Why patient stories actually matter

10 Aug

Most of our medical visits start with some variation of this opening question: “Why are you here today?” Connecting with and understanding patients thus requires doctors to listen to what’s called the patient narrative.  The importance of really hearing this narrative is beautifully described by U.K. physician Dr. Jeff Clark, writing in the British Journal of General PracticeBut the problem, as Dr. Clark reminds his peers, is that patients and doctors see the world in very different ways.  He also warns that the stories patients tell their physicians about why they’re seeking medical care may all too often be seen by doctors as merely a time-wasting distraction from “getting to the bottom of things.

The urge to get to the bottom of things may also help to explain what’s known as “The 18-Second Rule”.
Continue reading

The day I made peace with an errant organ

3 Aug

by Carolyn Thomas  @HeartSisters

Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

For starters, heart attack symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms.(1)  Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a 2013 report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.(2)

So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

And that’s where the real trauma starts.   Continue reading

What women need to know about pregnancy complications and heart disease

27 Jul

 by Carolyn Thomas     @HeartSisters

“I’d love to speak about the patient’s perspective at your Toronto conference in June,” I said last winter in response to an invitation from Dr. Graeme Smith, a Canadian obstetrician who teaches at Queen’s University in Kingston and specializes in high-risk pregnancies. “But travelling halfway across the country is just too hard on me these days.”

As the unofficial poster child for the well-documented link between pregnancy complications and premature cardiovascular disease, I was already very familiar with Dr. Smith’s work.  See also: Pregnancy complications strongly linked to heart disease”

Shortly after I turned down his kind invitation to speak, he invited me again (hey, he’s persistent!) – but this time he offered the irresistible option of speaking to the Toronto audience via teleconference. I asked him:

“Does this mean I can stay in my jammies, drink coffee at my kitchen table, and just speak to your group over the phone?!”

Continue reading

We know we should do ____, but instead we do ____

20 Jul

FinalBrain-1400

by Carolyn Thomas  @HeartSisters

I read this on the side of a Starbucks coffee cup. Seriously. It was written by Harvard psychologist Dr. Daniel Gilbert, who said:

“The fact that we can make disastrous decisions even as we foresee their consequences is the great unsolved mystery of human behaviour.

“When you hold your fate in your hands, why would you ever make a fist?”

Why, indeed?  Sometimes I think of Daniel Gilbert’s words when I make decisions of varying levels of potential disaster even when I know perfectly well that I will most definitely NOT like the consequences of doing so.  Continue reading

“Us” vs “them”: the under-served patient speaks up

13 Jul

by Carolyn Thomas  @HeartSisters

I asked permission to republish this letter written by Erin Gilmer, an American friend who’s living with both multiple health issues and poverty. I’m grateful for Erin’s contribution to an important discussion, as she offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University.  After writing this letter, she was subsequently invited to speak at Medicine X this year.  (Although not well enough to travel to California in person after recovering from spinal surgery, she was thrilled when Medicine X organizers offered to put together an edited recording of her presentation to be shown to both live and online audiences on September 5th. You can watch it here.

“Dear Medicine X Conference organizers,

“Your upcoming healthcare conference forum on under-served populations brings up a concern for me that I hope you will consider in the next few months.  The best way I can explain my concern is through this example:   Continue reading

Patient engagement as described by 31 non-patients

6 Jul

by Carolyn Thomas  @HeartSisters

I was one of the patients interviewed for the recently published Center for Advancing Health 2014 report called Here to Stay: What Health Care Leaders Say About Patient Engagement. It’s an interesting, illuminating and frustrating document to read. 

The late Dr. Jessie Gruman, president and founder of the CFAH, wrote in her forward to this report:

“What are people talking about when they say ‘patient engagement’ anyway?  That phrase encompasses so many concepts and ideas that it’s become meaningless.”

As I said here in 2012, my own concern (as a person who’s pretty darned engaged in my own health care) is not that the phrase is meaningless. It’s more that non-patients, business and industry have co-opted the concept of patient engagement for their own purposes.

And consider also that, even in this impressive 170-page CFAH document that is all about patient engagement, there were only four patients interviewed – compared to 31 clinicians, employers/purchaser representatives, community health leaders, government organizations, health plans, vendors, health care contractors and consultants.
Continue reading

Follow

Get every new post delivered to your Inbox.

Join 3,109 other followers