Learn about the “dark side” of the hospice business and how to identify and support organizations that are truly patient-centered.
My guest Jeffrey Lycan has spent the last 21 years of his hospice and palliative care nursing career as an advocate for improving care and quality of life for patients at the end of life. He will discuss the recent alarming reports issued by the OIG (Office of the Inspector General) about instances of negligent care in some hospices, the worrisome trend toward profit-centered rather than patient-centered care, and how to support community-based hospices that are preserving Cicely Saunders’ legacy of end-of-life care. Learn about the Why It Matters Campaign he has started:
The two OIG reports from July 2019 that exposed fraudulent and negligent care in some hospices (see links below)
What a “deficiency” in a hospice survey actually means
Business changes in the hospice industry that have contributed to flaws in the care being offered
How some hospices now focus on profit first rather than patient care first
How profiteering harms the hospice system, patients and staff
New MedPAC proposal for lowering the annual per patient cap for hospices and why it may be a good thing
How consumers can choose the best hospice for their loved ones
How to register a complaint about hospice care
The campaign Why It Matters: Preserving the Legacy of Hospice
As originally championed by Cicely Saunders, MD, the founder of the modern hospice movement, the hospice model of care was based on providing end-of-life care with both compassion and science, and offering this care through engaged community-based, not- for-profit programs.
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Learn how administrators and managers can better support their staff in providing heart-based care to hospice patients.
My guest Brenda Clarkson, with over 40 years of nursing experience in hospice, truly understands the mystery that surrounds the dying process and how best to support patients and hospice staff as they journey together through the end-of-life experience. She shares her model for returning to the roots of excellent hospice care while navigating today’s regulatory challenges as outlined in her book “The Heart of Hospice: Core Competencies for Reclaiming the Mystery.” Contact Brenda at:
Registration is now open for the 8-week online course Spiritual Journeys in Chronic Illness. Rev. Dr. Terri Daniel and I will be co-teaching the class, which is offered by the Applied Wisdom Institute in partnership with the University of Redlands. CEU’s will be available! Learn more here.
Mark your calendars now for the event of the year!!! Announcing the Beautiful Dying Expo, which will be held in San Diego CA on November 2-3, 2019. I’ll be there as a facilitator for the event and registration is open now for workshop presenters, vendors, sponsors, authors, filmmakers. Go to www.beautifuldyingexpo.com to learn more. Contact Michele Little at email@example.com if you are interested in being a presenter.
This interview includes:
Why honoring “the mystery” of dying and death is important
How the modern hospice movement has strayed from from the original heart of patient care
A new “mystery model” of hospice care that overcomes some of the challenges faced by hospices today
Core competencies of the hospice staff
The 4 phases of growth experienced by hospice workers
How to decrease the turnover rate of hospice workers
Tools for administrators and managers to choose the best staff for hospice work and support them emotionally and spiritually
Learn how death doulas can benefit both patients and staff when they are added to the hospice interdisciplinary team.
Today I’m sharing an interview with Sherry Majewski who is a hospice-certified LPN who went to become a Certified Death Doula and is now helping her employer create a doula program within the hospice. We talk about the benefits and challenges of adding doulas to the hospice team and why this is an important step forward as we work to improve care for the dying. Learn more about Sherry’s doula services at her website:
If you enjoy this content please share it with others and consider leaving a review on iTunes! Thanks again to all supporters on Patreon.com/eolu, especially my new patrons Joanna Lillian Brown, Karin Lindfors, Carol Marangoni, Cathy Clemens, Myra Bennett, and to Mandy Pierpont thank you for increasing your pledge!
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!
A HUGE THANK YOU to my latest supporter on Patreon.com/eolu: Karen Van Hoof! I appreciate your support very much. Thanks also to all of the other patrons – sign up and join the team for as little as $1 per month at Patreon.com/eolu!
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 it’s difficult to make black-and-white decisions for the end of life when death itself is a mystery that will unfold with its own timing.
This week is a solo episode in which I share two stories about hospice patients I cared for and the unpredictability of death, even when a terminal diagnosis is present. This reality means that we have to keep growing in our awareness and acceptance of death as a mystery, even while we complete paperwork that gives concrete instructions for our last days of life. AND I feature some clips from my beautiful daughter Gia’s new album of Healing Chants!
