"Keeping your husband on a respirator or pursuing other life-sustaining interventions appears to be futile at this point. The prognosis is guarded.”
A family member hearing these words is unlikely to understand the provider’s likely meaning: that the patient is in the dying process and that aggressive treatments are likely to do more harm than good.
“Families are in crisis, and information is oftentimes new to them. Often they don’t have the wherewithal in that moment to ask for clarification and say, ‘What do you mean by that?’” says Thomas Foreman, DHCE, MA, MPIA, director of the Department of Clinical and Organizational Ethics at The Ottawa Hospital in Ontario, Canada.
Foreman regularly asks family members, “What did you just hear?” “It’s surprising how many times they heard something very different from what the doctor said,” he says.
Clinicians often go out of their way to avoid the “C-word,” says Christine Mitchell, RN, MS, MTS, FAAN, executive director of the Center for Bioethics at Harvard Medical School in Boston.
“Patients and families are sometimes quite surprised when they learn they or their family members have cancer, even though clinicians have used the word ‘tumor’ or ‘abnormal growth,’” she says. A mother once told Mitchell her son had “metastases” as if it were a diagnosis; it became apparent she didn’t realize he had cancer.”
“I am generally a believer in using the real words early and often, in a way that detoxifies them and allows patients and families to use them and understand what kind of cancer they have, what the doctors and nurses have said about it, how it can be treated, and what is likely to happen,” says Mitchell. At times, patients or their families are very clear that they can’t handle such talk and don’t want to hear those words.
“Out of respect, I have sometimes said, ‘Let’s talk about what we can say and how we can say it in a way that isn’t so scary,’” says Mitchell. “That at least allows us to talk about what we can’t talk about.”
This gives patients the chance to express how much they need to hope, and how they want to live in the present without an oppressive fear of impending death. “Then, it helps to explore anything they can say about what the circumstances would be when they want to hear more than they can bear to hear right now,” says Mitchell.
Sarah Goodlin, MD, FACC, FAAHPM, chief of geriatrics at the VA Portland Health Care System, teaches both trainees and practicing clinicians to use the model “ask, tell, ask.” She starts by asking the patient or family what their perceptions are, then tells them information, and lastly, asks them to tell her what they understand and what questions they have.
Simply being asked about preferences for end-of-life care can make a patient wonder if there’s something their doctor hasn’t told them about their prognosis. Goodlin asks this question of every patient she’s meeting for the first time. “I structure it into my normal behavior so I can honestly tell them that I do this with everybody,” she says.
Goodlin tells patients, “This is something I do with every patient. I am not trying to give you a secret message. I just want to find out what you have told friends, family, or other doctors, and if you haven’t thought about it, I want to get a sense of what’s important to you.”
Foreman says it’s important for providers and ethicists to carefully consider the language they use. “Are you trying to get a message across?” he says. “It limits autonomy when we try to guide somebody in a particular direction, but we are not telling them that.”
Many ethical consults, says Foreman, “are less about actual ethical dilemmas than they are about poor communication. Ethicists certainly have a contribution to make in facilitating a robust conversation when it’s apparent people are talking through one another.”
The following are some commonly used terms that can mislead patients and families, according to experts:
• Do Not Resuscitate
“This is a very negative message, because it communicates that you are not going to take care of their loved one,” says Edward Dunn, MD, director of the Integrated Ethics Program at Lexington (KY) VA Medical Center. “You are only telling people what you are not going to do.”
If a patient’s wife is in conflict and is not ready to give up, hearing the term “DNR” can break down communication. “The patient’s wife may be thinking, ‘Does that mean you don’t value his life as much as I do?’ It fuels conflict between the family and the medical team,” says Dunn. The VA now uses the term “allow natural death.”
The team might say, for instance, “Mr. Jones is 90 years old and has serious medical problems and you are now his spokesperson. We believe it would be better off to allow natural death rather than charging in with a code team, because it might cause more harm than good.”
“By stating, ‘allow the person to die naturally,’ it’s implied that you are not going to call the code team,” says Dunn. “Just by changing the terminology, it promotes a goals-of-care conversation.”
Many people have an unrealistic idea about how successful CPR actually is. For this reason, Goodlin never asks patients, “Do you want CPR?” Instead, she says, “When at the end of your life, your breathing or heart stops, we have a choice. We can allow natural death or we can try to revive you.” If patients indicate they wish to be revived, Goodlin asks, “Are there situations in which you wouldn’t want your life prolonged — for example, if you couldn’t leave the hospital and live independently?”
“This is framing it as a choice between two positive options,” she says.
• Failure to thrive
Foreman has seen families get confused when providers use the term “failure to thrive,” as in an elderly patient with a suspected abdominal mass. “What they really mean is that it probably isn’t worthwhile exploring that too much because she’ll be dead long before the cancer kills her,” he says. Families sometimes wrongly assume the provider expects the patient’s condition to improve.
“It is a positive way of saying something else,” says Foreman. “It certainly creates challenges for families in crisis to tease out what that really means.” The clinician could be trying to get across to the family that the patient is very ill and probably in the dying process.
“Physicians often say, ‘I don’t want to take away their hope.’ But that’s pretty paternalistic,” says Foreman. “Patients need real information to make reality-based decisions.”
Providers are challenged to balance hard truths with compassion and empathy. “Sugarcoating information may not be as ethically appropriate as we think,” says Foreman. “We are denying people the ability to digest information for themselves.”
• Guarded prognosis
Physicians sometimes use this term when they really mean the patient is dying. “But to a family member, the hidden language that we use as healthcare providers is not understood,” says Foreman.
• Futile care
“If a patient is on a respirator and we know they are never going to get off, we might say, ‘This really is futile,’” says Foreman. A physician means the intervention can’t achieve its therapeutic goal. The patient’s family might look at it very differently — that the respirator is achieving the goal of keeping the patient alive.
“It is more important to understand what the patient values and to set goals for their care,” says Goodlin. “Then if a ventilator will not achieve the goals, that’s the message the family needs to hear.”
Instead of taking about “futile” care, Foreman asks open-ended questions such as, “What is your goal?” If the family answers, “For mom to go home,” the clinical team can inform the family that this isn’t going to occur. The team can then move from talking about specific interventions to discussing values.
“Futile is a very value-laden and confusing word,” says Foreman. “The challenge is that the family may have goals that aren’t therapeutically related, which might mean it’s worth the attempt anyway. It’s a difficult thing to grasp.”
• Life-limiting conditions
Patients or family may interpret this to mean that they just won’t be able to do as much as they used to do. In fact, says Goodin, “we are thinking that the condition is going to end their life sooner than if they didn’t have the condition. I learned to instead say ‘life-ending conditions.’”
• Life-sustaining interventions
This gives the impression that the patient’s life can be sustained indefinitely. “Oftentimes, the intervention isn’t life-sustaining — it’s death-delaying,” says Foreman. “Although biological functioning continues, we may be just delaying the inevitable.”