ACS CAN
LAWRENCE – Janelle Williamson, APRN/NP-C, has seen first-hand how patients can react when they are offered palliative care. She is a nurse practitioner in pain and palliative care services at Lawrence Memorial Hospital.
“The biggest barrier to patients receiving palliative care is not knowing what it is,” explained Williamson, “I’ve developed a special way of introducing myself so patients won’t immediately think they are dying. I wish more people knew: palliative care is specialized medical care for people living with serious illness. Even providers need a reminder on that.”
Palliative care focuses on providing patients with relief from the symptoms, pain and stress of a serious illness – whatever the stage of life. It is provided by a team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Common diagnoses include cancer, congestive heart failure, chronic obstructive pulmonary disease, kidney failure, liver failure or ALS (Lou Gehrig disease).
Williamson provided a list of the top four misconceptions she hears about palliative care, and the responses she gives to set patients and family members at ease.
Myth #1: Palliative care is for patients who are dying.
This is the number one barrier to patients receiving palliative care. People don’t know what it is or think they are being offered hospice care. People who are offered palliative care are often expected to live for a long time with the symptoms of their disease. The more people understand the elements of the care, the more positively they respond. Even in high-tech treatments, people still want their care team to know what their personal goals are for their life and that’s a huge part of palliative care.
Myth #2: Palliative care isn’t covered by my insurance.
This is another common and unfounded fear in most cases, said Williamson. According to the Center to Advance Palliative Care: “Most private insurance plans, as well as Medicare and Medicaid, cover palliative care services in the hospital, in rehabilitation and in skilled nursing or hospice facilities. Medicare and Medicaid don’t use the word ‘palliative’ but the services are the same.”
Myth #3: I have to give up medical treatment to get palliative care.
Palliative care is not hospice care, a valuable discipline in its own right. Currently, patients must be willing to give up curative treatments to receive Medicare coverage for hospice care, which provides support to patients who are expected to live less than six months. Palliative care is designed to work alongside curative treatment, to help a patient cope with a life-changing diagnosis.
Myth #4: I have had enough medical treatment already, and I don’t need more appointments.
Palliative care helps to streamline patient care and reduce the emotional and physical burdens patients face. It reduces the likelihood a patient will need to be admitted to the hospital for emergency care, and improves a patient’s ability to focus on what matters most to them. While it’s possible palliative care may not reduce the patient’s number of appointments, it will certainly make their medical journey less overwhelming.
“Confusion about palliative care is one of the reasons I’m working with American Cancer Society Cancer Action Network and others to advance legislation on the topic,” said Williamson. “We are working to educate lawmakers about a bill that would establish an advisory council on palliative care, to make recommendations about how our laws and policies can support this important care. I have the best job ever. I get to help people facing life-changing illness figure out how to keep their life goals at the center of their care. Public education and support for this work will help more Kansans access palliative care.”
About ACS CAN
ACS CAN, the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society, supports evidence-based policy and legislative solutions designed to eliminate cancer as a major health problem. ACS CAN works to encourage elected officials and candidates to make cancer a top national priority. ACS CAN gives ordinary people extraordinary power to fight cancer with the training and tools they need to make their voices heard. For more information, visit www.acscan.org.
