EOLPodcast

Ep. 533 The Legacy of Hospice in the U.S. and Around the World with Dr. Robert Buckingham

Learn the history of the hospice movement in the US from one of the original founders.

My guest Dr. Robert Buckingham is a Professor Emeritus of Public Health at the University of Michigan and has been a pioneer of the U.S. hospice movement, having played a role in the founding of the very first hospice program in this country. In addition he has co-developed 81 hospice programs across the globe including the firs hospice for children with AIDS in Thailand. He is the author of 12 books – 7 dedicated solely to hospice and palliative care. His latest book is Understanding Loss and Grief for Women. Learn more at his website:

rwbuckingham.com

Watch on YouTube

Listen here:

This episode includes:

  • The birth of hospice in America
  • Current threats to the hospice movement
  • Dr. Buckingham’s involvement in developing hospice programs around the world
  • The historical philosophy of hospice care
  • The benefits of providing hands-on care to a loved one at the end of life
  • How the AIDS crisis helped fuel the growth of the hospice movement
  • Lessons learned from dying patients
  • Why he wrote about loss and grief for women and why we need to make sure we include men in grief work
  • Remembering that change takes time and taking the long view on our work

Links mentioned in this episode:

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 thanks to everyone who has bought me a coffee or made a donation on Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 509 A Future Path for Hospice and Palliative Care with Ira Byock MD

Learn about Dr. Ira Byock’s strategic vision for approaching the major issues facing hospice and palliative care.

My guest Dr. Ira Byock is a leading palliative care physician, author, and public advocate for improving care through the end of life. He is the author of the books Dying Well, The Four Things that Matter Most, and The Best Care Possible. He discusses his recent white paper “A Strategic Path Forward for Hospice and Palliative Care” and his 4-point approach for dealing with the current issues facing end-of-life care in the U.S. Learn more at his website and read the paper below:

irabyock.org

Listen here:

This episode includes:

  • Why it’s important for insiders in the field of end-of-life care to honestly face the current crisis and the grief we are experiencing
  • Fraud and abuse is a significant problem in hospice care today
  • There is a high variability in quality of care in hospice
  • Palliative care services are inconsistent across the country
  • Leaders in the field are not addressing the problems in the field
  • 70% of hospices are for-profit; profit needs to be tied to quality of care
  • There must be zero tolerance of fraud and abuse in end-of-life care
  • 4 elements of Dr. Byock’s strategic plan

Links mentioned in this episode:

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 Frank Voelker and Katie Daco who made donations on Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 489 Influencing Death: Teaching Hospice Care on TikTok with Penny Smith RN

Learn from “Hospice Nurse Penny” how she started working in hospice and ended up being a viral influencer about end-of-life issues on social media.

My guest this week is Penny Smith RN, known on social media as “Hospice Nurse Penny.” She discusses her journey to becoming a hospice nurse and her rise to fame on TikTok during the COVID-19 lockdown. Her new book Influencing Death, Reframing Dying for Better Living is an honest and vulnerable look at her own life story and what she has learned from working with dying patients. Learn more and connect with Penny at her website:

hospicenursepenny.com

Listen here:

This episode includes:

  • How Penny’s life experiences helped her be a better hospice nurse
  • How she helps family members feel comfortable when their loved ones experience end-of-life visions and dreams
  • How Penny went viral on TikTok
  • What information TikTok users are searching for about death and dying
  • Why social media platforms can be a good place to address misconceptions about death

Links mentioned in this episode:

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, to Simply Celebrate for donating on Paypal and thanks (again) to Robin Bissell for buying me 3 cups of coffee! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 480 How to Train Your Doctor with Matthew Tyler MD

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:

howtotrainyourdoctor.com

YouTube Channel

Listen here:

This episode includes:

  • How Matt ended up choosing palliative medicine as a career path
  • Overview of palliative medicine and how it differs from hospice
  • What a palliative doctor does
  • How to find a palliative provider near you
  • Why early referrals to palliative medicine are important
  • How the palliative care team can help patients and families make decisions about medical care
  • Why many doctors can use training to have better serious illness and end-of-life conversations
  • Why Matt started creating content for social media sites
  • The power of short, informative videos online

Links mentioned in this episode:

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.

