The five questions your doctor is probably not asking you

14 May

five questionsWhen I spoke at the eHITS2014 Vancouver conference on health and technology recently, I was happy to share with the mostly-physician audience my enthusiasm for a new health care initiative called Flip The Clinic.  Have you heard about it yet?

This Robert Woods Johnson Foundation project asks our health care providers to start thinking seriously “beyond the walls” about the way medicine is practiced during a doctor’s visit. Continue reading

A motherless Mother’s Day

11 May

Based on a post originally published here on May 13, 2012

This month marks both the occasion of my mother’s birthday (she would have turned 86 on May 7th) and, of course, Mother’s Day – the third  Mother’s Day in a row that I didn’t send my Mom a card and flowers. That’s because she died two years ago on February 21st. Last month, she missed the birthdays of her first child (me) and her first grandchild (my own son, Ben) – but since the cruel diagnosis of vascular dementia invaded her brain cells some time ago, she’d long been unable to keep track of things like family birthdays anymore.

As Christopher Buckley wrote in his memoir, Losing Mum and Pup, when the last of your parents dies, you are an orphan:

“But you also lose the true keeper of your memories, your triumphs, your losses. Your mother is a scrapbook for all your enthusiasms. She is the one who validates and the one who shames, and when she’s gone, you are alone in a terrible way.” Continue reading

Is your doctor talking to your other doctors?

4 May

talking-illustration-2f787e24f86ed57d0b8d5d3bb93f5b9320b5af44-s6-c30While I was in my hospital’s Coronary Care Unit recuperating from a heart attack, my longtime family physician knew nothing about what had just happened to her patient of over 32 years. At some point, a hospital report signed by the cardiologist in charge of my care was sent off to her (probably by fax – and by the way, can you name any other profession that still uses the fax machine as a mode of urgent communication?)  Continue reading

What (not) to say when you’re visiting the sick

27 Apr

 by Carolyn Thomas  @HeartSisters

meWhile clinical psychologist Susan Silk was recuperating from surgery, she decided that she wasn’t feeling up to having any visitors. But when one of her work colleagues who really, really wanted to visit was asked to respect Susan’s request for privacy, her astonishing response to Susan was:

“This isn’t just about you!”

Well, actually, it was all about Susan, and only about Susan. Yet sometimes, our friends, family and other visitors seem to forget what to say – and what never to say – to people suffering a trauma, as Susan described in a Los Angeles Times article co-written with Barry Goldman last year.

In fact, her own experience as a patient prompted Susan to come up with a deceptively simple technique to help others avoid doing or saying the wrong thing. She claims that this technique works for all kinds of crises: medical, legal, financial, romantic, even existential. Susan calls it the Ring Theory: Continue reading

How a heart attack can trigger PTSD

20 Apr

 by Carolyn Thomas  @HeartSisters

This guest post was originally posted online by Holly Strawbridge of Harvard Health Publications on June 25, 2012.

Joep Roosen Amsterdam A heart attack is a life-changing event. For some people, surviving a heart attack brings renewed appreciation for life. For others, the event is so traumatic that worrying about having a second heart attack consumes their lives.

By the latest account, one in eight heart attack survivors experiences a reaction called post-traumatic stress disorder (PTSD). Although PTSD is usually associated with extreme trauma such as war, rape or a natural disaster, heart attack survivors can experience the same key symptoms: flashbacks that occur as nightmares or intrusive thoughts. As a result, the survivor actively tries to avoid being reminded of the event and becomes hyper-vigilant worrying that it will happen again.  

It’s a high price to pay for having your life spared.   Continue reading

Cardiac care for the whole patient – not just the heart

13 Apr

A serious medical crisis can yank you unceremoniously right out of your normal game and hip check you into the boards, leaving you metaphorically bruised and literally traumatized. The freshly-diagnosed wear a familiar look – that look which seems to ask plaintively:

“What the hell just happened to me, and what’s going to happen next?”

But it’s often a delayed question, surfacing only after the most serious part of a health crisis has been survived, finally allowing reality about what’s just happened to you to sink in.

Ironically, our ability to physically recuperate and heal may have as much to do with the psychosocial stress accompanying the crisis as it does with the heroic medical interventions that saved us.

