“Transforming the View of Palliative Care by Focusing the Zoom Lens”
(Part two of three)
In the early 1990s, I found myself engaged in a lively discussion about end of life care versus palliative care for the pediatric population. Because of the ages of those we cared for, some of my colleagues felt that palliative care was, in essence, end-of-life care. Having started my career working with children with developmental disabilities, I knew that there was a difference.
The decision-making and the conversations were so much more in focus. There was a clarity that you felt and knew as you worked together with the child’s loved ones and care and support teams. You understood what you were going to do in care and treatment and what you were not going to do because of the clear and agreed-upon decisions. Palliative care was not defined by time, but action and care.
I found myself thinking about this clarity as I took this picture (below). As an amateur photographer, I love to zoom
in on my subjects. It is rare for me to take a large-scale wide-angle picture because I prefer the finite definition of a zoom lens.
By zooming in, you experience much more than just the setting. This photo was taken in a small restaurant. The flower sat on my table, small, insignificant and very much ignored by others who had similar blossoms sitting on their tables. If I had taken the picture of the table, you would see it as an ordinary table with nothing spectacular, except perhaps the basket of perfectly baked bread wrapped in bright linen and sitting in a silver basket.
The flower would be lost amongst the many items vying for the viewer’s attention.
It struck me that even today — just as we see the table with all of the items in the image — we see palliative care from a wide-angle viewpoint. We see diseases, treatments, medications and interventions with shortened conversations and quick reviews for an advanced directive.
What would happen if we took a zoom lens to palliative care?
In her article “Building A Quality of Life National Movement: Igniting Advocacy To Integrate Palliative Care In Our US Health System,” Rebecca Kirch wrote, “Most of the current public policies and discourse about quality of life in healthcare focuses on the end of life. That tradition may actually impede delivery of person-centered and goal-directed quality of care from the onset of illness.”
If we stop to ask ourselves what we want from life, we would answer that we want to live as healthy, disease-free and pain-free as possible. When disease and pain arrive, we want both to be managed, allowing us to pursue the most optimal levels of health.
This is the change in the viewing lens we must make in our healthcare system: The lens through which we view optimal levels of health in today’s system cannot be the same lens we use for the future.
Let me give you an example. My loved one has diabetes, has had open-heart surgery, a temporal lobe aneurism and stroke, suffers from neuropathy and was diagnosed with aortic stenosis. Before we defined optimal health for her, she was scheduled to see a cardiovascular surgeon. As we discussed what she really wanted for her life and health, we made the decision to support palliative care and not surgery. Optimal for her was to be comfortable, as active as possible and not undergo aggressive treatment. Her quality of life was self-defined by the ability to live in an assistant living setting with her beloved cat by her side and friends all around her.
That was 10 years ago and we maintain that plan of care with her physicians to this day, albeit with adjustments through the years as her kidneys became less functional and she experienced more complications from her diabetes. She can still put together a puzzle faster than most and keeps track of the local hometown news for those of us who do not live there anymore. Occasionally, we have had to step in when a new physician wants to be more aggressive in care, explaining the palliative plan of care and reaching agreement as a team on the best approaches for each new symptom or issue.
The lens of palliative care cannot be focused on just end of life. We as caregivers must welcome the opportunity to take the time to help those we serve understand their chronic diseases and discover the right approach in care and management. Refocusing the conversation on palliative care from end of life care to instead, ensuring support through transitions of chronic disease management, can and will start to reshape and refocus our health system.
Martie Moore, RN, MAOM, CPHQ is the chief nursing officer at Medline Industries Inc., the nation’s largest privately held manufacturer and distributor of medical supplies and clinical solutions. In addition, she is a corporate advisory member for the American Nurses Foundation, the philanthropic arm of the American Nurses Association (ANA).
