Patient centered care means something different to all
Patient centered healthcare is a term we are hearing more often, and depending on the audience – health professional, policy maker or patient – it appears to have a different meaning. Who is involved in this dialogue and just who are they talking to? If we are ever to achieve true patient centered care, we all need to know what it actually means and all stakeholders need to be working from the same definition.
Health professionals quite naturally want to take care of their patients, but in the current environment of rising costs of healthcare and in the interest of system sustainability, treatment decisions must be a shared responsibility.
I have been living with a particularly severe form of Rheumatoid Arthritis for thirty years. For most of that time accessing appropriate, evidenced-based care has been a challenge and my treatment plans often fell far short of the latest published guidelines. Unable to accept being forced into long term care at the age of thirty nine, I was left with no alternative but to become my own advocate, learning everything I could about RA and ultimately gaining access to treatments that enabled me to continue to function as part of society. If true patient centered care had existed, I wouldn’t have had to expend so much energy fighting, but could have been better spent that time on other activities. I see little evidence to show this has changed despite the acknowledgement from everyone that patient centered care is necessary.
Words are easy, but implementation is proving to be more difficult. The healthcare team that I have managed to assemble over many years and missteps respect the input I provide into my treatment plan. The result is that even though many living with severe Rheumatoid Arthritis are confined to a wheelchair within ten years of diagnosis, thirty years later I am a fully functioning, relatively independent individual who frequently mentors others through their disease process.
If a patient is not part of the decision making process, they will not own the treatment plan and if they do not own the treatment plan they may not follow through with it. Patient centered care also goes beyond the individual and must include patient participation in the processes that decide what that care will look like. Patients need to be included in health policy development, research priority identification and even utilizing experienced patients in the healthcare system as navigators for others who are struggling with their own disease process and diagnosis.
Linda Wilhelm is the President of The Canadian Arthritis Patient Alliance.