by Larry Dawalt, Hospice & Palliative Care Charlotte Region
What do you think of when you hear the word hospice? For many, hospice means a team of health care experts who provided care for a loved one nearing the end of their earthly days. When they hear the word hospice, they can easily remember the ‘who, what, when and where’ of that time because it is burned into memory. As a family member, friend and health care professional, that is part of what hospice means to me, but it also means more than that because I have had the privilege of witnessing firsthand what that care looks like.
I started working in hospice care in 1993 and since 1997 I have been with one of the top hospices in the country, Hospice & Palliative Care Charlotte Region. Since my 20th anniversary with HPCCR on April 1, 2017, I have been doing a lot of reflection about how hospice has changed over the years. I remember lots of stories about the early days of hospice care in Charlotte, particularly from my first supervisor, Sharon Dixon. She was the first hospice nurse at what was then known as Hospice at Charlotte and her tales of looking for patient homes at two in the morning in a Volkswagen Beetle with her nurse colleague, Alice Viscount, always brought a smile to my face. Sharon said she had one hand on the wheel and the other holding a flashlight while Alice spread a Mecklenburg County map on the dashboard, looking for the right neighborhood, street or house number. She often joked that hospice nurses could always work for the postal service if they wanted to change jobs because they could find any house, anywhere, at any hour day or night. Those were definitely not the days of our current Siri or Map Quest tools.
From those early days in the late 70’s and early 80’s, hospice evolved into a form of health care recognized by Congress with a Medicare benefit that became permanent in 1986. Cancer was the most frequent hospice diagnosis during that time, but over the years other life threatening illnesses were added including renal disease, ALS, liver disease, stroke, cardiac disease, pulmonary disease and Alzheimer’s/dementia. With years of care came the development of medical expertise and the board certification of hospice & palliative care physicians by the American Medical Association. At the same time, a need emerged for management expertise and visionary leadership. Hospices were growing, but most of the leadership came from clinicians who had a heart for the work, and needed important training to manage the rapid growth of their departments and organizations as a whole. I remember because I was one of them and am grateful that our organization made it a priority to develop strong leaders by giving them the opportunity to learn and grow.
I have seen an abundance of growth and changes over the years, but one thing has remained the same and that is the fact that the heart of hospice is compassionate care at the end of life. I don’t have to wonder what it is like because I see it every day. I no longer see two nurses searching for the home of a patient at two in the morning as in the early years of hospice, but let me tell you what I have recently seen. I’ve seen a social worker make a phone call to Appalachian State University and introduce herself to the Dean of Students, Vice Provost and Art Department Chairman with a request to bring a child’s college graduation to the bedside. This was so that the mother, a patient too weak to speak, could witness an authentic graduation ceremony and watch her daughter move her tassel from right to left. I’ve seen a group of North Lincoln High School students raise over $2,500 to say thank you to the compassionate clinicians of Kids Path, the pediatric care program that cared for one of their classmates to his dying day. They also created and posted a powerful YouTube video to help get the word out about the program. I’ve seen a nurse bring a smile of joy to a man living his last days at the Levine Dickson Hospice House in Huntersville by simply whispering the words ‘we beat Duke’ into his ear following a major basketball game, since they both attended UNC Chapel Hill. I have also seen and heard chaplains singing old hymns to patients who were seemingly unable to communicate, yet could remember both the tune and the words to songs that brought them joy through the years.
I see it in the office, too, from committed leaders tirelessly working to ensure our team continues to operate in challenging times of declining reimbursements to dedicated after hours nurses who willingly take one more call even when their shift is about to end. Hospice is about health care, but even more significantly, hospice is about people who see the suffering of others and genuinely want to do something about it. If someone had told me when I was a little boy that one of the greatest joys of my life would be taking care of dying patients and their families, I would not have believed it. But it’s true- and I wouldn’t have it any other way.