Learn how talking about death and grief on a podcast can help us face tragedy and loss together.
My special guest David Ferrugio is the host of DEAD Talks Podcast, where he hosts guests like Tony Hawk, Neil deGrasse Tyson, Billy Carson, David Dastmalchian, Bryan Callen, Hospice Nurse Julie and many more over a growing audience of nearly 1 million followers, including social media platforms. He discusses his story of loss at the early age of 12 and his passion for helping others face grief by sharing conversations with his guests about loss. As current residents of Los Angeles we also talk about the recent fires that have devastated this city. Learn more about David’s work and podcast at this link:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu. Your contributions make all the difference and ensure this podcast stays ad-free.
Learn about a Top Ten Playlist of songs selected by hospice patients for their own end of life journey.
We start out this new year with another episode our special series: Death & Grief in Pop Culture. This week my co-host Ben Kintisch and I will be reviewing the Top Ten Songs from an end-of-life playlist created by hospice patients in the UK. Ben is a cantor, hospice and eldercare chaplain, music teacher, and the creator of Life Review: The Hospice Musical. Learn more about Ben’s work at his website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu and to everyone who has bought me a coffee or made a donation through Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.
Find out what you may have missed in 2024 if you haven’t listened to every episode!
In this solo episode I recap some of the episodes of this podcast that had the greatest impact on me personally and professionally! All of the interviews from 2024 were fantastic but if you missed any of these be sure to take a listen! Thanks for your support this year! Looking forward to another amazing year – be sure to subscribe and leave a rating and review if you enjoy this content.
HAPPY NEW YEAR AND MANY BLESSINGS TO YOU AND YOUR BELOVEDS!
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporters Nancy Walker and Linda Fennigbauer and thanks to Linda for also making a Paypal donation! Your contributions make all the difference and ensure this podcast stays ad-free.
As the anniversary of my mother’s death approaches I’m reflecting back on that first year after her death and how I navigated grief through the year, including the holidays. I was with Mom for the week before she died and had the privilege of shepherding her through that transition—a moment I had been preparing for since I first became a hospice physician. I knew many years ago that I would be with my Mom on the day she died and that it would be one of the most important days of my life.
Her death itself was actually joyful, though it was a process that took a great deal of inner work on her part, which has also been true for many of my hospice patients. Mom had been ready and waiting to “go home” for the previous 5 years and was relieved that her time had finally come. So as she took her last breaths I had to celebrate on her behalf, that her struggle was coming to an end, even while my heart was breaking as each thread of our physical connection slipped through my hands and I confronted the enormity of that loss.
For days after her death I was in a heightened state of consciousness—sensing her presence everywhere around me, exquisitely aware of the beauty and fragility of absolutely everything in existence. Every portal of my being was wide open and love poured freely into and out from my heart as I delicately negotiated those tender days.
But within a few weeks I had retreated into the protective cocoon of grief, while I went through the motions of daily life, numb and slightly dazed. I could no longer recall what it felt like to be in that incredible state of lightness I had experienced immediately after her death and I concluded that it had simply been a symptom of sleep deprivation.
Over the next few months I kept myself incredibly busy as I joined a mastermind group, traveled to a publicity summit, became a radio show host, produced a digital workshop and created an online interview series, along with doing speaking engagements in various parts of the country. I stayed constantly on the go and rarely took a moment off, even when I was “on vacation.”
I was proud of myself for being so resilient and productive. I didn’t realize that I had actually been hiding for all of those months from the grief that was mounting up inside me. But then everything fell apart: my radio show was cancelled, the interview series ended, my mastermind group moved on without me, my publicity contacts stopped communicating and I had run out of speaking engagements.
Winter weather had arrived, the holidays were looming, my calendar was empty and I had nothing to show for a year of exhausting over-commitment and frantic busy-ness. I suddenly recognized how short the days had become as I laid awake for hours in the darkness, lost in my own emptiness.