EOLU Blog

What to Do When a Loved One Refuses Hospice Care

by Karen Wyatt MD

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.

EOLU Blog

How Hospice Care Can Bring Families Together

by Karen Wyatt MD

When Gail and Gloria admitted their elderly mother to hospice as she neared the end of her life, they mentioned that they had a younger brother who had been estranged from the family for the past twenty years. The sisters agreed that they did not want him to be notified of their mother’s condition or to be part of the decision-making process. But then they learned from the hospice nurse that their mother had confided her deepest wish: to see her son again and to have her children reconcile their relationships. Finally Gail and Gloria agreed to reach out to their brother and ultimately the three of them were able to heal their differences and care for their mother as a united team. The sisters admitted that they were relieved to see their mother truly at peace at the end of life after they welcomed their brother back into the family.

Stories like this are repeated on a daily basis within hospices around the country. In fact one of the most rewarding aspects of working in hospice is the opportunity to see how families come together and strengthen their bonds when they learn that a loved one is nearing the end of life. Even families that have experienced stress and tension for years have managed to heal their differences when they are called to be at the bedside of a terminally ill family member. Here are some of the ways in which hospice helps to foster this type of reconciliation:

Teamwork is necessary to provide care.

A patient who receives hospice care at home must have family or paid caregivers available around the clock, which takes cooperation to arrange. Family members have to create a schedule for care and decide how to meet the needs of their loved one. This allows an opportunity for negotiation, which can bring out the best (or sometimes, the worst) of each person in the family.

Priorities shift at the end of life.

As patients and their families face their own mortality they often come to see that what really matters at the end of life is different than what mattered before. In the case of Gail and Gloria, their determination to keep their brother away soon faded when they saw how much their mother wanted them to forgive one another. Suddenly their old anger and resentments were no longer the most important issue driving their decisions and they began to see their relationship in a new light. 

Focus is on the needs of the patient.

When families come together to help a loved one they tend to focus their efforts on what is best for the patient, and harmony between family members is always better for the wellbeing of the patient than conflict. Dying people often want to know that their children, parents or siblings love one another and will take care of each other after they are gone. These wishes at the end of life can be powerful motivators for family members to heal their relationships.

Hospice staff helps with communication.

The hospice team includes a social worker, chaplain and often a counselor who are trained to help families with communication. These staff members can facilitate family discussions and mediate when conflicts arise. In our hospice we frequently reached out to estranged family members on behalf of our patients to invite them to reconnect with their loved ones. With help, the majority of these families were able to find peace after many years of disruption.

Caregiving can foster forgiveness.

The act of caring for an ill loved one requires determination and sacrifice, but also leads to deeper connection and intimacy. As family members work together to provide care and meet the needs of the patient they may soften their hard edges and let go of their demands for perfection from one another. This is a scenario that then leads to forgiveness as each person recognizes their interdependence and finds value in being close rather than being at odds with one another.

Hospice teams model compassion.

One of the greatest benefits of working with hospice is the heart-centered focus of the people who make up the hospice team. The nurses, aides, chaplains, social workers, volunteers, and even the administrators of the hospice are all trained to be comfortable with death and have developed their capacity for compassion as well as their medical expertise. When hospice team members visit their patients, family members have the opportunity to observe how to be present with a dying person and how to bring love and calmness to any situation. This powerful learning experience is available to families who choose to admit their loved ones to hospice at the end of life.

