Friday, August 8, 2014

What is Family Centred Health Care?

If you were to "Google" Family Centred Care or Patient centred care you would see words like "collaboration", "respect", "communication" etc and these are all appropriate adjectives to describe family centred care but the words are meaningless unless there is a real understanding of how to put them into practice and to effectively engage patients and families. It has become clear to me that a gap exists between families who want to participate in their own health care and a health care system who wants to effectively engage their patients.

I have been fortunate to be able to speak to nursing students and health care professionals on a semi-regular basis. I have learned a tremendous amount. As a patient family many times you feel that people are not listening to you or don't care. As I have interacted with health care professionals I have learned how much they truly care and want to engage with their patients. I have seen that they too are frustrated that they cannot make a greater difference in the lives of their patients.

 I read an interesting article recently. (I have attached the link at the bottom of this blog.) The article talks about how patients can better manage their chronic health conditions if they had better access to their health information. Some of the examples are really interesting. The article focuses on some technical advances that gives patients information through an app for their smart phone. That's a great advancement but what the article seems to avoid is the need for more interaction between patient and health care provider. Having an app that provides you information is great but it seems to reinforce the idea that patients do not need to have direct access to their health care providers. This is where the gap in communication between patient and doctor exist. A 5 -10 minute "verbal" conversation between you and your Doctor every 6 months is not effective communication.

Fortunately some of these attitudes are changing. In our own situation, we have developed a great relationship with our Cardiology Clinic (Pediatric)where we get blood test results usually within a day and we can effectively manage our son's anti-rejection med levels, his hemoglobin, and his urea and creatinine. We do this all over the phone and it is really quick and effective. Because we have access to the information and a nurse clinician to speak to, we can make any changes we need to and interact to gain a much better understanding of what is going on. This allows us to live a life with a lot less stress, and more importantly because we have more knowledge we can provide more meaningful feedback when we go for a clinic visit and meet with our cardiologist. This is real patient engagement where we (as parents) and the clinic are both equally engaged.

Unfortunately, the same does not hold true when we interact with Adult Cardiology when discussing my wife's health. Trying to speak to a human to get an answer to a simple question is pure agony. You get voicemail, and if you manage to talk to someone, they won't discuss particulars over the phone because of "privacy" issues. If you get past that, then they are reluctant to answer any question no matter how simple without discussing it with the Doctor. Then there is my favourite response of, "if you feel it is serious; perhaps you should go to your nearest emergency room." The frustrating part of going to the emergency room is that Emergency is not equipped to deal with a complex cardiology patient and you will likely end up waiting for hours just so that you can talk to the person you had previously talked to on the phone. It is a never-ending cycle of futility.

It was refreshing to hear a nephrologist speak a few months ago about how she believes it is now becoming a standard of care to be more accessible to patients. She shared how she gives her patients her cell number and her email address. It was so refreshing to hear a specialist advocating for this level of access. She explained that when she first started handing out this information, she was nervous about doing so; fearing she would be inundated. In reality, the volume of requests from patients was very manageable and in many ways made her job easier. Clinic visits became more effective as patients felt much more comfortable and open. It was a win-win. It is really encouraging to hear about the health care system being more open about communication and technological advancements to help provide patients with more information. I just wish someone would mention this to Adult Cardiology.

The reality is effective family centred care and patient engagement are all about "effective" communication and openness. Very big words that are not always understood.

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