What causes this psychosocial stress? 
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A 2007 Institute of Medicine report accurately describes the fears and worries that accompany most life-threatening illnesses, regardless of the diagnosis.(1) 
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These include basics like:
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  • The physical pain and exhaustion of the condition and its treatment.
  • Not understanding about the diagnosis, treatment options, and how to manage your illness and overall health.
  • Not having family members or other people who can provide emotional support and practical day-to-day help such as performing important household tasks.
  • Not having transportation to medical appointments, pharmacies, or other health services.
  • Financial problems, ranging from concerns about health insurance to payments for treatments, or problems paying household bills during and after treatment.
  • Concern for how family members and loved ones are coping.
  • The challenges of changing behaviours to minimize impact of the disease (smoking, exercise, dietary changes, etc.)

When I read this list recently, it struck me that when I was being discharged from CCU (the Intensive Care unit in cardiology), not one of the cardiac nurses, residents or cardiologists who cared for me during my post-heart attack hospitalization had said one word to me about any of the important and commonly-experienced psychosocial issues on this list.

Not one of them asked, for example, if I’d be able to afford to buy the fistful of expensive new cardiac meds I’d been prescribed after surviving what doctors call the ‘widowmaker’ heart attack.
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Not one asked if there was anybody at home to help take care of me there, or if there was anybody at home who needed me to take care of them.
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Not one asked if I’d be returning to a high-stress job, or even if I had enough banked sick time or vacation days to take sufficient time off to recuperate before going back to work.
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Such real life issues are simply not the concern of most of our health care providers.
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It’s almost as if they are unaware of the considerable research that suggests ignoring the psychosocial issues of their seriously ill patients increases the risk of poor outcomes and higher hospital re-admission rates down the road.
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Indeed, the 2007 report adds that patients may pay a hefty and under-recognized toll when experiencing the kind of psychosocial stress that can accompany any medical crisis:

“Those suffering from psychosocial issues can have difficulty remembering things, concentrating, and making decisions. These mental health problems can also decrease patients’ motivation to complete treatment, take their medications, change unhealthy practices such as smoking, and decrease their ability to cope with the demands of a rigorous treatment process.
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“There is also growing evidence that stress can directly interfere with the working of the body’s immune system and other functions.”

As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained:

“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”

According to the 2007 report, studies on patients diagnosed with a wide variety of chronic illnesses (including but not limited to heart disease, diabetes, arthritis, chronic obstructive lung disease, depression, asthma) have identified specific obstacles that get in the way of how well patients are able to realistically manage their illness and health (Wdowik et al, 1997; Riegel and Carlson, 2002; Bayliss et al, 2003; Jerant et al, 2005).

These obstacles include things like distressing symptoms, poor communication with physicians (with resultant poor understanding of their illness and how to manage it) or lack of family support at home.
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And worse, patients are often unaware of resources that may be available to help them overcome or manage these obstacles. Even when they are aware, however, limitations in mobility, fatigue, pain, transportation problems or cost issues often prevent them from taking advantage of the resources that could actually help them (Jerant et al, 2005).
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As in most areas of medicine, it seems that once you survive the immediate health crisis, the medical team seems to breathe a collective sigh of relief – and then shifts attention directly to the incoming wounded who need your hospital bed more than you now do.
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So that may be why it’s only when we are finally back at home, away from the reassuring 24/7 monitoring of our medical team in hospital, that reality slowly begins to trickle back in.
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This is particularly true among certain populations, say the authors of the 2007 report. For example, psychosocial problems – and the effects of failing to address them – can appear magnified in these demographic groups:

  • vulnerable and disadvantaged populations such as those living in poverty
  • those with low literacy
  • members of cultural minorities
  • those over age 65 who are more likely than younger patients to experience the compounding effects of other chronic conditions that occur with aging

What’s the price of ignoring psychosocial issues that affect patients so profoundly? Increased rates of hospital re-admission, lower rates of adherence to recommended treatments, inferior quality of life, and worse longterm outcomes/mortality.

Doctors, you choose..

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(1) Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US); 2008. 1, The Psychosocial Needs of Cancer Patients.

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Q: How have you experienced medical care that addressed you as a whole person?

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See also:

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