“This is my first holiday season without Mom,” I thought to myself, remembering how much she loved these times of celebration and always made each moment feel so full … full of love and joy and laughter. And now, though I had the financial resources to buy anything I wanted or needed, I could not even begin to fill this emptiness that haunted me deep in the darkness.
How had she done it? What “magic” had she created to make each moment of anticipation before a special holiday feel so extraordinary, so full of meaning?
Searching for answers, I unpacked a box of some of her prized holiday decorations I had “inherited” after she died: a glittery ornament she and my grandmother had pieced together from old greeting cards; a tree-shaped wall hanging she and her sister made from broken green and brown glass (beer bottles my grandfather found in the trash behind a local dance hall) and adorned with old costume jewelry; various vases and candle holders she had crafted from discarded plastic bottles and glass jars, decorated with scraps of lace and fabric.
I had found these “treasures” of hers to be deeply embarrassing when I was a teenager and my friends from across town would visit our little house. They lived in huge homes, fancily decorated with porcelain figurines and hand-painted glass ornaments, which no one was allowed to touch. Yet my mother, oblivious of our humiliating low social status, proudly displayed her homemade trinkets as if they were priceless works of art.
Lost in these memories as I held the fragile greeting card ornament in my hands, I suddenly realized what my mother had been able to do all those years ago …
She had created something from nothing …
She had excelled at making each day seem special, even though her resources were limited. She managed to create little miracles everywhere she went, though her pocketbook was empty. She took things that were unwanted and discarded and gave them new purpose and meaning, finding the hidden beauty in everything.
She did this even with the destitute families she met who needed a place to live—she allowed them to move into the little rental house she owned, knowing they wouldn’t be able to pay their rent for several months. “You will make it up later when things are going better,” she would tell them. And her grateful tenants, relieved that someone finally saw something of value in them, almost always repaid her.
As I arranged my mother’s treasures on a shelf in my living room, I suddenly knew what I needed to do. I would find my way through this grief that was smothering me by doing what Mom would do: make something from nothing for the holidays.
That night when the sun went down and the temperature dropped well below freezing, I placed two buckets of water out in the snow. They froze around the perimeter and remained hollow inside, forming beautiful sparkling ice lanterns that glowed with the light of the candles I placed in them.
I situated these ice lanterns at the top of my driveway, where they illuminated the path toward home in the deepest darkness of night though they were composed of “nothing” but water. Each evening as I trudged through the snow to light them I took comfort in the warmth emitted by those tiny flames and found hope that perhaps this light will also guide others who are wandering in the dark shrouds of grief toward the home they are seeking.
Though Mom will never again be with me physically and I will never again open a present from her on a special holiday, I have received the most important gift she could ever give me: the ability to cherish what really matters in life, to find the hidden beauty in everything, to make something from nothing.
And that has become my path through this process of grief: to continue to honor Mom’s memory by offering up whatever I have as a gift to the Universe, free from self-judgment and embarrassment, cherishing each moment as a priceless work of art, creating always:
Something from nothing …
Light in the darkness …
Fullness within the emptiness.
It is all I can do right now … and indeed … all that needs to be done.
Enjoy this very first conversation with my friend Barbara Karnes as we get to know one another and discuss our hopes for the future of hospice care.
This episode is a replay of my very first interview with Barbara Karnes RN that appeared on the EOLU speaker series but not on the podcast. Barbara is a pioneer in the hospice movement and a world-renowned speaker, author and educator. You’ll hear us getting to know one another and talking about her work at that time, which has expanded and grown over the years. Enjoy our conversation and remember that some links and programs mentioned back then may have changed. For up-to-date resources go to Barbara’s website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
Recently there has been a growing focus for individuals in our society to look at their hopes and desires for the end-of-life and put those wishes into writing. The Five Wishes document and The Conversation Project Starter Kit, along with many online options, have helped people think about that day when life will come to an end and put those thoughts and feelings into writing.
