“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 Friday, 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

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

Are you a victim or a survivor?

29 Jun

by Carolyn Thomas  @HeartSisters

sssIn Dr. Wayne Sotile’s very useful book for all freshly-diagnosed heart patients called Thriving With Heart Disease, he nails the description of what he calls the patient’s homecoming blues.  It’s that need to adjust from being cared for 24/7 in hospital following a cardiac event to suddenly being booted out the door and sent back home. For example:

“You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures.

“Moving very slowly, bouts of depression, weeping, social withdrawal or obsessive anxiety about dying – these are all normal during the early stages of heart disease.”

Normal or not, I found “obsessive anxiety about dying” to be an extremely unpleasant way to live in the days following my own heart attack.  Continue reading

Hypervigilance: waiting for that second heart attack

22 Jun

by Carolyn Thomas  @HeartSisters

511724-0211-23Until I had a heart attack, I didn’t know that one of the biggest risk factors for having a cardiac event like mine is having already had one. Heart disease, a chronic and progressive diagnosis, is the gift that just keeps on giving. And as I wrote here, one of the Big Lessons for me has been that, although my doctors can “squish blockages, burn rogue electrical circuits, and implant lifesaving devices” all they like, their heroic efforts do not address what originally caused this damage to my coronary arteries in the first place – likely decades before my heart attack struck.  See also: The Cure Myth

In fact, one in four women who survive a first heart attack will die within the following year, most often of cardiac arrest or another heart attack according to the National Institutes of Health. And women are twice as likely to have a second heart attack in the six years following the first compared to our male counterparts.

No wonder sobering stats like these can drive the freshly-diagnosed heart patient to an exhausting and fearful state of acute hypervigilance.

I was reminded of this while reading a book that my probation officer-daughter Larissa lent me called Emotional Survival for Law Enforcement by Dr. Kevin Gilmartin, PhD.*  Stay with me, dear reader – this connection actually makes more sense than you might suspect . . .   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

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