It was a normal workday at Patty Burgess’ cosmetic surgery consulting business, then the phone rang.
It was a call for her coworker, Rona, from her doctor that made her visibly upset. The doctor had test results for Rona but would not give them to her over the phone, so Burgess said, “We’re going,” and the two drove to the doctor’s office.
The tests revealed stage 4 lung cancer.
“It was shocking, and it just changed everything on a dime,” said Burgess, who became Rona’s caregiver at the end of her life. “She was a dear friend. She helped introduce me to hospice, and I learned what an unbelievable, valuable benefit it was. The next thing you know, my whole life had changed.”
Serving a need
After being a volunteer, trainer and community educator for hospice, Burgess saw the need for better training of hospice volunteers and caregivers. Fast-forward 20 years, and Burgess is a national trainer, speaker and educator in end-of-life matters, and she has trained more than 15,000 volunteers, staff, end-of-life doulas, caregivers and students thanks to her company, Teaching Transitions.
The course, “Certified End-of-Life Specialist and Hospice Volunteer Designation,” is being offered at North Carolina’s Randolph Community College starting next month.
“People plan more for buying a car or going on vacation than they do for their own death,” Burgess said. “One of the things that our course seeks to do is try to help transform the experience of dying, grief and loss from one of only fear or sadness or being overwhelmed into peace, connection, meaning and even a little bit of awe. That’s a good death.”
She continued: “Lots of times the patient is ready, but the family is not. Sometimes, getting the family to come to terms with, and to understand the sacred passage — and all the connection and time and all the beauty that can really be had — can make a huge difference in the death of their loved one.
“I’m not necessarily wrapping death up with a big red bow because sometimes it can be pretty messy, but it’s usually messier when people don’t know what to expect; they’re fearful, and they’re overwhelmed. But if they know what to expect and understand that this is a normal, natural part of life and if we’re seeking a good death, it’s much more likely when people know what’s coming.”
Burgess said the immersive, self-paced, online course teaches students to cultivate a high level of compassion and empathy, and to eliminate factors that may obstruct the delivery of high-quality care and companionship to whomever they serve.
The course features 10 modules:
- Welcome, Overview and Purpose of the Course
- Hospice 101: Introduction to Hospice Philosophy, Benefits, Eligibility, & Team Approach to Care
- Personal Death Awareness, Exploring Beliefs and Fears, Advance Directives
- End of Life Communication: Speaking and Listening Differently
- Clinical Care at End of Life: Signs & Symptoms of Approaching Death, Universal Precautions, Pain & Symptom Management, Safety in the Home, Actions When Death Occurs in Various Settings
- Spiritual and Cultural Diversity and Inclusion in the Dying and Death Experience
- Loss, Grief and Bereavement: Understanding, Coping and Healing: Supporting Others through Grief
- Self Care & Resilience: Managing Personal Stress and Avoiding Burnout
- Legacy: Last Words, Eulogies and a “Dialogue with Death
- Putting it All Together: Volunteer Roles, Visit Etiquette, Ethics and Needs of the Dying
The course also meets and exceeds the Medicare regulations for hospices, and the training recommendations by the National Hospice and Palliative Care Organization (NHPCO). It is appropriate for personal or professional caregivers or healthcare staff wishing to enhance skills and credentials.
It is also valuable for various roles and disciplines (as either entry-level training or continuing education), such as nurses, grief counselors and more clergy.
“There are lots of times when we have nurses in the program who have worked in oncology and spent their time trying to keep people alive,” Burgess said. “They never really dealt with death. Initially, this course was designed for hospice volunteers, but it’s for the layperson, students looking to enhance their professional credentials… We’re all going to become a caregiver to someone.”
Burgess was one of seven original founders of the National End-of-Life Doula Alliance (NEDA) in 2018. Today, NEDA has welcomed more than 1,300 members since its formation and continues to grow as this healthcare segment gains popularity and utilization.