Clarity and Consistency Help Families Facing Serious Medical Decisions
February 1, 2023
When Kristen Pecanac, PhD, RN, was conducting her dissertation work on communication during family meetings, a physician recounted a story about the family of an ICU patient. The family kept insisting clinicians do everything possible for the patient, who required multiple life-sustaining treatments to survive. After many conversations, a clinician reviewed the plan of continuing life support.
The family was baffled; they had no idea the patient was on “life support.” Family members stated the patient would want everything except for “life support.” They subsequently decided to withdraw the treatments.
“This story shows how misunderstandings can happen,” says Pecanac, an assistant professor at University of Wisconsin-Madison School of Nursing.
Different clinicians use similar-sounding terms, such as life-sustaining treatments, life-saving treatments, life support, and life-prolonging treatments.
“A major ethical concern is that families may make different decisions based on how the decision is presented, and the words that are used by the clinician,” Pecanac says.
To learn more about this, Pecanac and colleagues surveyed 366 adults with experience making decisions about major medical treatments (e.g., dialysis, major surgery, hospitalization, resuscitation, ventilators, or hospice care).1
Respondents answered open-ended questions, such as “What was the most difficult decision that you had to make?” Respondents recognized major medical treatments could result in adverse consequences, such as pain or an undesirable neurologic state, and that treatments could be useless because the patient’s death might be inevitable.
Based on the findings, Pecanac and colleagues made some recommendations. First, appreciate the importance of the words used when talking to patients and families. “Individuals remember the words that were shared, and use those words to come to a very difficult decision,” Pecanac says.
Second, allow decision-makers to use their own words. “Clinicians do not use words like ‘vegetable,’ with good reason,” Pecanac says. However, if a decision-maker uses that word, it can help clinicians clarify their wishes in medical terms; possibly, the patient would not wish to be “unresponsive” or in a “vegetative state.”
Some participants expressed concern about “starving to death” if a feeding tube was not placed. Others talked about “pulling the plug.” Ethicists could help families think about these situations in different, potentially more positive, terms. “‘Pulling the plug’ can be reframed to ‘allowing natural death,’ and ‘starving to death’ can be reframed to ‘comfort feeding,’” Pecanac notes.
Third, explain the reason for individual treatments when multiple treatments are used concurrently. This clarifies the gravity of the situation. “When people are on multiple life-sustaining treatments, it is because they need multiple treatments to keep them alive,” Pecanac notes.
By explaining that a ventilator is needed because the lungs are not functioning well, and vasopressors are needed because the heart is not functioning well, and continuous renal replacement treatment is needed because the kidneys are not functioning well, it conveys the dire nature of the situation.
“Death might be inevitable, but people can also survive for a while with these treatments without actually improving as well,” Pecanac explains.
Fourth, ask decision-makers what they would not want. Clinicians often start by assuming the patient would want to live.
“Many respondents noted that they would not want to live with pain, suffering, or in certain neurological states,” Pecanac says.
Finally, ethicists should ask the family about their understanding of the situation or the patient’s wishes. “Ethicists can be a nice resource for families in working through these decisions,” Pecanac says.
REFERENCE
1. Pecanac KE, Massey SM, Repins LR. How patients and families describe major medical treatments: “They are no longer living, just existing.” Am J Crit Care 2022;31:461-468.
Different clinicians use similar-sounding terms. Families may make decisions based on how the clinician presents a situation. It is critical for medical providers to choose their words carefully.
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