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?
A 2007 Institute of Medicine report accurately describes the fears and worries that accompany most life-threatening illnesses, regardless of the diagnosis1. These include basics like:
- 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 behaviors 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 the fistful of expensive new cardiac meds I'd been prescribed after surviving what doctors call the "widowmaker" heart attack. 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. 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.
Such real-life issues are simply not the concern of most of our health care providers.
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 readmission rates down the road. Indeed, the 2007 IOM 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... 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.
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).
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. 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.
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 the psychosocial issues that affect patients so profoundly? Increased rates of hospital readmission, lower rates of adherence to recommended treatments, inferior quality of life and worse long-term outcomes/mortality.
Doctors, you choose.
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.
This post originally appeared on Carolyn's Heart Sisters blog on April 13, 2014.