Middleton, Wisconsin, United States
|Grokking: to understand with empathy|
“It is a life-saving intervention,” said Dr. Randall Thomas, the director of the Cardiac Rehabilitation Program at the Mayo Clinic in Rochester, adding that participation rates were abysmal. Only 20% of eligible patients over the age of sixty-five enroll in cardiac rehabilitation programs, which is a troubling proclamation in view of a 2007 study that looked at outcomes from over 600,000 Medicare beneficiaries that had attended a program.1 Using three different analysis techniques, death rates in attendees were 20-34% less than non-attendees. In an editorial Thomas wrote, “Every year, hundreds of thousands of patients experience a coronary heart disease (CHD) event and enter a period of time that is high risk, life threatening, and life altering—the medical equivalent of a ride down the turbulent and dangerous whitewater-rapids portion of a river.” He compared cardiac rehabilitation to a raft that could ride the whitewater.2
Canadian cardiac rehabilitation programs, where financial barriers to enrollment are less significant, also report low participation rates.3 Their published guidelines also invoked troubled waters to describe heart disease, with cardiac rehabilitation providing a bridge from the acute to the chronic setting.4 They used quotes from Einstein as epigraphs to each chapter of their guidelines, marshalling science and prose to translate knowledge into action.5
Almost ten years after this call to action, the medical community has focused research studies on interventions that target barriers to patient participation. Logistical improvements, educational programs, and improved funding have resulted in small changes in enrollment rates. However, the largest change, an increase of 50%, occurred when communication strategies included physicians or their liaisons directly encouraging patients to enroll in cardiac rehab.6 But once enrolled a similar story emerges: most patients (up to 50%) fail to adhere to lifestyle changes.7 Putting words into action is a story about life defying a life-saving intervention, a tale that has deep historical roots.
For centuries, word for word, the tyranny of chest pain has affected daily life. In 1772, English physician William Heberden wrote: “Those who are afflicted with it, are seized while they are walking (more especially if it be uphill, and soon after eating) with a painful and most disagreeable sensation in the breast, which seems as if it would extinguish life if it were to increase or to continue . . .”8
Forty-two years later, Dr. John Warren wrote, “The remarkable facts, that the paroxysm, or indeed the disease itself, is excited more especially upon walking up hill, and after a meal; that thus excited, it is accompanied with a sensation, which threatens instant death . . .”9
By 1997, the word count drops, but the meaning stays the same. Author Clarence Lasby described Eisenhower’s heart attack: “Sometime between 1:30 a.m. 2:30 a.m., he was awakened by a ‘severe chest pain’ and thought immediately of the onions and the distress of the day before.”10
And in 2007, author Joan Didion, wrote a journalistic rendering of her husband’s heart attack. “We sat down. My attention was on mixing the salad. John was talking and then he wasn’t . . . I only remember looking up. His left hand was raised and he was slumped motionless. . . . I remember the sense of his weight as he fell forward, first against the table, then to the floor.”11
Extraordinary stories about defeating tyranny also appeared. Heberden recorded the case of a patient suffering from angina “who set himself the task of sawing wood every day and was nearly cured.”12 In 1854 William Stokes wrote, “The symptoms of debility of the heart are often removable by a regulated course of gymnastics, or by pedestrian exercise.” He goes on to describe pedestrian exercise: comfortable walking initially on level ground, the distance and gradient being increased as tolerance improved—always, however, cautioning against excessive fatigue, breathlessness, or chest pain.13
And then a curious detour.
