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Most families have never suffered through a loved one experiencing prolonged critical illness and respiratory failure (defined as ventilator dependence for weeks, usually with a tracheostomy). But each year, more do. An estimated 400,000 people currently live with chronic critical illness in long-term acute care hospitals (LTACHs) and other facilities -- a population that has more than tripled in the past 15 years in one of the fastest-growing segments in health care.
Sadly, most LTACH patients never leave alive, except to return to traditional hospitals for more intensive care. About half die within a year, and many of those who survive remain permanently dependent on a ventilator. Only a fraction ever walk again, and even fewer regain functional independence.
For the vast majority of families, this information is not sought or welcomed after they have made it through the trauma of the acute phase of their loved one's critical illness. Rather, they often see placement of a tracheostomy as an opportunity for renewed optimism, another chance for recovery to the patient's premorbid baseline. And intensivists generally oblige this fantasy, or at least remain respectfully silent. After all, no one can predict what the patient's exact outcome will be, and it seems cruel to force such a difficult conversation on an overwhelmed family desperate for hope.
This chasm between perceived realities is widely seen as a problem requiring remediation -- for the families, who are commonly considered by health care teams to be "unrealistic" or "in denial" for insisting that their loved one is recovering despite all evidence to the contrary. Refusing or ignoring palliative care consultation and offers of hospice care, they're considered "unreasonable."
Meanwhile, the treatment team experiences moral distress delivering what they increasingly see as painful, futile interventions to patients without hope for recovery -- the antithesis of what they consider "care." How could anyone do this to someone they love? Don't they realize how selfish they're being?
Surrogates' Decisions Near the End of Life: New Data
Two recent studies shed some light on this increasingly prevalent and troubling phenomenon.
In one, families of 277 patients receiving prolonged mechanical ventilation at five U.S. hospitals were randomized to receive usual care with a family meeting (control group), or a web-based decision aid that provided estimated prognosis, treatment options, and elicited patient values prior to the family meeting.
Use of the web-based tool had no apparent impact on the families' decision making. They discarded the tool's estimate of 56% one-year survival, as well as their doctors' estimates (50%), with ~90% in each group predicting their loved one would survive longer than one year. (In reality, about 60% of patients survived six months.) Use of the tool did not significantly change end of life decisions such as withdrawal of life support.
In another study, families of 1,420 ICU patients at high risk of death at five hospitals affiliated with University of Pittsburgh Medical Center were randomized to usual care or frequent "high touch" nursing interventions (multiple structured family meetings; daily emotional check-ins, all by nurses with palliative care communication training). There was even a "quality improvement" specialist assigned to help find time for all the extra meetings and communication.
The primary outcome -- families' burden of psychological symptoms -- was unchanged, although they did rate quality of communication higher. But most interestingly, patients whose families received the extra counseling had shorter lengths of stay in the ICU and hospital -- because family members allowed them to die with comfort measures more often. This shift in decision-making appeared to occur in about one in 12 families receiving the intervention: in-hospital mortality was 36% with the intervention vs. 28.5% without. (After six months, 60% vs. 55% had died in each group, and fewer than 3% were living independently.)
The effectiveness of the intervention at encouraging or empowering families to choose comfort care was not emphasized in the conclusions or the wider reporting of the "negative" trial, which was read out as consistent with previous trials that also failed to find ICU interventions to reduce surrogates' distress.
Its significance was not missed by the NEJM editorialist, however, who wrote:
[T]he intervention did not lead to the premature death of patients who would have otherwise done well — instead, the intervention was associated with a shorter dying process for those who faced a dismal prognosis. These new findings offer a harsh reality that complicates the definition of success — it may be possible that providing better care for the most seriously ill patients means that those patients do not live as long."
Are Physicians "Unreasonably Reasonable"?
I can remember well how my father's dying process made me and my family very "unreasonable." We weren't the worst ones in the ICU -- probably about average for an educated, entitled clan with health care backgrounds -- which still made us fairly annoying, I'm sure.
More unreasonable, I think, may be expecting humans to somehow remain "reasonable" while they helplessly witness their flesh and blood, their life partner, their history, their legacy slip into oblivion. Staring into the occult blackness of grief as it begins to engulf them, in confused terror of what their own lives will be when that light they've steered by finally flickers out.
For them to abruptly discard the cheerleading slogans heaped upon them by family, friends, church members, doctors, advocacy groups, media stories -- beat that cancer! you're a fighter! stay positive! day by day! -- that sustained spirits through the terrible gauntlet of progressive illness leading to this final nadir. Is it any wonder they want to be told it's a beginning, not an end?
And finally, asking them to be the agent who gives the signal, signs the form, mutters the affirmation -- "we're ready" -- to end life support, to throw open the door they've been leaning so hard against, and welcome death in.
For patients at the extremes of critical illness with the least hope for recovery, after families received high-intensity empathetic counseling, 90% still rejected comfort care or hospice. We in health care call that "unreasonable," and we're right: love, the will to live, and the instinct to protect one's kin are the antithesis of reason. But we celebrate those values in almost every other context I can think of. Why does that change in the ICU?