Of course, not every family will find a way to come together in peace and reconciliation when their loved one nears the end of life. In fact, some families are split even further apart over conflicts around how and where their loved one should receive care. But the likelihood of healing family disruption is increased when a decision to utilize hospice is made early on in the end of life process. It takes time to let go of past difficulties and find forgiveness so it’s never too soon to begin working toward that outcome. Patients and families both benefit from having more days together to focus on love, care and respect as life is nearing the end—and hospice team members are the perfect teachers and guides for that journey.

EOLPodcast

Ep. 454 Empowered Endings: Changing the Landscape of End-of-Life Care with Bob Uslander MD

Learn about an innovative model for compassionate end-of-life care that meets the needs of individuals and communities.

My guest Dr. Bob Uslander is the co-founder, with his wife Elizabeth, of Empowered Endings, a unique palliative and end-of-life care model addressing the physical, emotional, intellectual and spiritual needs of patients and families. He discusses the flexible model of care he created and how it functions to assist people who don’t qualify for hospice as well as those who are receiving hospice care but need additional services. Learn more at his website:

empoweredendings.com

YouTube Channel

Listen here:

This episode includes:

  • Dr. Bob’s journey from emergency medicine to hospice and palliative care
  • How recognizing gaps in the healthcare system inspired the work Dr. Bob is doing today
  • The importance of end-of-life doulas for restoring balance to the care that is offered to people
  • The types of patients served by Empowered Endings
  • How his team supports patients utilizing medical aid in dying
  • The lack of home-based palliative care is an issue in most communities
  • Concerns that some doctors may not offer adequate support to patients and families choosing medical aid in dying
  • How his foundation offers free bereavement support to families of loved ones who have utilized medical aid in dying

Links mentioned in this episode:

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 newest donor Beth. Also thank you to Marie Nelson and Laura Lee for donating through Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 451 Filling the Gaps in End-of-Life Care with Kaishauna Guidry MD

Learn how a physician creatively meets the needs of patients who don’t qualify for hospice services.

My guest Dr. Kaishauna Guidry is an author, podcaster, healthcare advocate, mentor and educator. She came to medicine and hospice later in her career and founded Mourning Dove Medical as a private mobile medical practice, serving home-bound patients at the late stages of life and she is the author of The Real Deal About Hospice: Short Stories Highlighting the Advantages of Hospice Care for Patients and Families. She discusses her path to this work, her books and podcast, and how she coaches physicians who want to begin working with hospice. Learn more about her work at her website:

mourningdovemedical.com

Listen here:

This episode includes:

  • Why Dr. G started a mobile medical practice
  • Why some patients get discharged from hospice
  • How Dr. G provides continuity of care for people who no longer qualify for hospice care
  • How she guides people who are “pre-hospice” to do advance care planning and to be prepared for hospice when the timing is right
  • How Dr. G educates physicians about working with hospice and palliative care
  • What the book The Real Deal About Hospice teaches patients and their families
  • Why we still need more education about hospice for the general public and the medical community
  • What is the “hospice lifestyle”

Links mentioned in this episode:

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 newest donors James Reinders, Karen, and Susan Wright. Also thank you to Frederick Marx for buying me a coffee! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 433 Medical Aid in Dying: A Physician’s Perspective with Dr. Bob Uslander

Learn about a unique medical practice that focuses on end-of-life issues for patients including medical aid in dying.

My guest Dr. Bob Uslander is an emergency medicine physician whose career evolved toward caring for the elderly and those facing the end of their lives. He created a novel approach to end-of-life care called Empowered Endings with his wife Elizabeth, a spiritual counselor and medical social worker, to ensure that patients and their loved ones have their decisions, goals and dignity honored at the end of life. Dr. Bob shares his experiences and thoughts around providing support for patients who choose to use Medical Aid in Dying. Learn more at his website:

www.empoweredendings.com

Watch on YouTube

Listen here:

This episode includes:

  • How Dr. Bob got interested in working with patients at the end of life
  • The significant gaps that currently exist in palliative and end-of-life care for patients
  • Why his practice focuses on holistic care for both patients and their families
  • How Empowered Endings works along with hospice and fills in the gaps when hospice cannot provide care
  • The need for physicians to support patients who choose to use MAID
  • Why MAID providers should have some special training in this area in order to properly support patients and their families
  • What it’s like as a physician to provide medical support for patients choosing MAID
  • Advice for other physicians who may be considering supporting MAID

Links mentioned in this episode:

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 those who’ve bought me a coffee! Also many thanks to all of you who joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

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Ep. 429 Debunking Myths About Hospice Care with Barbara Karnes RN

Learn how to bust through several common myths about hospice care that persist in our society.

