Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
By treating the patient as a whole, we ensure the common gaps in care do not get overlooked and the burden of cancer is reduced.
I was on the phone with a colon cancer patient who was looking for help and guidance. She had grown frustrated with her oncology team, and gradually explained the long list of complaints and opportunities where they had let her down. After validating many of her concerns, I told her, "It sounds to me like you are looking for palliative care, and they just aren't offering it."
In my world, palliative care is a term thrown around as frequently as my rounds of treatment, but it was the first time she had heard the word. As I began to explain it, I could hear her disappointment turn to hope over the phone. There was a word to describe the patient experience she wanted but wasn't getting.
Not everyone knows what palliative care is, and most don't know how to put it into practice as advocates in their own care. It is the relative new kid on the health care block, and many medical teams are not trained to care for the patients with this approach. So, what is this magical thing called palliative care, and how can we incorporate it into our own health care plan?
As I see it, palliative care is tending to whole patient and not just their disease. For me, my care plan involves layers, that when woven together, reduce the stress I feel as a patient. And the less stress I feel, the better I'm going to fight my disease and improve the quality of my life.
Here's what my palliative care plan looks like:
The internal layer is about fighting my cancer. It's about infusions, scans, clinical trials and working to keep my disease stable. For others, it could include radiation and surgical treatment. It may even involve second opinions, and a multidisciplinary approach to beating back disease.
The next layer is about managing side effects. I meet with my pharmacist at almost every infusion to talk about nausea, blood counts and what we can to manage my day-to-day quality of life through medication. At times, this layer has included meeting with a dermatologist and podiatrist to discuss treatment-related skin and foot issues, and an acupuncturist to help treat neuropathy.
The next layer involves care that doesn't immediately impact my ability to physically fight the disease, but my ability to live my life to the highest quality despite the disease. That includes seeing a physical therapist to manage the lymphedema I developed in my left leg several years after my primary surgery. For others, it could be meeting with a mental health professional to help process the emotional repercussions of diagnosis, a dietician to help manage treatment-related nutritional needs, or a social worker that will help navigate services available for patients through the health care system or community organizations.
The outside layer extends beyond me to include my family, and the community and online support programs available to us. For me, it includes local organizations that offer family support programs such as camps for my kids and art therapy nights. Online support communities help me know I'm not alone in my fight and offer the peer-to-peer mentorship that is unique to my cancer and specific treatment plan. Support programs could include free or reduce cost service to patients that fall outside of the medical realm yet fill gaps in care and help reduce the burden of cancer on an individual and a family.
It is important for a cancer care team to know about the various layers of care they can bring to a patient fighting a chronic or terminal disease, and begin to look at treating them as a whole. It's also important for a patient to advocate for themselves, and understand what services are available to them within reach of their community. As we work from the outside layers in, we're going to create an environment that enables patients to give everything they have to fighting and managing their disease, and ultimately produces better outcomes.