EOLU Blog

How Hospice Care Can Bring Families Together

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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. 478 Death & Grief in Pop Culture: Hamilton with Benjamin Kintisch

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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 Culture Series. 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:

lifereviewmusical.com

View lyrics here

YouTube Channel

Listen here:

This episode includes:

  • How we can talk about difficult subjects with a touch of lightness and humor
  • Some of the most memorable moments in theatre deal with uncomfortable topics
  • Grief is a powerful lens through which to view the mega-Broadway hit Hamilton
  • Alexander Hamilton experienced multiple types of grief including survivor’s grief and guilt as a war hero
  • The poignancy of the death of Hamilton’s son Phillip and subsequent grief as expressed in the song It’s Quiet Uptown
  • How setting apart this song in contrast to others in the musical made it even more emotionally evocative
  • We need to experience the full spectrum of emotions in our grief
  • How Eliza Hamilton utilized her grief to take action and make a difference in the world

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 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.

EOLU Blog

When You Can’t be Present for a Last Goodbye

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By Karen Wyatt MD

When my niece died in hospice in another city a few years ago I was unable to travel there to say goodbye before her death. I was crushed that I didn’t have one last opportunity to hold her hand and tell her I loved her, but as it worked out that visit was just not possible.

In an ideal world many of us would like to be with our dearest loved ones at the end of their lives, to say goodbye and “I love you” one last time. But in this day and age we live very busy lives that often take place many miles away from our families so there are times when we cannot travel to be present for those special and fleeting moments.

Some of us may even go to great lengths to get to another city only to find that we missed the final breath by a few hours. This distressing reality can lead to unresolved guilt and grief as we blame ourselves for not being there. But here are some things I’d like you to know about the dying process based on my many years of hospice experience:

  • Dying has a unique time frame.

    Even with the best of medical knowledge we cannot accurately predict when a terminal patient will die. I have seen patients live far longer than seemed medically possible and also patients who died much sooner than expected for no obvious reason. Don’t blame yourself if you cannot be there at the “right” time since you have no way of knowing in advance when that time will be.

    • Dying is an internal process.

    In the last few days before death patients tend to turn inward and focus on the personal work they need to do in order to let go of life. They enter into a semi-comatose state where they seem to be having experiences that we cannot understand. They may express a desire to see a particular family member, but often they are preoccupied with their own process and don’t need much interaction with others. Most likely your loved one is not focusing on whether or not you are physically present in the room.

    • Each person’s preferences are different.

    Some people want to be surrounded by loved ones as they prepare to die, but others need to be left alone in order to complete the work they are doing. We usually cannot predict who will want to be alone in advance and even patients themselves, when asked about it ahead of time, don’t realize that they may need solitude during those last moments. Some people who have always been very social find that they no longer want to interact with others when they are ready to die. 

    While you may want to be there to say goodbye it’s possible that your loved one is content to have fewer visitors at that time. In fact one woman I know spent every moment at her mother’s side so that she would not die alone. But the mother took her last breath during a brief period when her daughter went outside for a few minutes. Apparently she needed to be alone to finally let go and her daughter simply had to accept her choice.

    • Sometimes dying patients seem to delay death

    Again without any medical explanation, some dying patients seem to be able to postpone the time of death in order to “wait” for a loved one who is expected to visit. I have seen many occasions when the patient had an intense need to see someone one last time and, against medical odds, survived an amazing number of extra days, until that person arrived. If your loved one did not wait for you to come please view it as a sign that there was no unfinished business between you and don’t blame yourself for not getting there on time.

    • The dying perceive things that we cannot explain.

    In my work with dying patients I have witnessed their ability to “see” and “feel” the love that others are sending to them, even from a far distance. Many of them have explained that they feel connected to distant family members and “know” that they are loved, even if those people cannot be physically present. Trust that all of your concern and loving thoughts have been received by your dear one and forgive yourself for not being able to be in the room at the time of death.

