Palliative (Pal-lee-uh-tiv) Care
By Rethink Breast Cancer March 15 2019
Palliative Care, by definition, is the specialized medical care for people with a serious illness and a common goal to improve quality of life. To a patient, palliative care is perceptually linked to words such as terminal, hospice and end of life. For me, palliative care is a step, part of a process; one that the Marvelle Koffler Breast Cancer Centre has integrated into my diagnosis as a whole.
I can put a check next to the above statements. I have a serious illness. I am stage 4 – terminal; but my status update right now is that I’m living with metastatic breast cancer and my palliative doctor is part of the team that is helping me be here, with you, to see another day.
When my oncologist sat me down and told me that my breast cancer had returned and was metastatic, I was at a loss for words. Terminally ill at 29. After explaining what this meant for me, she mentioned that there was another doctor she’d like me to meet and add to my integrated health care team. Then she said it … the P word; Palliative. I took a deep breath, thinking about those perceptually linked words while trying to gauge how little time I had left. I sat quietly, listening, as the conversation changed direction to an entirely different path – palliative care as an untapped resource.
I was overwhelmed, scared, confused and trying to keep my growing panic levels down as she went on to explain that studies show integrating a palliative doctor into patient care at an earlier stage of a terminal diagnosis can lead to more positive outcomes for the patient.
ONE – take a deep breath.
TWO – digest what I was just told.
THREE – I’m not dying tomorrow, this week, or next month.
Okay, one more deep breath for good measure and let’s continue!
At first, I was unsure about treading into this unknown territory, but slowly, as the layers peeled back, I was able to see the bigger picture and to understand why integrating palliative care earlier on could create such a positive impact.
I was creating a stronger integrated team that will continue to look out for my best interests. I have been able to build a relationship with my palliative doctor that makes me feel comfortable to open up, ask the tough questions, talk about the drugs, the side effects, and what to expect.
Why does that matter?
Death and dying aren’t words you can pass over. Everyone has different ideas on how they want to navigate through the process. For me, it’s my quality of life. Being able to have these conversations with my palliative doctor now gives her the opportunity to understand how I like to broach the tough topics and the never ending list of drugs to manage drugs to manage drugs. She has a better understanding of my mindset and how I make choices about my care.
Why is this so important?
I feel confident that this stigmatized resource has created a better health environment for me. By bravely engaging with palliative care I believe that I have a stronger team around me that knows now how to advocate for what I want and need as I venture further down the rabbit hole of cancer care. Having access to more information, discussing the big questions, and laying the ground work now for what I want for my end of life decisions helps alleviate pressure for myself and my amazing support system. It also ensures that my medical team knows that I am making choices for me and not ‘in-the-moment’ panic choices because I’m feeling beaten down, tired, or drugged up.
Cancer could have its own dictionary with endless lists of scary words, definitions and side effects that impact and change your life every day. Over the past two years, I have learned that Palliative (Pal-lee-uh-tiv) Care is not one of them. It is a supportive resource that can help bridge the gaps in cancer care, patient care and foster an overall better understanding of the ever changing ‘new normal’, one day at a time.
Jennifer Landa #BoobieWarrior