In 1863, surgeon John Hilton, known as “anatomical Jack,” carefully correlated symptoms of pain to his anatomical dissection, mostly in the musculoskeletal system. Based on his research he coined a mantra, “Pain the monitor; Rest the cure,” as starting points for medical decision-making.14
Physicians took the scholarship of Hilton and applied it to “cardiacs,” encircling rest around every aspect of a person’s daily life: five to eight weeks of bed rest, sitting only after being carried from bed to chair for progressively small increments of time, and bowel movements monitored to avoid straining. The recurrence of heart pain was to be met with the prescription of more bed rest. By 1919, electrocardiographic monitoring became part of the standard of care to diagnose whether increasing activity was damaging the heart.15
Historian Clarence Lasby documented the conversations between the emerging science of heart disease, medical testing, and Eisenhower’s words. After six weeks of bed rest Eisenhower noted that it made his muscles flabby, a condition we now recognize as deconditioning. The general public hung on the words of his cardiologists at news briefings, worrying that Eisenhower was doomed to a life of invalidism. After his confinement he was faced with the question of running for a second term. Political, professional, and academic winds buffeted his medical team’s recommendations as well as his decision-making. For Eisenhower it came down to the fact that he felt healthy. His desire was to continue with his life’s purpose: to bring peace and prosperity back to post-war America. Lasby entitles this chapter based on a letter Eisenhower received from University of Notre Dame football coach Frank Leahy, “When the going gets tough, the tough gets going.” A warrior image overtook tyranny and invalidism by Eisenhower’s successful run for a second term.16
By 1955, Levine and Lown were advocating armchair therapy, reasoning that absolute bed rest had serious physiological consequences. They proposed that patients promptly get out of bed after a heart attack, sitting for progressively longer periods.17 Over the next decade, their ideas were supported by research in cardiovascular physiology and led to patients spending less time in bed and more time upright, walking and resuming daily activity. Formalization of inpatient and outpatient cardiac rehabilitation programs grew over the next three decades fueled by the dedication of Dr. William Hellerstein. In his autobiography he describes himself as a human ecologist. His life’s work is a study of the connections between cardiovascular physiology and the daily lives of people working, arguing, and exercising.18
In the 1980s and 90s, arrays of pharmacological and surgical interventions were devised. “Fix-it” metaphors emerged to describe the treatment of heart disease—fat-clogging arteries needed to be unclogged, the Roto-Rooter the image of choice. However, basic research results between 1987 and 2007 consistently began to show that the fat story is not about clogging arteries. It is about a firestorm of inflammation that leads to scar formation inside an artery or to the release of debris that can block coronary arteries at critical junctures. The Roto-Rooter is helpful in the setting of an acute blockage, but preventing the debris from forming through diet, exercise, and not smoking, is about defusing the wreckage of a rogue scar. Attention to the daily life of the patient became the prevention mantra, unearthing a constellation of cultural, community, and societal forces that were called barriers or facilitators to cardiac rehabilitation participation.19
In the 1990s, small studies began to document far-reaching outcomes after cardiac interventions: patients were not returning to work, not adhering to medications, and medical systems were struggling with managing costs.20 From 1990-2007 a story of ambivalence emerged, a conflict between the failures of the fix-it tale of biomedicine and the barriers to cardiac rehabilitation. But the life-saving story of Suaya’s study in 2007, underscored by the large number of patients studied, resulted in more interest in behavioral research that echoed Hellerstein’s holistic approach. Avoiding the constraint and reductionism of barriers and facilitators, a new language framed by self-management theories emerged. It focused not only on biomedical factors, but also on the patient’s purpose in life and the emotional chaos associated with a cardiac event. Pain and tyranny were losing their century-old grip and were replaced by body awareness, stress management, self-efficacy, resiliency, and—an odd phrase—the rating of perceived exertion.21
The development of a clinical tool called Borg’s Rating of Perceived Exertion (RPE) is an enlightening story embedded inside the history of cardiac rehabilitation. The RPE associates the expected increase in heart rate with exercise to words that describe the patient’s perception of the exercise intensity. It is an expression of exertion that has been translated into many languages, including Braille, and is used worldwide in rehabilitation, wellness, and community settings. Moderate exercise intensity is achieved at a heart rate of 130. On the RPE scale this is designated with the words somewhat hard. So when a patient consistently exercises at a level that they perceive as somewhat hard their exercise physiologist translates this into the concept of moderate exercise.22 This story understands the emerging narrative of the patient so thoroughly that it becomes a part of both the healthcare provider and the patient; facts and perceptions linked, a link best described with a Martian word coined by Robert Heinlein in his novel “Stranger in a Strange Land”—a word that is a guttural attack on ambivalence—grokking, to understand with both the heart and the soul.23
Grokking is the emerging narrative that evokes cardiac rehabilitation’s greatest potential; it is not bridging or rafting, but linking events together. It is a story of laboring hearts facing the tyranny of disease and treated hearts enduring medical heroism; a story of healing hearts, linking the examined life to a life-saving intervention.