    If you know you cannot be there and you have a need to say goodbye try calling on the telephone to express your love. The day before my mother died she received phone calls from two dear friends who lived far away. Even though she was semi-comatose she listened as I held the receiver to her ear and smiled at the sound of their voices. She was unable to respond verbally but I could see that she heard the message so I reassured her friends that their farewells got through to her. 

    Remember that you have no control over the timing of your loved one’s death. Follow your heart and travel if you need to and you can but don’t stress if it doesn’t work out. Your effort and your loving intention will still be perceived by your loved one in some way or another.

    Trust that your loved one would not want you to carry a burden of guilt with you and create your own “goodbye” ritual if you cannot be there in person. On the day my niece died I gathered some wildflowers and dropped them into a flowing stream while I spoke all of the messages I would have shared with her at her bedside. My heart became much lighter as I imagined her standing next to me, watching the blossoms drift slowly downstream. 

    May you too find a way to be at peace with every farewell you must speak from a distance.

    EOLPodcast

    Ep. 477 Astrology as a Tool for Grief with Moon Zlotnik

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    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:

    astrologybymoonrabbit.com

    Get the book here

    YouTube Channel

    Listen here:

    This episode includes:

    • What astrologers do and various applications of astrology in our world
    • How Moon first got interested in working with people who are grieving
    • Why astrology is not inconsistent with science and can fit into a scientific understanding of the universe
    • The mystery of the timing of a person’s last breath
    • The profound grief of twin loss
    • What information is required before creating a death chart
    • The death chart can tell a narrative about the passage at the end of life and what transformation is possible for loved ones
    • Astrology can help put together the “puzzle pieces” of life and make sense of them
    • How Moon ensures that readings are empowering rather than fear-inducing
    • How these insights can help us live more consciously and purposefully

    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. 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.

    EOLU Blog

    How to Make a Difficult Decision for a Loved One at the End of Life

    kwyattmd

    by Karen Wyatt MD

    When family members are called upon to make a difficult decision on behalf of a loved one at the end of life it can be one of the most challenging situations they’ve ever faced. This stressful time is made even worse if they have never discussed end-of-life issues and have no idea what their loved one would want for themselves. Many families experience conflicts during these times that can cause feelings of blame and guilt that last for years.

    Every day in this country families struggle with difficult decisions of whether or not to continue medical treatment for loved ones who can no longer speak for themselves. In fact Pew Research Center estimates that about 10% of the general public in the U.S. will have to make such a choice on behalf of a loved one during any five-year time period.[i]

    To avoid such a crisis when a loved one becomes terminally ill it is important to have a conversation now about their end-of-life preferences. But if there’s no time left and you find yourself in the position of having to make a difficult decision for someone who doesn’t have an advance directive, here are some guidelines for how to proceed:

    Gather medical information first

    Talk with your loved one’s doctors and get as many facts as you can. Have the doctors explain the diagnosis and any additional complications that have occurred. Ask about the effectiveness of the treatment being recommended, the chances for recovery or improvement, and any side effects or additional suffering that might be caused by the treatment. Also ask what will happen if treatment is stopped and the condition follows its natural course. You might even ask the doctors what choice they would make if faced with this same decision for a loved one.

    Get expert advice

    If your hospital has a palliative care service ask for a consultation. The palliative care team usually consists of a doctor (or nurse practitioner), nurse, social worker and chaplain all of whom have been trained to help with difficult medical decisions. They can facilitate a discussion with you and other members of your family and offer their wisdom and experience from different perspectives. As a team they will help you understand the medical information and explain all options available.

    Remember past conversations

    Try to recall any past discussions you have had with your loved one when the subject of illness of the end of life may have come up. Think back to a time when your loved one experienced the death of someone close, perhaps a parent or sibling. Did your loved one seem at peace and accepting of the death or fearful and resistant? Try to recall any comments made or issues that were discussed to get some clues about the choices your loved one might make for care right now.

