90% of people think it's important to talk about EOL wishes with loved ones.
27% of people have actually had these conversations. 1 in 5 said they avoided the subject out of worry about upsetting loved ones. Majority say they want to die at home, but 60% die in hospitals/institutions. It is clear that we have a problem about engaging in EOL care conversations! Studies show that when loved ones engage in meaningful EOL conversations, 1. There is less guilt and depression for the survivors. 2. Thinking about these issues before a medical crisis, allows loved ones to make decisions based on values and wishes, instead of stress and fear. 3. Take time beforehand to discover what you want to address. 4. Seek guidance - either The Conversation Project or a Death Doula, that can help with education, knowledge and direction. 5. List of helpful questions that The Conversation Project suggest:
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As EOL conversations can be uncomfortable, and hard to know where or how to start, The Conversation Project is a great resource for questions to get the conversations started. Here's what they suggest:
"Now, how do you begin a conversation? This list doesn’t cover everything, but here are some things you can say to start talking". • “I need your help with something.” • “Can you and I have a conversation about ______________?” • “I was thinking about what happened to ___________, and it made me realize .” • “Even though I’m OK right now, I’m worried that ____________, and I want to be prepared. Can we talk about some things that matter to me?” • “Will you help me think about my future?” • “I heard about the Conversation Project and answered some of their questions about things that matter to me when it comes to my care through the end of life. I’d like to talk to you about it.” • “When ___________ died, do you think their wishes and priorities were respected toward the end of their life?” "Here is a list of some other things you may want to cover when you talk": • Do you have any worries about your health? • What do you need to address to feel more prepared (examples: finances, property, legal documents, relationships, health care situations)? • Do you have any fears, concerns, or mistrust about where or how you receive health care? • Who do you want (or not want) to be involved in your health care? • When you look ahead to the future, are there important events or dates you hope you’re there for? • Are there kinds of treatment you would want or not want (examples: resuscitation attempts, ventilation, feeding tube)? • If your health condition changed, when would it be OK with you to shift from trying to cure an illness to trying to enjoy the end of life as much as possible? In this article, BJ Miller, whom is now a physician, shared that he's been on both sides of the doctor-patient relationship, and how an almost fatal accident was the beginning of his relationship with death.
BJ's story is very powerful. You see, in college, he and some friend thought it was a great idea to climb atop a parked commuter train. However, when BJ stood up, an electrical current entered his arm, blew down his legs, and then out of his feet, which resulted in the loss of both legs, around the knees. The journey to physician - hospice and palliative doctor - began with his experience in the healthcare system, which is designed to treat diseases, and not people. This brought BJ to want to encourage others to shift their perspectives about EOL. Here are some of his thoughts on what really matters at the EOL: 1. Tease out the unnecessary suffering out of the system. 2. Tend to dignity, by way of the senses, the body, the aesthetic realm (which is design). 3. Set our sights on well-being, so life, health and healthcare become more about making life more wonderful, rather than just less horrible. 4. Become patient-centered, not disease centered - a human centered care model. 5. Caring becomes a creative, generative, even playful act- the whole person. 6. Create spaces that allow life to play itself all the way out, so that dying becomes part of the process. Just think, if we as a society, transformed how we experienced EOL, we might begin to shift the narrative to just how profound and beautiful these events can be. Conversations about death and dying are a crucial part of life. One doesn't need to be nearing EOL to have these conversations.
In fact, it's been shown that the earlier one engages in these topics, even if young and healthy, fear and anxiety is reduced, as there is time to process and think about EOL care wishes. "Deficiencies in medical training, lack of confidence, limited time, and cultural barriers all contribute to the paucity of these important discussions". When society looks at death as a "medical failure", we have a fundamental problem with how we (society) looks at death. This illustrates just how needed these types of conversations are. Seeking those that are trained on how to talk about EOL will only help to benefit all of us. When we see death as a natural, and normal, part of life, we then begin to experience it with more serenity and equanimity. This isn't to say that there will be no sadness or heartache....honest, compassionate and effective EOL conversations won't remove these emotions. They will however provide opportunities for meaningful conversations among loved ones, so that the focus stays on the wishes and the comfort of the dying. Ask your physician about how they approach EOL conversations, and if you feel you would like more guidance and education, then reach out to a death doula. This article is on EOL Care Conversations in geriatric physicians. However, these points apply to all of us, regardless of age and health, whom want to engage in EOL conversations.
