COLUMN: November is National Hospice, Palliative Care Month
Published 7:30 am Saturday, November 11, 2023
In 1963, Dr. Dame Cicely Saunders, the founder of the modern-day hospice movement, visited Yale University and presented a lecture introducing the idea of specialized care for the dying to the United States. During her speech, she shared photographs of terminally ill patients and their families before and after specialized care focusing on symptom control. This lecture launched a chain of events that resulted in the development of hospice care as we know it today.
However, even with interest expressed during the 1960s, the first “official” hospice in the United States was not established until 1972, and it was almost another 10 years before Medicare implemented the hospice benefit. Most surprising to me was that it was not until 2006 that the American Board of Medical Specialties (ABMS) recognized hospice and palliative medicine as a medical specialty.
Incidentally, November is National Hospice Month, and this year’s theme is: “Courageous Conversation.”In our culture, we often teach to resist mortality, and our healthcare system often encourages interventionism until there is nothing medically left that might improve the person’s condition.
Perhaps this is one of the reasons why having a conversation about dying is one that most of us shy away from, and it can also be a conversation our loved ones do not want to hear, as in hearing it is as though they are accepting our mortality. However, having a conversation about dying can have a profound impact. Questions to ask ourselves are: what if I am faced with a terminal diagnosis? How do I want the end of my life to be? How would I want my loved ones to engage with me? It is a courageous conversation to have. However, having these conversations with ourselves, family, friends, and doctors can mean the difference between having the type of death a patient wants or one that doesn’t allow you to have a say in your end-of-life journey.
Interestingly, former President Jimmy Carter enrolled in hospice in February of this year. He celebrated his 99th birthday in October. This former President is both the longest-lived President and the one with the most extended post-presidency. He is also the only former President I am aware of who, after being diagnosed with a terminal illness, having aggressive treatment, and after experiencing several falls and hospital stays, decided to stop curative measures and hospital stays by spending the remainder of his days living the best he can, doing the things he loves. In a commentary that originally appeared in the Rhode Island Current, President Carter has access to a team of individuals who help him identify and honor how he wants to spend his time. Most important to me is the absolute knowledge that every service President Carter receives in hospice care is available to everyone when they enroll in hospice – not just former presidents.
Another amazing hospice story, in which I know an early hospice admission made a considerable impact, is about a family member of mine. One day, I stopped by to visit and found my relative laughing as she hugged and read a story to her 2-year-old granddaughter. As we visited, she told me that evening, she planned to have dinner with a few of her close friends. The following week, I saw her at school as we were both attending “Grandparents Day.” My point is times like these may seem ordinary to most. However, it was most surprising to some when they learned that this sweet grandmother had an advanced terminal disease and had been in hospice for four months.
Many people think that being in hospice means lying in bed, barely conscious. Former President Jimmy Carter and my precious cousin prove this is not always true. I want to add many of this person’s final days, weeks, and months were anything but ordinary, and they would not have been possible without the help of hospice.
Also, let me add these experiences are shared by many. The mission of hospice is to provide specialized care for end-of-life patients and their families. More simply, hospice care supports living one’s life to the fullest with dignity regardless of how much time remains.
Perhaps after reading this story, you can now understand the response from one of our hospice nurses when she was recently asked, “How can you work in hospice? It must be so sad!” She answered, “It is an honor to work as a Hospice nurse. I love that despite living with a life-limiting illness, hospice isn’t about dying but about making the most of each day.”
Hospice care provides pain management, symptom control, psychosocial support, and spiritual care to patients and their families when a cure is not possible. The nation’s hospices serve more than 1.5 million people every year – and their families and caregivers too. (National Hospice and Palliative Care Organization)
“The end of life deserves as much beauty, care and respect as the beginning.” Anonymous
Vickie C. Wacaster, Aveanna Hospice (formerly Comfort Care Hospice) Patient and Hospice Advocate