The missing link in chronic disease care

The cardiologist who had been called to the E.R. looked down at me lying on the gurney, introduced himself, and said quietly:

“I can tell from looking at your T-waves and all of your other cardiac tests that you have significant heart disease.”

“Significant heart disease.”  Significant heart disease? Did he just say “SIGNIFICANT HEART DISEASE”?

Now just imagine your reaction if you were a patient who hears bad news about not just one life-altering diagnosis like this, but two or more of them.

The National Health Interview Survey found that the percentages of adults now living with multiple chronic diseases has progressively increased for both men and women, for all racial and ethnic demographics, and for most income groups.

The conditions surveyed included heart disease, hypertension (high blood pressure), diabetes, cancer, stroke, chronic bronchitis, emphysema, asthma and kidney disease.

Now here’s an example of even worse news: very few patients succeed in managing more than one chronic condition at the same time, according to a Colorado study of 29,000 patients reported in ​the American Heart Association journal Circulation: Cardiovascular Quality and Outcomes.*

In order to manage their multiple chronic disease issues well, these people have to:

  • eat healthier than they have ever done before
  • exercise more than they want to
  • faithfully take a complex regimen of medications they have been arbitrarily prescribed
  • carefully monitor themselves for achievement of medical treatment goals – often goals imposed upon them by their health care professionals.

But even the patients studied who kept on top of their nutrition, physical activity, medication and self-monitoring activities had trouble maintaining “simultaneous control” over their conditions in the long term, according to this research.

Dr. Victor Montori at Mayo Clinic is working on an innovative alternative to modern medical practice called Minimally Disruptive Medicine. He refers to the reality of a patient’s workload as the “burden of treatment” and believes that a number of factors are at play:

We think of the patient as having the capacity to do the work, and being exposed to a workload. We consider the workload involved in being a patient – and at the same time, in being human, being a parent, a spouse, a worker, a teacher, a coach.  But all of these roles compete for the same capacity.

“A patient’s education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status – all of these affect a patient’s capacity to do the work. The workload can simply exceed capacity to cope.

“One of the key aspects of Minimally Disruptive Medicine is the need to become aware of the burden that our treatments cause on people’s lives. We know very little about it, but our international team is working toward clarity in this area.”

In addition, as people age, the likelihood of having to manage multiple prescription drugs increases, according to Steven Findlay, senior health policy analyst at Consumers Union:

“Prescription drug use is heavily concentrated in people age 55 to 65. Of older adults, 12 percent use 10 or more medications per week.”

While about a third of the Colorado group studied lost and regained control of their chronic illnesses within the first 90 days after achieving it, more than half lost control permanently.

Dr. Edward Havranek of Denver Health is one of the co-authors of this Colorado study. He added:

“We can’t treat these conditions in isolation. We need to learn to help patients find ways to manage difficult combinations of conditions through strong relationships with primary care providers, simplified medicine regimens, and training in good diet and exercise.”

The recommendations? Researchers suggest the usual systemic changes to provide better, cost-effective care of multiple chronic conditions, including:

  • integrating primary and specialty care
  • using electronic health records data
  • enhancing patient outreach through nurses and pharmacists

Now, speaking merely as a dull-witted heart attack survivor, it seems that what is clearly missing here is any acknowledgement of the profound emotional issues that so often accompany the diagnosis of any one of these chronic conditions – never mind living with more than one at the same time.

I’ve written previously about my own traumatic and utterly unexpected experience with the severe depression that blindsided me after I survived a heart attack.  Yet the nightmare I endured should not have been unexpected at all after such a catastrophic diagnosis. Depression turns out to be remarkably common among cardiac event survivors (as high as 65%) – yet fewer than 10% are appropriately identified.

Dr. Stephen Parker (an Alaskan cardiac psychologist and himself a heart attack survivor) believes:

“The depression and anxiety following a heart attack are a bit different from the depression and anxiety that most therapists encounter, and both are going to be more resistant to treat because there are damn good reasons to feel anxious and depressed.

“A heart attack is a deeply wounding event, and it is a wound that takes a long time to recover from, whatever the treatment.”

