In this episode I share my thoughts on how to approach the very difficult task of making an end-of-life decision about the treatment a loved one should receive. Many people are called upon to be decision-makers in these challenging situations and this episode serves as a guide for choosing the best option for someone we love.Download the handout below:
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Every day families are called upon to make nearly impossible decisions about the type of care a loved one should receive as they near the end of life. Here are some suggestions for how to navigate this challenging situation when there is no advance directive available for guidance:
Gather medical information from all healthcare providers involved in care
Ask direct questions:
What is the diagnosis and what complications have occurred?
What is the effectiveness of the recommended treatment?
What are the chances for recovery or improvement?
Are there side effects from the treatment or will it cause additional suffering?
What will happen if treatment is stopped?
What would you do if this were your loved one?
Get expert advice and guidance from a palliative care team if available in your hospital
Remember past conversations with your loved one that might give you clues as to his or her preferences for the end of life
Consider the statistics that most Americans prefer to die at home and most do not want aggressive treatment to prolong life in the face of an incurable condition
Ask your loved one for guidance by expressing your concern and your desire to make the best decision. Even though your loved one cannot verbalize, they can hear you – listen for any intuitive or “felt” guidance that might come to you about the best choice to make.
Be gentle with yourself and recognize that you have done your best in a challenging situation
Seek support from others outside your family
Tune in next week for another episode! Share this content with others who might it helpful and consider leaving a review on iTunes.
Learn some tips for starting important conversations about death with people you are meeting for the first time!
In this episode I’ll share with you some stories about my recent yoga retreat and the many amazing conversations I was able to have with strangers about death and dying. I’ve got a few tips for you about starting up your own conversations about death with random strangers. (Here’s a photo from a sunrise hike I took during the retreat!)
Stay tuned to the end of the podcast as I’ll play her song Evocation as the Outro today!
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Today I’ll tell you about my recent 5-day retreat at a yoga center where I went to relax, do yoga and finish revising one of my books. While I was there I had the pleasure of talking with many other visitors to the retreat center about death and dying, which was fascinating. Normally I don’t find many people out in the general public who want to talk about death. And while the people I conversed with weren’t necessarily interested in death before our discussion they each seemed to come away with a new understanding or sense of peace.
In order to confront our society’s fear of death we need many more conversations like this to happen every day with people who are not already tuned in to death awareness.
Each of us needs to step up and reach out to others to start a dialogue about death that might prove very helpful to our conversation partner and very informative for us.
Here are my tips for talking with strangers about death and dying:
Choose the right time and place: my conversations generally took place at the table while I was sharing a meal with various strangers. Breaking bread together creates an automatic sense of connection and safety since we usually associate mealtimes with positive feelings. There is also often some free time between courses where conversation can happen naturally. It may also work well to talk about death during other shared activities like hiking, gardening or cooking. Watch for the right opportunity to arise.
Find common ground first: make sure you have established a basic connection by talking about the meal (or the garden, or the hike, etc.) Since my conversation partners were also there for yoga classes we had an automatic common subject to begin chatting about while we established a connection.
Perfect your “elevator speech” which is a very brief story you tell whenever someone asks “What do you do?” The idea is that your answer is so brief you can complete it during a short elevator ride from one floor to the next. So think of one or two sentences you can use to answer that question and give another person an idea of your work. My answer at the yoga retreat was: “I’m a retired hospice physician who now writes books.” Tell them enough to garner their interest and curiosity and lead naturally to more questions. I purposely avoided mentioning death and dying in my initial introduction so that I wouldn’t frighten anyone away before we even got started. But most individuals I encountered were intrigued and asked more either about the hospice work or about the books I’m writing. Both of those questions led directly to a talk about death and dying. On several occasions the other person immediately brought up a story of a loved one or friend on hospice. Many times it was a story that desperately needed to be told and also came with questions about death, dying and hospice. I was amazed by the quality of conversation that occurred in these instances and the need for accurate information. I’m convinced that many people out there really do need to talk about death and dying but rarely encounter anyone they can speak to, which is where you come in!
Hone your listening skills: for these conversations focus on listening rather than telling your own story. Watch for cues from the other person that there is a need to say something and encourage them to talk by asking a question or two and stopping to listen attentively. We are all passionate about our work and other endeavors and there will be opportunities to share that at some point in the future. Initially it’s more important to just listen and hold space so that the other person can ask questions and get the support they need. Rely on your intuition to tell you when that person is ready for a little nudge or encouragement to go deeper into their feelings.
Share just enough information: again it is important to be a good listener so when you do describe your work don’t go overboard. Use simple and accurate terms to convey what you do but pause and allow the other person to ask for the information they need.
As you’ll hear when you listen to this episode I was able to have meaningful conversations with different people every day while I was at the retreat. These are some of the most important discussions we can be having right now so take a chance and strike up a conversation with a stranger about death and dying!
There will be a new episode every Monday so be sure to tune in again! And if you enjoy this content please share it with others and consider leaving a review on iTunes.
Learn why the Death Education movement is vitally important right now for our society and get inspired to teach your own class about death and dying!
This week I’m continuing my focus on death education by discussing some important reasons why right now we desperately need more death-ed in every aspect of our society. Learn how you might become a death educator in your own community and start to share your knowledge to help others become aware of death.
You can still join A Year of Reading Dangerously and start reading books about death and dying with 700 other people around the globe! You’ll get to take part in live Q&A discussions with the authors of many of the books we are reading. For February we are reading Smoke Gets in Your Eyes by Caitlin Doughty–and she’ll be joining our discussion at the end of the month! Sign up now by clicking here!
