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Week 11 Homework
In regards to end of life, I have very little experience with the subject from a family perspective. The most recent death in my family happened to my grandfather when I was 7 years old, so I barely remember the details from the event. One thing I do remember, however, is how my mother reacted after the fact.
My mother is very religious, and I think watching her father slowly decline neurologically and physically was very hard on her. She has told all of us in our immediate family that she does not want to be resuscitated if she dies, or put on life-sustaining measures (such as ventilator, tube feeding, etc.) if something were to happen to her. Interestingly, she has not signed an official DNR order yet, but she feels very strongly about the subject and doesn’t want to be kept alive artificially.
I feel like that has sort of rubbed off on me a bit, too. I’m not as religious as she is, but I’d definitely prefer not to be on a ventilator or kept alive by artificial feeding if I’m in, say, a serious car accident. If I went into cardiac arrest for some reason then yes, I would like to be resuscitated, but I’m not worrying about that too much right now. This topic parallels what we discussed in advanced assessment, and I’d like to iterate what I said during that discussion: if I were to find myself dying or in a resuscitative situation, I’d want my family around me. They’ve always been extremely supportive of me when I’ve been ill, and that has made those experiences better. I love my family very much, and having them be by my side in that type of situation would be very reassuring.
I’ve not heard too much about this topic from my peers in class. While I know some have had traumatic experiences with friends and loved ones being sick or passing away, I think that we as healthcare practitioners have learned to become much more resilient to those kinds of events. Not only have we become more resilient, but we have also become more empathetic towards those going through such difficult times, and that has made us much better nurses as this program has gone on.
Overall, this is a weird topic for me to be thinking about personally, but learning and thinking about it has definitely enhanced my ideas and feelings toward the subject of death and dying.
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.
End of Life Discussion
After spending some time thinking about end of life care, I think that there are multiple options for what I would personally like done, depending on the situation.At this age, if I coded, I would like to be a full code status. If I was a diagnosed with a terminal disease, I would like to die in the most humane way and be a DNR/DNI status. If I was involved in an event that left me in a vegetative state with no brain activity then I would like to be taken off life support. If I was in a long-term coma with brain activity, I am not sure what I would want for myself. I think it would depend on what my family would want and how it would affect them. If there was a possibility of me returning then I am really not sure what I would want and am continuing to think about this. I think that making my parents the executor of my will/health directive would be the most appropriate decision, however I would have to my wishes well defined because I think they would have a hard time making these decisions without my prior explanation.
I think my family would want a similar situation to what I would personally want for myself. I have spoken to my parents and grandma (on my mom’s side) and they have all expressed that they would not like to be kept on mechanical life sustaining support if it came down to that. I think it would be important to have a more in-depth conversation about this topic to see what specifically they would want if faced with this terrible possibility. My family lives about 100 miles south in Orange County and think that this is more of an in-person conversation so I have not facilitated a detailed conversation about this yet.
Culture, family and diversity play a huge role in end-of-life decisions. Different religions do not allow life-support to be taken away while some might favor this action. Family values could also affect whether or not resuscitation efforts are continued or ended. I think regardless of culture, family or diversity, all decisions should be counted as valid for that individual/family and as nurses we have to respect these choices even if we do not agree with them.
Family Roles
End of life is something that I have had experience with over the last several years through my volunteer work with Dream Foundation. Dream Foundation is a non-profit organization that grants wishes to adults who are terminally ill. One aspect of my work is making floral deliveries to terminally ill patients on hospice, at local facilities, and to their home. I’ve watched and listened to these patients and learned a great deal about what it means to live and when it’s time to let go. It was a few months after my work began with DF that I had the conversation with my husband, Scott about what constitutes “living.” We agreed that neither of us would want to prolong life simply because the technology is available to sustain our life. I know wholeheartedly, when the time comes, that we will be able to carry out each other’s wishes.
A few months ago I was faced with this conversation once again as my oldest sister and I began to bring up the topic to our parents. My mom whose been declining cognitively over the last year just isn’t the same woman she once was. Her dementia makes her forget just about everything. Last August, she rescinded her driver’s license after she walked out of a Target and could not remember how she had gotten there and where her car was. The decision was a tough one for her and for us, as we watched her become increasingly more dependent on those around her. Growing up, the conversation about death and dying has always been an approachable topic. My mom, who lost both parents before the age of 2, grew up understanding what death meant because of her maternal grandmother. She raised us kids the same way.
My sister who was apprehensive at first about starting the conversation was having a hard time, so I initiated it. When the time came to asking those difficult questions, my mom who has been dealing with her declining health daily was much more open to talk about the end of life. My dad however was not so ready to discuss it. I realized that for the first time in their marriage my mom is the one that needs to be taken care of, as she had spent a lifetime caring for a husband while also raising 6 children. I don’t think that this new role is one that he is completely comfortable with yet. I assured them that it wouldn’t be just one conversation in time but an open dialogue about what they want when the time comes. I do my best to get home on a regular basis to see my family and continue this conversation. I am always surprised by my parent’s candor and humility. I believe that culture and family plays a great role in the types of decisions made and who is willing to make them. Family and the roles we assume within that unit influence every aspect of life and the end of life.