First, the physicians recognize that these conversations are valuable, yet this article states that very few actually have these conversations because of their lack of training and feeling unsure of how to have end-of-life care conversations. Think about this....these are doctors, whom must of us look to for advice, yet they too, are uncomfortable on how to approach such topics. They also have limited time to spend with families, are uncomfortable of possible disagreements among family members and the patient, and not knowing when the time is right. It is never too early to begin these discussion, as we can then normalize these topics and begin to take time to process our wishes. However, much training is needed for the physicians to have these types of conversations, as it's paramount to the well-being of the patients, physically, mentally and emotionally. Death Doulas are a great resource, and if physicians and medical offices were willing to bring on DD's as part of their staff, these would be incredible resources that have been trained to have these conversations, and have the spend time answering questions and providing guidance. In my opinion, we would then be meeting the needs of engaging in these powerful and profound discussions. "Emotional Intelligence (E.I.) is the ability to identify, and regulate ones emotions, and to understand the emotions of others".
Most of the time, emotional intelligence is referred to the ability to build relationships, defuse conflict, reduce team stress and improve job satisfaction. But, I am not talking about E.I. in the workforce.......I am talking about we can use E.I. in learning how to "do death differently". Emotions guide us throughout our lives, but they especially do so when we are engaging with end-of-life matters. Understanding the "5 pillars of emotional intelligence" may give you a deeper understanding of just how powerful E.I. is when we apply to both life, and death experiences. The 5 Pillars of Emotional Intelligence In End-of-Life (EOL) Transformations:
Experience the power of EOL E.I. Contact Dee Dee What is your life goal?
If so, what if you chose to focus your life's-goal energy to developing a deeper understanding of how emotional intelligence effects your reactions to life experiences?
Tips to improving emotional intelligence throughout your life and end-of-life experiences:
End-of-life E.I. can be tricky and it's important to be guided through the varying nuances of emotions and death, dying and grief. Contact me to find out more about how emotional intelligence can transform your life. For medical trainees, the common source of work related stress, is death!
Death creates distress for medical students and residents, because they are not trained in how to manage their emotions, and their grief, when a patient dies. The study, which includes medical residents, and recent graduates in the UAE. Don't let the location of the UAE make you feel the USA is any better. Death is death, regardless of nationality, and the way society responds to death and dying, is mostly universal, with a few exceptions. In this study, the residents participated in transformational learning about their experiences with death and dying, and five major themes emerged, they are: Emotions Support Education and Experience Coping Strategies Finding Meaning The study showed, that as the residents progressed in transformational learning, they were able to improve their end-of-life (EOL) patient care! This transformational growth enabled them to effectively care for the dying and their families. This is profound! When medical staff also gains EOL understanding and knowledge, they are better able to support the dying, and not add to any additional suffering for all involved. Begin now, and see the power of EOL transformational learning! Death changes the way we view life.
Death makes clear just how precious life is. Death changes the way we act (at least for a while). Death is the ultimate transformative experience! Death is powerful to those dying and those living. It helps bring into focus what is important and what is not. It shines a light on the way the dying lived life, and it is profound and life altering. Discover through transformational learning just how important building healthy relationships with death is. Don't wait until an illness, medical crisis, dying or death occurs. Participate in your own journey with end-of-life relationships. Stephen Jenkinson is an amazingly wise man when it comes to death and dying.
Yes, he is outspoken, sometimes a little rough around the edges, but he's passionate about "dying wise" in a world that sees death as a failure, "an annihilation of life". The more we become death literate, the more we see this statement as false, as death is part of life, it's natural, and of course difficult, but it is what will happen to each of us. I hope you take the time to listen to this podcast, and then decide you want to "die wise". When individuals and families choose to be death positive, it means the needs of the dying, or the dead, along with the family, comes first.
There are many reasons as to why being Death Positive is so important - Most people, if they talk about it, want to experience death, dying and grief, in a healthier manner. People also want to be more involved in the death of their loved ones, which means they want to be able to approach these life events with compassion and love. In addition to, being Death Positive means taking a proactive role in learning as much as you can so that you can make more informed decisions. Relieve as much anxiety as possible through a thorough, and calm, exploration of your relationship to death, so you can take time needed to outline medical and after death care wishes. Leaving concrete and direct legal paperwork for your loved ones, reduces their anxiety, because they understand they are following up on your wants. Take the opportunity to discover what you, and your loved ones, personal preferences and wishes are. Take the time to discuss with loved ones, making sure they are comfortable with following through on what brings you peace and comfort. Truly understand that by getting involved now, before a crisis, and gaining end-of-life knowledge, you are going to help ease the minds of the loved ones that are with you until the end. What does it mean to be death positive? It means that it is NOT taboo, or morbid, to speak about death, dying and grief.
