It can be challenging caring for patients with serious illnesses.
Health care providers typically think of themselves as ‘fixers’, so when a patient has an illness that can no longer be ‘fixed’, it can cause distress. I’ve seen very caring providers become frustrated by patients/families that continue to ‘want everything’, when from the provider’s perspective it is obvious that these aggressive interventions have little chance for success. And when these treatments are fraught with side effects and the potential to cause more patient suffering, the burdens on providers increases. This is often when palliative medicine consultations get generated, ostensibly to help patients/families who ‘just don’t get it’, but I sometimes feel these consultations provide relief to the requesting providers as well.
Consider what this sounds like from the patient’s/family’s point of view.
These discussions typically center around choices- whether or not to be intubated, to continue or stop chemotherapy, etc… They are often framed in a relatively sterile fashion. But I caution providers to not be quite so cavalier when questioning why patients/families want to continue with ‘everything’.
Because basically, you are asking them to decide that it’s ok to die.
And that’s a tough decision to make.
In this post, I’m providing a link to a story from Kaiser Health News, about Mr Aaron McQ from Seattle, Washington. A few years after being diagnosed with leukemia, he received another punch- a diagnosis of ALS. His body was done. Mr McQ decided to take control of his own fate by using his state’s Death with Dignity Law. And even though he was suffering and he made this decision freely- on his own, it was very difficult for him to set the date, for his last day.
I think this is an important article- to provide perspective on what it is we are really asking patients when talking about no longer ‘doing everything’. And this leads into future, upcoming posts.
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