It's Hard To Teach Empathy

Everything is changing in medicine, more now than ever, and change is hard. New technology is not always welcomed by people who have to use it, new research comes out so fast it is impossible to keep up, methods of payment are tedious to say the least in some countries, and now patients are changing too. These new patients want to be involved in their own care and are trying to equip themselves to do it. 

Change can be good

It's hard for all of us to do this. To help us I like this unofficial slogan of the Marines  "Adapt. Improvise. Overcome." We can use it for ePatient Boot Camp.

ePatient

The "E" s I propose for health care professionals are these:

Encourage, Empathize, Educate, Engage

Some examples of situations where the above qualities were not evident follow below. These situations are hopefully few and far between but always hard to forget.

My wonderful friend has a health problem that takes a lot of self care, doctor visits and treatment. 

She has found a great medical team which works with her and often her doctors have Fellows training with them. If she is feeling good enough the doctor will direct the Fellow to examine her as a learning experience for him or her.

Recently a Fellow, after examining her and looking at the chart, described her condition as stable.  Her response: "Don't you be saying that about me," and she proceeded to lecture him about the profound changes that her illness has had on her life and how much she has had to adapt, even to the extent of moving from a two-story house to a bungalow.  

She said "It's hard to have your life upended. I've had six esophageal spasms since I was here last not to even mention other symptoms. This is not stable"  Her doctor came in at the tail end and said, "Aah, I see he described you as stable."

Here's a snapshot of a moment with a specialist who I see. He was teaching a group of students and talking about the effects of wrist fusion. He said to the students "Don't worry about personal care. They'll figure it out." 

I told my "unstable" friend the story and she said "That's obscene" How little effort it would take to tell these future surgeons this instead: "Some patients may worry about personal care. You could suggest they talk to an occupational therapist if it continues to be a problem."

Her friend Terri who lives in a small town went to see her rheumatologist. He was sitting in a very relaxed way at his desk, with his hands behind his head. She offered him some pamphlets about Sjogren's Syndrome. He stood up, said "Wait a minute" and walked over to his diploma on the wall. He tapped it and then said "Who's the doctor here?"

My favourite doctor says the hardest thing to teach is empathy. Perhaps more patient involvement in medical education would be helpful. Maybe learning first hand through narrative medicine about the Burden of Treatment (by Dr Victor Montori) for patients would help some professionals to take this step.

Burden of Treatment

Article: Clinical Empathy as Emotional Labor in the Physician-Patient Relationship

Going Fast, From a Store Near You

As you go through your life with a chronic disease you find that there are many ways to treat your symptoms. It takes time to work your way through them by trial and error and find out what has the best effects for you.

Once you have a routine and favoured products it is very difficult to find replacements for your tried and true over the counter or  therapeutic health and beauty products. You really depend on them, more than if it were just shampoo or soap.

Behind the 8 Ball for product availability

Oilatum was a good bath oil but it is no longer manufactured. The pharmacist I asked advised the use of Baby Oil but it just sits on top of the water and coats the bathtub, not me.

I use Oral Balance Mouth Gel everyday and also Biotene tooth paste. I've gone to stores hoping to find old stock with no success. You can read about recent changes to these products on Julia's Reasonably Well blog. In my opinion the enzymes were the active part of the mouth gel and taking xylitol out of the toothpaste and adding saccharine85 sounds like folly. At Sjogren's conferences in the past leading specialists in Sjogren's and dry mouth talk about the benefits of xylitol.

Biotene tooth paste

Even my eye drops, Bion Tears seem to have disappeared. (update: I found a box and have reports of more so there's hope for this one)

Those are all things I use for Sjogren's Syndrome. It's tough enough to have health problems without losing your products. Also the new generic for the prescribed medication I take (Salagen) is terrible. The delivery mechanism is not at all like the original brand name product. The required approval process must not have tested it on users, just naive members of the general public. That's the only way I can imagine that it passed the tests as having the same bioavailability.

Salagen

Even my Rx face cream is impossible to get. Retin A is almost generic. How can it be that no one makes it anymore? The pharmacist said Retin A was on back order and they couldn't get it.  If it's gone forever I'll be like Dorian Grey becoming his picture - probably will age 10 years overnight. 

My friend says "What's up? I am having trouble finding injectable B12, injectable iron, and now, K-lyte potassium tablets (fizzy orange tabs for water) are on back order".

Maybe some of this occurs because so many small companies are being bought up to lessen the competition, then the buyers dump the less profitable brands.  So while stock in companies like Valeant goes up like a balloon, we are probably losing a lot of specialized products.

I'm getting steamed up about all these things disappearing. No more Pears soap to be found anymore. I'm starting to worry about my Neutrogena soap. It's always practically hidden at the pharmacy in the bottom corner of the shelf behind a dump bin display.

This post does not even mention the drugs that we can no longer find readily. The FDA and HealthCanada post these shortages but do nothing to ensure supplies of these drugs which require high manufacturing standards or have become cheap generics.