But the most important step in the end-of-life planning process is to talk about those wishes with loved ones and that conversation is often difficult to initiate. How do we start talking about death with people who aren’t sure they want to discuss it? How do we address the experience of loss and grief, which is also often avoided in our society?
One idea is to use a film, perhaps during a family “movie night,” to help introduce the topic and get the discussion started. Films project the stories of characters onto the screen and allow us to look at difficult subjects from a distance without feeling personally involved. The stories portrayed in movies can also inspire the imagination, stir up emotions and provoke deep thoughts—all of which can be helpful during a conversation about death and grief.
Here are some suggestions for creating a special “movie night” exploration of death and grief:
Allow ample time
Choose a night when nothing else has been planned so there will be time and space for the conversation to unfold naturally after the film.
Keep it cozy
Make sure the seating arrangements are comfortable for everyone, provide snacks and beverages, and minimize outside distractions that might take attention away from the film and the conversation.
Select the film carefully
Consider the age and comfort level of the people you want to engage in conversation as you make your choice. Also be clear about your objective: do you want to inspire a discussion about death in general or do you have specific topics to bring up such as hospice care or living fully at the end of life or facing grief after the death of a loved one?
For example, The Bucket List is a great film to kick off a conversation about how to live life fully when you know you are going to die. His Three Daughters shows the difficulties of family dynamics when one member is dying. Terms of Endearment focuses on the mother-daughter relationship and portrays the dying process and the grief that follows. Many holiday movies like The Christmas Checklist focus on characters who are experiencing grief when others are celebrating. If children are part of the conversation, TheLion King, Coco or Up could help address issues of grief after loss and the fact that death is a normal part of life.
Have a few questions ready
Don’t force the conversation but be prepared to get it started with your own comments or questions. For example ask “What’s on your bucket list?” or “What would you give as a gift if you knew it was your last Christmas?” or “How do you think Mufasa’s death changed Simba?” or “How did the Christmas Checklist help Emily process her grief?”
Do it again
In case your first movie night conversation doesn’t go as well as hoped, plan to try again with a different film and a different approach. These conversations are challenging but extremely important so don’t give up on the idea!
Since death is a natural and universal part of our human existence we really should be talking about it on a regular basis. Get creative and imagine how you might bring up the discussion after other films your family might watch together. Remember that families who have talked about death are more likely to have positive experiences when a loved one reaches the end of life. It’s definitely a conversation worth having!
Learn how a college student investigating death and dying is starting student-run Death Cafés on her campus.
My guest Jenna Yeam is a senior at Duke University who is investigating what it means to die well anyhow we can help people die better. As part of her thesis she interviewed 67 death doulas to learn about the major issues that interfere with experiencing a “good death” and will publish her results in the future. She is now organizing student-run Death Cafés, called Dying with Duke, to encourage young people to have open conversations about death and dying. Learn more on this Instagram account:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporters Nancy Walker and Linda Fennigbauer and thanks to Linda for also making a Paypal donation! Your contributions make all the difference and ensure this podcast stays ad-free.
I was 16-years old when I first began to think about my own death. A classmate of mine died from a fall while hiking, which caused me to recognize that it is possible for a young person (including me) to die at any moment. For the first time, death became real to me and since that event I have thought about death every day. In fact I might say that I have kept “death on my shoulder” like the character Billy Jack from the movies of the same name that were popular in the 1970’s.
But I am not alone in my tendency to dwell on thoughts of death. In fact, contemplation of death is a spiritual practice in Tibetan cultures. Moreover when I recently interviewed a priest about the Catholic perspective on death he quoted St. Benedict as saying, “Remember to keep death before your eyes daily.”
While this might sound like a morbid practice, I can assure you that it is not. Recognizing my own mortality on a daily basis has actually changed my life in profound ways and provided many benefits:
Gratitude for every moment of life
Knowing that life is fleeting helps me appreciate each experience and every moment to a deeper degree than ever before. I no longer take life for granted and value the time I have been given.
