Is it wrong to teach patients and families to advocate for their care
Its your week in the ICU and a new admission has just rolled in. The patient is intubated for respiratory failure, which is a recurrent problem. The patient has been intubated multiple times, has had a prior tracheostomy and is chronically ill. The allergy list in the electronic health record has more than 10 medications on it.
During the next few days, the family is noted by several team members to micromanage. They ask everyone about handwashing, watch carefully everytime the patient’s port is accessed. They are adamant that certain procedures are not performed, like an arterial line and insist that an OG tube be placed instead of an NG tube. When the patient is extubated, the patient is likely delirious, but is paranoid and at times openly hostile to the team.
Has this ever happened to you? How have you and the team responded?
Contrast that story with a second: Another patient who is intubated for respiratory failure. A family that is present 24 hours a day, and actively involved in the care of the patient. The family helps whenever it is permitted, but never more. The family is always happy to see you, frequently thanks you and the team for your care, doesn’t ask for too much of your time. During the ICU stay (or after) the family provides snacks to the ICU team.
Does this family become a favorite of the team? Are you more or less likely to talk to the family to provide an update?
My family and I have been in both places.
If you could take a snapshot of my medical record (which is honestly a true behemoth), you would understand our anxiety about medical care. I have had multiple hospital acquired infections, including MSSA ventilator associated pneumonia that led to septic shock. I have had several blood stream infections that required surgical removal of my port, home antibiotics, and then replacement of a port. I have had an ischemic hand from an arterial line, and had complications from nasogastric tube placement. I have paradoxical reactions to anti-pscyhotics which have made me tremendously paranoid and hostile. And because my illness is a mitochondrial disease, several antibiotics can make me decompensate (due to evolutionary similarities between the bacteria and mitochondria).
But none of this is obvious in the chart. Some of it occurred in different health systems, or are so many pages back in the EHR that no one could find it. Busy providers don’t care about some of these issues, which compared to other problems in the ICU seem small. Drug intolerances are often dismissed when providers don’t understand them.
As my family has watched these events and heard me talk of suffering I no longer wanted to experience, they have fought hard for the care they most think I need.
But, at times this has led to both real and imagined abandonment from the team. The team stops by less frequently. Interactions are short and lack empathy. To the patient and family, this can confirm the need for vigilance and advocacy and can create a viscious cycle, especially for the chronically ill.
Yet, the behavior of the doctors and nurses is totally understandable. We know how exhausting it can be to provide care in the ICU. We work long hours and are sleep deprived. We see lots of suffering. We often do not have time or make a real commitment to our own resiliency. And then we have little left to give to those families who are particularly challenging.
At the same time, it is asking a lot of patients and their families, who also are sleep deprived, physically and emotionally exhausted to advocate with emotional intelligence.
Knowing this about ourselves, how do we best teach patients and their families to advocate? Do we set patients and families up for conflict if we arm them with “best practices” knowing that some providers (maybe even ourselves) are not particularly open to shared decisionmaking and patient engagement?