My recurring guest Barbara Karnes RN is back again in this episode to talk about the myths that still persist in our society around hospice care. She shares her own journey of grief after the recent death of her dear husband and how our emotions can change our ability to see what may be right in front of us. We cover the most common myths we’ve encountered from our years of talking about hospice with the general public and what we can do to overcome them. Barbara is the author of the “little blue hospice book” Gone from My Sight and By Your Side: A Guide for Caring for the Dying at Home. Learn more at her website:

www.bkbooks.com

Listen here:

This episode includes:

  • How emotions can impact our experiences with hospice
  • Myths about hospice that involve medication management and fears of over-medicating pain
  • Myths that some doctors have about hospice including that it causes people to lose hope and that it’s only appropriate a few hours or days before death
  • Myths about what hospice is, where it is located and how care is provided and paid for
  • Why myths like these are harmful to patients
  • Why we need to get a clear message across about the benefits of hospice

Links mentioned in this episode:

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 those who’ve bought me a coffee! Also many thanks to all of you who joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 425 Omega Homes: Community Homes for Dying People with Kelley Scott RN

Learn how social model hospice homes are changing communities and improving end-of-life care for everyone and how you can start one where you live.

My guest Kelley Scott has been caring for dying people throughout the 37 years of her nursing career. She is the founder and executive director of Clarehouse, a “social model” hospice home in Tulsa OK. Kelley also serves as the president of Omega Home Network and provides consulting and mentoring to aspiring social model hospices. She discusses the Omega Home model and how other communities can implement it to improve end-of-life care for everyone. Learn more at the websites:

www.omegahomenetwork.org

www.clarehouse.org

Watch on YouTube

Listen here:

This episode includes:

  • What is a “social model hospice” or Omega Home
  • How Kelley first got interested in hospice and palliative care as a nurse
  • What inspired Kelley to found Clarehouse
  • Why Omega Homes are important to our communities
  • Advice for those who want to start an Omega Home in their community
  • Barriers to the Omega Home movement
  • How Omega Homes are funded

Links mentioned in this episode:

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 those who’ve bought me a coffee! Also many thanks to all of you who joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 420 Providing Comfort During the Last Days of Life with Barbara Karnes RN

Learn useful tips for helping patients and loved ones be more comfortable at the very end of life – small changes can make a big difference.

This week I welcome back my recurring guest Barbara Karnes RN, hospice nurse, author, speaker, thought leader and expert on end-of-life care. She is the author of ‘the little blue hospice book,” Gone from My Sight and the recently published By Your Side: A Guide for Caring for the Dying at Home. We discuss tips for caregivers to provide comfort to patients during the last days and hours of life when they may not be able to communicate their needs. There are dozens of “little things” that can make a big difference in the comfort level of our loved ones and patients and you’ll learn about them in this conversation. Learn more about Barbara’s work and books at her website:

www.bkbooks.com

Watch on YouTube

Listen here:

This episode includes:

  • Why grooming and hygiene matter for patients all the way through the end of life
  • Tips for good mouth and lip care
  • Preserving patient dignity by honoring their routines
  • Preventing skin breakdown
  • Importance of positioning and turning patients for maximum comfort
  • Dealing with breathing issues and “death rattle”
  • An alternative to adult diapers
  • Options for administering medications sublingually, rectally or as a skin cream

Links mentioned in this episode:

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 newest donor Michelle Sandner and to  Amrita for buying me a coffee! Also many thanks to all of you who joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 387 How to Save Hospice with Ira Byock MD

Learn about some positive steps that are needed to heal the current hospice industry in the U.S. and how your story can make a difference.

