categorized as siblings (17%), adult children (17%) or parent (12%).

A prospective evaluation of indicators of psychological distress in surrogates of cardiac arrest survivors

This study assessed the prevalence of psychological distress among surrogate caregivers of people who survived cardiac arrest, and then determined what forms of resources were considered most helpful by the surrogates of cardiac arrest patients.

Each surrogate caregiver completed an assessment when the patient was discharged from the hospital. The evaluation was conducted by a medical professional and included questions from the Post Traumatic Stress Disorder (PTSD) Checklist 5, Generalized Anxiety Disorder-2 and the Patient Health Questionnaire-8.

The assessments indicated most of the study participants reported some form of psychological distress, with 66% experiencing anxiety; 29% experiencing characteristics of PTSD, and 57% showing signs of moderate depression.

"Past research has proven that surrogates and other family members are highly afflicted by psychological stressors of their loved one being hospitalized, and our results showed an abnormal amount of our study group with psychological distress because of the event," said lead study author Isabella Tincher, B.A., a research coordinator at Columbia University in New York City.

Eight potential interventions were also presented to the surrogate caregivers through a survey tool. Four of the interventions focused on information surrounding the patient's recovery and four of the interventions related to the psychological well-being and coping ability of the surrogates themselves.

Participants ranked their top choice among the eight interventions with 22% of surrogate caregivers ranking "increased access to the care team" as the most helpful intervention. The next most highly prioritized intervention was "increased information on potential recovery," which was chosen by 20% of the participants.

"Recovery from an acute event is a traumatic experience that affects all that witness and aid in the recovery," said Tincher. "While it is important to focus on the recovery of the patient, the patient is ultimately discharged from the hospital, so it is important that we are taking a holistic approach through assessing the social determinants of health that may be impacting the patient and their family."

Study background:

• The research was conducted from 2021 to 2023 and included 83 family members of cardiac arrest patients, who were considered surrogate decision makers in the study.
• Study participants self-selected gender and race/ethnicity and included 66% female and 41% of the participants were white people; 25% were Black people; and 31% were Hispanic/Latino people.