- Suaya, JA. “Use of Cardiac Rehabilitation by Medicare Beneficiaries after Myocardial Infarction or Coronary Bypass Surgery.” Circulation, 2007; 116:1653-1662.
- Thomas, R. “Cardiac Rehabilitation and Secondary Prevention Programs.” Circulation, 2007; 116:1644-1646.
- Stone, JA. Canadian Guidelines for Cardiac Rehabilitation and Cardiovascular Disease Prevention.Translating Knowledge into Action. 3rd Edition 2009. p 73
- Ibid., p. 3.
- Ibid., p ix.
- Ades, PA. “Increasing Cardiac Rehabilitation Participation from 20-70%.” Mayo Clinic Proceedings, 2017; 92(2): 234-242.
- Campkin, LM. “Coronary Artery Disease Patient Perspectives on Exercise Participation.” JCRP. 2017;37:305-314.
- Heberden, W. Commentaries on the history and cure of diseases. London: T Payne, 1802.
- Nable, EG. Braunwalk,E. “A Tale of Coronary Artery Disease and Myocardial Infarction” N Engl J Med, 2012; 366:54-63.
- Lasby, C. Eisenhower’s Heart Attack. University of Kansas Press, 1997. p 72.
- Didion, J. “The Year of Magical Thinking” Vintage Books, 2007. p 10.
- Heberden, W. Commentaries on the history and cure of diseases. London: T Payne, 1802.
- Stokes, W. The diseases of the heart and the aorta. Dublin: Hodges & Smith, 1854.
- Hilton, J. Rest and Pain. London : G Bell & Sons Ltd, 1863.
- Nable, EG. Braunwalk,E. “A Tale of Coronary Artery Disease and Myocardial Infarction” N Engl J Med, 2012; 366: 54-63.
- Lasby, C. Eisenhower’s Heart Attack. University of Kansas Press, 1997. p 155-199.
- Levine, SA and Lown B. “Armchair Treatment of Acute Coronary Thombosis.” JAMA, 1952;148: 1365-9.
- Hellerstein, HK. A Matter of Heart. Caldwell, ID: Griffin Publishing; 1994.
- Rothberg, MB. “Coronary Artery Disease as Clogged Pipes: A Misconceptual Model” Circ Cardiovasc Qual Outcomes, 2013; 6:129-132.
- Wenger, NK. “Is Cardiac Rehabilitation Necessary?” Br Heart J. 1992 Feb; 67(2): 206-207.
- Lorig, KR, Holman, H. “Self-management Education: history, definition, outcomes and mechanisms. Ann Behav Med, 2003; 26:1-7.
- Borg, G. Borg’s Perceived Exertion and Pain Scales. Human Kinetics. 1998. p 2-9
- About the origin of the word grokking. https://www.merriam-webster.com/dictionary/grok (accessed January 10, 2017).
JANICE P. KEHLER, PT, MSc, MA, and CHRIS KEHLER, MD, have worked with patients that have heart disease in health care settings in both Canada and the United States. The foundation for this essay was built not only on their work in different medical systems but also professional careers that spanned the continuum of care for over thirty years: Chris as a cardiac anesthesiologist and Janice as a physiotherapist. Unearthing the best practices for these overlapping life experiences has been their professional quest.