The Heart of Hospice Podcast

Pediatric palliative care physician Dr. Jared Rubenstein opens up about what it really means to show up for families when there’s no easy fix. Jared and his team support seriously ill kids and their families, bringing compassion and utilizing Dignity Therapy techniques modified especially for kids. The unique medical and emotional needs of those sick kids shape everything the palliative care team...

Anyone with a serious illness needs a strong advocate who has their back and makes sure their needs are met. Erin Galyean did that for her sister, learning on the job how to be an advocate as a caregiver. When her sister became ill with cancer and a serious lung disease, Erin became a long-distance champion for her sister’s care. Her book Badass Advocate: Becoming The Champion Your Seriously Ill L...

End of Life Doula Diane Button has been taught how to live well by caring for the dying.  Her life’s work has been to support people to find meaning, comfort, joy, and peace in life and in death. One of the biggest influences on how Diane lives was her Grandpa Charlie, and she continues to be inspired by how he lived his life. Diane has collected stories and wisdom from every person for whom she’s...

RamDev Dale Borglum is a pioneering figure in the conscious dying movement, known for his contributions to end-of-life care and spiritual support. In his 40 years of work with the dying, he thinks the U.S. has made progress in our attitude towards death, but there’s still room for improvement.  Dale defines conscious dying as the practice of living consciously as we die.  Meditation and gratitude...

We’re deep diving into advance care planning with hospice Social Worker Rosie Gaston, talking about diagnosis specific advance directives.  With diseases like Alzheimer’s and other types of dementia on the rise, the need to plan for end of life situations for neurodegenerative diagnoses is increasing.  It’s hard to predict  every scenario, but considering basic care needs and wants is important. ...

There isn’t a greeting card for every type of grief.  Dr. Ken Doka joins the podcast in this episode to talk about anticipatory and disenfranchised grief.  Before death even occurs, people are grieving - anticipating the loss of identity, functional ability, roles, and relationships as well as the actual loss that comes with death itself.  This kind of grief is felt by both the person who’s dying...

Social Worker Rosie Gaston talks about getting back to the basics of what matters most to start an advance care plan.  Reflecting on values and beliefs is a great starting place.  The next step is having conversations with people who matter most to us (along with healthcare providers) to communicate the kind of care we want when our bodies begin to shut down, and what embodies quality of life.  Wh...

Hospice Nurse Julie McFadden is using TikTok to teach over 1 million followers what death really looks like.  As a nurse with 15 years of experience in end of life care, she’s seen all the ups and downs of community-based bedside hospice care.  Julie also spent years working in ICU, and learned the intense needs of the dying.  Her book Nothing to Fear: Demystifying Death to Live More Fully prepare...

Dr. Jessica Zitter sees how hard family caregivers work and it inspires her to keep going as a physician and caregiver advocate.  Working as a critical care and palliative care physician, an author, and a documentary film maker has positioned Dr. Zitter uniquely to advocate for caregivers and the heavy burden of family caregivers.  Jessica has had personal experiences working as part of an interdi...

Palliative Care Chaplain Cody Hufstedler shares the end of life experiences of his patients and their families using compassion, healthy boundaries, and a little bit of humor.  After 12 years of working as a chaplain, he’s seen the best and worst of death and dying.  Cody believes his job is to help people work through changes when bad news happens, and help them pivot back to the values they hold...

Jessica Guthrie is more than a millennial caregiver - she’s an advocate using her voice to change how we approach the care of loved ones. When her mom Constance was diagnosed with early onset Alzheimer’s disease at 66 and Jessica was 26, Jessica began coordinating her care from a distance. The trajectory of the disease soon required a move to be closer to Constance. Jessica describes it as “a shoc...

When dementia is the diagnosis, end of life discussions can be intense and heartbreaking.  Hospice social workers Lisa Pahl and Jessica Empeno shed light on how to make things easier.  Whether the dementia diagnosis is the primary (or terminal) diagnosis, or it is happening alongside another serious illness, the topics to be considered are complex.  Everything from incontinence management to feedi...

