Conversations about one’s fundamental values, hopes for the future, goals for health care in extreme situations, and treatment preferences for various future scenarios are best held at a leisurely pace, not in the midst of a crisis. These wide-ranging discussions may require multiple iterations as people circle around serious yet hypothetical and far-distant prospects. Generally speaking, earlier is better. But what if these conversations about a person’s future goals of care never happen until the crisis hits—when the future is emphatically now? Perhaps the individual lands in the ICU following a traumatic accident or flare-up of disease, no longer able to participate in conversations about their treatment wishes and the values that could help to inform them.

With the COVID pandemic, many individuals have found themselves on an express train to the ICU mere days after exposure to the deadly virus. Sudden onset of acute respiratory distress syndrome related to COVID means they’ve had scant opportunity to talk about these things, either in the ambulance or a crowded emergency room, before landing in the ICU. And now, because of severe respiratory compromise, they are on a mechanical ventilator, unable to speak, likely sedated.

What is the relationship between goals-of-care conversations and critical care? Richard Leiter, MD, an attending physician on the adult palliative care consultation service at Dana Farber Cancer Institute and Brigham & Women’s Hospital in Boston, found himself redeployed to the ICU during the critical surge of COVID cases in Boston during the Spring of 2020. Communication about COVID patients’ goals of care suddenly became very important—even though there was a lot of prognostic uncertainty, especially in the early days of the pandemic, and many patients had poor prospects for recovery.

Once a patient gets admitted to the ICU, advance care planning is no longer advanced, he says. “Mostly it’s in-the-moment decision-making.” And more often it’s family members who are called upon to represent the patient’s values and preferences as surrogate decision makers, formally designated or not.  They are asked what they know about the patient’s previously expressed feelings regarding treatment options. What would be most important to him or her at this time of crisis? What are they now hoping for regarding their loved one’s treatments and prospects? How can the treatment plan be aligned with what the person would have wanted?

“Sometimes, I might say to my patients, ‘This is what advance care planning is meant to do—help us understand what would matter to your loved one at this time,’” Dr. Leiter explains. For some patients in the ICU, there is an advance directive document on file in the hospital’s electronic health record. Perhaps there is also a medical note reflecting a conversation with a physician somewhere along the line—although that likely happened before the pandemic changed everything. “For patients for whom we have good documentation of their wishes, it’s easier for us, and easier for the family,” he says. “It can alleviate some of the stress they’re feeling.” 

Of course, advance care planning done long in advance doesn’t answer all of the critical questions that need to be answered right now. “You can’t predict every future situation, but what we can do is elicit what is known about the patient: What are their deeply held values? What is important in their life?” Dr. Leiter says. “That can help guide us in situations that would have been hard to predict.”

Extreme Unpredictability 

COVID has been an extraordinary circumstance that no one could have predicted. Especially in the early days of the pandemic, long-term prospects were very poor for those infected patients who experienced severe respiratory distress, especially if they ended up on a ventilator as an immediate life-saving measure.  Things would change very quickly, and there was little chance to clarify with them whether they would even choose to be put on a ventilator or other high-tech, life-sustaining treatment if they knew that their chances of survival or meaningful recovery were low.

“I think it's important to have these tough conversations before you think you need them, if at all possible,” Dr. Leiter says. “That’s easy to say; we know these conversations are emotionally fraught. But the more people are able to communicate their values to the important people in their lives, it can be enormously helpful to doctors, families and friends in a crisis.” As the pandemic starts to abate—although individuals are still succumbing to COVID in the ICU—there will be opportunities to look back on what happened and consider the implications going forward. Our images of crowded emergency departments, overworked hospital staff, makeshift ICUs or concerns about possible shortages of ventilators might reshape our ideas about what kind of care we would want in a similar crisis.

Hospitalizations have a significant daily impact on cost, quality, and experience for members and their family. Unfortunately, due to lack of preparedness, important care decisions are often made poorly or delayed during this critical time, resulting in higher costs, increased utilization, and unfavorable outcomes.

Iris Inpatient Care Planning

Iris Inpatient care planning supports members and their families through difficult decisions during a crisis by offering care planning services for hospitalized members to alleviate conflict and reduce unwanted care when members don’t have directives and urgent decisions need to be made. Our multidisciplinary team of healthcare experts provide the experience, capabilities, and tools to assist in navigating the hospitalization experience.

  • Real Time Facilitation – Our experts provide real-time, tailored and experienced care planning facilitation when individuals and their families need it most.
  • Real Time Facilitation – Our experts provide real-time, tailored and experienced care planning facilitation when individuals and their families need it most.
  • Conflict Resolution – The Iris process helps identify frustration, confusion, anger or  concerns and supports involved parties to work toward a resolution.

Members and families have less anxiety when they are better prepared in these high stress moments, which allows for a better overall experience aligned with their goals. Contact Iris to learn more about our Inpatient Care Planning.