Empowering patients with a common language for palliative care
Just one week after my 29th birthday I suffered a grand mal seizure and was rushed to the ER. A CT scan of my brain showed a large mass, and after a nine-hour brain surgery I was diagnosed with a gemistocytic astrocytoma -- a slow growing, but malignant brain tumor with a high rate of recurrence.
And recur it did.
Six months after my first surgery my tumor grew back sending me into a whirlwind of treatments over the next two years, including a second brain surgery, struggles with seizures, a rigorous schedule of physical and occupational therapy, and 24 months of chemotherapy.
Fortunately, I received excellent care through my neuro-oncology nurse practitioner, Mady.
I used to refer to her as ‘Super Awesome Nurse’ because she handled my nausea, headaches, and constipation -- all the side effects of treatment. Mady would field my daily calls and emails, tweaking and adjusting medications or suggesting simple life hacks to help me through what I was feeling.
But I never knew the kind of care I was receiving had a name until five years after I completed treatment and started working for a healthcare nonprofit advocating for access to palliative care for all people facing serious illness.
After I took the job it took a few months for me to realize I am a person who received palliative care. At the time, I assumed the care was the result of me being lucky enough to have been paired with an amazing NP (which could still be true); but now I know the name for it is palliative care.
Why did Super Awesome Nurse never tell me she was practicing palliative care? I asked her!
“While I, as the healthcare provider, may have viewed much of the care that was being rendered as palliative in nature, not all patients are ready or willing to consider that most types of brain tumor care is palliative,” says Mady Stovall, NP, former neuro-oncology nurse practitioner and current PhD student at Oregon Health and Science University.
Avoiding the term “palliative” initially is understandable. After all, there’s a lot of confusion between palliative care and hospice. And no one wants to cause panic that a condition is more serious or has suddenly become more serious.
“The perception in cancer care is that palliative care is often (and inappropriately) equated with hospice care,” explains Stovall. “Sadly, this misconception prevents many patients, families, and even healthcare providers from being able to capitalize on the expertise and resources of palliative care providers and programs. “
However, if I had changed health systems or had to find a new provider, I would not have had the words to translate the care provided by this “super awesome” nurse to make sure it continued or was re-initiated as needed. At the time, I didn’t have the language to ask for that care and advocate for myself.
Having coordinated palliative care was crucial to my quality of life because my brain tumor was causing a lot of seizure activity. I tried seven different anti-epileptic drugs (AEDs) over five years to finally land at the right combination of medication that worked for me. Seizures are scary and make you feel as if you don’t have control over your own body. That’s why palliative care is essential; these providers listen to your concerns and fears and make sure your medical as well as emotional needs are addressed.
Giving people language for self-advocacy
While patients shouldn't be overwhelmed with clinical language, helping us understand what things like palliative care are and are not improves our ability to advocate for ourselves.
In fact, it was only after my recurrence that I learned about oncology social workers. Had I known about this role, I would have asked for it when going through surgery and treatment for my initial tumor.
Not everyone is going to become an expert patient in health communications, but educating patients and families as they get and make decisions about care can help us share what is most important to us.
I co-authored the original version of blog post with Geri Lynn Baumblatt, and it originally appeared on the website for the Association for Patient Experience. For this personal blog, I made light edits so it reads in first person.