It's all about the money. Has more and more specialized and pin-point marketing replaced product availability?

Engaging with Surgeons

After years of enduring lengthy waits to see my orthopedic surgeon, almost to the extent of needing two books plus sudoku and lunch to keep me occupied, I got a nice surprise this week.  

After I checked in for my appointment, the request for x-ray was sent electronically. Images of my feet and ankle were needed and the tech actually asked me which ones should be done. Having this input made me feel that my informed choice mattered more than in past years where the order went in and no one asked me any questions. 

X-ray machine

I returned to the check-in desk and waited only 15 minutes. 
The secretary who is usually monumentally inaccessible was available and pleasant. For this doctor the time required was a speed record - under two hours.

But this story is not about hospital process improvements. It's about how much my experience has changed through becoming an engaged and educated patient.

I hardly had a chance to get bored in the exam room before a Fellow came in (a fully trained surgeon but not permanent staff)  He was very pleasant and asked about what hurt. He warned me he was very good at finding the most painful spots (true). After looking at my feet and poking at the appropriate areas we talked about my ankle which he said looked only a little worse than on an old x-ray. It turns out the new pain is from the subtalar joint - one of the necessary but not well known joints which is below the ankle.

RA in foot

He went away and came back with my doctor and another surgeon who seemed to be visiting. All three looked at the two xrays (this week vs 2008) and my foot with keen interest and then called the resident to come in and tell them what he was able to learn from the image.

So now there are 4 surgeons in the room. The resident got the findings right and picked out the bad joint. Since each foot had had past surgeries the doctor gave a mini-lecture about the methods used then and now. Then another surgeon joined the crowd. They agreed it was end stage (Stage 4*) rheumatoid arthritis in the foot and a fine example of deterioration from a teaching point of view, seldom seen now with better treatments to prevent damage.

They said my foot looked better from the back than they would expect, and wondered how far I could walk, did I have orthotics, and said an ankle foot orthotic (AFO) brace  might help. I showed them my very helpful brace and the Dr said they could inject cortisone into the joint if I wanted, but would be hard to do since there is now so little joint space

Then they had a spirited discussion about what kind of surgery would be the best choice and seemed to agree that the one I have been ducking for the past 8 years was the one for me. A triple arthrodesis. Did I want it in 6 months or a year? So much for wait times.

So I said that it didn't hurt enough yet to go ahead.  The doctor incredulously said "Five surgeon's opinions here and you're saying no?" 

These days I really feel that I am a full participant in my appointments. Knowing the terminology and what the results of surgery are likely to be I can contribute to the discussion. Fifteen years ago I would have freaked out about the "end stage" and certainly a  lot of what they said would have gone right over my head.

This appointment was actually very enjoyable and a great learning experience. Despite what sounds like grim findings I feel almost the same as last year and now when I do go ahead with the surgery I won't worry about a second opinion! 

Being an educated and engaged patient is so much more interesting than being the passive recipient of treatment advice.

A good looking foot (nice bones)

* If you are really interested in how to characterize the stages of joint destruction in Rheumatoid Disease here is a link to an NIH article and the basics listed there.

- Stage I:
- represents synovitis:
- synovial membrane becomes hyperemic and edematous with foci of infiltrating small lymphocytes;
- joint effusions w/ high cell count (5,000 to 60,000 per mm3)
- x-rays will as yet show no destructive changes, but soft tissue swelling or osteoporosis may be seen;

- Stage II:
- inflamed synovial tissue now proliferates & begins to grow into joint cavity across articular cartilage, which it gradually destroys;
-narrowing of joint due to loss of articular cartilage;

- Stage III:
- pannus of synovium;
- eroded articular cartilage & exposed sub-chondral bone;
- x-rays will show extensive cartilage loss, erosions around the margins of joint, and deformities may have become apparent;

- Stage IV:
- end stage disease;
- inflammatory process is subsiding;
- fibrous or bony ankylosing of joint will end its functional life;
- subcutaneous nodules associated w/ severe disease

---

Stage 4 rheumatoid arthritis is the end stage of the disease. The inflammatory process begins to die down, the joint becomes less functional and may become totally immobile.
There are also some patients who've had rheumatoid arthritis for a long time and have had their joints badly damaged over the years. These patients, who may now have low levels of inflammation, are sometimes referred to as being in "end-stage" rheumatoid arthritis. (Note that end-stage rheumatoid arthritis is not a terminal disease; it's just an advanced stage that not everyone develops.)

Do You Have a Health or Patient Advocate?

This is the blog for #hcsmca chat being held on Wednesday February 12, 2014 at 1:00pm est. You can see the post at the #hcsmca site . Natrice (@NatriceR) and I are co-moderators. 

