New Guideline for End-of-Life Care in the ICU
Time for hospitals to do more. Will they?
With the increasing complexity and severity of chronic illness, the lengthening of lifespan in developed countries, and the success of advanced medical interventions, clinicians are spending increasing proportion of their energy on end-of-life care—what might be wryly termed “palliative critical care.”
Most of us have received no formal training in this, but by default and necessity, with varying degrees of enthusiasm, we’ve become experts. Nearly universally, our colleagues defer to us in this area, because of our immense experience, and also because they want no part of it.
Sometimes, we feel very alone.
Some support would be nice, but most of us have stopped hoping for that.
Wait, what’s that you say?
A major critical care society released updated guidelines for end-of-life care and palliative care in the ICU?
Did they standardize death, rationalize the irrational, and coax the wild violence of familial grief into docile residence in the calm, color-coded world of algorithms and quality metrics?
No, not in this update. Maybe next time.
But the panel did a very important thing by calling out hospital systems to do more of the intense and draining nonclinical work of engaging, educating, understanding, and supporting families and surrogate decision-makers.
Here’s a recap.
PulmCCM is not affiliated with any specialty society.
Hospital systems should provide more support to clinicians caring for patients near the end of life.
1. Identify surrogate decision makers.
Families are complicated. Some people who claim to be spouses aren’t; a close cousin may be a more involved and appropriate surrogate decision maker than an estranged adult child. Very often, family members (especially siblings) have different perceptions and values. Not uncommonly, disagreements or bad blood detract from their effectiveness at representing their loved one. There are major legal and practical implications to all these issues.
Why does it fall to intensivists to sort all this out?
The new guidelines call on hospitals to follow a standardized process to identify who will be a patient’s surrogate decision maker.
Hospitals should go beyond this, though, by documenting the family structure and relationships for all patients lacking decision-making capacity. This is especially important for patients with more complex families (e.g., children from more than one marriage, or multiple siblings).
Intensivists will still often be the first contact with the family, and have a duty to seek an appropriate surrogate for their incapacitated patient. But hospitals can show respect to both clinicians and families by taking responsibility for this task (and then actually providing staff who can do it properly).
2. Educate surrogate decision-makers on their role, and the various interventions and decisions common to end-of-life.
In the intense emotional milieu of a loved one’s critical illness, decision-makers need to be taught and reminded early and often of the foundational principle of their role: the care plan should follow what the patient—not the decision-maker or family—would choose.
Inexplicably, this basic duty of orientation to the ICU also usually falls to intensivists.
The guidelines suggest hospitals develop resources for educating decision-makers on their difficult new role.
Hospitals should also provide educational resources (videos, handouts, etc.; how about an app?) to patients and families at risk for ICU admission, explaining intubation, mechanical ventilation, tracheostomy, etc.
They should
3. Create policies allowing refusal to provide non-beneficial care, and staff ethics committees and palliative care services appropriately.
Numerous hospitals have formal policies that define the circumstances and processes by which clinicians can respectfully decline to provide non-beneficial care at the end of life.
This may require palliative care and ethics committee consultation; a second physician opinion, and adherence with conflict resolution processes or other standardized criteria.
In Texas, such a process is written in state law (the Texas Advance Directives Act).
UCLA’s patients’ rights statement includes the phrase, “you do not have the right to demand inappropriate or medically unnecessary treatment or services.” After entering an ethical and conflict resolution phase, physicians may withdraw or decline to provide non-beneficial care.
Mayo Clinic describes similar policies and processes permitting the withholding of non-beneficial care after due process, in a 2013 paper.
All hospitals should follow the examples set by Houston Methodist, the Mayo Clinic, UCLA and others, which provide appropriate support and respect to patients, families, and care teams.
4. Provide palliative care education for all team members engaged in providing end-of-life care.
Only about half of hospitals have palliative care physicians, who are often overstretched and are typically not present on weekends or holidays (i.e., 30% of days).
As end-of-life care is an integral aspect of critical care, formal training in palliative care should be offered and encouraged for all clinicians caring for critically ill patients. Hospitals should fund both the direct (course fees) and indirect (paid time) costs for this training.
5. Protocolize end-of-life care.
At a minimum, hospitals can provide order sets and proper nurse training to ensure that consistent and appropriate palliative care measures (e.g., opioid infusions are instituted prior to extubation) are followed.
6. And hey—stay woke out there.
Of course, it wouldn’t be a society guideline these days unless it also admonished clinicians to provide equitable, culturally appropriate care that considers the patient’s ethnicity, gender identity, sexual identity, race, ethnicity (I know I said that already but you can’t be too thorough in these things), faith traditions, country of origin, and socioeconomic status, and how all these might relate to her end-of-life needs.
And here I was thinking that our mortality was the one thing left that might unite us….
Conclusions
Today, roughly one in five people in the U.S. die in ICUs, and about one in five people entering an ICU will die there or not long after.
There are about 5 million admissions to ICUs annually in the U.S.
That’s a lot of end-of-life care. And it’s only going up.
Caring for the minority who linger before death with prolonged respiratory failure, repeated infections with resistant organisms, dialysis-dependent renal failure, incurable cancer, nonhealing wounds, end-stage heart failure, or more often a combination of these, requires an enormous amount of resources—of time, cognition, and that precious but limited resource, empathy. Communicating with and attending to their families compounds these demands.
Hospitals could do more to help.
It would be relatively straightforward (and not overly expensive) for hospital systems to hire “ICU navigators”—junior administrators with RN degrees and ICU experience—who would communicate regularly with families, educate them directly and with pre-built resources, schedule and lead family meetings, etc.
This support service is considered standard and indispensable in other high-complexity and high-stakes care areas—oncology and transplant, for example.
No, the ICU doesn’t bring in revenue like those clinical areas. That’s why the call for increased institutional support in the new end-of-life guidelines is so welcome. Without saying so, the guidelines challenge hospital systems, who regularly profess their concern for clinician burnout, to begin to put their resources where their PR is.
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