I recently had a very tough case; not necessarily because the medical case in and of itself was difficult, but because the patient himself was. The case did require tailored management as the patient had respiratory failure due to advanced lung disease and needed a multi-pronged dedicated regimen to keep him stable. This was provided - countless times. And twice the patient was compliant for a few days, and improved immensely. And then he went right back to being noncompliant because he thought he could do better concocting his own regimen.
It would be ideal to say that there were pat and heart-tugging explanations for the patient’s noncompliance. Yet the truth was that the patient was very controlling, and had always controlled everything his whole life to the utmost degree. He admitted this side of his nature to us. Unfortunately, though, he wanted to control his decline which he could not. He needed a disciplined regimen, but refused to follow the instructions and how it needed to be done. Instead, he did things on and off, in a haphazard fashion. I spoke to him several times explaining the necessity of consistency in managing mortality, that this was key to increasing the likelihood of having a peaceful passing. He stated he understood, but his actions incessantly belied this.
It cannot be stated enough, excessive control is our enemy when facing rapid change. And control in general is only an illusion. Nothing is really under our control; if we dare think it is, it is only because of the illusion of temporary control. Dying is not a process which can be controlled; it is a process which needs to be managed. It is a process which serves a purpose, and even as close as we get to staving off another aspect of it, we still will inevitably have to deal with it.
These tragic cases of being unwilling to let go of control in favor of management are truly heartbreaking and cause me pain. All I can do is remind myself to keep coming back to compassion and patience, which I did with this patient - over and over and over. Whatever he unraveled, I painstakingly rebuilt for him, each time trying to accommodate him where he thought he was. Unfortunately, and ultimately though, because he wasn’t at peace with letting of the control, he wasn’t at peace with letting go.
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