By Annette McKinnon and Natrice Rese

We used the discussion from the January 22, 2014 #hcsmca chat with Christine Spencer and Emily Nicholas (@Emily_Nicholas8) from @PatientsCanada as our starting point. That chat concerned the risks and benefits of patients sharing their stories online. We talked about the power and value of the patient narrative.  

After the chat, we (Natrice and I)wondered: Why did the recognized value of the patient narrative not translate into patient influence in healthcare?

• The patient narrative is informed by patient experience.
• If the patient story is so powerful why do patients still have no voice?

We started to think about Ann Landers and moved on to the way bloggers are a lot like newspaper advice columnists, but for very specialized audiences. This led to a series of questions that helped us find our topic.

1. Who or what do patients and caregivers use to find out what they need to know, beyond the basics of the diagnosis, to help them figure out the intricacies of healthcare in chronic disease, aging, serious illness, dying, etc.?

2. We say patients and caregivers need an Ann Landers. Who do we/you choose to fulfill this function?

3 A patient navigator may be ideal as a co-captain or designated decision maker of your team? (An ePatient wants to collaborate so we chose the term "co-captain.")

4. How do patient navigators get recognition, and hence inclusion? How can patient navigators best support their family member?

5. With respect to patient voice: Why does it feel like them vs us when we attempt to learn the ropes? Where is (or how do we empower) our personal Ann Landers today?

6. Kingston General Hospital has a patient committee giving valuable input to every aspect of patient care - Is this happening in other hospitals and facilities?

 Here are two articles that inspired us:

Advocacy For Parents/Ontario Seniors by Jennifer A. Jilks (@jennjilks)

On Breaking One's Neck by Arnold Relman

Re: On Breaking One's Neck 

Arnold Relman, a 92 year old surgeon, had 3 doctors and 3 lawyers in his family. Despite having a whole team of advocates and good access since he was the ultimate "insider", Arnold still had issues and needed advocates.

Excerpt

"What is important is that someone who knows the patient oversees their care, ensures that the many specialized services work together in the patient’s interest, and that the patient [or their advocate *] is kept fully involved and informed."
We added the phrase "or their advocate"

So for February 12th's #hcsmca chat we propose the following topics about the importance of patient narrative.

1.  What is your definition of a patient advocate?

2. Can you share an example of the benefits of having an advocate ?

3. How have social media groups like #hcsmca changed  the patient experience ?

Read the transcript of the chat. (added Feb 12)

A Day In the Life

The members of the support group I've been in for ten years were thinking about Rheumatoid Awareness Day which occurred this week. In talking about A Day in their Lives with chronic disease some memorable comments came up.

Rosie says "One that you can't avoid considering is the extra diseases we have to deal with. Sometimes I wonder whether it matters if the fatigue is caused by my RA, Sjogren's or Fibromyalgia. This morning my eyes felt like they were sticking to my eyelids. Eye drops help but not enough."

Julie says "I know the first thing on my list is stretching/exercising my feet (so I don't get that awful plantar fasciitis) and trying to stand up, move and get my house coat on.

Then, I get in my Chair/stair lift that takes me downstairs.  I could go on from there and maybe I will do that.  I also use a knife to open up those "easy-open" tabs on milk cartons, etc." 

Lily says "I have a pill bottle opener that looks like this one.

My friend Ali bought it for me years ago and I use it every day."

I have asked my pharmacy to make sure that they put my medication into containers that are easy to open.  If it's child-proof, that's the same as RD proof for some of us.

Patti talked about bottles of all kinds "Some bottles I have found incredibly hard to squeeze, so I avoid buying them; some plastics are just too hard to squeeze. Like honey,mayonnaise,mustard, shampoo. I would also wish for RA to be more widely known about and understood, rather than people thinking you just have the odd achy joint."

She also mentions the problem of being stranded in snow and unable to shovel your way to your mailbox, another expense you don't need on a limited income.  She had to have a special car ignition key turner made because she could no longer use the regular key after her fingers got bad. She carries a rubber pad in her purse in case she needs to turn a doorknob.

I think Patti's rubber pad is a rubber circle like this to help with grip. (Canadian version)

The new cars with push button ignitions are much easier to start. It's so simple to get in the car and drive.

Also on the plus side Lily really enjoys being able to take as long as she needs to get ready in the morning. "One thing RA/RD has given me is the gift of time." (at a cost of course)

I'd agree that RA has given me a lot too. My life is not what I expected it to be; that's so common with or without chronic disease. 

After I retired I wanted to be able to volunteer in health care especially connected to RD. My wish came true in spades and even though I miss my clients and staff members, I have found my virtual life very exciting. It's quite possible to make your virtual life and your real meet up.

Still I do agree with what @angryblacklady tweeted one day. "Twitter is for introverts" And It was interesting watching the #MedX hangout a few weeks ago. Most the panelists said they were not outgoing so here's hoping when I'm at MedX this year I'll fit in. Though  fitting in at MedX is different from fitting in at most conferences.