My guest Dr. Ira Byock is a leading palliative care physician, author and public advocate for improving care through the end of life. He is the author of Dying Well, The Four Things That Matter Most, and The Best Care Possible. We discuss his recent essay pinion piece published in STAT online: “Hospice Care Needs Saving,” which is a response to the November Propublica/New Yorker article How the Visionary Hospice Movement Became a For-Profit Hustle. Learn more at his website:

www.irabyock.org

Read the STAT article

Watch on YouTube

Listen here:

This episode includes:

  • Our reactions to the Propublica article
  • What the article got right about today’s hospice and why we need to take it seriously
  • What the hospice movement needs to work on to improve care for patients and rebuild trust with the public
  • Why internal “self-correction” is more important now for the hospice industry than expecting Congress to make changes
  • Why over-focus on profit is dangerous for the hospice movement
  • Why transparency, strengthened oversight, and legal accountability are important steps for saving hospice
  • How stories about current hospice care can be helpful as we move forward

Links mentioned in this episode:

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 newest patron Sara Perry! Your contributions make all the difference.

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Ep. 356 What Keeps Me Up at Night (about Hospice and Palliative Care) with Ira Byock MD

Dr. Ira Byock takes an honest and challenging look at worrisome issues within the hospice and palliative care field.

My guest today is Dr. Ira Byock who 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. He is a frequent guest on this podcast and the author of Dying Well, The Four Things that Matter Most, and The Best Care Possible. Today he shares some of the concerns he has about current issues in hospice and palliative care. Learn more about his books and his work at the website:

www.irabyock.org

Watch on YouTube

Read the transcript

Listen here:

This episode includes:

  • The history of hospice programs and how and why they began
  • For-profit hospices now outnumber non-profit hospices by nearly 3 to 1
  • Problems with for-profit hospices include poor staffing, patients are less likely to see a doctor or social worker, 10% fewer nursing visits
  • For-profits extract up to 20% margin from patient care and make it hard for non-profits to stay in business
  • Concerns about sending patients home for hospice care without providing training to family members
  • Staff are burning out because of moral distress and because of excessive case loads which are being imposed for the sake of profit
  • For-profit hospices are being traded on Wall Street and private equity firms are also buying up hospices
  • How a focus on marketing and “branding” is causing palliative care to distance itself from hospice and from death and dying
  • Why we have to be brave enough to talk about and deal with the things that people in our society are afraid of
  • Why the palliative care “brand” should be providing the best care possible through the end of life (instead of “at the end of life”)
  • What to do:
    • Don’t trust blindly – ask questions and be discerning
    • Don’t lose your outrage – speak up when you see poor care being given
    • Be strong advocates for one another
    • Support community-based non-profit hospices

Links mentioned in this episode:

  • Pre-order All the Flowers of the Mountain by Christina Holbrook here (and thank you!)

Buy me a coffee

Donate on Paypal

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 my newest donor Mary E. Moriarty! Your contributions make all the difference.

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Ep. 354 The Hospice Journey: A Step-by-Step Guide with Barbara Karnes RN

Learn about the basics of hospice care, when to consider it, how to talk about it with others, and what to expect during the dying process.

My guest Barbara Karnes RN is an internationally recognized author, speaker, thought leader and expert on end of life care. She is the author of the “little blue hospice book” Gone From My Sight: The Dying Experience, which has sold over 30 million copies worldwide in 12 different languages. Today Barbara shares her insights and stories about the hospice journey for patients and their families and walks us through each step of the process. Learn more about her work at her website:

www.bkbooks.com

Listen here:

This episode includes:

  • When is it time to consider hospice
  • Why hospice care is a special type of medical care
  • How to find a good hospice
  • What it takes to care for a loved one at home
  • What hospice does and doesn’t provide for families
  • How to talk to a loved one about hospice
  • What to expect as death draws near
  • How hospice provides comfort and pain management

Links mentioned in this episode:

Buy me a coffee

Donate on Paypal

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 Jan Wessel for increasing your pledge! Also thank you to Thilda Zorn for your Paypal donation and Bob Hoffman for buying me a coffee! Your contributions make all the difference.