    Consider the statistics

    According to the NIH most Americans say they want to die at home, even though the majority still die in hospitals, nursing homes or inpatient hospice facilities.[ii]

    Also in a Pew Research Center study on attitudes toward aggressive treatment at the end of life, only a third of respondents say they would want everything possible done to keep them alive.[iii] The majority of people feel it would be acceptable to stop treatment in case of severe pain or incurable illness. Do you think your loved one would agree with the majority of people about these issues?

    Ask your loved one for guidance

    This last suggestion might sound strange if your loved one is unresponsive. But studies have shown that patients in coma are still able to hear when they are spoken to. Here is an exercise you can use to help you get in touch with the deeper wishes of your loved one:

    Sit quietly at the bedside of your love one and hold his or her hand. Take some deep breaths to help you get into a relaxed state then say aloud or to yourself, “I have a difficult decision to make and I need your help.” Close your eyes and imagine that you are holding her hand across a table while you sit together and drink tea or wine or whatever would seem natural for the two of you. See her as healthy and vibrant as you ask her what decision she would like you to make on her behalf. Keep breathing slow and deep and wait patiently for an answer from her that might give you a clue about her preferences. 

    Even if you don’t hear an answer during this exercise you will at least know that you tried to find out what your loved one would prefer and that you’ve done everything you could to make the best decision possible. Trust your intuition or “gut” feeling as you have a final discussion with the medical team.

    Be gentle with yourself

    After the decision has been made and carried out, be forgiving of yourself for whatever happens next. Trust that your loved one knows you have acted from love and done your best to make the right choice. If treatment is going to be discontinued you might create a ritual to say goodbye and thank you for the life they have lived and the love they have given.

    Whenever difficult decisions have been made it is normal to later have doubts and questions about the correctness of that choice. Recognize those feeling when they arise, acknowledge the pain, and then see that you are not responsible for your loved one’s life path even though the burden fell upon you to make a final decision. Life is a mystery and the end of life is even more mysterious. We cannot predict or control the events that happen … we simply must do the best we can with the options available to us.

    [i] http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die/

    [ii]https://pmc.ncbi.nlm.nih.gov/articles/PMC2708119/

    [iii]http://www.pewsocialtrends.org/2009/08/20/end-of-life-decisions-how-americans-cope/

    EOLPodcast

    Ep. 476 The Dying Process: What Caregivers Need to Know with Barbara Karnes RN

    kwyattmd

    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:

    bkbooks.com

    Get the book here

    YouTube Channel

    Listen here:

    This episode includes:

    • Stages of the natural dying process that are commonly observed
    • Fear of death can interfere with meaning at the end of life
    • How movies contribute to misunderstandings about the dying process
    • The importance of education for the general public about the signs and changes of natural dying
    • Gradual death has a process that begins 2-6 months before death
    • The first stage of dying is marked by changes in sleep, socialization and food intake which become more significant with time
    • The “labor” of dying begins 2-3 weeks before death
    • Mottling of skin is a sign of the final stage along with changes in breathing
    • Being at the bedside of someone who is dying forces us to be in the present moment
    • Why it’s difficult to predict exactly when a person will die even though we know what signs to watch for

    Links mentioned in the 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 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.

    EOLU Blog

    How Being a Caregiver Helped Me With Grief

    kwyattmd

    By Karen Wyatt MD

    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.

    EOLPodcast

    Ep. 475 Tree vs. Tombstone: Better Place Forests with Gillian Nye

    kwyattmd

    Learn about a beautiful, sustainable option for disposition of ashes after death at the base of a memorial tree.

