Nearly everyone has a to-do list of some kind that reflects goals that are important to them. When making choices about life-sustaining treatment (ventilators, dialysis machines, blood pressure drugs, etc.), ideas about the value of achieving certain goals become particularly important.
Ideally, care teams and patients (or, more often, their families) work together to make these decisions. However, sometimes care teams think continued treatment would provide no benefit and may prolong the patient’s suffering, while family members or patients want to continue treatment anyway and vice versa.
Bioethicists have debated these conflicts for years and a number of professional societies have made recommendations. At stake is the care team’s goal of protecting and maintaining their professional integrity — their obligation to provide technically competent and medically appropriate care — and patients’ or families’ goal of prolonging life.
In most cases, this goal of prolonging life is intended to give the patient a chance to recover or achieve another goal. Good communication is crucial to resolving these conflicts, but can easily be undermined by failing to understand how the words used reveal each side’s positions and interests. Here are a few statements and questions I have overheard over the years.
What clinicians might say
“There’s nothing more we can do.” Families may interpret this to mean the team has given up on the patient. What needs to be explained is that efforts to cure the patient have failed and the technology used to sustain the body long enough to facilitate a recovery are not able to serve that purpose. What remains to be discussed is what alternative purpose the technology should have, if any. Also to be discussed is whether that purpose aligns with what is important to the patient and what the medical team thinks should be done with limited resources.
“Would you like us to do everything?” This statement puts an enormous burden on families to make life and death decisions. Many families do not want this burden because they do not want to be responsible for determining whether their loved one should live or die. The question is also quite vague. It is neither clear what “everything” means nor what “doing everything” would accomplish.
“I don’t have a crystal ball” This claim is often heard when families ask physicians for a timeline to see signs of improvement or deterioration. It may also be heard when families ask about how long a patient is expected to survive with or without life-sustaining treatment. Saying this allows physicians to then hedge when it comes to making these predictions, but also gives families a sense they are not being heard.
In these situations, families likely want to hear suggestions for what they should be doing to prepare for their loved one’s death. Their goal is to plan for next steps and the team’s recommendation is a vital part of that process.
What families sometimes say
“We need to give her more time.” Families often struggle with making end-of-life decisions and will sometimes accept or even demand invasive procedures that have very little to no chance of helping the patient recover. They may request that the team proceed with the status quo, rather than risk choosing comfort care too early. Giving more time on life support may be appropriate, if the goals of doing so are made clear.
“He’s in there. We can tell.” Families often interpret eye opening, head turning, facial expressions, and hand movements as signs that their loved one is conscious and responding to the environment, even when these movements are not duplicated in front of the medical team. This interpretation of movement as an indication of intention is understandable, given that body language normally is an indication of awareness.
Care teams should avoid trying to dissuade families from this view. Instead, reframing the conversation in terms of whether the team expects that the patient will recover their ability to walk, talk, and interact consistently may help families draw on their understanding of the patient’s values to make a decision about their care.
“We’re hoping for a miracle.” Use of the “m-word” is often off putting for clinicians. Their natural response may be to avoid engaging the topic or steering the family towards their spiritual care colleagues. While spiritual care is a valuable resource, the care team can ask follow-up questions that will help provide insight into what the family is hoping for.
Questions like the following can help keep the conversation focused on these expectations as well as the patient’s values: “What does a miracle look like?” “How important is religion or spirituality to your loved one?” “What role do you think the care team plays in God’s plan for your loved one?”
Patience is needed on both sides to try to understand what is being said and not said. Clinicians can help avoid miscommunication by thinking carefully about how they are presenting information and avoiding stock phrases that create more confusion than clarity. Families can help by asking clinicians to explain what they mean by some of these stock phrases and trying to be open to hearing bad news when delivered compassionately.
Want to learn more about medical futility? Check out our upcoming Grand Rounds on Monday, Dec. 2 from 5-6 p.m. in the Denton A. Cooley Auditorium at Baylor St. Luke’s Medical Center. Remote access is available; 281-824-3734; ID: 336109
-By Andrew Childress, Ph.D., assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and a clinical ethicist at Houston Methodist Hospital and Baylor St. Luke’s Medical Center