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Ep. 351 Grief and the Best and Worst of Times with Dianne Gray

Learn how the death of her son inspired Dianne Gray’s current work as a death doula and patient advocate.

My guest Dianne Gray is a death doula, grief specialist and the Chief Innovation and Patient Advocacy Officer at Acclivity Health. After her son’s death from a rare neurodegenerative disorder she has dedicated her life to improving care for all adults and children facing serious illness. She shares her long journey with grief and how it has shaped and informed her work and her life.

Listen here:

This episode includes:

  • How Dianne survived the end-of-life journey and death of her son
  • The best and worst experiences of the dying process
  • How Dianne’s encounters with death and grief led her to the mission of helping others facing loss
  • Why death and grief are part of the wellness movement and must be included in life in order to be whole
  • What Dianne learned about life from the work of Elisabeth Kubler-Ross
  • Simple tools to ease grief and improve resilience
  • Therapy works for some people and not for others – keep searching for a good fit with a therapist
  • Learning that grief is a long journey to become someone new
  • Why viewing life as a fascinating adventure is helpful (and we never know what might happen next)
  • How social media can help or harm our grieving process
  • How Dianne works virtually as a patient advocate to get patients admitted to hospice and palliative care

Links mentioned in this episode:

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 newest patrons Phyllis Nickel and Kathleen Ribbens! Your contributions make all the difference.

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Ep. 349 Why My Family Chose Hospice with Kathleen Vallee Stein

Learn about the hospice experience from the perspective of a family member.

My guest Kathleen Vallee Stein worked for the California Department of Aging and has written numerous articles on caring for aging patents for more than twenty years. Her work has been published in the Christian Science Monitor, Los Angeles Times, Los Angeles Daily News, Pasadena Star-News, Orange County Register, and the Jewish Journal. Recently she has written a book about her family’s experiences as her father faced the end of life called Loving Choices, Peaceful Passing: Why My Family Chose Hospice, and today she’ll share insights from that hospice journey with her father. Learn more at her website:

www.valleeview.com

Listen here:

This episode includes:

  • How her family made the decision to choose hospice for her father
  • The challenges of having conversations about hospice with a loved one at the end of life
  • How the family had to bring up hospice with the doctor initially but he was helpful after that point
  • The relief experienced by the entire family and the patient once they made the decision to stop curative treatment and to enroll in hospice
  • Negative misperceptions about hospice are an obstacle to early admission
  • How her father’s temperament changed for the better after going on hospice
  • Why Kathleen hired in-home professional caregivers even though her parents were initially opposed to it
  • How they managed their parents’ financial issues as a family
  • Dealing with old family conflicts that arise at the end of life
  • How the hospice chaplain made a big difference for her father
  • The many positive surprises that arose during her father’s end of life
  • How they planned the funeral and made decisions about disposition
  • How she and her mother grew closer through the challenges of caring for her father at the end of life
  • Advice to those considering hospice for a loved one
  • Hope and “precious time” with her father in his last days

Links mentioned in this episode:

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.

EOLPodcast

Ep. 340 Caregiver Crisis: Meeting the Needs of the Future with Jessica Zitter MD

Learn about the current crisis in family caregiving and what you can do to help.