    My guest Gillian Nye has served at the Forest Memorials Manager at Better Place Forests for the past 6 years. She helps families create meaningful, nature-centered ceremonies that honor their loved ones in a unique and sustainable manner. She will tell us how and why to choose a special tree as a memorial for ourselves or those we love. If you love trees (as I do) and want to learn about sustainable options for disposition after death don’t miss this conversation! Learn more at the website:

    betterplaceforests.com

    YouTube Channel

    Listen here:

    This episode includes:

    • The story behind how Better Place Forests got started
    • Where the forests are located
    • The process for choosing a memorial tree (online or in-forest)
    • Reforestation of other forests through partnership with Arbor Day Foundation
    • How families can return over time to visit the tree they’ve chosen
    • Examples of nature-centered ceremonies that have taken place in the forests
    • How families benefit from choosing a tree as a memorial (rather than a tombstone)
    • The “spreading grove” as a less-expensive forest option for disposition

    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. Also thank you to James M. Schultz for buying me a cup of coffee and to Sue Julian who joined the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

    EOLU Blog

    How I Helped My Mother Choose Hospice Care

    kwyattmd

    by Karen Wyatt MD

    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.

      EOLPodcast

      Ep. 474 End of Life Studies Postgraduate Program in Glasgow UK with Marian Krawczyk

      kwyattmd

      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:

      eold.org

      YouTube Channel

      Listen here:

      This episode includes:

      • How Marian is researching the rise of the death doula movement
      • How the Glasgow program approaches the interdisciplinary study of death and dying
      • A non-traditional pathway of entry into the program is available including an introductory microcourse and a “taster” course
      • The diversity of students who have been attracted to the program from multiple countries
      • Insights from comparative studies across different cultural and international contexts
      • Being part of the “community of the unalike”
      • Marian’s research on experiences of ecological grief related to climate change and her interest in meeting students who are drawn to this work
      • Key issues that will shape the future of end-of-life studies
      • How to learn more about the Glasgow program of End of Life Studies

      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 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.

      EOLU Blog

      Preserving My Mother’s Dignity at the End of Her Life

      kwyattmd

      by Karen Wyatt MD

      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.

      [1] Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M.

      Lancet. 2002 Dec 21-28;360(9350):2026-30

      EOLPodcast

      Ep. 473 Death’s Apprentice: Planning for Life, Death and After with Christa Ovenell

      kwyattmd

      Learn how a funeral director who is also an end-of-life doula merges “head and heart” in her work to help people prepare for the end of life.

      My guest Christa Ovenell is a licensed funeral director, an end-of-life doula, and the founder of Death’s Apprentice Education & Planning. She shares how she helps people think about, talk about, and prepare for the end of life and what comes after. Her work highlights the importance of planning how to live fully during our last days so that we don’t waste any of our precious time, and how to navigate all the transitions of life as we age. Learn more at her website:

      deathsapprentice.ca

      YouTube Channel

      Listen here:

      This episode includes:

      • Why Christa ended up becoming both a funeral director and end-of-life doula
      • When people don’t plan for their funerals and disposition they often end up with expensive options that weren’t really wanted
      • Tips for getting end-of-life planning done while we are still healthy
      • 4 pillars of decision-making
      • How “heart work” is the hard work we need to do
      • How a “pre-need” for funerals can be helpful to families
      • Why decluttering is part of death-preparedness
      • How to navigate life-altering transitions while aging

      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. 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.

      EOLPodcast

      Ep. 472 Creating a Collaborative Movement in Your Community with Michelle Kolling and Nina Guertin

      kwyattmd

      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:

      Michelle Kolling: heldoula.com

      Nina Guertin: tendingthespirit.care

      MN Death Collaborative: mndeathcollaborative.org

      YouTube Channel

      Listen here:

      This episode includes:

      • How the MN Death Collaborative was initially created
      • The benefits of being a member of a collaborative
      • How a collaborative organization offers credibility to those who are creating their own businesses
      • The end of life is a multifactorial experience which demands a team approach
      • How a person-centered approach is “built in” to the mission of the collaborative
      • Types of events sponsored by the collaborative
      • How to sustain a collaborative over time
      • The importance of slowing down and taking smaller steps in the beginning
      • Tips for other groups that want to start a collaborative
      • The infrastructure needed to support such a movement

      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. 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.