Restructured priorities
With the briefness of life in mind I am able to focus on those things that really matter to me (like love and relationships) and let go of the superficial and trivial details that compete for my attention. I don’t “sweat the small stuff” now because I know it’s not really important.
Taking responsibility for my life
I now see that life is precious and the meaning it contains is up to me. No matter what has happened in my life, I am responsible to make the best of it and create as much love as I can. I no longer waste time blaming other people or circumstances for the problems I encounter.
Looking within myself for answers
I also have learned to seek my own answers from within rather than looking outside of myself for guidance. No one else can understand my life or my purpose better than me so I need to find my own path and follow it.
Finding joy in being alive
The French value the concept of joie de vivre, which literally means “the joy of being alive.” Recognizing that death could arrive at any time helps me cherish the gift of life. I wake up joyful each day because I am still here with another opportunity to experience life on this planet, even if I am sick or if life’s circumstances aren’t exactly what I would have chosen. Simply being alive is enough to create deep joy.
Being prepared for anything
Since I have spent a considerable amount of time contemplating my own death, it won’t really be a surprise to me if or when I hear the words “You are going to die” from a doctor some day. I have already known that fact for most of my life and I have made sure I am ready every day. While I may not be happy to hear those words I won’t be shocked or angry or depressed. Death is an important part of life and I am prepared to face that truth.
So for me, thinking about death is a simple spiritual practice that has changed and exhilarated my life. I wish I could teach everyone that but our society remains entrenched in fear and avoidance of death.
But now is the time when we need, more than ever, to find joy in every moment, to be grateful for all of life, to be prepared for the future, and to shift our priorities to what really matters. Now is the time to learn to truly love life by embracing the reality of death.
Learn about palliative medicine from a physician who is also a popular content creator on social media.
My guest Dr. Matthew Tyler is a board certified physician in internal medicine as well as hospice and palliative medicine. He is the creator of How to Train Your Doctor, a coaching platform designed to help patients and caregivers make medical decisions related to serious illness and end of life. He specializes in creating short videos for social media that cover a variety of topics related to hospice and palliative medicine. Learn more at this website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporter Monica Park, and to Dana Tuttle for buying me 3 coffees! Your contributions make all the difference and ensure this podcast stays ad-free.
When it was time for Doris, an 85-year old woman with biliary cancer, to be discharged from the hospital, her physician suggested to her and her family that she be admitted to hospice care. But Doris refused hospice care even though her family members strongly supported the doctor’s advice.
It’s not unusual for a patient to have concerns about signing on to a hospice for care and for families to get caught up in a struggle as they try to find the best care possible for their loved one. There are many reasons a patient like Doris might say no to hospice and it’s important for care providers and family members to try to understand her feelings. Here are some steps to take if you find yourself dealing with a loved one who refuses hospice care:
Listen without judgment.
Begin by calmly listening to whatever the patient needs to say. Don’t argue or try to persuade her to change her mind—just listen to see what you can learn about her feelings.
Ask why she is not comfortable with hospice.
If she hasn’t told you yet her reasons for saying no, ask her why. But again, don’t argue with her reasoning. Careful listening will help you understand her better and get a glimpse of how she views end-of-life care. She may have misconceptions about hospice or she may have had a traumatic experience with death in the past. Provide her with a safe space to express her feelings even if you don’t agree with them.
Validate her emotions.
Let her know that you understand why a decision to begin hospice care can be frightening and overwhelming. Don’t push or rush her to choose hospice but agree that she has the right to turn it down.
Gently provide reassuring facts.
Once you understand where her resistance is coming from you can gradually begin to provide additional factual information about hospice. Again, don’t argue—just mention some of the details about hospice and how it functions as a way of answering her fears. For example, many people fear that accepting hospice care means that death will come more quickly. In this situation you might explain that a study has shown that patients who receive hospice care actually live longer than patients with an identical diagnosis who do not receive hospice care.
Arrange for her to meet someone from hospice.