The team at Caring House is supporting the dying with compassion and respect, and a willingness to say yes to every end of life wish. Caring House is more than a non-profit organization; it’s a home focused on helping residents and families through the end-of-life experience. It’s the only one of its kind in Los Angeles County. Executive Director David Zartman and Resident Care Manager Joanna Fran...

Elizabeth Johnson is the co-founder and Executive Director of the Peaceful Presence Project, a community-based organization in Oregon dedicated to fostering compassionate end-of-life care. Her commitment to supporting end of life planning for the unhoused population is deep, leading her to companion homeless individuals to help them complete their advance directives. The Peaceful Presence Project...

Suzanne O’Brien has spent the last 20 years serving the dying, and supporting the ones who serve at the bedside.  As a hospice nurse and founder of Doula Givers, she finds purpose and meaning in working with patients at end of life.  After working most of her nursing career in oncology and hospice, Suzanne saw the gaps in care for people with advanced diseases. This led to the creation of the awar...

We’re excited to feature a roundtable discussion with a group of amazing hospice nurses discussing what makes a “good death” and the rituals they’ve created for themselves and caregivers.   Jean Ann Menna, Carrie Oram, and Shelley Henry have many years of end of life nursing experience.  Along with Helen, they share the many facets of helping patients create good deaths for themselves.  This conve...

Hospice doctor Dr. Alen Voskanian is sharing the lessons he’s learned at the bedside of the dying, including why managing compassion fatigue is so vital. Working with AIDs patients led him to hospice work and to obtaining his board certification in hospice and palliative care medicine. Through his practice, Alen tries to humanize his patients and tries to connect with them. He works to find the be...

Elizabeth Uslander is empowering the dying every day to create a better ending.  As co-founder and CEO of Empowered Endings, Elizabeth is passionate about helping people with serious illness to find the death that aligns with their values and wishes.  Her social worker background equips her with problem solving skills she can use to be an advocate for patients and their caregivers.  Elizabeth’s th...

Hospice nurse and End of Life Doula Erin Collins puts her heart and mind into helping people make peace with the end of life through compassionate, reflective conversations. As co-founder of The Peaceful Presence Project, Erin has seen the comfort and calm that advance care planning brings to not only those who are dying, but also to their family caregivers and the end of life workers who are serv...

The International End of Life Doula Association believes everyone deserves compassionate, respectful care at the end of life.  Executive Director Doug Simpson is working with the INELDA team to make that happen.  Doug’s journey to EOL doula work began with the death of his own father, followed by the birth of his son. Drawn to end of life work, Doug trained as a doula in 2018 and became an INELDA...

Trigger Warning: The content of this episode includes narratives about seriously ill children. If you need to sit this one out, catch up with us on another episode and please take time to care for yourself. In his memoir titled “Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul”, Dr. Robert Macauley tells the story of the patients who have impacted his life, and how he’s cha...

DNP Elena Prendergast is empowering people with serious illness to find their voices, and advocate for their best quality of life.  Working with patients who are dealing with end of life issues showed her how much extra support is needed, even when there’s a healthcare team providing care.  Elena helps clients navigate the confusing maze of the US healthcare system.  She listens to what they think...

Palliative physician Emma Jones knows the real effects of burnout, and now she’s coaching others to rise from the ashes. While working in a high-pressure pediatric palliative care job, she found herself suffering the fallout of severe burnout. Emma was told to go home and figure out what was going on, but she realized there was no guide for how to do that. She began dealing with depression, trying...

With honest information and gentle humor, the founders of Before the Casket are teaching us how to plan for more than just funeral arrangements. Hospice nurses Erin Putney and Amy Hensley have designed workshops that educate attendees about hard end of life decisions, empowering them and their decision-makers and making the whole experience easier. Before the Casket also provides education for hea...

In this open and vulnerable interview, Dr. Shoshana Ungerleider talks about her caregiving experiences during her dad’s illness and death. Shoshana discovered early on that she wasn’t prepared for the complicated decision making that comes with serious illness caregiving, despite her medical training. Reflecting back at the experience, she talks openly about what she would have done differently. D...