A HUGE THANK YOU to my supporters on Patreon.com/eolu: Julie Lester, Brian Hempstead, and Mandy Pierpoint! Your generosity means so much to me! And thanks as well to all of the donors who have made pledges over the past year. I appreciate you so much! If you’d like to become a patron and receive the Hospice Happy Hour Q&A recording each month along with other bonuses go to Patreon.com/eolu to learn more!
I learned through my hospice work that death is a mystery and cannot be predicted or controlled unless we choose to take it into our own hands. Even then the method we use to end our life might fail or we might die of other causes before we can carry out our plans. But that mysterious aspect of death makes it endlessly fascinating to witness. If we can adopt a beginner’s mind about death then we can gradually become more relaxed and less fearful as we watch it approach.
The stories of two of my hospice patients illustrate the mystery of death quite well. One man was expected to live for several months after he signed up for hospice but died the next day of a massive heart attack. Another was in terminal renal failure and, according to medical experts, could not possibly remain alive for more than 2 weeks. And yet, that patient survived an entire year (it’s a great story so please listen in!)
As we work to complete our advance directives and put our wishes into writing we should also remember that this paperwork is not a guarantee of how our final days will unfold. The legal forms just help us prevent an outcome we don’t want. But when and how death comes will still be a mystery and we may end up awake and alert during our final days and responsible for our own decisions. So we would do well to keep learning about death and growing in our acceptance. In that way we can best prepare ourselves for any decisions we have to make at the end of life.
Remember there’s a new episode each Monday! Please tune in again next week and, if you enjoy this content leave a review on iTunes.
As you listen to this broadcast I am currently in Italy–traveling and doing research for my new book on grief (also eating … a lot!) This episode has been pre-recorded (along with several others) so that there will be no interruptions in the podcast. If you want to see photos of my journey follow me on Instagram or Facebook.
This podcast is generously sponsored by donations on my page at Patreon.com/eolu. Thank you to all of my patrons–your support means everything to me!! Submit your questions for the next “Hospice Happy Hour” Q&A Sessionhere and I’ll answer them next month. You can become a patron for just $1 or $2 per month and you’ll receive access to the Q&A recordings, the Top 10 Interviews from EOLU, and the opportunity to have your work promoted on this podcast. Go to Patreon.com/eolu to learn more!
Dr. Ira Byock is a leading palliative care physician, author, and public advocate for improving care through the end of life. He is the Founder and Chief Medical Officer for the Institute for Human Caring of Providence St. Joseph Health.
Tune in every Monday for a new episode of the podcast! If you enjoy this content please take a moment to leave a review on iTunes – it will help other listeners find the podcast.
In this episode I’ll share my own “supernatural” dreams that occurred while I was caring for hospice patients. It’s time to come forward and talk more openly about these experiences to help shed light on the dying process and the after-death realms.
Register now for “An Evening with Ira Byock MD” which will take place on Monday August 21st at 6 pm Pacific/9 pm Eastern. We will be celebrating the 20th Anniversary of his groundbreaking book Dying Well. Dr. Byock and I will discuss the changes in palliative and hospice care that have taken place over the past 20 years and what changes still must occur to ensure that everyone has the opportunity to “die well.”
Click here to learn more and register (it’s free and you’ll receive the replay if you can’t attend live.) You’ll also receive the Dying Well Readers Discussion Guide – a very helpful resource for leading a book group or workshop on Dying Well.
This podcast is supported by generous donations to my page at Patreon.com/eolu. A HUGE “Thank you” goes out to my latest donor: Jane Duncan Rogers of BeforeIGoSolutions.com – a non-profit located in Scotland. And thanks as well to all of the other supporters who are chipping in a few $ per month to help keep the podcast and the End-of-Life University Interview Series on the air! Learn more or become a patron at Patreon.com/eolu.
I am currently planning an Autumn trip to Italy where I will be eating amazing food, viewing sacred sites, cycling, and researching a new book on grief. You can view my Pinterest board if you are interested in seeing all the locations on my “wish-list” for the trip. Feel free to make suggestions if you have a favorite spot in Italy that I shouldn’t miss! I’ll be sharing photos on Instagram and Facebook once the trip begins.
