Experts bring clarity to end of life difficulties


“The family requests that the medical team do everything, including intubation and attempts at resuscitation if needed,” she said. “The family says he was fine prior to this admission. Another thing I hear a lot is, ‘He was even sicker than this last year, and he got better.’ ”

Meanwhile, “the medical team consensus is that he is not going to survive this illness,” Dr. Gundersen said.

The situation is so common and problematic that it has a name – the “Daughter from California Syndrome.” (According to medical literature says, it’s called the “Daughter from Chicago Syndrome” in California.)

Dr. Elizabeth Gundersen, director of the ethics curriculum at the Florida Atlantic University, Boca Raton

Dr. Elizabeth Gundersen

“This is one of the most agonizing things that happens to us in medicine,” Dr. Gundersen said. “It affects us, it affects our nurses, it affects the entire medical team. It’s agonizing when we feel like treatment has somehow turned to torture.”

Dr. Gundersen said the medical staff should avoid using the word “futile,” or similar language, with families.

“Words matter,” she said. “Inappropriate language can inadvertently convey the feeling that, ‘They’re giving up on my dad – they think it’s hopeless.’ That can make families and the medical team dig in their heels further.”

Sometimes it can be hard to define the terms of decision making. Even if the family and the medical team can agree that no “nonbeneficial treatments” should be administered, Dr. Gundersen said, what exactly does that mean? Does it mean less than a 1% chance of working; less than a 5% chance?

If the medical staff thinks a mode of care won’t be effective, but the family still insists, some states have laws that could help the medical team. In Texas, for example, if the medical team thinks the care they’re giving isn’t helping the patient, and the patient is likely going to have a poor outcome, there’s a legal process that the team can go through, Dr. Gundersen said. But even these laws are seen as potentially problematic because of concerns that they put too much power in the hands of a hospital committee.

Dr. Gundersen strongly advised getting at the root causes of a family’s apprehension. They might not have been informed early enough about the dire nature of an illness to feel they can make a decision comfortably. They also may be receiving information in a piecemeal manner or information that is inconsistent. Another common fear expressed by families is a concern over abandonment by the medical team if a decision is made to forgo a certain treatment. Also, sometimes the goals of care might not be properly detailed and discussed, she said.

But better communication can help overcome these snags, Dr. Gundersen said.

She suggested that sometimes it’s helpful to clarify things with the family, for example, what do they mean by “Do everything”?

“Does it mean ‘I want you to do everything to prolong their life even if they suffer,’ or does it mean ‘I want you do to everything that’s reasonable to try to prolong their life but not at the risk of increased suffering,’ or anywhere in between. Really just having these clarifying conversations is helpful.”

She also emphasized the importance of talking about interests, such as not wanting a patient to suffer, instead of taking positions, such as flatly recommending the withdrawal of treatment.

“It’s easy for both sides to kind of dig in their heels and not communicate effectively,” Dr. Gundersen said.

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