A new statewide coalition will improve the quality of life for cancer and other patients with a serious illness and support their families through palliative care.
House Bill 4035, signed into law by Gov. Jim Justice in March, creates a State Advisory Coalition on Palliative Care which, among other things, brings together experts and groups statewide to address the barriers of palliative care and identify innovative solutions for West Virginians.
“Currently, there are some gaps in the end-of-life services provided to seriously ill patients in West Virginia,” said Del. Amy Summers, an author of the bill. “My vision for the coalition is for the health-care experts to come together to identify those gaps in services, increase awareness of palliative care and develop a plan for the legislature that supports patient and family caregivers in accessing and using palliative care in West Virginia."
Palliative care is specialized medical care for people with serious illness. It is appropriate at any age and at any stage in a serious illness and can be provided alongside curative treatment. The goal is to relieve symptoms and stress and improve the quality of life.
Summers said members of the coalition will include physicians, nurses, pharmacists, a patient advocate, family caregiver and a spiritual advisor. A list of names and recommendations have been submitted to the Speaker of the House Roger Hanshaw and she expects the coalition to be named soon.
The legislation also received support from groups such as the West Virginia Center for End-of-Life Care, AARP of West Virginia, the American Cancer Society Action Network, Mountains of Hope Cancer Coalition and the Alzheimer’s Association.
Chris Zinn, executive director for the Hospice Council of West Virginia, was also very involved and supportive of the creation of a State Advisory Coalition on Palliative Care. There are currently five hospice teams in West Virginia who also provide palliative care services to patients and caregivers.
“We know from surveys that the majority of West Virginians are unfamiliar with palliative care despite it being important for patients dealing with advanced illness,” Zinn said. “This coalition will help develop a system for identifying patients who can benefit from palliative care and provide them the information and resources needed.”
Dr. Alvin Moss, director of the West Virginia Center for End-of-Life Care, works one-on-one with patients through their final months and days. The Center encourages completion of advance directives, such as living wills and Medical Powers of Attorney and medical orders, such as the Physician Orders for Scope of Treatment form.
“Too often, people wait until the very end to ask for palliative care services,” Moss said. A key goal for the State Advisory Coalition on Palliative Care will be to have a strong educational component for residents, as well as health-care professionals which outlines treatment options and determines the types of treatments they want and do not want.”
Sen. Shelley Moore Capito, R-W.Va., has also been a champion of palliative care and hospice. Recently she led the Palliative Care and Hospice Education and Training Act, legislation which would enhance palliative care education for health-care professionals and provide a national awareness campaign for the services.
“As someone who has cared for aging parents, I understand how important palliative and hospice care is and how much support and comfort it provides to patients and their families,” Capito said. “My parents first utilized palliative care and then hospice, and I was able to see the benefits firsthand. I feel strongly that we need to strengthen training and education options for individuals involved in these fields, and we need to also raise awareness that this type of care exists.”
With an estimated 5.5 million Americans living with Alzheimer’s and other forms of dementia, the Palliative Care and Hospice Education and Training Act is more important than ever before.
“After caring for both of my parents who each suffered from Alzheimer’s, I understand what it’s like to have a family member receive hospice care and what a help that care is in so many different ways,” Capito said. “That’s why I’m so committed to making sure this critical service is available to others.”