      EOLPodcast

      Ep. 471 NEW SERIES – Death & Grief in Pop Culture: “Dear Evan Hansen” with Benjamin Kintisch

      kwyattmd

      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:

      lifereviewmusical.com

      YouTube Channel

      Listen here:

      This episode includes:

      • Death and grief are all around us in popular culture
      • How pop culture can help us increase death literacy for ourselves and in conversations with others
      • Learning how to stay present with the pain and grief of others
      • The power of live theatre to touch our hearts and teach our minds
      • The preponderance of orphans as characters in popular films and stories
      • Death and grief in Life Review: The Hospice Musical
      • The authenticity of grief depicted in Dear Evan Hansen
      • Why this musical is transformative and uplifting at the end

      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 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.

      EOLPodcast

      Ep. 470 Transforming the Illness Experience with Hsien Seow PhD and Sammy Winemaker MD

      kwyattmd

      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:

      waitingroomrevolution.com

      Get the book here

      Discussion Guide

      YouTube Channel

      Listen here:

      This episode includes:

      • Why Sammy and Hsien decided to write the book
      • The 7 keys they focus on for navigating serious illness
      • Why patients and their families benefit from “walking the two roads” of hope and preparation
      • How the medical system currently fails to support patients in preparing for the possibility that treatment may not have the desired outcome
      • How our hopes and plans evolve as our illness journey changes
      • A palliative approach to patients and illness helps clinicians in all specialties avoid burnout
      • How seeing the “big picture” journey of an illness can help with decision-making
      • Why caregivers also need preparation at the beginning of an illness journey

      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 supporters Jenny Gedda, Carolynn Rafa Todd, and Karen Sueanna! Your contributions make all the difference and ensure this podcast stays ad-free.

      EOLPodcast

      Ep. 469 Podcast Playlist: Death Education with Karen Wyatt MD

      kwyattmd

      Learn about some helpful episodes from the EOLU Archives that can show you how and why to start teaching others about death and dying.

      This week I’m sharing another “Podcast Playlist” which is a topic-focused deep dive into the archives of EOLU. I have created several anthologies of episodes that deal with specific subjects to make it easier for you to take advantage of the wealth of information available from previous interviews on the podcast. This playlist centers on Death Education and you’ll learn a lot about why we all need to be death educators in our communities right now, tips for creating our own classes or events, and various resources and trainings that are available to help you start to teach others. You can see the slides for this episode if you watch on YouTube at the link below or you can download a handout of the slides and a list of the presenters. There’s a lot of content here – this playlist should help you choose the episodes you want to listen to!

      View slides here

      YouTube Channel

      Handout of Presenters

      Listen here:

      This episode includes:

      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 supporters Margie Blanchard and Bonnie! Your contributions make all the difference and ensure this podcast stays ad-free.

      EOLPodcast

      Ep. 468 Supporting Family Caregivers: Notes from the Field with Gabrielle Elise Jimenez

      kwyattmd

      Learn some tips and tools for offering support to family caregivers tending a loved one on hospice.

      My return guest Gabby Jimenez is a hospice nurse, end-of-life doula, death and dying educator, author and blogger. She is the author/co-author of numerous books, including Dignity Day and The Doula Tool Kit and the host of The Hospice Heart community on Facebook. In today’s conversation she shares her thoughts about how to support family caregivers through some of the overwhelming issues they face while caring for a loved one. We address our concerns for the well-being of family caregivers and offer some tips for improving their experience with hospice and easing their subsequent grief after death occurs. Learn more at her website:

      thehospiceheart.net

      Get Gabby’s books here

      YouTube Channel

      Listen here:

      This episode includes:

      • Major issues for family caregivers tending a loved one on hospice care
      • How lack of training for caregivers leads to fears of not doing the right thing and lingering guilt after death
      • What to say to reassure a family caregiver
      • The importance of slowing down and listening deeply to the concerns of the caregiver
      • Tools and tips for supporting a family caregiver

      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 supporters Heather Capuana and Paul, and to Peg Hofmann for joining the $10 for 10 Years Campaign! Your contributions make all the difference and ensure this podcast stays ad-free.

