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End of life….

 

 

 

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

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

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

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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End of Life

End of life (EOL) care is a sensitive topic that presents challenges to health care professionals, patients, and their families (Walczac et al., 2014). Diseases such as cancer are often lethal and patients are commonly given a set life expectancy (Walczac et al., 2014). In addition, reports state that a significant rise in deaths will occur over the next few decades (Sprinks, 2011). Thus, prompting an increasing need for healthcare professionals to be well prepared in providing care for these individuals. However, nurses and doctors are often challenged with discussing end of life with their patients (Walczack et al., 2014). Research states that healthcare professionals avoid discussing end of life with their patients due to fears of disappointment (Sprinks, 2011). Timely communication and patient readiness also present challenges to many healthcare professionals (Walczack et al., 2014). Nonetheless, understanding how to improve end of life care, communication, and skills is crucial to providing quality patient care.

Communicating with patients at the end of life can be made easier by initiating the process of Advanced Care Planning (ACP), which essentially involves discussing patient prognosis (Walczack et al., 2014). By initiating ACP, patient questions related to timing and progression of disease can be answered and an increasing balance in care can be provided (Walczack et al., 2014). Evidence also suggests that patients should be involved in their care as much as possible (Walczack et al., 2014). Further supporting this idea, reports state that patient needs at the end of life are often not met due to a lack of staff communication and patient involvement (Sprinks, 2011). Aside from communicating with patients, communicating with caregivers and family plays a crucial role in end of life care because they are often given the role of making health decisions for patients who are no longer fit to do so (Walczack et al., 2014). In a study implementing the use of a Question Prompt List (QPL), which contained a list of questions related to EOL that patients and families were encouraged to ask, results indicated that patients and caregivers asked twice as many questions and had fewer unmet information needs regarding future care (Walczack et al., 2014). Thus, patients can be expected to have fewer concerns and a potential decrease in anxiety related to end of life. End of life is something that everyone will have to experience one day or another. Regardless of how prepared an individual is, end of life is never easy. I hope you enjoyed reading my blog, I look forward to reading all of your responses and blogs as well!

References

Sprinks, J. (2011). Nurses lack confidence in providing end of life care. Nursing Older People, 23(2), 6-7. http://dx.doi.org/10.7748/nop2011.03.23.2.6.p5035

Walczak, A., Butow, P.N., Clayton, J.M., Tattersall, M.H., Davidson, P.M., Young, J., & Epstein, R.M. (2014). Discussing prognosis and end-of-life care in the final year of life: A randomized control trial of a nurse-led communication support program for patients and caregivers. BMJ Open, 4(6), e005745. doi:10.1136/bmjopen-2014-005745.

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End of Life Care

 

Death is evident, it can occur to any one at any time. It is important to have a clear understanding of end of life care and what your desires are for when that day approaches. Would you like to be intubated? In a vegetative state? Would you like to be resuscitated or would you prefer to pass away without any resuscitation measures? It is important to have an end of life talk with your family members and the important people in your life. Who will be able to make these decisions for you? Will you write a living will? These are important questions that we should consider and discuss with our family, I did so and the following describes my family’s end of life thoughts.

The topic of death is something I have always avoided. I cannot imagine losing my parents, it brings me to tears. My mom has always expressed her desires to me if something tragic or her death was to occur. She wants to be cremated and not have a memorial service. She does not want me to cry, and she wants me to believe that she has passed away to a better life. She will not be suffering and she would be able to look down upon our family. This may be easy for her to say, but hard for me to believe. The thought of losing my mother is something I cannot imagine. My confident, my best friend, the woman who gave birth to me. I just love her so much that the thought of death is unreal, a reason I believe I would never be able to be her power of attorney nor implement her end of life wishes. My father is the same way. He would like to be cremated, and he would like his ashes scattered in the ocean. My father has never been one to talk about death nor show much emotion. I think it would be easier for me to implement his end of life wishes than my mothers. Why, I don’t know.

In regards to myself, if something tragic was to occur and I was still young I would like to be kept alive. If I have children I would like to be kept alive at all costs because my children deserve to grow up with their mother and father. If I was to have a very low chance of survival it would be ideal to let me go. There would be no point in prolonging my families suffering. I know that my mother would do anything in her power to keep me alive; therefore I would not appoint her as my power of attorney. At this moment I am still unsure of my end of life wishes. It is something that I have to put more thought into and I believe once I have a family of my own I will be able to make a better decision.

It is very hard to have a conversation where end of life decisions are discussed. It is not pleasant and sometimes we are in denial. I am guilty because I cannot imagine my parents passing away. I cannot get over the idea of never seeing my parents or sister; my loved ones being taken away without even saying goodbye or letting them know how much I love them. This topic is difficult for everyone but it is an important conversation that we all must have.

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