We know that patients do better when they are involved in their care. So why isn't it happening?
I have been thinking a lot about a story written a couple of months ago (Taking patient-centered care from rhetoric to reality, July 22, 2016) by Toronto Globe and Mail newspaper’s André Picard, health columnist extraordinaire.
Picard writes about what it means to have care that focuses on the patient. He cites, “partnership, sharing of information, exchange of opinions and mutual respect” as the building blocks for an effective patient-centered care model. These are complex ideas, he acknowledges, that can only be brought to fruition through a “compromise that respects medical responsibility and patient autonomy.”
He quotes a friend of mine, Judith John, who is no stranger to health care system. Living with an inoperable brain tumor for 16 years, John has become an expert on the patient experience and a committed patient advocate. She has a deep understanding of the flaws in patient care, and she doesn’t hesitate to point them out. One such flaw, she says, is the focus on metrics, which not only overshadows the importance of relationships and communications, but also fails to recognize the patient as a person.
As a patient and the founder of a group for people living with a rare leukemia, I have seen time and time again instances in which health outcomes are vastly improved when a patient is allowed to play a greater role in their care. In my experience, patients who are treated respectfully by their health care team, who feel free to question treatment options without judgement, and whose providers take the time to educate them about their health, are the same patients who are more likely to share side effect challenges earlier, seek help for emotional struggles and take their medications the right way.
Many patients and caregivers do best as the “hub” in a “wheel-like” model, which places them in the middle, surrounded by “spokes” that reach out to a solid circle of support, services and specialists. For many people living with cancer, their “spokes” connect to their oncologist, and other specialists, but should also be connected to a myriad of other things that help to ensure the best possible patient and caregiver experience and health outcome. These may include patient groups, nutritional/dietary support, psychological counselling, spiritual care, emotional wellness programs, etc. Ideally, the “spokes” are more than just connectors, but also solid lines of communication that feed back and forth. And if I were to dream really big, each of the points on the wheel would also communicate with each other, so the patient’s needs were always addressed as holistically as possible.
But while it is easy for patients to put together a long list of what their doctor should do for them, it is critical not to forget that health care providers have a wish list of their own. The clinicians I know wish another eight hours could be added to each day so they can spend more time with their patients. They dream of more dollars to do their research, and imagine a world in which patients didn’t die because they couldn’t afford their medication.
For these health care providers, an “ideal” patient is one who is educated about their illness, yet willing to listen to and trust the direction of their care team. They may consult the Internet, but use their doctor’s knowledge as a tool to ultimately decide what’s truth and what’s not. They manage their health, keeping records of medications and procedures and communicating changes with all “service providers” (GP, pharmacists, specialists, etc.) so they receive the most appropriate care. And they are proactive, seeking social support through community resources and patient groups.
So yes, a successful, effective patient-centered care model will require compromise for patients and health care providers. But we can’t stop there. For such a model to thrive, it needs to live in a system that supports and promotes patient care.
Hopefully all the talk about patient-centered care is a whole lot more than just talk. There needs to be some action. Patients are depending on it.
Lisa Machado is the founder of the Canadian CML Network, a national organization dedicated to supporting patients and caregivers living with Chronic Myelogenous Leukemia. She is also the author of the award-winning, Living Well with CML: what you need to know to live your best life with Chronic Myelogenous Leukemia. Order your copy at firstname.lastname@example.org