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.
- 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 (or, as in my own case, financial problems caused by an inability to return to work).
- 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.
“Those suffering from psychosocial issues can have difficulty remembering things, concentrating, and making decisions. These 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.”
Not only are hospital staff not focused on the whole person in front of them, when that person is ultimately discharged from hospital, a written care plan rarely accompanies them home, as I wrote here previously:
I Many factors post-discharge can cause a patient to need re-hospitalization. These include the person’s ability to keep up with their medications at home, or to make follow-up visits to a personal physician – both issues that can and should be addressed with a competent discharge plan.”
According to the Institute of Medicine 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).
- vulnerable and disadvantaged populations such as those living in poverty
- those with low literacy
- 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..
(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.
NOTE FROM CAROLYN: I wrote much more about the many psychosocial issues that are common after a cardiac diagnosis in A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
Q: How have you experienced medical care that addressed you as a whole person?