Recently, in response to the news surrounding the end-of-life care of former first lady Barbara Bush, there has been a renewed interest in palliative care and what exactly “comfort care” entails. Read on to learn more about this additional layer of support for people living with serious illness.
What is palliative care?
Palliative care is a medical subspecialty focused on relieving the symptoms of a disease or disorder and helping to maintain the highest possible quality-of-life for a patient. Palliative care helps those facing a life-threatening or life-limiting illness live better, live longer, and make empowered care choices as they move through their illness.
Dr. Bryan Johnson, medical director for palliative care at Erlanger Health System, defines palliate—the root of “palliative”—as “to lift the burden, to alleviate.” In a way, every physician along the care continuum provides some lifting of the burden and seeks to alleviate the trouble of the illness.
Palliative care, however, doesn’t focus curing the patient. Instead, “comfort care” focuses on reducing the burden of a patient’s symptoms as well as the physical and psychological stress related to their illness while they are simultaneously undergoing treatment for their illness.
What does palliative care look like?
One important thing to understand is that palliative care does not replace regular medical care. It can be thought of as an additional layer of support. A palliative care team is trained in pain management, anxiety medications, or complicated medicine combinations. Primary care physicians — or even specialists — often do not have the time, energy, or expertise to fully delve into the emotional, spiritual, or family concerns that come along with a serious illness.
Dr. Johnson, who is board-certified in family medicine and held a private practice for 12 years before becoming certified in hospice and palliative care, says that a visit to a palliative care physician is a lot like a visit to a family physician: weight is taken, vitals are checked, and your medical history is discussed. From there, though, things are a bit different.
Social support, family concerns, psychological, and spiritual concerns are assessed and attended through an interdisciplinary approach including a palliative care physician as well as a nurse, licensed clinical social worker, health coach, and even a chaplain.
Spirituality, like psychological well-being, is a big part of a palliative care practice. A relationship with Erlanger’s chaplaincy program, whose chaplains cover a wide range of spiritual and religious perspectives, equips the palliative care team to connect patients with a spiritual companion who can help them face the “big existential questions”, which Dr. Johnson says come to the forefront when a person is facing an upheaval in their normal life.
Palliative care vs. hospice care
Both palliative care and hospice care serve patients with life-limiting illnesses, which often leads to confusion about the difference in the two types of care. The primary difference is that patients who receive hospice care are no longer undergoing any curative treatments. In contrast, palliative care is designed to work in conjunction with on-going—even aggressive— curative care.
Palliative care can begin at the time of diagnosis and can be employed on an on-going basis alongside active treatment, while hospice care is typically only after curative treatment of the disease is stopped and a patient is estimated to be in the last 6 months of their life.
Hospice care is covered by Medicare for up to 180 days, but most people only spend 14 days in the care of a hospice team. Having a palliative care team assures that, should a person begin to approach end-of-life or choose to cease treatment, they will be referred earlier and can maximize the benefit that hospice offers.
One of the things that hospice offers that palliative care doesn’t? Bereavement and grief counseling. Dr. Johnson says that sometimes we may not begin grieving until weeks or months after the death of our loved one. “Establishing a relationship with a hospice provider, even if they may not want to participate during the active days of dying, can be a powerful resource for the family.”
A patient’s perspective
When a cancer diagnosis in 2017 led Cori to Dr. Johnson, she was initially skeptical. Assuming palliative care was another term for pain management, she expected to be prescribed pain medication and sent on her way. “But this place is the opposite,” Cori says.
While pain management is an important part of helping patients continue to carry out their daily lives, the holistic approach is what made a difference for Cori, particularly her relationship with social worker, Jacqui Schollenberger. “I have a bond with this team. They’re like family to me.”
When does palliative care end?
Cori finished chemo in October 2017 and by Thanksgiving, she was in remission. So how long will she continue to see Dr. Johnson?
“The year after cancer is the most challenging, “ Dr. Johnson says. The hope with patients like Cori is that “when she no longer needs prescriptions, when she has grown with Jackie, and when her cancer is gone or not expected to come back, she will feel empowered to stop seeing our team on her own.”
The goal of the new palliative care services at Erlanger is to help people with serious illness live as well as they can, for long as they can, and on their own terms. If you or a family member might benefit from palliative care, call Dr. Bryan Johnson’s office at 423-778-2867.