Over the past month I’ve been on a very personal mission as I helped my mother live out the final chapter of her life’s journey. In early November she learned that her lung cancer had metastasized to her bones. The PET scan only confirmed what she already knew from her painful symptoms.
This feisty, smart, strong and good-humored octogenarian wasn’t scared, but rather somewhat relieved to learn her timeline. She had said, “We all wonder when and how we’re going to die. Now I know. I’m a planner and now I’ve got a clear deadline.” But she wanted to do it her way and on her terms. My job then, became 100% focused on her needs and desires. And in the process I gained the greatest personal and professional insights of my life.
Sharing this journey with her was the most demanding yet rewarding time of my life and I’m blessed to have had this experience. As I begin to emerge from the fog of exhaustion and grief, I’m reflecting on what I have learned in the process. Here are just a few of my epiphanies or “AHA!” moments that I’d like to share. The first is professional insight and the second is an important personal revelation.
What it means to be truly patient-centered – We talk a lot about patient-centeredness in healthcare and I think the intentions are good but, more often than not, we’re simply allowing the patient to become active in the providers’ established treatment plans. When I had to make the shift to strictly palliative care, I gained a much greater appreciation for patient-centeredness. In this case it was her comfort, her desires, her plan. The rest of us were there strictly to support her and to carry out her wishes while keeping her safe. She wanted to die at home with her wits about her yet as comfortable as possible. We made that happen. On January 22nd, just 3 days shy of her 87th birthday she passed away in her own bed surrounded by family and enveloped in soft light, soothing music and the smell of lavender.
The importance of remaining true to my values and connection to purpose – I had to be there. Not because of my caregiving ability and nursing skills or a daughter’s sense of responsibility, but because it was as much a part of the fabric of my being as my own breath. I simply couldn’t NOT be there with her and for her. At several points during her final weeks, mom expressed her worries that my time with her was stealing me away from my business. It was sometimes difficult to explain, but became increasingly clear that I wouldn’t have my business without my passion for care and caring. My business is simply an extension of my values and connection to purpose. The two are inextricably intertwined.
Over the years I’ve shared numerous stories with my readers about how my mom navigated the healthcare system and what she taught me about the patient experience in the process. I’m deeply honored and humbled that I could share her final journey with her. I will miss her terribly but am eternally grateful for what she taught me. Until the very end, she enriched my personal and professional life through our shared experience.