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.
Having a health care directive in your medical records is one favor you can do your family, and in some of the most unexpected and unavoidable times, they will be grateful you have it.
When I first visited my palliative care doctor, I wasn't going because I felt I needed to. I was going because I had heard other rumblings from patients who talked about their palliative care team solving issues that their own oncologist had either ignored and couldn't fix. Though I considered my own care plan to be very well rounded and all the obvious gaps filled, I thought it couldn't hurt and wanted see if she could illuminate any little corner in my care that I had perhaps overlooked.
I described my long journey from diagnosis to present time, and we talked about the many layers I visualize when I step back and look at my entire care plan. Though she admitted she could see I had thoroughly thought through the type and quality of care I was getting, she quickly shined the light on some cracks I had not noticed, or perhaps things I never considered to be gaps in my treatment plan.
The most obvious to her was my spiritual and mental wellbeing. I know it was now routine with every clinic visit to be asked a series of questions about my mental health and personal outlook. But this was the first time a medical doctor asked about my spiritual needs, and I was honestly a little surprised. We quickly decided together that my spiritual needs were not one of those cracks she might be looking for. She let me know that her team included a palliative care nurse, a social worker on speed dial and a chaplain, should I ever decide I do need to weave in spiritual care into my physical care.
As she continued on with questions, she asked about a health care directive. It was actually something that had never been presented to me by any of my previous oncologists, and something I'd never pursued given my overall health and the stability of my disease. She handed me a small packet and asked if I wanted to talk about my preferences in care should I not be able to make them for myself. Not that I'm staring down death at the moment, but we are all going to stare it down at some point, and you never know when you might find yourself unresponsive with vital decisions needing to be made. You also might find yourself with no one (or too many people) there to make them for you.
Knowing and sharing our wishes is great, but when push comes to shove and decisions have to be made, having your desires on paper (and in your electronic medical record) can save and solve much of the hassle, stress and drama that can often arise out of unexpected medical situations. She went over some of the situations that are laid out in the health care directive, and asked if I wanted to fill it in on my own or schedule another appointment to come back and go over it together.
Though usually very independent about these things, I opted to come back and work on it with her. She clearly had more experience and understanding, and could advise me based on her own background as a physician working with chronically ill patients. I knew this document could help my family, and release the responsibility and potential for pain and guilt should they be left to decide things on my behalf.
I also let key people know they were listed as a decision maker if needed, and I also told my immediate family know that this document existed, what it entailed and where it could be found. That document was the most important thing to come out of that first visit with my palliative care doctor. I went in expecting her to shine a light around and find a few small cracks, but she ultimately shined a spotlight on what I now consider to be a vital piece of anyone's health care plan, and one everyone should consider having in place.