Transforming the conversation about death and dying | Marian Taylor | TEDxHBUJun 10, 2021
Fresh out of nursing school I accepted a job in pediatric oncology. I didn't know much about it; In fact, the extent of my knowledge was what I had seen in things like st. Jude commercials I'm glad I didn't think twice because I probably would have turned down the offer for fear it was too difficult. That chapter, that 10-year chapter of my life is what I give credit to the nurse. Today I am very grateful for those little patients, they were powerful warriors, their parents and my coworkers, the entire team that helped train me. and it is thanks to them that I can talk about
You might be thinking about what happens to the children who lived. Yes, research has come so far and children are beating cancer, but that will be another talk for another day, so from there I entered the world of palliative care nursing and mainly for geriatric patients in rural areas. Now I'm currently doing surgical nursing so I guess I'm the friend everyone wants to have. If you're sick, you can call me or if your kid is sick, but I quickly become the friend that no one wants to talk to. because I talk about things that are difficult to hear now, although st.
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transforming the conversation about death and dying marian taylor tedxhbu...
Jude's commercials didn't show things like nurses performing post-mortem care, they didn't show nurses carrying a deceased child to the morgue, so I guess I can safely say that from day one of my nursing career I saw myself forced to do so. Face the searing reality of
death. I would like you to capture your emotions when you see these words or if you hear them out loud. It's kind of taboo in our country to talk about these things, so I think it's the first step to
conversation. It's recognizing how you feel about this topic of death, so I encourage you to examine how you feel to allow yourself to feel it and, most importantly, think about it and talk about it.
This is a birth plan that some of you may be familiar with. It seems to be common practice in this country for prospective parents to carefully formulate a plan for what they expect the birth of their child to be like. It includes things like where the birth will take place, who will be in the room, pain management, things like that. We plan to anticipate and celebrate our entry into the world. Is there a possibility to do the same with our output? What is your first reaction when you see this image? Probably something like: Oh, you know, the other day a new baby, a patient daughter, and her caregiver came into the world.
This is an elderly palliative care patient. Her daughter sent me a photo of her mother and in the last days of her life lying next to her in her hospital bed, she had put on makeup and curled her hair. She looks so calm and that photo brought me back to those many. For hours I stood at his bedside talking to both of them, coming up with a death plan, talking about what the end might be like, talking about comforting medicine, moving furniture so the hospital bed could be in the living room, so the light could be on. natural could come in through the windows so her mother could still hear the family interacting in the kitchen so she could look out the window and see the farm animals.
My first reaction to that image was oh, that's beautiful and it's beautiful because that family was able to start. the grieving process and without guilt because they were able to participate in her mother's death plan of helping her leave this world with peace once you think about how you feel about death and
dyingon that topic. I think it's very important to not just think about it but talk about it and eventually put it in writing. It's very important that your next of kin know what your wishes are, if that's not the person you want to execute healthcare decisions for you, so appoint someone because they are someone who makes those decisions. making decisions for you, if they have to do it under pressure and in stressful times, is much more difficult, so start the
conversationtoday, just start with simple things and think about organ donation and then expand your thinking to measures to maintain the life, how you feel about it. that kind of thing and eventually I will put it in writing or let your closest family members know that there are many resources on this topic to help you so I will briefly talk about Hospice because this is a group of people that is a guarantee that people talk to them about death and dying now.
My experience with Hospice is that it is a very underutilized resource of what statistics show is a 100 percent Medicare-covered benefit. Many people are not using this resource. Palliative care is getting a whole team of people to walk alongside your family and providing a multidisciplinary approach with a very holistic approach. When I see things like someone is in hospice for a day, that tells me we're not doing well enough. The work of raising this conversation early enough in someone's life someone should not go to hospice while they are actively dying, that is a crisis, the topic of death and dying should be discussed at the beginning of the illness, Yes it seems that way.
I have learned that chronically or terminally ill doctors, nurses, and healthcare professionals do not always feel comfortable discussing these topics, so I encourage you again to have this conversation at least in your own mind so that, if If your family member or loved one reaches the point where they have to make difficult decisions, you are now prepared to have this discussion. I think things like fear and just not being comfortable with the issue or what's hindering us, there's guilt, not wanting to give up hope for a cure. Those are all great valid reasons, but I think we should also keep that issue in the back of our minds, so in the best case scenario when talking about Hospice, a patient would come to Hospice at the beginning of their journey with an illness. if you know it is terminal. that they can, they still have their own decision making capabilities, they can be part of the team and make their own decisions, come up with their own plan and allow the team to be a trusted member of their family so that they can have a very smooth experience, so remember that birth plan.
