“Where do I go from here?”
It’s a question I’ve heard far too often as a hospice and palliative care provider for more than 30 years. After being diagnosed with a serious or life-limiting illness many people are left wondering what to do next. It’s a tremendously scary prospect when modern medicine runs out of answers, or a person decides it’s time to stop fighting.
I feel very fortunate that my job allows me to offer families a little peace, as well as options for where to turn. When individuals, in consultation with their care providers, decide not to continue treatment, hospice is there to support them — focusing not on a cure, but on comfort. We can’t heal the body, but we can attend to the patient’s physical, emotional, psychosocial, spiritual and familial needs. We can optimize quality of life by anticipating, preventing and treating their suffering.
While most people know something about hospice, 77 percent of West Virginians are unfamiliar with palliative care despite it being just as important for patients dealing with advanced illness. Palliative care is specialized medical care for people with serious illness that focuses on providing relief from the symptoms and stress and this can be provided while they continue curative treatment. The goal is to improve quality of life for both the patient and the family.
Studies have shown that patients who receive palliative care early after a terminal diagnosis have a better quality of life, experience less frequent depression and sometimes even live longer than those who do not receive palliative care. Although palliative care is not something many ever think about needing, it’s an essential part of our nation’s healthcare system — especially as our Baby Boomers age.
Here in West Virginia, we’re lucky to have policymakers who understand the importance of this care — and who are looking out for our healthcare needs, whether they are around the corner or years down the road. Delegate Amy Summers recently introduced House Bill 4035 and with its passage, West Virginians will have increased access to and awareness of palliative care. Sen. Shelley Moore Capito and her staff have supported this legislation and presented at the health forum to launch this initiative.
Capito has also been a champion — and lead co-sponsor — of critical legislation that will protect the future of hospice and palliative care by increasing training in a variety of settings and expanding the range of medical professionals trained to provide it, including nurses and clinical social workers. She’s a leading supporter of the Palliative Care and Hospice Education and Training Act (or PCHETA) which recently sailed through the U.S. House of Representatives and, thanks to Capito’s efforts, is poised for consideration in the U.S. Senate this year.
PCHETA is desperately needed to address a growing deficit of trained providers able to ensure Americans have access to quality palliative care. A recent study estimates there will be no more than one percent growth in the palliative care and hospice physician workforce over the next 20 years, while the number of people eligible for palliative care will increase by more than 20 percent. Without a change, there will be only one palliative physician for every 26,000 seriously ill patients by 2030.
These numbers are even worse in West Virginia. For patients receiving care at the 53 rural health clinics (RHC) here — an outdated law prevents RHC physicians from serving as the patient’s hospice physician. This prevents rural West Virginians from receiving the care they need at the end of life. Thankfully, Capito is also leading an effort for change called the Rural Access to Hospice Act, which also has bipartisan support in Congress.
No American should ever have to worry about or struggle with what to do when facing advanced or life-limiting illness. At such an exceptionally difficult time, there should always be a trained hospice or palliative care professional available to ease the journey. The tough question of “Where do I go from here?” should be met with reassurance that the right public policies are in place to guarantee hospice and palliative care will help patients find peace and comfort.