For example, as Australian researchers described in the Western Journal of Medicine:**

“Those who would have died from their condition in the past may now survive, but there is an emotional cost of longterm treatment and medical surveillance to consider.

“Such patients must cope with a chronic condition and yet the emotional dimensions of these conditions are frequently overlooked when medical care is considered.

“Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social and cultural dimensions of illness and health.”

We know that patients with chronic conditions often have to radically adjust their aspirations, lifestyle, and even employment. Many of us grieve the loss of our “normal” life long before being able to gradually adjust to that loss.

But many others have protracted distress that may lead to severe depression or anxiety.

According to the Cleveland Clinic, any chronic disease diagnosis can trigger severe emotional fallout, but the risk of mental health issues  increases with:

  • the severity of the illness
  • how much disruption it causes in one’s life

And the depression/anxiety brought on by chronic illness can in turn aggravate the illness, causing a vicious cycle to develop.

Depression is especially likely to occur when the illness is associated with pain, disability, or social isolation. Depression in turn can intensify pain, fatigue, and the self-doubt that can lead to social isolation.

The rate for depression occurring along with serious physical health issues is quite high. For example:**

  • Heart attack: 40%-65%
  • Coronary artery disease (without heart attack): 18%-20%
  • Parkinson’s disease: 40%
  • Multiple sclerosis: 40%
  • Stroke: 10%-27%
  • Cancer: 25%
  • Diabetes: 25%

Identifying psychosocial problems in those already diagnosed with chronic illnesses like these can be a tough challenge.  We know that physical symptoms such as disturbed sleep, impaired appetite, and lack of energy may already exist as a result of the disease. Sometimes treatment for a medical condition – for example, the beta blocker drugs taken by heart attack survivors – may significantly affect the patient’s mood, as can the disease process itself – for example, hypoxia (oxygen deprivation) and infection in patients with chronic respiratory disease may have a direct impact on the brain.

A number of studies suggest that even mild depression can reduce a person’s motivation to seek medical care or to follow even basic recommended treatment or lifestyle improvement plans. Depression and hopelessness also undermine the patient’s ability to cope with pain and may have a corrosive effect on personal relationships.

But isn’t it time that we also need to add awareness of these psychological stressors of chronic disease diagnoses to the medical toolbox?

Dr. David Spiegel wrote a JAMA editorial called “Healing Words” - about a study that found patients living with chronic disease improved after writing in a journal about enduring the stress of illness, compared to patients who wrote about neutral topics:***

“For patients living with two or more chronic diseases, being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always keep a positive outlook.

“If we could produce similar outcome evidence about a new drug, it is likely that it would be in widespread use within a short time. Why? We would think we understood the mechanism (whether we did or we did not) and there would be a mediating industry to promote its use.

“But manufacturers of paper and pencils are not likely to push writing in a journal as a treatment addition for the management of asthma or rheumatoid arthritis.

.

* Emily B. Schroeder et al. “Simultaneous Control of Diabetes Mellitus, Hypertension, and Hyperlipidemia in Two Health Systems”. Published online before print July 31, 2012, doi: 10.1161/​Circulation: Cardiovascular Quality and Outcomes.111.963553

** Jane Turner, Brian Turner. West Journal of Medicine. “Emotional dimensions of chronic disease”. 2000 February; 172(2): 124–128. PMCID: PMC1070773

*** Spiegel D. “Healing words: emotional expression and disease outcome”. JAMA 1999; 281:1328-1329

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15 thoughts on “The missing link in chronic disease care

  1. That is a very comprehensive look at the “missing link” and what to do about it.

    And here I was blaming myself for being unable to juggle all 4 balls at once to care for multiple chronic disease. Glad to hear that it is hard and I am not the only one who falls short

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    • Thanks for your perspective on this, Annette. No, you’re definitely not “the only one who falls short” – but even that assessment is off the mark, as it implies that somehow we should be able to juggle all the balls life throws at us! Good luck to you.

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  2. One of the things I’ve learned in living with a wife who is living with multiple chronic diseases (and is also a cancer survivor) is that other people who are not living with a chronic disease or have not been diagnosed with cancer cannot relate to the challenges faced by people living with these conditions.

    I’m not even sure if I can fully – and consistently – relate to the often overwhelming issues that arise for my wife.