I wonder if it's time we included some end-of-life boxes because the United States has one of the highest maternal mortality rates of any developed country, so childbirth is a very dangerous thing in this country, but it's also It's a very, very exciting thing and I think that's why that topic isn't discussed among women, so you might be thinking, but I'm young, I have my whole life ahead of me. I am healthy. My family will know what I want and I will talk about this when I am older. It just makes me uncomfortable talking about it, it will make other people sad to bring up this conversation and it will be a difficult topic, but it is very important, which is why things like accidents, car accidents, traumatic brain injuries, strokes, diseases that have complications that They are life altering, they affect people of all ages, what if you ended up in a vegetative state where you couldn't communicate with other people you fed through? a tube you were dependent on machines to breathe those are very real possibilities of accidents and injuries that I mentioned earlier start the conversation now you don't want your family to have to make those decisions for you in stressful situations this is a quote from Steve Jobs, no one wants to die, Even people who want to go to heaven do not want to die to get there and yet death is a destiny that we all share, no one has escaped it and that is how it should be because death is very likely. life's best invention your life changing agent cleans up the old to make way for the new so I feel very lucky to have been with many people at the end of their life it's an honor like a nurse does Usually, I don't choose you, you are assigned and I have been very fortunate to be able to walk that path with many families, so along the theme of transformation, I would like to share some ways that the mind, body and spirit are transformed through the time.
The time of death now, in situations where death slowly decreases, normally patients will begin to have a decrease in activity level, wakefulness, thirst and hunger, and the starvation process, if the patient does so. leads, research shows that it is not painful because the patient actually enters a state of euphoria. I've heard that many family members feel guilty because their loved one doesn't want to eat or drink anymore and that's the only thing they can control and they almost feel like they need to force it because they think that's the only thing they can do to keep their loved one alive. dear, but the process of the patient rejecting those things is actually a natural process and painless patients will often at the end have something we call reunion and it's just unexplainable bursts of energy and it's thought that maybe it's an opportunity to bind loose ends or have some kind of closure and you will often hear people talking to people who have already passed away, they will have visions of loved ones.
Those who will talk about returning home. Things like this. I've seen it be a theme across the board with the people I've gone on this journey with with a woman I cared for recently, she was on the preactive. phase of death she was barely responding and I went into her house to check on her, she woke up and said she had to go to the wedding, she started talking to people in the room who weren't there so her caregiver and I we get up in her wheelchair we took her to the front window of her house so she could look out into the yard and down the street and she was looking out muttering some words that she thought she was at this wedding that she needed to go to as soon as she got back home. the bed he fell asleep and didn't wake up again he died in less than 48 hours and I really believe that burst of energy he had was his recovery, he had one more thing he had to do before leaving this world. and she had to do it.
I took care of a little girl for three years and just before her fourth birthday she was at the end of her life and as she lay lifeless in her hospital bed, her mother put her to bed extra and told her: when you see Jesus, run to him, she gave him permission. The girl's legs ran across the hospital bed as she took her last breath. I have told that story so many times and I have never cried. I took care of two teenagers I had known them for. years going through their cancer treatments together, they had arrived at the hospital on a skateboard with their IV poles, they were good friends, they ended up in the hospital at the same time due to complications and one of them dreamed that they were going to die and go to heaven on the same day and she shared that with us as nursing staff and they did, they both died the same day in hospital rooms, side by side.
I have seen children give away their belongings, designating their siblings or parents to take care of their dogs, cats, and pets. I have heard many conversations about how they became parents or children, making sure their parents are okay. take care of a little boy, he was so wise, why is he beyond his years, he was like a little old man, we were. Good friends, we hung out a lot in the hospital and his grandfather raised him and when his end came, his grandfather told me that his heart was going to break, he had to be there, so he asked me to hold his grandson as he died.
Of course I did, that was his death plan and I honored him and I tell you these stories because I believe that this privilege that I have had to be in these situations and experience death firsthand has allowed me to have peace about death. to not be afraid, but also have the voice to be able to talk to you about this and the importance of facing it and how you feel. One last story from a woman I care for at Hospice. I have known her for over a year and a half is how long she has been at Hospice since day one, we signed a do not resuscitate order together and talked about death and over this last year and a half we have been building trust and she is capable Ask him any questions you have about death.
She texted me the other day and said Marian: I won't die without breath. You have to help me. She was having a panic attack and was afraid it would get worse. She continued to refuse and I said you're right and you're not going in, and that allowed me, because of her nerves, to communicate with my team, my medical director and my social worker, my chaplain and we came up with a plan and with the family of she. and I educated them and we put the medications in place and we have a plan for when she will take her last breaths and hopefully it won't be scary and it will be beautiful because she has trusted us and allowed herself to be vulnerable and honest with her feelings and can talk about this topic, so to conclude again, I encourage you to join this conversation, start talking about it, think about it and how you feel and hopefully we can transform the conversation about death and die.
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