This week I attended a meeting at the IANDS 2017 Conference in Denver (International Association for Near Death Studies.) I sat together in a small circle with individuals from all around the country who have had near-death experiences and also with end-of-life caregivers who have had unusual “supernatural” experiences while working with the dying.
I was impressed by the courage of the group members who were willing to share their stories and risk being labelled as “flakey” or even crazy. And that’s what inspired me to record this podcast episode.
During my work with hospice patients on multiple occasions I experienced vivid dreams where I saw my patients in “soul form” (or a disembodied state) before they had actually died. These dreams brought me much comfort and also eased my fear of death. On some occasions I was able to share the dreams with family members who were comforted, as well, by the visions I had seen.
I have never shared these dreams publicly out of a fear of being ostracized by the medical profession. But the time for secrecy has long passed and we need transparency and truth in all matters surrounding death and dying. So I’m telling these stories in hopes that others might be inspired to talk openly about their experiences as well. If you have a story to tell but no one to share it with I hope you will email me at firstname.lastname@example.org and describe your experience – let’s support one another!
Tune in next week for another new episode. Until then remember ….
Learn how a fascinating research project with hospice patients is uncovering the mysteries of deathbed experiences.
In this episode I will share an interview with hospice physician Chris Kerr MD who is conducting a research project on the dreams and visions of his patients as they near death. You’ll hear the results of his ongoing project and how this work is helping to inform medical professionals about the end-of-life experiences of their patients.
This podcast and the End-of-Life University Interview Series are supported in part through generous donations to my page at Patreon.com/eolu! This week I would like to thank Cathy Duke for her donation, along with all of the other patrons who have offered their support over the past year.
AND all patrons will now be able to take part in a monthly “hangout” called Hospice Happy Hour as a thank-you gift for donating to the cause. When you become a patron you will receive email instructions for taking part in the call. Go to Patreon.com/eolu if you would like to make a donation (just $1 or $2 per month!)
In this interview hospice physician Dr. Christopher Kerr will share his research on deathbed visions and dreams of patients at the end of life. He will enlighten us about the potential for healing that resides in these experiences and why we should encourage patients to talk about them. We’ll discuss:
how he conducts his research project,
the nature of the dreams experienced by his patients
what he has learned from this work.
Christopher W. Kerr, MD is a practicing Internist in Buffalo, NY. Dr. Kerr graduated from Medical College of Georgia School of Medicine in 1989 and has been in practice for 27 years. He currently practices at Hospice Buffalo and is affiliated with Bertrand Chaffee Hospital, Erie County Medical Center and Gates Vascular Institute.
He recently entered the public forum with his extraordinary 2015 TED talk, and is frequently interviewed in the media about his work with the dreams and visions of the dying.
Tune in every Monday for a new episode of EOLU! Until next week remember:
You can help support this podcast and the End-of-Life University Interview Series by making a small monthly donation at www.Patreon.com/eolu. To thank you for your donation I’ll promote your end-of-life related website, business, or organization on this podcast. Thank you to all of our current patrons – you make this podcast possible!
SPIRITUAL CARE FOR NON-SPIRITUAL PATIENTS:
This episode was inspired by my recent attendance at the Accompanying the Dying Residential Retreat hosted by Deanna Cochran of Quality of Life Careand led by Kirsten DeLeo and Dr. Ann Allegre of the Spiritual Care Program. This retreat provided a deep dive into the task of providing spiritual care to our patients at the end of life and offered an amazing opportunity to explore our own depths of spiritual practice and presence.
In my work in hospice I have long thought about those patients who refuse all spiritual care because they are “not religious” or just not interested. But everyone has a spiritual aspect, whether or not they are aware of it or develop that part of themselves. And every dying patient is entitled to receive the presence and compassion of a spiritual care provider. But how can this care be offered without offending or intruding upon the patient’s own beliefs?
Theologian Paul Tillich has defined spirituality as one’s “ultimate concern” meaning that whatever really matters to a person at the very end of life is the expression of that person’s spiritual nature. So for some individuals the ultimate concern might be a religion or a particular practice, but for others it could be anything … even baseball.