Invite a hospice staffer to meet her and answer questions. Connecting with a real person who represents the hospice team can go a long way toward reassuring the patient that hospice care is provided with compassion and empathy as well as expertise. During that face-to-face meeting you can bring up some of your loved one’s questions to show her that you are on her side and share her concerns.
Respect her wishes.
Let your loved one know that she has control over her own decisions and that you will honor her choices. She needs to feel supported or her resistance to hospice might increase if family members apply too much pressure.
Offer alternatives.
If palliative care is available in your area see if she might agree to accept that rather than hospice, since she will be able to continue curative treatments while receiving palliative care. Some patients may also agree to be admitted briefly to a home care service for evaluation of their potential for improvement. This temporary measure could buy some time while your loved one adjusts to the idea of hospice care.
Ultimately no one should be pressured into receiving hospice care if it doesn’t meet her preferences. But most patients who initially refuse care from hospice end up agreeing to it eventually and feeling good about their choice. We must allow patients the freedom to choose their own course with whatever timing is best for them. Showing respect for their right to make decisions for themselves is an important step to help patients embrace their own individual end-of-life process.
Learn how grief is a major theme of Alexander Hamilton’s life as portrayed in Lin-Manuel Miranda’s hit musical Hamilton.
Today I’m joined once again by my co-host Benjamin Kintisch for another episode of the Death & Grief in Pop CultureSeries. Ben is a cantor, hospice and eldercare chaplain, music teacher, and the creator of Life Review: The Hospice Musical. Together we talk about all the interesting ways death shows up in culture, what we might learn about death and grief through the lens of pop culture, and how we can utilize popular references to death and grief to increase death literacy for ourselves and others. This week we are discussing the Broadway musical “Hamilton” Learn more about Ben’s work at his website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporters Bonnie and CJ, and to everyone who has bought me a coffee or made a donation through Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.
Learn how an astrologer uses death charts to provide insights and solace for people who are grieving.
My guest Moon Zlotnik is an astrologer who has been practicing and teaching astrology full-time for over 40 years. Her practice of modern astrology includes a focus on both psychology and spirituality. She discusses her discovery of the helpfulness of astrological “death charts” for grief after the death of her twin sister and how she uses the charts now in her work with bereaved clients. She is the author of the book Star Sisters: An Astrologer’s Memoir of Twin Loss and is currently working on a second book about death charts. Learn more at her website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu. Also thank you to everyone who has joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.
Learn from an expert about the dynamics of the dying process and the most common concerns of caregivers as their loved one approaches death.
This week I’m welcoming once again my recurring guest Barbara Karnes RN who is a hospice nurse, author, thought leader and expert on end-of-life care and the dynamics of dying. She is the author of Gone from My Sight: The Dying Experience, also known in the hospice world as “the little blue book,” which remains the leading resource on the market today educating families on the signs of approaching death. She discusses the most common questions and concerns that arise for caregivers as their loved one goes through the final stages of life. Learn more about Barbara’s work and books at her website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporter Jim Schultz and to everyone who has bought me a coffee or made a donation through Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.
As a hospice doctor I have often worked with families caring for a dying loved one at home. But I have only once had the opportunity to switch places and be the caregiver myself when my mother died. That was a profound and educational experience for me as I suddenly understood personally what it was like to be with a dying loved one around-the-clock.
While before I had imagined what it felt like to sit up all night at the bedside holding vigil before the moment of death, I can now vividly recall the exhaustion and the uncertainty of that experience. Now I know far more than ever before what the act of being a caregiver takes and what it gives back.
I was able to let go of little moments with her one-by-one.”
The greatest blessing of being a caregiver for me was the opportunity to experience grief even before my mother had died. I was able to let go of little moments with her one-by-one: the last time she ate a spoonful of the custard she loved so much, the last morning she brushed her own hair, the last afternoon she shuffled through the kitchen with her walker, the last evening she sat on her recliner and listened to the news, the last night she touched my face and kissed me goodnight.
