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End of Life

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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…

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surfingMy 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.

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End of Life Discussion

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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

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EOL

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.

End of life….

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JHP_5996My husband and I were in the car on our way to visit family for Easter, I looked at him and asked him what he would want for end of life care. I tend to bring up random topics during our car rides, but this particular topic took him by surprised. He asked me what I meant by end of life care. I knew I had to be more specific with the topic. I started by asking him if he would want me to  make health care decisions for him if he was in a state he could no longer do it for himself. His response will be with me forever. He told me that he trusted that my decisions for his care would be out of a place of love and years of knowing how he would want to live his life. I was deeply touched by his response and I knew that I felt the same. We both had to lean on each, when we  have lost loved ones in the past, but it did not prepare us for talking about the death of each other and I knew it was important for us to explore our feelings.

Our wishes and desires were similar. We both had buried loved ones in cemeteries and felt that even though our loved one’s physical bodies were there, we did not feel that their spirits were. We both agreed to have our ashes spread in a location that was filled with happy memories we both shared. Additionally, I brought up the option of donating our organs. I explained to him that the pink sticker on our drivers license that states “organ donor,” will over ride any feelings of opposition he may have to donating my organs. He then expressed how he would honor any wish I had to donate my organs. I told him that I wanted to specifically outline how my body was going to be donated. I wish not be used for research, because I still want a part of me to remain with him. The conversation during our car ride was harder than I originally thought it would be. The car ride showed me that this should be one of many conversations to come and that both my husband and I should set aside dates that we would begin to outline an advanced directive. I feel that this conversation brought us closer. I am starting to realize the importance of an advance directive beyond advocating for my patient’s wishes to be up held, but to make these situations easier for my loved ones.

 

Pull the Plug

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Having discussions about end of life and the type of care that we want is extremely important. When I was in 8th grade my grandma suddenly suffered a brain aneurysm. She survived her trip to the hospital but was intubated and on mechanical breathing with a poor prognosis. It was her wishes if it looked like she would to not remain like this if there was only minimal or no chances of her ever getting off life assisting devices. All of my family was there when stopped everything and she passed. While still devastated, at this age I could understand that this was what my grandma had wanted.

At the same time my mother talked to my sister and me and said she wanted the same thing. My mom said she never wanted to be hooked up to machines, to stay that way and never get off. And she has been open about her wishes ever since this time. She has since made me her medical power of attorney. I think this has helped me to be open about my desires as well. I have shared these desires, which are the same as my mom’s and my grandma’s, with my fiancée. And I had to ask him if he could pull the plug. He certainly did not like the topic and did not want to talk about it at first. However, I told him you never know what’s going to happen in life and it is best to always be prepared then to make someone suffer something they do not want. I told him what happened to my grandma and how she was the epitome of health, always busy always running around. And then so suddenly on life support. He finally said that he would pull the plugs if he had to. When prompted for his wishes in the same situation, he wanted the same as me. I think it is very important to discuss and be open with your family and loved ones about the end of life.

Death and Dying

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Unknown

End of life care is something that I think all people feel uncomfortable talking about, but when in reality we shouldn’t because ultimately we were born to die. Although I have never talked to my family about what I want, sometimes I will leave little hints, as I think most of us do to avoid that uncomfortable discussion. First off what do I want? When thinking about this question, I always think about how I would rather have my family let me go, then sit and wait for a miracle that most likely will never occur. To me, someone who is on a ventilator, not responding, with minimal brain activity has already left this earth… Their soul has already gone and the family is just left with a body that is being controlled by machines so the physical part may remain alive. The family member is not there. If I am ever that person in the bed I would want my family to take me off all of the machines so they and myself could be set free. I would never want my family’s life to be like that, not only is it not fair to them, but it is not fair to me.

My family is very respectful in regards to family members wishes. I think we learned a lot about death and dying when my dad was in and out of UCLA waiting for a liver transplant due to him being diagnosed with unknown liver disease. At the end of his life he too was in the ICU fighting for his life until his pancreas failed and eventually died peacefully off of all machines… The best person in my family to make this decision I believe is my sister, Emily. She too is becoming a nurse and is one of the toughest people I know. I feel confident that she would make the right decision for me if I were to ever end up in a vegetative state. I wouldn’t give this job to my mom or brother because I wouldn’t want to place that decision on them. I am not saying they are wimps or softies; I just feel like my sister would carry out my wishes/ remind them of what exactly I wanted and make sure that everything necessary was done. In addition she will also have the medical knowledge behind her.

When finally sitting down with my family we discussed all end of life issues. The majority of them expressed similar ideas to mine, being that they too would want to be taken off the machines. My mom and step dad said that they would not want to burden us with sick parents. My mom said none of her kids should ever be put through that kind of reality or life. She said when it is time, let me go. I know in my heart that no matter what whenever it is my families time to go they will be watching over me. I have had experiences where I feel and know my biological dad is with me… I can’t explain it, but it is just a feeling of being protected and loved. I am confident that I can carry out my family’s wishes if ever something terrible happens to them. And I am confident that they too could respect my wishes in event that I ever end up in a vegetative state. Death is something that we should not fear, but a reminder that we must enjoy our life here because we never know when that time might come. I am glad that I have thought about this end of life topic and I will most likely print this post and give it to my family member and best friend, Cheyenne.

 

XOXO Stephanie

End-of-Life Care Decisions

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When thinking about end of life (EOL) care for myself, I find the considerations very different than those for my clients and even for my family/loved ones. At face value, it seems impractical to state my wishes as I am so “young,” but after further reflection, it seems extremely suitable given our knowledge and experience through the nursing program. I know that I would not want extreme measures taken to keep me alive if something were to happen. Although we can state specifics in an advanced directive, such as interventions that are time-specific, I have discussed this topic in great detail with my family members and vice versa. I started asking the tough questions and really taking the time to understand the wishes of my family members and various loved ones beginning in MedSurg II. They understand and respect my wishes as I do theirs, so I feel comfortable leaving the decisions up to them. I feel most comfortable designating my father as my power of attorney. He has medical experience as a firefighter and EMT, which is why my passion for the medical field began at such a young age as I was exposed to graphic pictures, stories, and medical terminology. Although the decision(s) would be incredibly difficult and painful for him, I know that he would be able to speak and listen to a multitude of doctors and other health care professionals in order to make the most rational decision possible about my fate, irrespective of his bias.

Due to my experiences in the clinical setting, I believe culture plays an enormous role in the matter. In speaking to many about EOL care over the last year, I realize that the latest “fad” seems to be that Caucasian parents do not wish to be a “burden on their children.” Most people would choose not to live with their children regardless of their physical or psychological ailments. However, my parents and I had a heavy-hearted conversation about the genuine meaning of those statements and I shared my thoughts on the situation. I stated that I feel opposite from them and if they had a condition of some sort that they needed assistance and did not have to be in a medical facility or hospital, I would want them to live with me despite their feelings. This has been a recurring conversation with both of my parents, but I feel as if we have finally understood each other. They no longer state that they “don’t want to be a burden” on me. I know that each family feels differently and I do not believe there is a “right” or “wrong” way to feel. In fact, I am aware that many families believe the children should always care for their parents. Irrespective of the decisions, EOL care and personal wishes need to be discussed so they can be respected. It should no longer be kept silent, because it may just be too late…

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