There is an ongoing focus on the need to deliver high-quality patient and family-centered care in a variety of clinical settings.
“But exactly what that meant, particularly in the ICU, was unclear,” says Catherine Auriemma, MD, a fellow in the division of pulmonary and critical care medicine at the Hospital of the University of Pennsylvania.
Commonly used metrics to evaluate the quality of ICU care are length of stay, infection and mortality rates, and ventilator-free days. “While these metrics are important, we didn’t know if they would tell the whole story of how patients and family would define a good outcome,” Auriemma recalls.
To learn more, researchers from Penn Medicine’s Palliative and Advanced Illness Research Center interviewed 19 ICU survivors and 30 family members in 2012 and 2013.1
“Survival alone wasn’t uniformly the most important outcome,” says Auriemma, the study’s lead author. “Function and quality of life were sometimes more important.”
About one-quarter of participants said survival was the most important outcome. However, most participants deemed some outcomes worse than death, such as severe physical disability, dependence on machines, constant severe pain, and inability to communicate.
Survival is the most commonly used outcome measure in clinical trials of ICU patients, according to Auriemma. “Our findings underscore the need for researchers and clinicians to develop more nuanced outcome measures that incorporate function and quality of life,” she says.
The study’s findings on what is most important to patients and family raises the question on whether clinicians are ethically obligated to share information about function and quality of life outcomes. “The answer is unclear,” Auriemma observes. “Prognostication of functional outcomes is far from perfect, and quality of life is highly subjective.”
Patients and family care about function and quality of life, yet clinicians’ ability to give accurate predictions and recommendations is limited. One reason is long-term functional outcome is individualized. “Some people can adapt tremendously. People may think things are going to be a lot worse than they are when they experience a loss of function,” Auriemma explains.
Individuals often cannot accurately predict how a future functional state might affect them. Many might tolerate future levels of disability far better than they would have anticipated.
“While this complicates the use of expected functional and quality of life outcomes in real-time decision-making, it stresses how we must start keeping track of these outcomes in order to improve our ability to predict them and provide patients and families with information they clearly want,” Auriemma says.
- Auriemma CL, Harhay MO, Haines KJ, et al. What matters to patients and their families during and after critical illness: A qualitative study. Am J Crit Care 2021;30:11-20.