With the arrival of each new day, something else had been lost and the little world we were sharing became a bit smaller until we were left with only the bed she rested upon and the chair where I sat next to her. But I was able to let all of it go gradually while she was letting go of life and the pain I felt was somehow bearable.
There are other ways that the act of being a caregiver helped me:
Providing hands-on care and keeping my mother comfortable in her last hours gave me comfort as well. I was not just passively observing her dying process but I was helping her and it was a tremendous relief to be able to do something for her at that time.
I knew I was honoring her wishes by keeping her at home because she had talked with me about what she wanted at the end of life. Everything I did and every moment I spent with her felt “right” to me because I understood her preferences.
I was there for special moments when Mom spoke a few words or opened her eyes and smiled. Those tiny little experiences mean everything to me now as I remember our journey together to her last breaths. I am forever grateful that I didn’t miss a single moment.
I could give her one last gift of gratitude by enabling her to stay in her own home and have the kind of death she wanted. While there is no way to ever repay a mother for all of her years of nurturing and tender care, being there when Mom needed me was one small gesture I could make to show her my deep love.
We forgave one another. Our relationship had not always been easy and there were some painful memories between us that we could never discuss. But in the middle of the night when Mom nearly fell out of bed and I was frantically trying to lift her back to safety, we connected in a moment of pure human frustration and love. Without saying a word we looked at one another and both understood somehow—life is difficult and we hurt one another along the way but nothing really shakes the deep love that resonates between our hearts. We both let go of all our resentment in that brief moment.
These opportunities were only possible because we had enlisted the aid of a home hospice team, who made regular visits and assisted me with the care that was needed. I could not have done the work without their help and I understand more than ever the important role played by hospice staffs all over the world.
I am a new person since caring for my Mom at the end of her life. I am a better doctor, a more compassionate wife, a more fun-loving mother, and a much wiser woman as I face my own aging. Life and death and grief … they are all what we make of them and how we take care of ourselves and others during the journey. I know this for sure now and the rest of my life will be blessed by that knowledge.
As a hospice physician who has cared for thousands of patients at the end of their lives, I had always assumed that hospice care would be an obvious choice for my mother when it came time for her to die. We had talked openly about my work for many years so I was not prepared for the fear and resistance that came up for her when it was time to choose the next steps in her medical care.
I soon learned that while Mom thought hospice care was wonderful and a blessing for other people, she was not prepared to accept it for herself. As we talked together I learned that she had many of the same misunderstandings about hospice care that I had heard from patients and their families in my work. Before she could agree to become a hospice patient we needed to address each of Mom’s concerns and misperceptions:
Does hospice mean “going without” medical care?
Mom feared that she would no longer be under the care of a doctor or be receiving attention for her medical problems. I helped her understand that hospice provides excellent care through a team approach that includes a doctor, nurse, aide, chaplain, social worker, and volunteers. Not only would all of her medical needs still be looked after, but she would actually be receiving the best possible care that focuses on the whole person, rather than just the disease.
Does hospice mean “giving up” on life?
Many people, including my Mom, have the misunderstanding that hospice should only be chosen when you no longer care about life. But in fact, I explained to Mom, patients who do choose hospice are able to enjoy life more fully because their time and energy is no longer consumed with difficult treatments and uncomfortable side effects. With the excellent symptom management provided by the hospice team, patients are able to spend time with their loved ones and enjoy special moments, such as these my patients have experienced: having a picnic in the park, watching a play, attending a birthday party, or going fishing.
Does hospice mean going to an “old folks home”?
Mom feared that if she chose hospice she might end up being admitted to a “home,” where she would be neglected or abandoned. I reassured her that hospice care would be provided in her own home by an attentive staff. She could be comfortable in her own surroundings with me and other family members looking after her with the help of the hospice workers. Those patients who need to be admitted to an inpatient facility still receive the same level of compassionate care that is provided in the home and can have loved ones at the bedside throughout their stay.
Does hospice mean being cared for by strangers?