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Today I’m discussing why we need death education everywhere in our society and here are some of the places where it should take place:
Home – parents need to learn how to talk about death and dying with their children rather than shielding them from the reality of death
Schools – high school and college classes are a perfect place to introduce death and dying to young, curious students who can only benefit from learning more about death. (Next week I’ll share an interview on this podcast with Stacy Smith who teaches The Psychology of Death & Dying to college students, and on EOLU at the end of February I’ll present an interview about a high school elective on Death and the Meaning of Life with the teacher and 3 of his students.
Churches – clergy of all faiths need to be educated about death and dying so that they can better support their congregants on end-of-life issues within their belief system
Workplaces – employers need to understand the impact of death and grief on their employees in order to create supportive policies for bereavement leave; workers need to know how to interact with co-workers who are suffering with illness and grief
Medical system – doctors, nurses, and all other providers of healthcare need education in how to get comfortable with death, talk about it with patients and families, guide decision-making, initiate conversations with patients
Hospitals and nursing homes – need education to create sacred spaces for dying, to support patients and families at the end of life and honor patients’ wishes
Some of the reasons why death education is so important right now are:
We are living longer and the incidence of complex diseases like Alzheimer’s is increasing which creates a need for better advance planning. Patients and families need to prepare for the type of medical care and caregiving that may become necessary and understand how they can provide for those possibilities in the future.
Medical technology continues to advance at a rapid rate. Our ability to forestall death and keep a body alive has far outstripped our willingness to grapple with difficult end-of-life decisions. We need education to help people plan and prepare for the future and be pro-active about the care they receive. Studies show that those who think and talk about death are more likely to put their wishes in writing, to talk with others about their wishes, and to stop medical treatment when it is no longer helping.
Ethical and moral dilemmas about end-of-life issuesare splitting our society and families. Debates over physician-assisted dying and discontinuing medical care when it is not helping are going to increase with the aging of the Baby Boom generation. According to Pew Research Center surveys: 47% of Americans favor assisted-dying laws and 49% are opposed; 66% believe that there are times when doctors should stop treatment and allow patients to die a natural death, but 31% believe that doctors should always do everything possible to prolong life. These opposing perspectives are likely to be present in families too, especially if no advance planning has been done.
The high cost of being unprepared for death. Lack of advance care planning can lead to higher medical expenses, especially if the patient receive extreme care that was not actually warranted or wanted. Families unprepared for funeral planning are more likely to choose higher cost options and be vulnerable to unscrupulous marketing practices when they are grieving. Failure to plan ahead and put wishes in writing can cause increased stress and guilt for family members who must make decisions without any guidance.
The emotional and spiritual cost of ignoring death. As described in episode 127, death is our greatest teacher about life. Those who fail to recognize the inevitability of death are less likely to live to the fullest and appreciate the moment because they think they have plenty of time.
If you care about any of these issues and have been learning about death and dying by listening to this podcast and the End-of-Life University Interview Series, you are the perfect person to become a “death educator.” Start by sharing what you’ve learned with family and friends and consider putting together your own class in your community to help educate others.
You can download my free pdf: Teaching Guidelines for a Death & Dying Class and get some tips and tactics for starting your own community death-ed class! When you download the handout you’ll receive an invitation to a special work group I’m putting together in March on brainstorming your class.
Stay tuned to future episodes of this podcast to get more information about death education: next week I’ll share an interview with Stacy Smith about teaching college students about death and dying. On February 22nd I’ll present an interview on End-of-Life University with the teacher and students from a high school death-ed elective.
I hope you feel inspired to become a “death educator” in whatever capacity suits you, whether you simply share your knowledge with family and friends or start a class in your community!
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This 4-module course is like having your own personal consultation with an end-of-life physician (me!) who guides you through completing your paperwork one step at a time!
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IN THE NEWS:
Facebook announces it will offer employees up to 20 days of paid bereavement leave and 6 weeks of paid leave to care for an ill loved one.
A study done by U of Colorado Anschutz showed that oncologists are reluctant to have conversations with patients about their prognosis and patients seem equally unwilling to discuss the difficult facts about their diagnosis. This demonstrates the need for better preparation for the end of life BEFORE the onset of a life-limiting illness.
Change Happens: How to be Prepared for the Ultimate Transition
What steps should you take now to be fully prepared for later life? I like to break them down into 3 categories: Paperwork, People, and Purpose.
Here are some suggestions for your own preparations:
Make sure you have completed an estate plan and/or will to protect your financial assets
Appoint someone to be your financial power of attorney AND a separate person as your medical power of attorney
Complete your advance directive (or living will)
Plan for your funeral and burial
Gather important documents, account numbers, passwords, etc. into on file where they will be accessible in the future (Check out the BE Ready Checklist for a list of all these documents you should gather)
Tie up “loose ends” in your life by practicing forgiveness
Make amends with the people closest to you
Say “I love you” whenever you have the opportunity
Talk with your loved ones about your healthcare wishes
Talk with your doctors (and also spiritual advisor or attorney if relevant) about your end-of-life wishes
Be prepared to care for an ill or dying loved one at home if that should become necessary
Think about your own sense of meaning and purpose in life–are you living life fully in each moment?
Practice being present in the moment by taking up mindfulness or using deep breathing
Recognize that your purpose is not really something you hope to accomplish in the future; it lies in how you live your life each moment
Face your fear of death so that you can fully prepare and then relax and enjoy all that your life offers to you
Click hereto download the End-of-Life Preparedness Assessment to see if you are ready!
Tune in every Monday for a new episode. Until the next time, remember: