How much do you really know about palliative care?
Shorin Nemeth, D.O.
Medical director, Palliative Services, Providence in Oregon
Mr. Johnson is a 65-year-old man with severe lung disease due to a lifelong history of smoking. Once an avid golfer, he now trails his oxygen canister with him to every destination. He always arrives at his doctors’ appointments 30 minutes early so he has time to pause and catch his breath every 10 steps between his car and the clinic.
“What brings you in today, Mr. Johnson?” I asked.
“My doctor said she couldn’t help me anymore, so she sent me to you,” he replied.
“It sounds like you may benefit from palliative care.”
“But I’m not ready for hospice!” he exclaimed.
Research indicates the value of palliative care
Despite being formalized as a field of medicine in 1990 and recognized by the American Board of Medical Specialties in 2006, palliative care still carries the common misperception as expressed by Mr. Johnson. Even many medical professionals express similar thoughts or don’t fully understand the difference between hospice and palliative care.
According to the Center to Advance Palliative Care (CAPC), palliative care is defined as, “…specialized medical care for people with serious illness. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness – whatever the diagnosis.” Ideally, this care is delivered by a multidisciplinary team consisting of physicians, NPs, RNs, social workers and chaplains.
You may be familiar with the New England Journal of Medicine article published in 2010 that showed early palliative care can lead to significant improvements in quality of life, mood and survival. Or perhaps you read the Institute of Medicine’s consensus report in 2014 called Dying in America, which stated that improving access to palliative care “…affords patients and families the highest quality of life for the most time possible.” There are volumes of literature to support the benefits of palliative care as patient centric, focusing on the whole person and providing a value-added service.
What palliative care is … and is not
Palliative care is a graded continuum of care. Ideally, a patient is referred shortly after the diagnosis of a serious illness. The amount of palliative care support at this point generally is minimal. As the disease progresses, the palliative care team works with the patient, the primary care provider and specialists to increase the patient’s quality of life while receiving treatment.
As treatment options diminish, the patient could be referred to hospice. It’s important for patients to understand that hospice is reserved for the final six months of life and that hospice is a subset of palliative care. The two fields of care are related but are not the same.
To help clarify this, Linda Desitter, M.D., medical director for Providence’s palliative care operations in Oregon, and her team developed a grid to outline palliative care in a quantifiable manner. This tool is valuable for both primary and specialty care providers.
Palliative care grid
(Y axis contains the specific domains, while X axis addresses progress along these domains, with higher numbers indicating proximity to completion of that domain).
Using the palliative care grid to open important conversations
If we look at this grid in the context of Mr. Johnson, we can begin identifying gaps in his current situation and the resources needed to fill them; from there we can develop a care plan. Most evident is his need for symptom management, and we learn that he has not been through the advance care planning process. This helps us open the discussion with him about family support, financial resources, his current living situation, how frequently he would accept hospitalization, how much of his care he would prefer to receive in the hospital, what values define his quality of life, and so on.
It should be noted that the core of this work is not to push an agenda, but rather to know the patient and advocate for him or her. The purpose is to open up the discussion. As experienced caregivers, we know that it’s far better to have a thoughtful, informed discussion sometime before the emergency room doctor or intensivist is holding a laryngoscope asking for a decision. It’s also important to point out that patient and family preferences can change. A POLST form is a great measured outcome, but does this form truly reflect the patient’s current wishes?
Mr. Johnson and his improved quality of life
I’m happy to say that after learning more about the value of palliative care, Mr. Johnson decided to let me become a part of his treatment team. Six weeks and a few medication adjustments later, he was proud to inform me that he was able to golf three holes and make it to his appointments with significantly less shortness of breath.
For more information
Learn more about palliative care by accessing the Center to Advance Palliative Care website (www.capc.org), free to all Providence caregivers, or feel free to call Connections in Portland at 503-215-2669.