March 20, 2019
Eighteen months ago, Rosemary was under the care of 8 different physicians, each one intensely focused on their individual body system. Although you would never guess it from our posts and adventures, Rosemary is legally blind and very hard of hearing. She has also suffered several spinal fractures and a broken hip within the last four years, combined with other health complications. Because of her visual and hearing barriers (and the level of anxiety those losses bring), each trip to the doctor’s office for appointments exhausted her both mentally and physically.
At one point, I hit a wall after sitting in one doctor’s office for over 2 hours with her to wait for an appointment with an eye specialist. I called her primary physician’s office the next day and thoroughly explained the situation. A very kind RN suggested I investigate Palliative Care. I made the appointment for my Mom and I not quite knowing what to expect, and certainly had no idea on how life changing it would be for Rosemary and our entire family.
Palliative care gave my Mom her life back.
Rosemary was literally waiting to die when we were referred to the palliative care clinic. Now, she is living and thriving. She is in control of her decisions and medical care and not at the mercy of 8 different providers who rarely, if ever, communicated with each other.
Trying to define Palliative care is difficult as so many people confuse it with hospice care. I sought help from a Palliative care team member to help me define it. They said: “Palliative care seeks to answer the question of “What is it that is important to me right now, considering the unique circumstances I am facing?” It requires a deep dive into the heart of what matters to each of us as people, and in a broader sense, within the framework of our families and communities, however that is defined.
Palliative care can be practiced by anyone, whether they are a primary care clinician, or specialists, or other members of the healthcare team. In fact, nurses have been practicing the palliative care philosophy for hundreds of years. Palliative care as a philosophy can be implemented by any person at any time, to guide healthcare decisions. It is sort of permission, if you will, to regain control of our healthcare; to make our own decisions. This philosophy allows clinicians of all specialties the liberty to provide the best quality care with the least amount of suffering, which is a goal that initially drew many to medicine in the first place. I would wager to suggest that Palliative Care distills down to the very Heart of Medicine.
I believe Rosemary is her happiest with her medical care than she has been in a very long time. She is in control, she feels heard, she is valued as a partner in her care and she is respected and treated with love and kindness.
I don’t place blame or ill will towards the eight providers who were trying to each sustain the body part they were assigned to prior to Palliative care. But, not one – ever suggested the option which is concerning. I can’t help but ponder why?
The first photo in this picture is Rosemary holding my hand saying goodbye (prior to Palliative care) and the second one is Rosemary on the Blessing bike after being in Palliative care joyously waving at life itself.
Thank you to Palliative care practitioners everywhere who are embracing this model of care.