Death is 100% guaranteed, in all societies. Everyone will die. It's a fact, and one that we cannot keep ignoring. According to "The Order of a Good Death", here are the tenets of the death positive movement:
We can begin to make a difference in our loved ones lives, if we too, are willing to become more death positive. Let's be the ripple effect of love and honor in death events. What is death literacy? It is defined as "set of knowledge and skills that make it possible to gain access to understand, and act upon, end-of-life and death care options".
When individuals and families take the time to learn more about end-of-life (EOL) options, they are able to make medical, and non-medical, decisions (before a crisis occurs) that align with your values and wishes. Communities that have high levels of death literacy are knowledgeable about options and how they might impact their loved ones, which then helps to make informed choices that we align with quality of life and care and compassionate care when dying. The more we know, the better decisions we can make for ourselves and our loved ones. Death touches all of us. None of us are immune, and no one will escape death.
But when someone is dying, or has died, we often approach these experiences with little or unhelpful knowledge from past experiences. It doesn't have to be this way, as we can gather and learn to "do death differently". We can discuss fears and anxieties, while gaining new perspectives and knowledge to experience these profound events with love and compassion. We can learn more about death, dying and grief, so that we can become more literate, thus reducing the anxieties and fears about end-of-life. This understanding can help us reduce stress and unnecessary medical interventions and approach life, and death, experiences with honor and respect. Together, we can become death literate and transform our relationships with death, dying and grief. First, we are all mortal, and none of us will live forever.
Second, based on the first, we will all die. I know this sentence seems harsh and aggressive, but it is the truth. The other truth is that we need to talk about death because it is a normal part of each of our lives. It is not morbid, it is natural. It's not macabre, it's just unfamiliar, which brings fear and anxiety to these topics. The more we talk, learn and explore death and dying, the less frightening these become and the more natural it feels because we become more familiar with it, and the emotions that often accompany these experiences. Feelings too, are also very natural and normal with death, dying and grief. The more we share, with those that are able to receive openly, the more we feel connected in these often difficult times. Engaging often in these conversations will help to bring ease and comfort, not only to you, but those dying and those that are supporting the dying. Think of the "ripple effect" you can bring to these profound experiences when your hard work of end-of-life exploration can bring love and peace, to both life, and death. Death is the only common denominator that all humans have with each other. It is a 100% guaranteed, with no escape clauses and no buyouts.
Yet, many of us have not openly participated in conversations about End-of-Life (EOL). For most, death conversations are normally avoided because they are still thought of as morbid or taboo. However, when we avoid talking about death, we deny ourselves the opportunities to raise our own awareness, sharing fears and anxieties and honing in on what EOL wishes and desires bring us the most comfort. Starting now, and not waiting until one is diagnosed or dying is near, allows us and our loved ones to take the time needed to discuss and honor decisions that best align with our values and morals. Death Doulas, AKA Death Midwives, are getting individuals, families and communities to begin thinking and talking about death differently.
These, non-medical professionals, have been trained and certified in End-of-Life process, which helps to bring continuity of care in often unmet needs of the dying. Find a credentialed EOL Doula Western society is often death phobic, and we do not like to discuss, in depth, such things as dying, death or grief. However, this creates a problem because we are ill-prepared and unfamiliar with the process or how to meet the needs of the dying individual. However, there are a new group of individuals that want to help change how end-of-life is experienced. These Death Doula's can help educate, bring wisdom and as much serenity as possible to these profound, life changing experiences. Here are a few tips that may help manage mental and emotional needs:
*The following is from Cancer Council, Victoria
When you don't know what to say People often wonder what they should say to a person who is dying. It’s understandable that you don’t know what to say – what you feel might be so complex that it’s hard to find the right words, or any words at all. It is common to worry about saying the wrong thing. Most times, the person who is dying will find comfort in you just being there.
What is End-of-Life comfort care?
