Conforming to the human will in its pursuit of health and happiness
Ahmed Toufic Kurdi, MD, BWH Center for Neurologic Diseases
Before I began my medical training, an astute clinician offered the following advice: “it is important to hear murmurs but equally important to listen to the other end of your stethoscope.” I spent considerable time on the wards listening to a wide spectrum of patients and their care givers. They verbalized their medical condition while sharing their hopes and concerns. Their narrations etched in my mind the social and natural history of numerous diseases. On many occasions they described how their illness limits their ability to lead independent lives, fulfill their obligations to family and society, and realize their potential as productive members of the community. No matter the age or condition, such limitations did not dissuade some patients from choosing to lead a healthy life or adopt a healthy mindset.
When was the last time you left a patient’s room awestruck by the sheer resilience of the human will? Delivering bad news or revealing a diagnosis to a patient, how many times have you slipped into a haze wondering whether you possess a similar coping ability as theirs? What constitutes the driving force behind a patient’s compliance to treatment and follow up? Day after day such questions surfaced as I wrote my patient notes. Given the chronic nature of many prevalent illnesses coupled with a patient’s resounding will to move forward in life despite illness, I began to wonder about the true definition of health. Is health merely the absence of disease? Or is it the resilience allowing us to proceed functionally through life with a sense of well-being and dignity despite chronic illness and disability?
“I long to outgrow the use of a disability scale as a measuring stick of ailment and adopt a quality-of-life scale as a measuring stick of health.” – Ahmed Toufic Kurdi, MD
According to the World Health Organization (WHO) constitution, health is “a state of complete physical, mental and social well-being and not merely, the absence of disease or infirmity.” This framework of health deems many individuals as unhealthy simply because they suffer from chronic diseases. Along the same lines, aging rarely confers a “complete” state of well-being. How is it then that the WHO’s definition of health remains unaltered since its formulation in 1948? In 2011, a timely article entitled, “How should we define health?,” was published in the British Medical Journal. Huber et al., shed light on ongoing efforts aimed to introduce changes to the framework definition of health. The article deemed that it would be healthier to define health as the “ability to adapt and self-manage in the face of social, physical and emotional challenges.” The “absoluteness of the word ‘complete’ in relation to well-being” is also perceived to be a major limitation of the WHO definition.
Since 1948, we have witnessed tremendous leaps in the medical realm resulting in marked prolongation of life expectancy, and alternation of patterns of illness from acute diseases and global epidemics to an overwhelming predominance of chronic diseases. When one enumerates the breadth and prevalence of medical conditions, it becomes inevitable but to imagine that any individual could have been or currently is a patient with a covert illness waiting to be unraveled at the next visit to the emergency room or clinic. It follows that the key to defining health would be to have its broad meaning encompass all those who have sought, currently follow up, or eventually need health care. The two words, ‘health’ and ‘patient,’ need not be mutually exclusive. Doesn’t the word ‘patient’ entail the virtue of patience, the willingness to seek medical attention, and the efforts undertaken to cope with the repercussions of disease? Such attributes testify to the health of many patients we encounter in our practice.
A paradigm shift in the perception of health is being proposed by several scholars and public health experts. It would definitely help the international health community, as well as health policy advocates, to better address the health needs of local and global communities. Since cure or complete recovery from numerous diseases is far-fetched, the emphasis should realistically be on increasing the patient’s coping capacity with the physical, mental and social stressors and challenges of everyday life.
As such, resources should be mobilized to improve patient education and invest in patient empowerment as a partner in health. Indeed, when the disabled or chronically ill are equipped with successful coping strategies, the limitations set forth by their illness do not significantly affect their perceived quality of life. Remarkably, the ability to cope and sustain a high quality of life against all odds has been coined as the ‘disability paradox’ by Gary L. Albrecht and Patrick J. Devlieger.
I long to outgrow the use of a disability scale as a measuring stick of ailment and adopt a quality-of-life scale as a measuring stick of health. My hope is that the description of health is expanded beyond those who are fortunate to be disease-free. Its definition should also encompass those who are as fortunate to have the resilience and coping capacity to confront disease of chronic or disabling nature with a sense of fulfillment and a feeling of well-being, dignity and integrity.
Are you a postdoc, fellow or resident interested in sharing your thoughts on a topic of interest in your field? If so, email your “Next Generation” column idea to BWHClinicalandResearchNews@partners.org for consideration in a future issue.