Pain: What About Patient Centered Care?

This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.

In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.

The plan for another type of pain relief did not work very well at all. I was given a prescription for a different type of pain pill and told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?

perfect pain killer?

If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.

Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the burden of disease. I wonder if he might think of a better way?

Burden of disease is crushing

I was about to delete this blog post until I ran it by a few friends. 

This is what Lucy thought: 

"I don't know what it is with pain medication but I think they think we are all addicts. When I had my knee replaced I had to fight for more pain medication in the hospital and then when I went home they gave me barely enough to last two weeks. Thank goodness my doctor agreed to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he didn't have a GP to go to for help. 

I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."

And Joanne agreed to an extent:

"I agree with you on the pain pills and with Lucy's comments. The drugs they give us going out of the hospital are completely inadequate both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't know the equivalence but after the hip experience, I asked my GP for a prescription in advance of hand surgery and had plenty of pills. Even that didn't get rid of the pain entirely. 

The fact that my pills had acetaminophen in them was also an issue because it would have taken me above my daily limit. If I have any more surgeries, I will request drugs in advance from my GP. From 3 surgeries, it doesn't seem to me that the hospitals will bend on this issue. I hope your pain begins to subside soon."

Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!

When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the previous post about the difficulty of getting pain relief with chronic pain.

Who Educates Patients? Day 5, Wildcard 3

When I first got access to the internet and started to search for knowledge about my rheumatoid arthritis (RA) I used to read the CME (Continuing Medical Education) courses that were available online for doctors. Those courses were great ways to learn. Any words I was unfamiliar with I soon picked up through googling definitions.

When I found one written by my own doctor I was pleased to have an insight into the way he thought about treatment. It helped to know that he was fully aware of the recent research in the field, and did not reject it. 

Eventually that rich field of CMEs dried up, in part because they were sponsored by pharma, and the medical profession became more aware of the appearance of conflict.

My primary care doctor has many ways to learn more - journals, communications from the health care system, colleagues, conferences and through taking courses during the year. Specialists have even more avenues. Many work in academic institutions with medical libraries and good access to medical journals.

                          Might be an interesting journal 

Patients who want to read original research papers quickly find that pay walls stand in their way, even if the research was funded through our taxes. (Definition of paywall: System that prevents internet users from accessing webpage content without payment.)

This is what a paywall looks like (Elsevier)

How does patient centered care fit into this picture? This is the new phrase used to describe the more modern approach to health.

Patient centeredness is defined as:

Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. ²

Do many patients reading this feel that their education about health choices can be adequately covered in a 10 to 12 minute appointment? Possibly yes for a simple sore throat, but I doubt many of us rush to the doctor or clinic for minor problems that seem familiar to us.

To use information that we find online, we non-professional users of information are thought of as vulnerable patients who need guidance from professionals, and yet the professionals don't have time to guide us, even assuming that they are familiar enough with online information sources to help patients find their way to the best online information. Social media is not yet a skill that is common in the doctor's offices I am sitting in.

I think many patients do a great job of learning from one another and of using their intelligence to work their way through complex problems while they gain health and digital literacy. That is a skill though, and to suddenly learn all that you need to know when you are also sick and dealing with the very complex balancing act that is your life with illness is hard to do.

To get to the point: Patients need ways to learn. The health care system is not simple and a lot of people could make good headway in learning if they had a little push in the right direction and some encouragement.

Chronic disease patients are pushed to the forefront in this. They've had a long time to learn and observe the realities of care. With chronic disease it's a lot like Groundhog Day, the movie. Every day you wake up and the problems present themselves, and everyday you need to deal with them. You get used to it, and then go on to share what you've learned with other patients.

This is the logo from Rheumatoid Awareness Day. No surprise it is a groundhog

What I'm calling for is better access to information, online learning for patients in a coherent course of study, and  conferences so that we can learn, hear new ideas, make connections and be able to join the team in healthcare. We're the largest stakeholders and we should have input into the decisions that affect us!

Not to mention that the money comes from us too - the patients and the public.

Empty wallet

As ePatient Dave says so often, "Nothing about us, without us."