Chronic critical illness: a modern day purgatory?

That's a term used in a recent NEJM piece concerning the topic.


Background

Chronic critical illness (CCI) was originally administratively defined. Patients who survived their critical illness yet had the need for long term labor intensive care, often with continued mechanical ventilation, were eligible for transfer to a different category of hospital (oxymoronically called a long term acute care or LTAC hospital) under a different reimbursement and regulatory environment. But according to the article it's more than an administrative designation. It's a real clinical entity. The piece emphasizes a need for more training in the field of CCI and points to the generally poor prognosis of such patients.


A new disease?

From the paper:

..says Judith Nelson, a palliative care and critical care specialist at New York City's Mount Sinai Hospital who has conducted seminal research in this population. “This is a disease. It's sometimes or even often worse than some cancers in terms of its mortality and effect on quality of life. People know what cancer means. They've heard of it. But they've not heard of this.”

Better training and education needed

And why? According to the author:

Indeed, numerous studies reveal that we are, quite simply, bad at talking to families about prolonged illness...A survey of patients or surrogate decision makers for 100 chronically critically ill patients who had recently undergone tracheotomy revealed that the majority had made key decisions without any information about expected 1-year survival, functional status, cognitive status, or alternatives to continuing mechanical ventilation...

House officers increasingly receive formal training before leading conversations about the goals of a patient's care. Discussing the pros, cons, and long-term sequelae of a tracheotomy and of subsequent transfer to an LTAC hospital is another area in which we could benefit from further formalized training..

Yes, we could use more education in how to better inform patients and their families. That's part of the value of excellent palliative care. But is that the only reason? Education in advance care planning was the dominant focus of the article, with little or no mention on how we might do a better job of getting some of these patients well and on their feet. That's the concerning thread in the article. While making no declarative statement to this effect the author implies that CCI patients belong in a hospice rather than an LTAC.