News/Commentary

By Cheree Cleghorn, Editor

A new study says that the great majority of families of critically ill patients want doctors to be as honest with them as possible in uncertain situations, even to the point of appreciating a physician’s willingness to acknowledge an inability to predict.

A “not insignificant 12 %,” however, did not want doctors to do that.

Doctors have to read the patients and the families and tailor their messages, the researchers say.

This study reaches the same kind of conclusion others have: People want to know what the possibilities are for the patient—-they may have emotional, legal or financial unfinished business to tend to.

However, the main barrier to these discussions is physicians’ discomfort with the unknowns.

If you have not been associated with a hospitalization in recent years, the staffs generally ask about living wills and durable powers of attorney for health care. They take care of those for you.

Patients facing high-risk treatment may be advised by the physician to be sure their legal affairs are in order but that is at the discretion of the doctor.

In all other situations, you need to be ready to start the conversation with the doctor yourself.

You also need to ask yourself what you need to know and why? That will help you focus on getting the most information for immediate needs when there are uncertainties.

What Can You Do?

- If your need for information is urgent, send a fax briefly stating the problem and asking when you could speak with the doctor for 10 minutes about it. One, the doctor knows why you need information and, two, you will not be asking the patient’s physician to stop and talk when that’s not practical.

- Be as specific as you can. Ask the doctor to help you consider the possibilities for the patient as it pertains to one general need or problem.

State why you need to know as an opening into a conversation. “Our lawyer says we must update our wills. I would like to know how best to approach this in light of the situation.”

When doctors can see the impact of the uncertainty on a patient or patient’s family, it is much easier to deal with possibilities and probabilities.

It is easy to see why this information is important. You can make it easy to show you understand that there are no certain answers.

(Ex. “I don’t want my _____ (spouse, parent) to think we expect the worst but our circumstances have changed. Our lawyer is pressing me to get our wills updated . Can you tell me how best to say this?”)

- Understand that, while your motives may be the best, doctors and nurses have been burned many times by relatives of patients who have their own agendas, agendas which may not serve patients’ best interests. Doctors do not want to get caught up in family conflicts. They emphatically do not want to be quoted out of context to anyone. Doctors do not want the patient to have reason to feel that the physician-patient trust has been violated. Gossipy-sounding quotes can do a lot of harm to that important relationship.

- Understand also that, any time the issue of money enters the discussion, any prudent physician is going to become very cautious. Highly-charged topics about money often are hard to delay and also hard to handle when the patient is so ill. The simplest position for you, if you are the patient’s designated decision-maker, is to act knowing that keeping everything financial in good order all of the time is a wise step. Don’t make it part of the illness. Make it part of sound family financial management.

- End any conversation about the patient’s condition and prospects with the doctor by saying something like the following. “I want to be sure I understood what you said. I want to know what I may say to others which accurately represents your views.

“You think that _________.

“Is that right?”

If you didn’t understand the doctor, that’s the ideal time to clear up any misunderstandings—-before you quote the doctor to a third person.

Caution: It is not wise to read general information about people who have a specific diagnosis and assume that it applies to your family member, be the news good or bad. It is only general information. You need specifics. That’s why you need to be able to speak with the patient’s own physician.

The goal is to make a hard situation easier to talk about for everyone—the family member, the doctor and the patient.

Science Daily

…”Critically ill patients frequently have uncertain prognoses, but their families overwhelmingly wish that physicians would address prognostic uncertainty candidly, according to a new study out of the University of San Francisco Medical Center.

“Our interviews revealed that caregivers appear to believe that some uncertainty is unavoidable, and just the nature of life,” said lead author Douglas White, M.D., M.A.S., assistant professor in UCSF’s Division of Pulmonary and Critical Care Medicine and the UCSF Program in Medical Ethics. “The vast majority of families of critically ill patients want physicians to openly discuss the prognosis, even when physicians can’t be certain that their estimates are correct.”

“But past research showing that physicians are reluctant to discuss uncertain prognoses reveals a schism between families’ wishes and physicians’ comfort.

“The results were reported in the second issue for January of the American Journal of Respiratory and Critical Care Medicine, published by the American Thoracic Society.”

Source:  Science Daily, January 5, 2009

Citation Source: American Thoracic Society (2009, January 5). Family Members Of Critically Ill Patients Want To Discuss Loved Ones’ Uncertain Prognoses.