24 Sep 2020
All Individuals are Experts in Their Own Care
One of the things you have the joy and honor to experience working in hospice is how those facing end of life can be honest and forthright about their wishes.
Mortality has a way of focusing on some people- they can be precise in what they want and do not want. At Seasons Hospice & Palliative Care, we passionately believe that one of our most sacred duties is to honor our patients’ lives, in the way that comforts with their values and beliefs. Hospice care isn’t one-size-fits-all: it is about tailoring a comforting plan of care to each individual’s needs. We had the honor of caring for a patient in Broward County, Florida, a few years back who needed this individualized care. ‘Joe’ was dying from a brain tumor. He was a veteran, had been a professional ballet dancer, and was gay. At 93 years old, he had outlived his family, friends, and loved ones and enjoyed living alone. He valued his independence above all else- preferring his condo and the freedom it afforded him.
One of the side effects of Joe’s tumor was a significant loss of short-term memory. Which made living alone a challenge, but Joe was adamant that he did not want to move to an institutional setting like an Assisted Living Facility. He had significant concerns about discrimination due to his sexual orientation. This is where the training and preparedness Seasons received from SAGE was so crucial. The SAGECare training gave us a roadmap to not see Joe as a cranky and challenging patient who was a chore for our staff. Instead, as someone with a lived experience, it was our duty to honor, acknowledge, and accommodate. Seasons worked with Joe to develop a shared safety plan for living at home while on hospice care. We provided Joe with a care team that had received SAGECare training (all Seasons sites have earned the SAGECare Platinum credential) and were understanding of the unique needs Joe had as an LGBTQ+ elder. This care plan allowed Joe to continue doing what mattered most to him- live out his remaining days at his home.
As Joe neared the very end of his life and his symptoms required nursing oversight to manage, Seasons provided 24/7 in-person support via our ‘No One Dies Alone’ program to him in his own home. Our nurses and aides were at his side, giving pain relief, companionship, and emotional support until his very last breath. It was our honor to affirm his personhood and identity every step of the way and to provide the best death possible for this 93-year-old veteran. He died in his own home, pain-free, following his wishes, free of any worry about facing discrimination for his sexual orientation. Indeed, he was enveloped in love, support, dignity, and respect.
Patients facing the end of life are not all the same. Some require extensive social support; others prefer privacy and the alleviation of pain. Some revel in music therapy or the healing touch that Reiki or Namaste care can provide. Personalizing the care an individual receives isn’t possible if caregivers don’t have the training, skills, and competencies to honor their wishes and needs. Initiatives such as We Honor Veterans, SAGECare training, and other programs focused on cultural understanding are critical to providing patients like Joe the honor and dignity they deserve as they face the end of life.
Dr. Russell Hilliard is the Senior VP of Key Initiatives & Strategy at Seasons Hospice & Palliative Care and the Founder of the Center for Music Therapy in End of Life Care. His research, advocacy, and consultation have resulted in developing first-time music therapy programs in hospices throughout the US, China, Thailand, and Korea. He is the author of the text, Hospice, and Palliative Care Music Therapy: A Guide to Program Development and Clinical Care. His research has been published in a wide variety of scholarly journals. He has authored several book chapters in leading texts on end-of-life care—his new book, Heartsongs: Pediatric Palliative Care Music Therapy was published earlier this year. Dr. Hilliard has provided keynote addresses for healthcare conferences and is a frequent presenter at professional conferences worldwide.