Archive for year: 2015
Design Document
Kate Madinger’s Design Document:
End of Life
Although we have been educated time and time again throughout the last three years about the importance of discussing end-of-life care with our own family members, it does not discount how difficult the conversation can be. I know that I would not want to be placed on life-support for an extended period of time knowing that my quality of life if survival was possible would be severely declined. I also know that I would not want to place this financial and emotional burden on my family. After opening up this conversation with my husband, I was surprised to find that he would want a very different approach. I am grateful for the opportunity to have had to discuss this topic, since any moment can very well be the last to discuss it. After having had our conversation, I definitely believe I could trust him with this decision. I also had the opportunity to discuss the topic with my mother who feels very similarly to me in the regard. Although I know how difficult it will be when the time comes to respect her wishes, I am confident I will be able to. I was also able to see the influence culture has on this decision when talking to my mom about the topic. As we discussed the options, she shook her head and adamantly refused, explaining that her wishes are to go as naturally as possible.
Culture plays a large role in our discussion of aging and end-of-life with my parents. I think of my grandmother who is 92 years old and her aging experience, and have seen the large role her children have played in it. Her sons especially have taken an active role in her care. I have always expected to be the one to care for my mother as she ages and nears death, although she has never expected it from me. Although this end-of-life continues to be a difficult topic to address, I found myself better equipped to relate to my patients and their families. No doubt an advanced healthcare directive is something that both myself and my husband must set out to prepare so that our wishes might be made clear when the moment comes.
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.