Mom quickly learned during our introductory meeting with the hospice nurse that the healthcare workers who are attracted to hospice work are very special people. She immediately bonded with the nurse and recognized that she would be receiving not only competent care, but also compassionate, loving care. Her fears of being neglected or mistreated vanished when she saw that during her home visits she was free to ask questions and express her wishes.
Do hospice patients die more quickly?
Mom was concerned that choosing to move from curative treatment to supportive hospice care would shorten her life. But I was able to reassure her with statistics showing that hospice patients actually live longer than patients with the same diagnosis who do not receive hospice care. In my experience many patients lived more days than expected and also reported greater quality of life during those days.
By listening to Mom’s fears and providing her with factual information about hospice care I was able to help her choose to be admitted to a home hospice. She bonded with the staff quickly and looked forward to every visit. She set aside special books to give to her nurse that she thought she might enjoy reading and considered her a friend.
Mom’s last weeks of life were filled with laughter and love as she spent them in her home surrounded by the people and things she cherished. Hospice made it possible for her to stay in her home and offered support to me as her caregiver. We navigated her last days together, mother and daughter, and discovered our own special moments of healing and forgiveness that might not have been possible in a different setting.
During one of her last lucid days Mom, with tears in her eyes, expressed her thankfulness that she had chosen hospice because “this has all been wonderful.” She wouldn’t have had it be any other way. She wanted everyone to know that hospice eases fear and offers hope and love, which is the perfect way to spend your last moments of life.
Learn about a unique postgraduate program in Scotland that offers a global and cultural context to end of life studies for a diverse group of students.
My guest Marian Krawczyk is a medical anthropologist interested in the culture of health, illness and medicine, particularly in relation to the end of life. She is the Lead Convenor for the End of Life Studies Program at the University of Glasgow and will discuss what this program offers and what makes it unique in the field of end-of-life education. We will set the stage for future interviews with some of the graduates of the program where they will share their original research projects. Marian is also the founder of the End-of-Life Doula International Research Group, which you can learn more about at the following website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, What to Watch list, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially to Kitty for increasing your pledge, and to Roberta Cummins for joining the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.
When my mother reached the end of her life she had only two requests: that she be able to die in her own home and that I be by her side. But I knew as well that it would be very important for her to retain her dignity, even as her physical health was declining. Mom had always been a beautiful woman and took pride in how she dressed and presented herself to the world. So I realized it would be important to her to feel she was at her best even in the worst of situations.
In my research as a hospice doctor about providing the best quality care to patients I learned that the word dignity comes from the Latin word dignitas, meaning worth or value. I understood that one of the keys to preserving Mom’s dignity would be to make sure she always felt valued and worthy of the greatest love possible as she was dying. But how could I accomplish that?
According to studies done by Dr. Harvey Max Chochinov,[1] dignity at the end of life can be undermined by inadequately treated pain, lack of support both from family and from professionals, depression or hopelessness, increased dependency, and lack of quality of life. So using those guidelines I set out to make sure that Mom would not question her own value or worth as she was dying. Here are some of the steps I took:
Enlist the help of a local hospice.
The hospice we worked with provided a nurse who made home visits to assess Mom’s pain and other symptoms and then brought us the medications and medical equipment needed to keep her comfortable. Hospice also provided a home health aide who helped Mom bathe and change her clothes and bed linens when needed. So with the help of hospice Mom had reliable professional support and care for her pain and dependency needs.
Maintain her self-care rituals.
For as long as I could remember Mom had always had a nightly ritual of applying various cleansers and creams to her face, neck and eyes before she went to sleep. When she could no longer get out of bed I brought in a tray of her facial creams and helped her apply them, just as she had done every night in the past. This simple gesture helped her see that she was still the same person she had always been and that she still mattered.
Invite family and friends to visit.
A few days before Mom died I set aside some time when her closest friends and family members could stop by for a final brief visit. I fixed her hair, dressed her in her best robe and straightened up her bedroom so that she would feel comfortable having guests come in. She beamed brightly that day at the outpouring of love for her and had the chance to deliver her own messages of love to special people. She knew without a doubt that she was cherished.