My guest Dr. Jessica Zitter is a specialist in Critical Care and Palliative Care medicine and the author of the book Extreme Measures: Finding a Better Path to the End of Life. Her work is featured in the documentary Extremis as well as her new film, Caregiver: A Love Story. Today she discusses the current crisis situation for family caregivers who are drastically overworked with little support. This is one of the most important topics we can address for the future! Learn more at these websites:

www.jessicazitter.com

www.caregiveralovestory.com

Read the transcript here. Watch video on YouTube

Listen here:

This episode includes:

  • What inspired Jessica to create Caregiver: A Love Story
  • How film is a compelling medium for encouraging people to change their behavior
  • How medical providers are often unaware of the stresses facing family caregivers
  • More people are now dying at home than in the hospital which means there is huge need for caregivers
  • 1 out of 5 Americans is caring for a loved one at home
  • The burden experienced by caregivers is physical, mental and financial
  • We need a workplace culture that supports caregivers
  • Family caregivers are providing billions of dollars of unpaid work for an average of 4.5 years
  • Hospitals and doctors are doing a poor job of preparing caregivers for the tasks they will face – The Care Act requires them to provide education (but it’s not happening)
  • Hospice staffs are also burdened by the caregiver crisis
  • We also need to build up and support professional paid caregivers

Links mentioned in this episode:

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.

EOLPodcast

Ep. 337 The Hospice Doctor’s Widow: A Caregiver’s Journal with Jennifer O’Brien

Learn about a beautiful, artistic journal that explores the caregiver’s journey through dying and grief.

My guest this week is Jennifer O’Brien, author of the creative, gorgeous journal: The Hospice Doctor’s Widow. She discusses her journey as she cared for her husband who was a hospice and palliative care physician diagnosed with stage 4 cancer. We talk about grief and loss and caregiving in this intimate conversation. Learn more at her website:

www.hospicedrswidow.com

Get the book here

Listen here:

This episode includes:

  • Why this book is ideal for caregivers and people dealing with grief
  • How Jennifer created the art for the book
  • How Jennifer incorporated her husband’s wisdom into the book
  • What is “Precious Time” and how did that inform the way she and Bob spent his last days of life together
  • Navigating anticipatory grief for caregivers
  • Why the patient and the caregiver are going through two different processes
  • Why the survivors’ journey can be more difficult than the patient’s journey
  • What is the Triad of Certainty
  • Advice for caregivers
  • The At Peace Toolkit – A Guide to Being at Peace with End of Life

‘Precious Time’ is when you say what you need to say and don’t say what you will later regret.”

from The Hospice Doctor’s Widow by Jennifer O’Brien
  • A Year of Reading Dangerously – Register here
  • Get the At Peace Toolkit from Jennifer here

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 new patrons G. Thackrey and Mary Susan Graham! Your contributions make all the difference.

EOLPodcast

Ep. 332 Technology Advances for End-of-Life Care with Jeremy Powell

Learn about exciting new technology that promises to help more patients be referred for hospice and palliative care in a timely manner.

My guest Jeremy Powell is the Founder and Chief Executive Officer of Acclivity Health Solutions, a company that aims to transform the management of advanced illness while honoring the patient’s dignity, goals and values. He discusses how technology can help us solve some of the greatest challenges we face in the provision of end-of-life care and why we should embrace technology rather than feel intimidated by it. Learn more at the website:

www.acclivityhealth.com

Listen here:

This episode includes:

  • Current healthcare challenges (including hospice and palliative care) that urgently need to be addressed
  • How COVID-19 has impacted these challenges
  • What technology is being developed to address the challenges facing hospice and palliative care
  • How Machine Learning can provide data that leads to more timely referrals to hospice and palliative care
  • Why lack of interoperability in electronic health records is a deterrent to good patient care
  • How the “3rd Platform” for EHR’s will deconstruct the silos that have existed in healthcare
  • How COVID-19 helped accelerate acceptance of telemedicine
  • Why it’s necessary to look at healthcare finances in order to ensure the survival of hospice in the future
  • Why a technology-driven approach to care does not threaten but can enhance patient-centered care at end of life

Links mentioned in this episode:

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 new patrons Mary Ganapol and Katherine Pettus! Your contributions make all the difference.