Respect…
My mom was first diagnosed with cancer when she was 40. Her fight back to health was brutal, and so five years ago, when it came back, she wasn’t willing to go through treatment again. Now… I’ve never been the type of person to prolong a person’s life beyond their ability to enjoy it, but her decline was so fast and hard that I found myself struggling to accept the limitations that she wanted imposed on her care. My dad and I helped her pass peacefully at home, and have been doing well, so I was a little surprised the other day when I was reminded of that fierce independence that my parents shared.
In a conversation with my dad a couple weeks ago I mentioned something odd that we had learned in class; that one’s choice of a healthcare proxy is critical because advanced directives can be unnoticed or even ignored. A week later, the subject of a friend needing to completely remove his bladder due to cancer came up, and my dad very pointedly stared me in the eye and stated “I would not do that.” I am his healthcare proxy.
To be honest, I was similarly convinced that tubes of any kind keeping me alive was a non-starter before I learned so much about them, and frankly, it would have been easier to abide by his wishes not knowing what I do now. On the other hand, I am so grateful that I am now in a position to understand the mysterious language that doctors mumble over patients when they come for help, frightened and completely overwhelmed. I know that when the time comes, I’ll translate the jargon faithfully, and help my dad pass with the same pride with which he lived, but I also know now how hard that is going to be, and think of this often when working with patients and their families. So, at least from my perspective, the Seven End-of-Life Care Domains article (Clark et al, 2003) assigned for discussion this week is a powerful guideline for interventions and behaviors that would help to ease this process, for everyone involved.
Reference:
Clarke EB, Curtis JR, Luce JM, Levy M, Nelson J, Solomon MZ, (2003). Seven
End-of-Life Care Domains Associated Quality Indicators and Related Clinician and Organizational Interventions/Behaviors. Robert Wood Johnson Foundation|Critical Care Medicine 2003, 1-15.
