By Stacey Kusterbeck
As a clinician caring for patients with chronic critical illness, Sarah Andersen, MD, MS, observed that achieving meaningful goals of care decisions seemed to be more challenging than for other patients. “One of the challenges is that patients with chronic critical illness are often too sick to express their values and participate in decisions,” says Andersen. Also, because their hospital stay is long, there often are many clinicians involved in the patient’s care. Those healthcare providers may have different opinions on the best treatment path or prognosis.
Andersen and colleagues wanted to better understand the challenges of facilitating goals of care discussions for patients with chronic critical illness. The researchers interviewed 29 intensivists from six institutions about how they facilitate decision-making for patients with chronic critical illness.1
Participants described a complex process that required a great deal of preparatory work. The intensivists talked about the need to collect information on previous conversations and events. Often, it was necessary to schedule multiple family meetings. “We were struck by the amount of preparatory work clinicians felt was necessary before they could engage patients and families in goals of care decisions,” says Andersen, an intensivist at the University of Alberta. Andersen conducted the study as an National Institutes of Health postdoctoral research fellow at the University of Pittsburgh Department of Critical Care Medicine’s Center for Research, Investigation, and Systems Modeling of Acute Illness.
Clinicians stressed the importance of building strong relationships with patients and families. Many of the intensivists described goals of care decision-making in chronic critical illness as an iterative process that could take weeks. “This process can take weeks for several reasons,” says Andersen. Clinicians need enough time to get to know patients and families and to build trusting relationships. Also, clinicians need time to read through all the medical records to determine what events have transpired in-hospital. Often, previous conversations about goals of care have already taken place. The intensivists reported that many times, that important information was not well-documented and was difficult to find in the medical record.
“As clinicians, we have an ethical obligation to ensure that treatment decisions reflect patient values,” underscores Andersen. Clinicians also are ethically obligated to provide patients and families with the best possible information and support when navigating serious illness.
“Engaging in thoughtful shared decisions about goals of care demonstrates respect for patients’ autonomy and best interests at a time of great vulnerability,” says Andersen. This complex and time-consuming process can be extremely challenging in a busy intensive care unit (ICU). “But it is one of the most important aspects of our job,” says Andersen.
Clinicians also need to be aware of how health systems can affect their ability to engage in ethical decision-making. For example, clinicians have an important role to play in developing solutions to system-level challenges, such as inadequate documentation of patients’ previously stated values and wishes.
Participants were clear that without strong relationships, it is very difficult to engage in goals of care decisions. Ethicists can help with this situation, says Andersen. “Ethicists can play a key role in bridging fractured relationships between patients, families, and clinicians that arise from mistrust and poor communication.”
Ethicists also can ensure that all perspectives are fairly represented in decision-making. “This is particularly valuable in chronic critical illness, since there are often so many people involved in a patient’s ICU journey,” observes Andersen.
- Andersen SK, Yang Y, Kross EK, et al. Achieving goals of care decisions in chronic critical illness: A multi-institutional qualitative study. Chest 2024; Feb 15:S0012-3692(24)00161-2.