      EOLPodcast

      Ep. 467 A New Twist on Home Funerals: Family Involved Deathcare with Trina Wacasey and David Perfito

      kwyattmd

      Learn how a home funeral guide and an aqua cremation provider collaborate to help families care for a loved one’s body after death.

      My two guests this week are collaborators who work together to ensure that their clients can access family involved deathcare: Trina Wacasey is an end-of-life doula, home funeral guide and the founder of Creating Honoring Spaces; and David Perfito is the founder of the first alkaline hydrolysis facility in the state of California, White Rose Aqua Cremation. They share how they came to work together in collaboration and how their model can be an inspiration for others to address gaps in deathcare in their communities. Learn more at their websites:

      creatinghonoringspaces.com

      whiteroseaquacremation.com

      YouTube Channel

      Listen here:

      This episode includes:

      • What a home funeral is
      • Why a family might consider a home funeral (and why it may not be right for everyone)
      • Why families need a guide to help them navigate the funeral process
      • Trina’s “mini mobile suite” for after-death care
      • How aqua cremation works
      • Advantages of aqua cremation (alkaline hydrolysis) over fire cremation
      • How White Rose Aqua Cremation can serve people wherever they live
      • How Trina and David work together even they are located 7 hours apart
      • How home funerals and eco-friendly disposition go hand-in-hand
      • Why this type of collaboration is novel and necessary for forming compassionate communities

      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 supporters Marie Sutton and Aviva Engel. Also many thanks to Karessa Torgerson for making a donation through Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

      EOLPodcast

      Ep. 466 Listening to Patients Near the End of Life with Christina Gomez MD

      kwyattmd

      Learn about a book of quotes gathered by a compassionate oncologist from deep conversations with her patients.

      My guest Dr. Christina Gomez is a gastrointestinal medical oncologist at Banner MD Anderson Cancer Center. She is the author of the book Stopped in My Tracks: A Physician’s Collection of Cancer Patients’ Quotes, which she discusses today. She shares her approach to talking with patients about difficult end of life issues, including referring them to palliative or hospice care and the value of listening deeply to her patients. Learn more at her website:

      christinagomezmd.com

      Get the book here

      YouTube Channel

      Listen here:

      This episode includes:

      • Why Dr. Gomez started to collect the words of her cancer patients
      • What it feels like to be the bearer of hard news for patients
      • Honoring the patient’s choice for how much they want to know about their prognosis
      • How quickly options are changing for novel cancer treatments and what constitutes “realistic hope”
      • Why we need to bridge the divide between oncology and palliative care to ensure that patients can access all the care they need and want
      • The gift of targeted therapies in prolonging life with cancer
      • How Dr. Gomez avoids giving patients false hope and focuses on what is really possible
      • Treating the whole person, not just the cancer and why no one “loses the battle”
      • Learning about the present moment from patients
      • The retreat Dr. Gomez is hosting October 11-12 for patients, providers, caregivers on the cancer journey

      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 Sue Stuparek for buying me a coffee! Your contributions make all the difference and ensure this podcast stays ad-free.

      EOLPodcast

      Ep. 465 Podcast Playlist: End-of-Life Doulas with Karen Wyatt MD

      kwyattmd

      Learn all about end-of-life doulas from this comprehensive deep dive into the archives of EOLU Podcast!

      This week I’m sharing a new feature: the “Podcast Playlist” which is a topic-focused deep dive into the archives of EOLU. I’ve created several anthologies of episodes that deal with specific subjects that might interest you. This is to make it easier for you to take advantage of the wealth of information available from previous interviews on the podcast. This playlist centers on EOL Doulas and you’ll learn a lot about what doulas do, why they are important, and various types of trainings that are available. You can see the slides for this episode if you watch on YouTube at the link below or you can download a handout of the slides and a list of the presenters:

      View slides here

      Handout of Presenters

      YouTube Channel

      Listen here:

      This episode includes:

      Other links for this show: