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“I rang the bell again. No one came.”

22 Feb

by Carolyn Thomas    @HeartSisters

There are a number of big issues that leaped out at me about the hospital story you’re about to read.  Let’s see how many of them you observe, too – and how many could have been prevented.  This story is told by Ann, an Australian heart patient whose cardiac journey began in 2007 when she was 51 years old. But over the years since then, she has continued to suffer debilitating cardiac symptoms almost every day.

Her symptoms include not just chest pain, but pain throughout her upper back, jaw, shoulder, neck or arm, occasionally with severe shortness of breath. Despite taking a fistful of daily heart meds and wearing a nitro patch to help manage pain, Ann is rarely able to sleep through an entire night without being awoken by these symptoms. And here’s why . . .
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Should you bring that list of questions to your doctor?

11 Jan

by Carolyn Thomas  ♥  @HeartSisters

In a recent essay published in the New England Journal of Medicine, Dr. Suzanne Koven recalls many conversations she had with her father (like her, a physician) in which he loved to reminisce about his own long career in medicine. But there’s one reminiscence she still bristles at, as she explains(1):

“The story was about ladies – always they were ‘ladies’ – and something he called la maladie du petit papier: ‘the disease of the little paper.’

“They would come to his office and withdraw from their purses tiny pieces of paper that unfolded into large sheets on which they’d written long lists of medical complaints. ‘You know what I did then?’ Dad asked. I did, but I let him tell me again anyway. ‘I’d listen to each symptom carefully, and say ‘yes’ or ‘I see’. 

“That’s all. And when a lady finally reached the end of her list, she would say: ‘Oh doctor, I feel so much better!’

“The point is, all those ladies needed was someone to listen.”

The notion that whatever was bothering these silly ladies was all in their heads was once a long held truism within the medical profession.  Continue reading

Words matter when we describe our heart attack symptoms

16 Nov

by Carolyn Thomas     @HeartSisters

When I interviewed Dr. Catherine Kreatsoulas* about the research paper she presented last month in Vancouver at the Canadian Cardiovascular Congress(1), she mentioned her previous heart study that caught my attention.

I was surprised by her explanation from that earlier research on how some women describe their chest pain during a heart attack (2), as she told me:  .   .
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The hospital discharge race: is sooner always better?

31 Aug

by Carolyn Thomas  @HeartSisters

wheelchairThey say that if you can remember the 1960s, you weren’t there. I do remember this about 1966, however:  I spent my birthday that year in a hospital bed, where I’d been a patient for a full month recuperating from a ruptured appendix and a nasty case of peritonitis.  Back then during the dawn of civilization, it was common for patients to spend far longer in hospital than we ever would now. For example:
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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”.
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“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 now living in poverty brought about by debilitating chronic illnesses. A patient advocate and health policy attorney, Erin offers a unique patient perspective in this letter to the organizers of the annual Medicine X conference at Stanford University.  After writing her letter, she was subsequently invited to speak at Medicine X 2014.  (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, 2014. 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.
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