    Other, often well-meaning, people who want to offer support often miss the mark, in large part due to their inability to really empathize with these challenges … which only adds to the sense of isolation.

    I’ve been heartened to see so much media attention recently devoted to post traumatic stress disorder (PTSD) suffered by many returning military veterans. I believe that the diagnosis of cancer or another life-threatening – or severely lifestyle-threatening – disease is a traumatic event, and that anyone who is living with such challenges is, by definition, suffering from a form of PTSD.

    And when the event involves the body attacking itself – such as is the case with cancer or autoimmune diseases – I suspect it may be even more emotionally / psychologically scarring than an attack from an external source (not that I want to in any way diminish the severity of the scars of military battles).

    Veterans are often reluctant to admit symptoms of PTSD. They [are trained to] feel they should be tough enough to withstand any of the horrors of war. I believe many chronic disease sufferers and cancer survivors are similarly reticent to reveal just how much they are suffering.

    12 step programs have many gems of wisdom that apply to anyone suffering from chronic conditions that often seem overwhelming. One of my favorite slogans, that I think applies in this context, is “we’re only as sick as our secrets”. Thanks for being willing to shed some light on an issue that typically lurks only in the shadows for many.

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    • Thanks for your thoughtful response, Joe. You are so right – it’s so hard to ‘get it’ unless you have walked a mile in someone’s shoes. I cringe when I recall my own ignorant and dismissive attitudes towards those with depression before my own crippling experience with post-MI depression: “Well, why don’t they just pull up their socks and get on with life?”

      PTSD is indeed a recognized mental health issue among heart attack survivors. A U.K. study for example found that 16% of survivors studied met clinical criteria for acute PTSD, and a further 18% reported moderate to severe symptoms of PTSD. One doctor compared PTSD in both heart patients and combat veterans: in the former, the perceived threat is inside us, but in the latter the threat is ‘out there’.

      I’ve been writing about PTSD in heart patients for a couple years on my other site Heart Sisters here and here for example.

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  3. I’m glad I found this post. Thanks for writing so eloquently about a difficult problem. Indeed, the “juggling” act is near impossible. I don’t even dream about simultaneous control. It’s kind of like being in a car with poor suspension on a gravel road. You hang on for the ride.

    Blessings,
    Jane

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  4. Good, very helpful post. I am a great believer in journal writing or the equivalent, as it helps gets the ‘demons’ out. The challenge for many of us is to find something that works for each of us and, to use Viktor Frankl’s approach, find meaning and purpose that help us keep going.

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  6. When are doctors and nurses and all healthcare professionals going to finally GET this important message? People are not merely collections of symptoms or problem organs. Emotional and psychological influences affect every aspect of our physical health. Why is this NEWS to some?

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  7. I really relate to the concept of “simultaneous control”.

    I’ve now been diagnosed with nine different conditions and I’m burning out. I need to keep a spreadsheet of medical appointments and tests; entries in a diary just don’t cover it anymore. There are more things that I am supposed to do for myself than I can fit in a day, particularly considering that I often feel exhausted. And I’m not even sure what’s causing the exhaustion — the conditions, or the medications, or probably both. It often seems to me that, if one condition is under control, another is out of control.

    Yes, it is depressing. And I dread some of the medical appointments because I know I’ll be dealing with doctors who will not understand why I couldn’t do everything they want me to do. Medications are particularly hard. I’ve had problems with allergies, severe side effects, and even toxicity. Some doctors act as though I’m deliberately obstructing their wonderful treatment!

    And of course other people don’t really want to hear about all my problems. They want me to be “positive” about everything. One woman even told me that I was only sick because I thought negative thoughts. I couldn’t get past that — I just don’t see her anymore.

    I’ve found writing a daily journal helps a lot. It’s just for me, no-one else is ever going to see it, and I can be entirely honest about my feelings.

    I’ve probably gone off topic here, but it was such a relief to find this page and see what other people in this situation have to say.

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        • Thanks for this link to your post “Too Many Decision” – you are so right on the money! And yes, it’s an absolute relief to know that there are actually doctors like Dr. Montori out there who ‘get it’ and are working hard on our behalf to address the workload of being a patient.

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