When Edward Davies of the British Medical Journal attended the recent Lown Institute conference in Boston, he was reminded of some unlikely wisdom from boxer Mike Tyson. In the run-up to a big fight, Iron Mike was being bombarded with media questions about how he intended to deal with his latest challenger. Did he have a strategy in place to cope with their plans? The boxer's response was simple: "Everybody has plans 'til they get punched in the mouth."
In boxing terms, as Davies wrote in the BMJ, this is completely literal, sound advice, but as a figurative metaphor for life, it's not bad, either: "Listening to a patient panel here at the Lown Institute conference, I was reminded that this is a worldview that doctors might do well to remember."
Most patients diagnosed with a life-altering diagnosis can readily identify with what that metaphorical punch in the mouth feels like. And no matter how competent, how smart, how resourceful we may think we are before a catastrophic health crisis strikes, many of us may suddenly feel incompetent, ignorant and helpless when thrust inexplicably into the stress of such formidable reality. This may feel like being momentarily powerless for some or like a sucker-punch that knocks the wind right out of us for others.
What many patients learn pretty darned early on in the trajectory of a serious condition like heart disease is that we're actually dealing with two separate issues:
- The impact of the diagnosis on the body
- The fears and worries that accompany such a diagnosis
It's these accompanying psychosocial issues that most physicians seem unable or unwilling to fully appreciate. As cardiologist and founder of the Mayo Women's Heart Clinic, Dr. Sharonne Hayes 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."
So what can often happen is that instead of looking at the whole person sitting across from them, doctors may focus only on the specific organ or body part that needs attention. The BMJ's Davies described the Lown conference patient panel findings from a patient's perspective: "Until the second they meet the doctor, patients were an individual with a unique history and plans... What happens when they encounter the health system is not simply that they suddenly become 'vulnerable' people... It's that they get punched in the face and their plans change."
We know that people suffering from depression, anxiety or stress that so often accompany physical illness can have difficulty remembering things, concentrating and making decisions. And here's how these problems can further worsen a prognosis:
- Decrease motivation to complete treatment, change unhealthy practices or start healthy ones
- Decrease ability to cope with the demands of a rigorous treatment process
- Directly interfere with the working of the body's immune system and other functions
In 2007, the Institute for Medicine issued a report on psychosocial stress in cancer patients. I think the report's message also applies beautifully to heart patients – and, in fact, to all people facing a punch in the mouth like any on the following list of emotional stressors:
- The physical pain and exhaustion of disease and treatment
- Not understanding about the disease, 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 household chores
- Not having transportation to medical appointments 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 behaviors to minimize impact of the disease (smoking, exercise, etc.)
As I wrote in Living with the "Burden of Treatment", Dr. Victor Montori and his Mayo Clinic-based team of researchers have introduced the unique concept called Minimally Disruptive Medicine to help address these overwhelming realities for those living with serious illness – and particularly for those with multiple chronic illness diagnoses.
Dr. Montori describes a patient's burden of treatment like this: "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... 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."
Minimally Disruptive Medicine also acknowledges what some physicians may not: This overwhelming burden of treatment that so many patients live with on a daily basis can become a burden that simply exceeds a patient's capacity to cope and may not in fact even guarantee getting better at all.
As Edward Davies of the BMJ summed up his impressions of that patient panel at the Lown Institute conference: "For physicians, it means this: many of the patients you see are not 'vulnerable people.' They do not need childcare. It is just that your sudden presence in their lives has punched them in the mouth... The answer is not to pull them out of the boxing ring and take over, it's to get in their corner with a bucket and sponge – and come up with a new plan, together."
This post originally appeared on Carolyn's 'Heart Sisters' blog on January 11, 2014.