Strengthen palliative care to help build a more patient-centered system
It was as a son, not a healthcare CEO, that I experienced the pain of my mom’s “do not resuscitate” order being ignored. Her medical team pushed through the door and subjected her to a full code, against her wishes, the night her heart beat for the last time.
Not only did we lose my mom that night, my family and I had to deal with knowing her wishes weren’t honored at the end of her life.
It was not only that night, but throughout the course of her illness that it felt as if we had to arm wrestle with providers against unnecessary tests and procedures that would not change the outcome. At times, it was as if the needs of the institution were more important than the needs of my mom.
When we’re sick or injured, we have confidence our leg will be fixed or our disease addressed with good curative care. Providers are in tune and trained to treat the physical needs of patients.
But unfortunately, they’re all too often tone-deaf to the art and science of engaging the spiritual and social needs of the patient and family. This skill is referred to as palliative care.
Palliative care relies on a deep connection between a doctor, the patient and the patient’s family. It’s an understanding that treatment isn’t only about a cure, it’s about healing, which to my mom meant an acceptance and a desire for a graceful end to her life. When this level of care is explained, with an emphasis on what matters to you instead of “What’s the matter with you?” an overwhelming number of people want it.
In 2011, the Cambia Health Foundation, together with the National Journal, conducted a nationwide survey on Americans’ awareness and attitudes toward palliative care.
We learned two very interesting facts: first, 71% of those surveyed were unfamiliar with the term; and second, after receiving an explanation, 97% felt it was important for patients and their families to be educated about palliative care, with end-of-life care options available along with curative treatment. When was the last time 97% of Americans agreed on anything?
This survey substantiated the work begun nearly a decade ago when the foundation decided to lean into this effort. To date, it has invested more than $25 million into pediatric and adult palliative-care programs and initiatives to create access and awareness and improve the quality of palliative care. The foundation’s regional collaboration includes a $10 million endowment to the University of Washington in Seattle for the Cambia Palliative Care Center of Excellence, which is quickly becoming a role model for best practices in palliative-care education, metrics and implementation.
A recent report by the Center to Advance Palliative Care confirmed the Pacific Northwest as a leader in the field and we’re honored to play a role. In 2014, we took the lessons from our foundation work to our regional health plans, launching a comprehensive palliative-care benefits package. To further establish the effort, we’re focused on fostering and investing in entrepreneurs dedicated to transforming the experience for patients and their families fac- ing a serious illness and end of life.
The CMS’ announcement in October that it will begin reimbursing physicians for voluntary end-of-life counseling with Medicare patients is a great step forward for the industry. These discussions, co-existing with curative care, can help make the shift toward a more holistic standard that:
Puts a patient’s physical, social and spiritual needs at the center of his or her care plan
Expands access to care and recognizes the role of the family
Engages communities and policymakers
Encourages investment in solutions and innovations
Palliative care is a microcosm within healthcare, in which the needs of patients and their family members should be first and foremost. When I tell my mom’s end-of-life story, I’m continually amazed by the number of people who share similar stories.
We have an opportunity as a healthcare system to meet the growing demands of people and their families to create a seamless care experience that puts them at the center.
The industry should be thoughtful about that intent, understanding that an investment in palliative care is not about making or saving money. It’s about what families long for, so they feel in control when they’re most vulnerable. It’s not a return on investment; it’s a return on humanity, and it’s personal to all of us.