Patient engagement is important and not guaranteed

Reporting for my volunteer shift at a small, inpatient hospice, I reviewed the daily census report that noted a special request for a visit from a patient I will call Joan. Joan was in her early 70s sitting alone on the edge of the bed looking out the window. At her request, I pulled up a chair and took her hand. There she began to tell me the story of her cancer diagnosis, years of chemo and now this. Joan told me how dutiful she was as a patient, never questioning protocols and never missing an appointment. In her mind, she did everything right, so to find out that she was dying came as a complete shock. She never had a conversation with her doctors about this. She never spoke to her family about the possibility of dying and was not prepared for what lay ahead. She looked at me and said, “I just never knew that I was this sick. I would have done things differently had I known. And now it’s too late.” 

Nearly 10 years ago, the National Academy of Medicine (NAM, then called the Institutes of Medicine), released a report called Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. After convening a panel of experts, they concluded that there were six domains that needed to be improved. The first was centered around patient engagement. 

Though the report focused on cancer care, patient engagement is key in improving care for anyone with a serious illness, and there is plenty of research to prove it. A Health Affairs article on the topic described it as this: “Patient engagement is a broader concept that combines patient activation with interventions designed to increase activation and promote positive patient behavior, such as obtaining preventive care or exercising regularly. Patient engagement is one strategy to achieve the "triple aim" of improved health outcomes, better patient care, and lower costs.” In essence, in order for patients to “act” to improve their health, they first must be “engaged” in the process.

What NAM suggests is that all the responsibility for patient engagement and activation is on the clinicians. It is up to them and the providers and health systems to create the policies, processes, and currently non-reimbursable time to do what’s necessary to truly bring patients into their care. Being a seriously ill patient years ago and being engaged in health policy today, I can tell you, this rarely happens. 

This is where I come in. 

What patients need today are independent advocates/coaching/champions to help empower them to take an active role in their healthcare. Someone who is only there for them, supporting what they want and has no other competing interests. (Even family members have competing interests). Teaching them how to navigate the system and ensure their decisions are made through the lens of their goals and values. Coaching through lifestyle changes that they want to achieve to help restore their health and quality of life. Nothing…I mean nothing…exists in our healthcare system like this today, though the efficacy for all is irrefutable.

I often wonder what would have happened, if Joan were given the opportunity to have someone like me supporting her early after her diagnosis. Joan (and the many others I have met like her) is the reason I do this work.