There are common statements clinicians make to families that can cause confusion: “We are worried that he will rapidly decompensate overnight.” “She may go into arrest at any point.” “We’re at max settings on the vent.” “Her lab values are downtrending.”
Andrew Childress, PhD, assistant professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, has heard statements like these during many family meetings. Often, the family doesn’t understand that clinicians believe death is imminent. “We are often consulted when families of incapacitated patients who have a terminal condition request continued life-sustaining treatment that the team thinks is potentially medically inappropriate,” Childress says.
Clinicians assume the meaning of terms like “decompensation” and “arrest” are clear to everyone. However, the family might not understand what the clinician is telling them.
To make things even more confusing, clinicians often start talking about how to prolong life. They do so in equally confusing terms. Clinicians might talk about “adding another vasopressor” or “switching to continuous renal replacement therapy.” The problem is the family might not understand how these interventions could affect the prognosis.
In other cases, clinicians try to explain the focus has shifted from prolonging life to comfort. Physicians sometimes talk about “letting nature take its course.”
“Physicians may not want to upset the family. Or they may be uncomfortable with using the terms ‘death’ and ‘dying,’” Childress offers.
Whatever the reason, poor communication on prognosis prevents the family from making decisions based on the true situation. “They can’t make a substituted judgment about what the patient may want, especially when it comes to ensuring that the patient has as ‘good’ a death as possible,” Childress explains.
If surrogates do not realize death is imminent, they cannot plan for hospice care or contact family members to be there for the patient’s last moments. “The lack of plain language in these discussions may lead to harms without corresponding benefits, if interventions continue to be provided that the patient may not have wanted,” Childress adds.
CPR is an intervention families often request or agree to; in some cases, they likely would want to avoid this intervention if they knew the patient’s death was imminent. “As ethicists, it is our task to ensure that the family understands what the team is trying to say,” Childress says.
Ethicists can ask for clarification if they notice a disconnect. For example, ethicists can interject: “If I’m hearing you correctly, you said the patient is likely to decompensate overnight. Could you clarify what that means? If the patient does start to decompensate, what will happen?”
Ethicists also might put euphemisms for death in clearer terms. For example, ethicists might offer: “It sounds like when you are saying 'let nature take its course' that you mean removing some of the life support, like the dialysis machine and the ventilator, and allowing the patient to die. Is that correct? If so, what do you plan to do to keep the patient comfortable?”
Ethicists can ask the clinical team to describe the best case, worst case, and most likely scenarios. This gives the team another chance to ensure the family understands death is imminent. “We don’t want the team to belabor the point. But we do want to make sure that the words ‘death’ or ‘dying’ are used at least once in these end-of-life conversations,” Childress says.
Some clinicians avoid discussions about imminent death mainly because they are uncomfortable. John D. Banja, PhD, finds this ethically unacceptable. “Given the quality of today’s medical education for students and residents, there’s no excuse for a healthcare provider to not be able to navigate an end-of-life conversation reasonably well,” says Banja, a medical ethicist at the Center for Ethics at Emory University in Atlanta.
Physicians who simply cannot bring themselves to talk about a patient’s prognosis “have not been trained well,” according to Banja. The ethical issue is that avoiding these conversations is not patient-centered. “The reason that the clinician dodges the discussion is because it makes them feel uncomfortable — and if they are dodging it, they are not being patient-centered. They are being clinician-centered,” Banja explains.
With some practice, any healthcare provider can offer support to a patient with a terminal illness. “The instruction is not all that difficult. Faculty simply role-play and have students engage them in end-of life conversations,” Banja says. “There are also a host of empathic responses that any physician can learn.”
For example, physicians can stop talking and wait for the patient to respond, rather than keep talking and not give the listener time to take in the information. A common question that is asked in end-of-life conversations is how long the patient can expect to live. The best answer is to give a range: “Someone with your cancer typically lives six to 24 months. None of them are you. You might live less than six months or longer than 24 months. I’ve treated more than one patient with your kind of cancer who lived longer than three years. So it’s not time to sell the furniture yet.”
Poor communication on prognosis prevents the family from making decisions based on the true situation. If surrogates do not realize death is imminent, they cannot plan for hospice care or contact family members to be there for the patient’s last moments.
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