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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 an American friend who’s living with both multiple health issues and poverty.  She has asked to remain anonymous. I’m grateful for her contribution to an important discussion, as she offers a unique patient perspective in this letter to the organizers of a well-known academic conference on healthcare.

“Dear 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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Who will take care of you at home if you’re seriously ill?

6 Jul

by Carolyn Thomas     @HeartSisters

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be more true than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill.

Study author Dr. Amelia Karraker, a researcher at the University of Michigan Institute for Social Research, examined how the onset of four serious illnesses – cancer, heart disease, lung disease and stroke – affected the marriages of couples over a 20-year period. Dr. Karraker explained:

“We found that women are doubly vulnerable to marital dissolution in the face of serious illness.

“They are more likely to be widowed, and if they are the ones who become ill, they are more likely to get divorced.”

Why is this?    Continue reading

Why you should hug your cardiologist today

15 Jun

by Carolyn Thomas     @HeartSisters

hugI like to tell my women’s heart health presentation audiences that, if you’re going to have a heart attack, you should really try to have one here in Victoria, British Columbia – or in any other city that boasts a healthy ratio of cardiologists-per-square-city-block.

My theory on this is that cardiologists, just like the rest of us, want to raise their families in a charming historic town with good schools, good restaurants, good shopping, fun night life, live theatre, sports teams, 200 km of cycling trails, a symphony orchestra, picture-postcard ocean/forest/mountain scenery, and a near-perfect coastal climate allowing them to garden or play golf 12 months a year. If this town also has a major university and a good-sized teaching hospital that attracts both students and cardiac researchers, that’s also going to go a long way in appealing to cardiologists.  You’re welcome, Tourism Victoria . . . Continue reading

Convalescence: the forgotten phase of illness recovery

8 Jun

by Carolyn Thomas     @HeartSisters

I love the work of U.K. philosopher Alain de Botton, an explorer of the  ‘philosophy of everyday life.’  He once wrote:

“People can accept you sick or well. What’s lacking is patience for the convalescent.”  

Convalescence. It’s the gradual return to health while you still need time to recover from illness or medical treatment, usually by resting. For patients, it’s that fuzzy grey area in between feeling acutely ill and feeling 100% healthy again. The term comes from the Latin convalescere: to grow fully strong.”

Most garden-variety convalescence is mercifully short. After spending a few days in bed with a flu bug, for example, you might feel a bit weak or shaky for a while. Not exactly sick anymore, but not yet 100%. Other forms of convalescence, however, may take weeks, months or even years of recuperation. And with some chronic and progressive disease diagnoses, everyday life can start feeling like one long endless period of convalescence – with good health merely a dim memory.  The difference: unlike the historical practice of viewing convalescence as a distinctly separate and important stage of illness recovery, today’s convalescents may simply feel like they’re being forced to very quickly adjust to the “new normal” of life. Continue reading

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