In this episode I tell the story of a hospice patient whose “ultimate concern” was baseball and how we eventually recognized that instead of trying to get him to talk about the meaning of life or his regrets, we just needed to let him talk about baseball. Listening to his stories about his favorite team was the path that ultimately helped him heal some of old regrets and unfinished business.
This story illustrates the need for the following conditions whenever we provide spiritual care to a patient who doesn’t identify as having spiritual needs:
Listen. The importance of allowing the patient to talk about the topics of his or her choice cannot be over emphasized. Deep listening with a compassionate heart is essential for honoring the perspective of the patient.
Discover the “ultimate concern.” When patients are allowed to guide the conversation they will naturally reveal what really matters to them.
Honor the patient’s wisdom and experience. Listen with reverence as the patient talks about his or her values and priorities. Recognize what is sacred to the patient even if it seems ordinary to you.
Connect patients to their own feelings of peace and joy. The “ultimate concern” is usually the source of positive feelings and experiences for patients. Help them recall those moments of being connected with something greater by listening to stories or guiding them to re-imagine a previous happy occasion.
In the podcast you will hear how Warren’s story came to a close as an example of finding a path to healing by going through the ultimate concern of baseball. Enjoy listening!
Remember to tune in every Monday for a new episode. Until then:
What advice do hospice patients have about how we should live?
In this episode I’ll share some of the wisdom I gathered from my hospice patients as they faced the end of life. This simple advice can help us live more fully with less fear and worry.
This podcast is sponsored through the EOLU donation page at Patreon.com/eolu. By contributing just $1 or $2 per month you can help support the podcast and the End-of-Life University Interview Series. If you become a supporter I will happily promote your book, website, cause or organization on a future episode of the podcast!
Today I have a huge thank-you for my new patron on Patreon.com/eolu: Kerrie Noonan. Thank you for your support Kerrie!
In the News:
An article on Time.com listed “7 New Jobs That Are So ‘2017’” and included Death Doula as one of the new occupations! What’s great about this is the fact that a major news outlet is breaking through the taboo and using the word “death” and that there has been a recognition of the importance of people who assist others at the end of life. In Episode 71I listed Death Doula as one of the trends for the year and included links to several training programs for becoming a doula. If you are considering a career change or looking for some post-retirement work you might want to become a midwife for the dying. There will be a huge demand in the very near future for people fulfilling this role.
In a story reported on the Today show we learned that 31-year-old actor Chris Salvatore invited his 89-year-old neighbor to live with him when she was no longer able to live on her own. Salvatore and Norma live in the same apartment building and had been friends for about 5 years when she was hospitalized with leukemia and respiratory problems. When doctors told Norma she would have to go to a long-term care facility because she had no family members to care for her, Chris stepped up and took her into his home. He now provides care for her as she faces the end of her life. Doctors didn’t expect Norma to live through the holidays but she is thriving in her new home. This example of selfless generosity is exactly what we need as we move into the future where 25% of Baby Boomers will have no family members available to provide care to them. Well done Chris Salvatore – a huge salute to you from End-of-Life University!
What My Hospice Patients Wanted You to Know:
Here is some of the wisdom my hospice patients shared with me as they neared the end of their lives. I promised them that I would bring their messages to you since they are no longer here to speak for themselves.
“What seems important now doesn’t matter in the end.”
“Don’t worry so much about diet and exercise.”
“Your doctor doesn’t have all the answers for you.”
“Your life’s purpose isn’t what you think.”
“Religion is less important than learning how to love others.”
“Dying isn’t as scary as you think.”
“You’re going to die anyway so you might as well be ready.”
Listen to this episode so you can learn more about each of these statements. And then maybe you’ll be inspired to change some aspects of your life and prepare for the very end!
Be sure to subscribe to End-of-Life Interview Series (if you haven’t already) so you can listen to our fantastic educational interviews with EOL experts every month. Go to www.eoluniversity.com to register. And if you’d like to support EOLU and this podcast check out the donation page at Patreon.com/eolu.
Tune in next week for another new episode and until then remember: