The Deeper Work of Hospice

You may have heard of the term “doula” when referring to how expectant parents plan for their child to enter the world. But you may not have heard of the term with “End-of-life” in front of it. End-of-life doulas or EOLDs, provide non-medical, holistic support and comfort to patients and their families. This may include education and guidance as well as emotional, spiritual, or practical care. These individuals help to build rapport with the patient and family/caregiver, enhance patient comfort, focus on ideal care, and support, and provide a peaceful and non-judgmental presence. Today, Hospice of the Western Reserve’s Volunteer End-of-Life Doula service has flourished into one of the largest EOLD teams servicing a hospice organization.

A former nurse at Rainbow Babies and Children, Lori Scotese had a remarkable road to Hospice of the Western Reserve (HWR). In 1995, Lori’s mother fell ill. The family began exploring options and found themselves at the newly opened David Simpson Hospice House, where Lori’s mother became one of the first patients. “We were a rowdy family, but the staff was incredible,” recalls Lori. “Compared to other medical models, she was very comfortable, and we could be present as a family.” Lori remembers small moments during their time at the hospice house where the family could take in beautiful sunsets overlooking the lake, gather, and be involved in their mother’s care. “The day my mother passed, there was an incredible rainbow over the building,” says Lori. “I’ll never forget that experience.”  A year later, Lori started volunteering for Hospice of the Western Reserve, and six years later, she became a paid staff member. Tina Thonnings, Lori’s co-facilitator, joined the Hospice of the Western Reserve team in 2015, bringing with her a rich background in service-focused work. Having served most recently as a Coordinator of Volunteers for a hospice in Columbus, Ohio, Tina was no stranger to the impact that staff and volunteers can have on patients and families. “Lori and I are like two parts of a whole,” says Tina. “We work together to continue to make this service excellent.”

Today, Lori, Tina, and their coworkers oversee one hundred active volunteer End-of-Life doulas. These volunteers have completed a robust training, which includes twelve hours of general hospice education and an additional sixteen hours of specific training for this service. Additionally, doulas meet monthly and attend quarterly continued education training. Both Lori and Tina possess a unique set of talents and expertise which they bring to every training. Lori is a member of the National Association of End-of-Life Doulas and is certified in Cultivating Compassionate Presence, and Cultural Diversity in End-of-Life Care, to name a few. Tina holds a Master of Social Service Administration and is a Reiki Master. “We believe our collective backgrounds is vital to supporting volunteers,” says Lori. “The training of our doulas is truly grounded in education and experience.”

Volunteer End-of-Life Doulas can serve in a variety of roles, from making phone calls to sitting beside. They provide specific services including a Life Review, which captures and documents an individual’s treasured stories, life lessons, and special accomplishments, Legacy Work, which helps a person to leave some lasting piece of themselves behind to be remembered by, Vigil Planning assists a patient and their family by creating a sacred space in which to honor, empower, provide a sense of confidence in this part of the journey, and Vigil Presence, which stresses the importance of time, silence, personal connection, and attention. EOLDs serve in all patient care settings, many times late into the night and even overnight if the need is identified. Families often share that they value and appreciate the care and support as much as their loved one on their final journey. EOLDs are trained to understand that this service is available to every patient and each experience can be profoundly unique. “To be able to capture stories and fulfill these wishes is a wonderful gift”, says Lori. “We don’t focus on a task list; we focus on what is on the patient’s agenda.” In essence, these volunteers are a source of solace and guidance, ensuring that the end of one's life is marked by compassion, meaning, and a sense of peace, both for the individual and their loved ones.

Rich Ostendorf, End-of-Life Doula since 2019

Growing up in Chicago, Rich Ostendorf had always wanted to become a priest.  On his days off during the school year at the seminary for the Archdiocese of Chicago, Rich would visit the hospital as the student chaplain. Through this experience, he realized the impact of spending time with patients and their families, which sometimes meant simply quietly sitting with them, so they knew they were not alone. When he decided to take a different road, he left the seminary and set his sights on medical school. In his third year, he attended a conference featuring renowned hospice and palliative care pioneer, Elizabeth Kubler Ross, who spoke about dignified and compassionate care for the terminally ill. In talking with her after the meeting she connected Rich to an opportunity to study at Saint Christopher’s Hospice in England, which is widely considered the basis of modern hospice philosophy and care.  Rich spent a month at St. Christopher’s learning innovative ways of delivering end-of-life care.

When Rich began his career in emergency medicine as director of a New Jersey hospital’s emergency department, he hoped to bring a different approach to how families could be helped when facing the death of a family member. “Many times, staff were very uneasy sitting down with the family of someone who has just passed,” says Rich. “I wanted to make sure people would hang in there with them.”

In the early 1980s Rich transferred to a local Cleveland hospital, where he met the Medical Director of Hospice of the Western Reserve. Through various training conferences and programs, they stayed connected and when Rich began considering his plans for retirement in 2013, he knew he wanted to volunteer with HWR.  “I had taken many courses and programs dealing with death to be a hospice physician, but I wanted to spend more time with the patients and their families,” says Rich. “So, I decided to be a Spiritual Care Volunteer with Hospice of the Western Reserve.” As an End-of-Life doula, Rich can connect with those families and patients, and in 2019, he became one of the first individuals to receive the EOLD training. “Everyone experiences the end-of-life process differently,” says Rich. “It’s my job to be there for both the patient and their family as they go through this journey.

Roz Frabotta, End-of-Life Doula since 2019

When Roz Frabotta’s brother passed away without hospice care twenty-five years ago, her family was left feeling uncertain on how to navigate the dying process that unfolded in front of them. Five years later, her father was admitted to the hospital and the family decided to enroll him in hospice on the recommendation of the physician. “We were pretty clueless about hospice,” says Roz. “The whole experience was so different than I thought, and we didn’t feel as lost.” Although her father was briefly in our care, Roz remembers the staff being available and helpful. They explained what was happening and what to expect, so it wasn’t frightening or confusing like my brother’s death had been. When her mother fell ill a few years later, the family quickly knew that they wanted her end-of-life care to be at David Simpson Hospice House. “It was an immediate yes,” says Roz. Even before Roz retired as an elementary teacher, she knew she wanted to volunteer at Hospice of the Western Reserve. When an HWR volunteer spoke at her church to share volunteer opportunities, Roz reflected positively on her own memories of her mother’s time at David Simpson Hospice House and remembered the love, care and support she and her sisters received. After such a transformative journey with loss, Roz understands the importance of thoughtful of end-of-life care and support. “When my mother passed, I felt calm and supported, it was so different from the experiences I had with my father and particularly my brother,” reflects Roz. “I know there is a lot of value in this work, and I want to be helpful for other people.” As an EOLD, Roz supports families and patients by helping them to better understand the entire process through insight, and comfort, and by providing a peaceful environment. “I want to create a positive memory so that the patient feels supported and so do the loved ones they are leaving behind,” says Roz. “We’re not the last breath type of service and if people are open to it, it can be a beautiful experience.”

Jim Gallagher, End-of-Life Doula Since 2023

Jim’s journey to become and End-of-Life doula came from a long path of personal growth. At the age of seven, Jim’s father passed away suddenly. “He went to work one day and never came home,” says Jim. In the early 1960’s, Jim’s family, like many others didn’t fully understand how to navigate death and dying. It was decided that a funeral was not a place for children to be and Jim, along with his other siblings, were told that his father had simply gone to sleep. Jim subsequently spent the next few decades navigating the trauma from his father’s death. He had trouble sleeping and didn’t attend anyone’s funeral. “I hated the whole idea of the thing,” recalls Jim. “In my 40s, I had counseling and was able to get more accustomed to mortality.” Over the years, Jim has known several people who have been through hospice and was aware of the impact Hospice of the Western Reserve had within in the community. Both he and his wife decided to volunteer.  As a newer EOLD, Jim has worked alongside one patient and his family, and he is already feeling the significance of this service. “It’s been calming, to tell you the truth,” says Jim. “I feel at peace being within the proximity of these patients, and I hope I can pass that sense of comfort on.” Before he started his journey as a HWR volunteer, Jim did his research and encourages others to do the same. He connected with a friend who serves as an EOLD in North Carolina, asked questions, and wanted to gather insight. “My life path has taken me here,” says Jim. “Open your horizons, learn as much as you can, be still, and if it’s what you’re meant to do, you’ll know.”

Melissa Zietlow, End-of-Life Doula Since 2021

Melissa was no stranger to hospice care when she started volunteering for Hospice of the Western Reserve in 2020. Her and her husband cared for her mother-in-law in their home before admitting her to HMC Hospice of Medina County. “It was such a blessing to our family,” says Melissa. “They provided such good care, and she was able to have a peaceful passing.” Melissa, who also volunteers as a community chaplain, has a good understanding of what exceptional hospice care can provide patients and families. After her grandmother passed away, she applied to be a volunteer with Hospice of the Western Reserve. Before applying, Melissa did extensive research to learn more about hospice care and came across other EOLD training programs across the country, “I was thrilled when I heard that Hospice of the Western Reserve offered this training,” says Melissa. “I took the training not once, but twice because it was so well done.”  Having successfully homeschooled three children through graduation (and with one teenager still in school), Mellissa now has more time to give back. Even with her own experience, Melissa appreciates that EOLD training is available to any volunteer and staff member, regardless of discipline. “I’m proud to volunteer for Hospice of the Western Reserve, but especially because we offer this service,” says Melissa. “I think every hospice system or organization should have an EOLD service to deeper the level of care and support.”  Her passion for the work stems from her deep respect for serving the community of people who find themselves struggling. “It’s not just a service that we offer, it’s very deep work we are doing,” says Melissa. “We support, but we also educate and model how to walk through the end of life.”