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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.

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8 comments

  1. Denis Labelle, DHA

    Patient-centered care values shared decision – making models. Patients expect clear and implicit articulation of diagnosis, prognosis, and treatment options. Improved communication, confidence, and eventually satisfaction with the provider improve patient compliance with treatments, recommandations, and observance of appointments.
    Shared decision-making increases patient knowledge, interaction between patient and provider, and improves patient satisfaction. Empowerment of patients is critical and patients engaged and involved in their care can profoundly affect the health care system.

  2. Byrna Armstrong

    Dear Linda:
    As a person living with severe Ra for 35 years thank you for this article. I pray that the powers to be would take it to heart and really do what is needed for patient centred healthcare. There is often much talk and busy-ness on the part of health care professionals but nothing really productive is getting done. I completely understand when you wrote about expending all your energy fighting for yourself, I too have had to do this through out my life. What concerns me is some people are not able and do not have the energy to fight for themselves. However, if they are included and take ownership in their health care they become empowered if even to a small degree, and this is a good thing. I agree that patients need to be involved in the development of health policies, research priority identification and using experienced patients within the healthcare system as navigators for others. This to me is the crux of the matter for me, if I cannot help someone else because of what I have learned from having RA what good can come out of it for myself and others.

    At this point I do want to say that I have received good health care throughout my life with RA but it has not been without a long fight and is many times inconsistent with my needs even though I am good at voicing my needs.

    Byrna Armstrong

    • Linda Wilhelm

      Hi Byrna
      I’m glad you are doing well. We need more people involved with CAPA and I invite you to become a member as well as like our Facebook page! We have been working to improve life for all of us for many years.

  3. Judy Glennie

    Dear Linda – Many thanks for your thoughtful contribution to Healthy Debate. As you note, there many aspects of the system where the patient perspective would provide valuable insights for system improvement, let alone the right of every patients to drive their own care. The research and policy environment is a particularly tough “nut to crack”, notwithstanding great strides by pCODR in helping to move the bar on patient input into HTA processes. Efforts in the EU and the US are certainly areas where Canadian policy makers can and should look for good examples of patient engagement in regulatory, HTA and research (e.g., PCORI). Best regards, Judy

  4. John Coderre

    Having just had my first hip replacement due to OA, I have become even more aware how important the patient is in the doctor-patient equation. The main responsibility of the patient is to get the right information about how to prepare for surgery and what to do, and not do, during the post-op recovery. Most of the larger centres have prepared a booklet on all aspects of joint replacement surgery – what equipment needed to make one’s home ready, what to expect the day of surgery and the days immediately following, a full description of the exercises to do each week after surgery, and a list of restrictions. These resources can now also be found on line.
    I have spoken to a number of friends whose surgery and recovery has not gone as well as they expected or wanted, but in some of these case, they have also admitted that they didn’t do their exercises as often as recommended, either because it was too painful, or because they felt them unnecessary. Others went back to work and resumed normal activities well before the six week checkup, and wondered why their prosthesis had dislocated or, even worse, moved. One person decided to drive himself to work, had a minor accident, set back his recovery and was dismayed to find out his insurance coverage was voided because he drove before cleared by his surgeon.
    Because I chose to wait to have my surgery at a major centre, I waited 14 months to see the surgeon the first time. Because my hip has failed acutely, he expedited my surgery, and operated within two months of my first appointment with him. But the real advantage to being in a major centre was the easy access to all the information I required to play my part in my own recovery. Many now,in an attempt to shorten their wait times, arrange to have their surgery in one of the smaller centres (in Ontario) that now offer joint replacement surgery . I fear that in doing so, many fail to obtain the information so necessary for them to become the informed consumer they must be to ensure they take an active part in their recovery.

  5. Denis Morrice

    Linda, very well stated. With the changes that are going on in healthcare it has never been more important for patients and patient groups to be at the decision making table. Let’s hope the decision makers begin to follow the simple principle: “those affected by a decision should be involved in making that decision”.
    You are a true inspiration.

  6. Robert Bear

    Thank you for this heartfelt public comment on the need for more patient-centredness in healthcare. As a student of the PCC movement, particularly as it relates to chronic dialysis care, I am struck by the following paradox: patients with the most serious chronic diseases often experience the least patient-centred care in the system. Thankfully, this is changing, as PCC advocates and experts increasingly focus on how best to use widely available tools and tactics to enhance patient engagement and patient self-management.

  7. Eric Gombrich

    “The System” is inherently structured to not be patient-centered, but to be provider / organizationally centered. Start with an extreme; with a perfectly performing, patient (or person)-centric system, we wouldn’t ne doctors and hospitals. An unrealistic panacea, I give you. But if you start an analysis / dialogue from that premise, you will immediately see that for pure purposes of survival, hospitals, doctors, pharma, etc. are inherently at odds with this. They need to be if they wish to feed their families, create jobs, etc.

    Moving away from the unrealistic to the realistic, this takes on the form of the MD, hospital, etc. doing all they can with their own self-interests in mind first. And I don’t fault them for this. It is, imo, a universal truth that all entities (people, animals, or organizations) must be ego-centric for simple survival.

    But we’ve now created a system whereby survival of the hospital, MD, etc. is based on them ‘doing things to the patient.’ As such, that is what they will always steer the patient towards, regardless of the patient’s interests, concerns, beliefs, etc. If I’m a hospital and you walk thru my doors (or even before hand), I need to convince you need a service I offer, or I go out of business. This is at complete odds with putting the patient first.

    Now we see the ‘move to the middle’ by providers and institutions in the context of ‘shared’ decision making. I see this as an attempt by organizations and providers to ‘hang on’ to semblance of control. But, again imo, truly patient (or people)-centered means acknowledging and accepting that the patient is really the ultimate decision maker, and that as such, an institution, provider, system is best served structuring itself around this reality. As support for this, I contend that it doesn’t really matter what the hospital, doctor, etc. tells me to do in a ‘shared’ context, if I choose not to do it (take my Rx, book a follow-up, get a procedure, change what I eat, etc.), I am in control.

    The way to begin to fix this is with a changed remuneration model for doctors, hospitals, etc. They provide an incredibly valuable service. We need to pay them to do so, whether or not I as an individual personally decide to follow their advice. This is all about payment reform. And yes, that does encompass liability / tort reform in medicine as well.

    And yes, I am an advocate for outcomes based remuneration, or pay for performance. I think getting that established properly will allow providers, hospitals, etc. to truly listen to the patient (person), and provide the best advice they can to them based solely on the patient’s interests.

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