I heard a story on NPR yesterday that made me think a lot about my mom, and the care she received before her death. The news piece was about an experimental change for hospice-eligible Medicare patients. Palliative care focuses on treating pain and symptoms of serious illnesses with a goal of maximizing the quality of life for the patients and their caregivers. Hospice focuses more on care for patients in the last phases of life for those with an incurable disease. So, in the way that all thumbs are fingers, but not all fingers are thumbs, so too that all hospice care is palliative, but not all palliative care is hospice.
Currently, to receive hospice care, Medicare patients must agree to stop receiving curative treatment for their disease. In these cases, they receive what is technically palliative care as part of their hospice care but are forced to make a decision between care that treats their symptoms and life-prolonging treatment options. The trouble for most patients is that there is no fine line between hospice and palliative care; they often overlap or are needed simultaneously.
And this is where I struggle, and why I think back to my own mother’s care. She was diagnosed in the fall of 2012 with a type of lung cancer with a horribly long and frightening name. Basically, it was non-small cell lung cancer that had metastasized to her liver. In the beginning, she responded to chemotherapy, and we were hopeful. The tumor in her lung shrank and the one in her liver disappeared all together. And then the chemotherapy stopped working. The tumor on her lung grew again, and the cancer returned to her liver before spreading to her spine and brain. My mom elected to keep fighting and opted for radiation treatments to combat the tumors on her spine and in her brain. Because of the effects the previous chemotherapy treatments had, and the known effects of the radiation, she was unable to undergo chemotherapy and radiation simultaneously. Basically, she chose to fight the tumors in her spine and brain instead of the ones in her lung and liver.
Knowing what I know now about the toll the chemotherapy and radiation took on her body, I’m angry that she wasn’t offered palliative care* to help her cope and deal with the effects of those treatments. Instead, we were offered support groups and words of empathy. For my mom, management of the pain associated with the tumors in her spine would have been a wonderful complement to the care she was receiving to reduce the size of those tumors.
Happily, under this new experimental model, Medicare patients with terminal diseases will be able to receive a range of hospice services (all of which are palliative), even as they continue to receive life-prolonging treatment for their disease. In my head, I’m doing a little dance for the 30,000 Medicare patients and their families who are able to be part of this experiment. Patients like my mom will be able to receive care for the side effects that go along with the treatment of some diseases.
And it makes me yearn to tell everyone I know about the options that are available to those with a disease that needs to be managed. Most patients and their families are unaware of palliative care and the help it offers in managing a range of disease, like COPD, congestive heart failure, or HIV/AIDS. I think I may have found a new cause to put my health communication skills to use.
*Our family did discuss hospice treatment for my mom. In what we see as her final act exerting control, she died before we could even make a phone call. And if you knew my mom, you’re not surprised at all.
Allison Bryan has more than 10 years marketing experience, spending the majority of her career in health care organizations. She has a Master of Science in Health Communication from Boston University and Bachelor of Arts in Communication from the University of Missouri. After spending the worst winter of life in the Chicago area, she recently relocated to Chattanooga, Tennessee, where she is an Account Manager for True North Custom, and works with health care organizations nationwide to provide data-driven content marketing strategies.