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.

Aging and Pain Pills: Julie's Viewpoint

Pain medication is a big issue for those with chronic disease. Julie a US member of our support group has some complaints, based on her experience:

"Someone who doesn't know what real pain is has made the rules.  They are more worried about drug addicts than patients in pain.  It is difficult to find a doctor who will prescribe pain pills and they keep close tabs on the number of pills a person can have.

They were trying to stop the "pill mills" where controlled drugs were being sold to addicts and they closed down several "pill mills" in Houston.   BUT - at what cost to people who really need pain relief?

Now, it is very difficult to get pain medication.  If a person goes to a Pain Clinic, they make a
the person fill out pages of forms - some forcing a promise that they will absolutely not get pain medication from any other doctor or place.  There is also a page telling people to be very careful with their pain medication because if a person would accidentally lose or somehow destroy the pills (by dropping them on the floor or in water etc.)  they will NOT be replaced.

A drawback of the Pain Clinic model is that patients have an extra appointment every month for testing and to get another prescription for more medication.  A Big Hassle! and even harder on the elderly and the poor.

My Internist prescribes the lowest number of pills (Hydrocodone) at the lowest dose for me.  He doesn't really want to do that and he said he only has 2 patients where he will write a controlled drug prescription.  He said he only does it for me because I am a long-time patient, he knows that I suffer from RA and that I am really in pain. I am hopeful that he will keep doing that as I don't want the hassle of having to go to a pain clinic every month, now that I am 80.

Pets can help people deal with pain

The insurance companies keep tabs on what and when and how much a person can receive and they won't let any controlled medication be filled early - it can be filled 3 days before a person has their last pill. (So if you need pain pills forget that vacation)  This is what my pharmacy told me.  Other pharmacies might have different policies.  I do know my doctor will not re-fill a prescription before 30 or 90 days are up depending on the medication.  The prescription has to be on a green prescription paper with all of the doctors drug numbers on it and it has to be taken to the pharmacy in person and handed to the pharmacist.  It can not be telephoned in or re-filled any other way.

Many of the Pain Clinics will make people try other methods to ease their pain before they will prescribe medication.  This situation really isn't fair to sick people. Obviously it will help some people to cope with their pain using less medication over time, but we all know that "One size fits all" is a fantasy"

It also makes you wonder why insurance companies have taken on an enforcer role in the war on drugs. I get the feeling that they feel more able to take care of my health than my doctor can and I feel that is wrong.

Most of these are going back to the drugstore - wrong strength, now off the market and inferior generic

Patient Relations

Here's the background on the Patient Relations offices you may have noticed in hospitals in Canada:

“A well‐established patient relations structure and process, supported by the right personnel, is key to identifying gaps between patient expectations and experiences of care, and managing perceptions of patient expectations and quality of care.” From Excellent Care For All Act

To strengthen patient relations processes in Ontario’s hospitals... they are required to have patient relations processes in place and make information on these processes available to the public. Regulation 188/15 adds to these requirements; specifying minimum standards regarding the retention of data, providing standards for keeping patients or complainants informed, and ensuring that hospitals have a specific patient relations process.1

I was lucky enough to attend a conference where many patient relations professionals were sharing information about their work.

Some had inspiring examples of meaningful engagement with patients and family caregivers, where they were regularly collaborating with them on projects and acting on patient ideas and input. 

Many talked about plans to start involving patients in their hospitals but had not yet started to work on it. In some cases they were very busy just keeping up with their everyday work. In other cases senior management (or other staff) was not behind their efforts.

They presented lovely charts and graphs to their peers showing the types of patient issues they had to deal with, and how quickly they were able to resolve problems were presented. But... after hearing my friend's story about a patient issue that she wanted to have looked into, I wondered how they define resolution. When she asked her hospital contact for a progress report on her complaint she was told her case was closed, though she had no word of any results or consequences.

Patient Relations can't help this 'patient'

Despite sincere talk of being patient centered, there were a few comments I heard that sounded tone deaf like these two:

We'll "give" you (ie patients) decision making authority as long as it's a consensus.

And the idea of staff deciding "What is it that you want these people to say?" in the area of changing the conversation in making films for internal staff training makes sense in one way, but can also be interpreted just the way it sounds.

On one occasion I tried to compliment the hospital on a positive change but my call was not returned. The only time I made a complaint, about an issue that cost me an extra year on a waiting list, I was unhappy with the result. 

Patient experience is recognized as a method people use to determine the quality of their care, and the feedback that patient relations offices get reflects the experience. The insight it gives can help to drive change and quality improvement. 