Talking beforehand with an individual that can guide you and your loved one is helpful. However, if you are unable to do so, here are a few things to consider when an individual is dying: What is End-of-Life (EOL) Care? This is the support and medical care given as one is dying. There are many decisions to be made beforehand, so if you are able, please begin having conversations with loved ones about your wishes at EOL. Remember that dying is more than just physical. It involves emotional and spiritual aspects as well. Physical Needs: Pain, Breathing, Fatigue etc. Mental and Emotional Needs: Anxiety, depression, confusion, involvement Spiritual Needs: Some individuals may rely on faith, others may pull back from faith. With each of these needs, involve the dying as much as you can, speak kindly and make no corrections and be emotionally and spiritually present for your loved one, so as to be able to best support them. Please don't forget about the caregivers as well. Here are some questions you might ask those that are supporting the dying:
The dying process can be unsettling, especially when we are not comfortable, or unfamiliar, with the experience.
When we learn more about death, dying and grief, we are able to be present for the dying individual. We can bring love and comfort, while meeting the needs of the dying. The attached article share that dying is normal stage of life, and understanding there can be various emotional and mental needs of the dying, such as: Mood swings - the dying may have personality swings. Anxiety - this may be due to unresolved issues with others, fear of death or leaving loved ones. Confusion - as the physical body declines, this may add to confusion. Being kind with your words is always comforting. Visions - dying often have "deathbed visions". These may cause discomfort for the loved ones witnessing. Please do not be alarmed or try to correct the dying. These visions do play an important role and often bring comfort to the individual. Working with a death doula before hand may help ease some of these symptoms, in additions to speaking with medical staff or hospice support may be helpful for a greater understanding for all involved. Life if full of:
Cycles and rhythms. Day to night. Cold to hot. Light to dark. Ever changing, even if we are not aware. Our emotional cycles and rhythms also: Ebb and flow. Morph from happy to sad, stressed to relax. Our physical bodies are cycles and rhythms that: Birth - youth - adult - seniors, if we are lucky to have this long of a life span. Life, dying and death have rhythms and cycles that: Changes in emotions, physical and spiritual parts of our beings. Each season and each phase of life brings us wisdom. Tapping into this understanding allows us to honor and to see the gifts. Connect, breathe, nourish and be true to yourself = these helps us to honor all cycles and rhythms of life and death. Death is not optional.
However, we can learn more about death and dying to become more comfortable and more aligned with the needs of the dying....we just need to learn how. Dying is more than just physical - it's also spiritual and emotional. Understanding, on a deeper level, all of the needs of the dying, can help us to be more emotionally present for these life-altering events. BJ Miller and Shoshana Berger share a few ideas in their book "A Beginners Guide to the End", such as: Don't leave a mess - lighten the load on your family members, and try to purge. Clean out your emotional attic - if you do not want personal things to be exposed after your death, please be aware to not leave "emotional bombs" for families to discover secrets. Mend important relationships - don't leave any regrets with relationships. A Necessary Conversation recommends Repair, Release, Reconnect so you and your loved ones don't have any Regrets. The winter solstice which occurs on December 21, 2022 is the moment the "Sun is born again".
Since the summer solstice in June of this year, the days have been getting shorter, while the nights have been getting longer, representing the decline of the sun. However, on 12/21/22, the sun will enter a new cycle of life, and the sun will be born again, by slowly, each day, increasing until it peaks again on 6/21/23. This cycle, which continues yearly, represents that beginning and the end of light and dark. These two entities morph into each other, going around, and around, year after year. The spiritual meaning of the winter solstice represents new beginnings, a birth, which is an opportunity to be hopeful for the new experiences for the new year. Take the time this December to absorb the past year's experiences - which people and events have molded you, what do you wish you could have done differently and how can you implement positive changes that align to your essence? Rest, reflect, repurpose your soul. Every December, since 1996, Spiritual Literacy Month has been observed. However, many of us have never heard of it and don't know what it means.
The purpose of Spiritual Literacy Month is to us to read at least one book on spirituality. The goal is to broaden the mind, deepen the connection to spirituality, religion or faith, and to gain wisdom from the worlds great religions and practices so that we can become a more spiritually literate society. Challenge yourself by learning more about other faiths, become more open minded to be able to see the true connection between all religious or spiritual practices (LOVE and PEACE). Ignite your soul - seek to learn more - understand what resonates with you and your loved ones, be kind and considerate, and truly understand that what most of us on earth just want to give and receive kindness and love. Go within, respect all beliefs and traditions and enter the new year with wanting to reunite with what brings you solace. Share it on social media. Be sure to use #SpiritualLiteracyMonth or #SpiritualLiteracy |
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