Support her spiritual preferences.
Mom had always been deeply religious but in the last few days of her life she began to wonder why God was still keeping her alive when she was so ready to die. She told me many stories of her prayers for other people and miracles that she had witnessed and I helped her to see that perhaps she was still alive because there were still people who needed her prayers. This thought gave her great comfort and she decided to pray for blessings for the hospice workers who had been caring for her. She went to sleep on her last night of life recognizing that she had a valuable role to play even as she was dying.
Preserving my mother’s dignity in the last days of her life was the least I could do for her after the care she had given to me throughout my life. I learned that when we slow down, take time to listen and be present with our loved ones, they will tell us what they need in order to feel valued and worthy of our love. In the days and months following her death my own grief was easier to bear because I knew Mom had died in peace and love and with her dignity still intact.
Learn why you should start a death collaborative in your community and tips for getting started.
My guests this week are members of the Minnesota Death Collaborative and will share how the collaborative was created, including tips for others who might like to start a similar collaborative in their community or state. Michelle Kolling is a hospice volunteer and end-of-life doula who serves as secretary of the collaborative and Nina Guertin is an end-of-life doula, death educator and a co-founder of the original collaborative. They share their personal experiences and the benefits and challenges of collaborating with others. Learn more about each guest and the MN Death Collaborative at the links below:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, monthly What to Watch recommendations, Behind the Scenes Bonus content, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu. Also thank you to Anonymous for buying me a cup of coffee and to everyone who has joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.
Learn how death and grief are portrayed in pop culture through this new series that analyzes theater, film and music, starting with the Broadway musical Dear Evan Hansen.
Trigger Warning: This episode contains references to suicide and grief after suicide so use your own discretion if these are sensitive topics for you. If you are struggling with thoughts of suicide and need help call or text the National Suicide Hotline at 988.
My guest Benjamin Kintisch is a cantor, hospice and eldercare chaplain, music teacher, and the creator of Life Review: The Hospice Musical. Ben and I are teaming up for a new series on Death & Grief in Pop Culture to talk about all the interesting ways death shows up in culture, what we might learn about death and grief through the lens of pop culture, and how we can utilize popular references to death and grief to increase death literacy for ourselves and others. This week we are discussing the Broadway musical “Dear Evan Hansen.” Learn more about Ben’s work at his website:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, occasional movie reviews from 2 Doctors and a Movie, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporters Cheri and Mark and to Dana Tuttle for buying me 3 coffees! Your contributions make all the difference and ensure this podcast stays ad-free.
Learn how a palliative clinician and a researcher are helping to create a social movement for improving the patient and family experience of serious illness.
This week I’m welcoming Drs. Sammy Winemaker and Hsien Seow, creators of The Waiting Room Revolution and authors of the book Hope for the Best Plan for the Rest. Sammy is a palliative care physician and an associate clinical professor at McMaster University. Hsien is a professor in the Department of Oncology at McMaster University who publishes health care research focused on improving the patient and family experience for those facing serious illness. Together they co-host The Waiting Room Revolution Podcast to help patients and family members feel hopeful and prepared when facing serious illness. Their book Hope for the Best Plan for the Rest is the featured book for the month of September 2024 in A Year of Reading Dangerously reading group. Learn more about their work and download the discussion guide for the book at the links below:
Check out the Series I’ve recorded in the past here
Join the team atPatreon.com/eoluand receive free gifts like the “Mind if we talk about death?” mini-poster or Love Your Life sticker or coffee mug. PLUS get our regular bonuses: the monthly EOL News Update, occasional movie reviews from 2 Doctors and a Movie, and automatic access to A Year of Reading Dangerously!
If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my latest supporters Jenny Gedda, Carolynn Rafa Todd, and Karen Sueanna! Your contributions make all the difference and ensure this podcast stays ad-free.