I learned just last month that Accreditation Canada has made Patient and Family Centered Care a key standard starting in 2016. The presentation I heard at their workshop was impressive and their resolve was unmistakable.

The big difference, and you may have seen signs of this already, is that instead of doing things 'for' and 'to' patients, they will now focus on doing things 'with' patients. That means we'll see more information sharing, partnership, participation and collaboration.

If you're a patient who thinks things could be better in health care there's no better time to try get involved personally. The door is opening up for us as patients, or as family caregivers to make a difference.


1. From Health Quality Ontario Striving For Excellence in Patient Relations Processes in Ontario's Hospitals

New Experience: Blogging With an Editor

Last month's guest post  for GeriLynn Baumblatt of Emmi Solutions was a different experience of blogging for me. Her topic for Health Literacy Month was Health Care Transitions and it took a lot of thought to find something in my health experience that qualified as a transition.

After I submitted the idea and we discussed the first draft I felt reassured by working with Geri Lynn to fine tune the post. Usually my husband and I are the only critics.

And I'm wondering, though I only have to ask, about the etiquette of being a guest blogger and whether I can post the blog here too.

Possibly not so I present the link to the post here.   The Title is "Graduating From Patient School: Health Literacy and Care Transitions" and is the story of how the naive patient I was at the before my diagnosis turned into the aware patient I am today.

The graphic she used was apt: How do we turn on the light bulb and change?

It took so many years to make that change - maybe if more information like what we access without a thought now, had been available then, the process would have been faster.

The post was part of a series about Health Literacy and covered many types of transitions. You can see the rest of the stories here.

PS to readers: I love the picture of the girl and the giant pill and am guilty of using it again this week to make a point.

Where's my Prescription Summary, Shoppers Drug Mart?

When I first saw the new Shopper's Drug Mart prescription receipt I did not understand what I was seeing. It changed to a label the size of a name tag with the backing still on it. I could peel it off but then what would I do? Maybe the idea is that I start a prescription scrapbook? 

I mentioned the difficulty I anticipated trying to save these slippery labels with 5 point type for my income taxes and my pharmacist said that I could ask for a list of the dollar value of my prescriptions every year for income tax purposes. That's a service that can help me, BUT I still need and want the listing of my last 20 prescriptions.

For me that list has been an essential tool. With it I can accurately give details of my medications to doctors. I also use it to list medications on forms at the hospital and in the Emergency Department. On Twitter yesterday some doctors said they also use those lists to go over medications with their patients, especially those who don't really know the medications they're taking.

Yet now that feature has been withdrawn with no notice, and no concern for patients, caregivers, doctors and customers.

Burden of care is added to by having no list.

When I look at the Loblaws Corporate website I see Chairman Galen Weston saying "We understand the breadth of our impact and influence." I appreciate that sentiment but wonder how many doctors and patients were consulted about this change that has a fundamental effect on my ability to manage my drugs and prescriptions.

I like the idea of the patient, family doctor and pharmacist as the basic unit for regular health management and decision making. But now, at the same time as Shoppers takes on more health services such as flu shots and Med Checks for profit, they are stepping back from the patient's needs.

My pharmacist responded to the problems I raised with:
"We all change and we expect our customers to change too." 
"You have to manage by yourself somehow." 
"Our expectation is that the patient will keep track of their medications."

Excuse me Shoppers, I am a highly literate patient and that is just one of the areas where I have challenges. Luckily at this moment I am not in a crisis but many of your clients are struggling with their health. Many of us stagger from crisis to crisis.

What about our aging population, people with low vision (Did I mention the 5 point type on the receipt?), and the more than half of Canada's population who are not health literate? 

Another statement on the Loblaw's website (Loblaw's owns Shoppers) is this:  "Our strong commitment to corporate social responsibility defines the way we do business and the role we play in society."

These statements do not match the Shopper's Drug Mart withdrawal of their useful and traditional prescription lists. 

I hope they will look for a solution to this problem which is either happening to us now, or will soon be apparent at a Drugstore near you if you are a Shopper's Drug Mart customer.

This is the top section of the form we will no longer be receiving.


Added after another visit to Shoppers: The pharmacist was able to produce a list for me on two full sheets of letter size paper that covered fewer prescriptions than the small summary of 20 that I am used to. Not convenient for me to carry and keep with me but at least I can use it for renewals. Not a solution, but as a stopgap it will help, though it required a lengthy conversation with the pharmacist before I was able to get that printout.