I have a predilection for reading books about medicine and nursing, and nothing pleases me more than discovering yet another satisfying or thought-provoking read, of which there have been many, and of which I fully expect hundreds more such experiences.
Apropos of such literary leanings, today's praise report involves Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship by Jay Neugeboren. The author is best known for his book Imagining Robert, the story of his brother's struggles with mental illness and the burdens born by the families of individuals thus afflicted.
Open Heart tells the story of Mr. Neugeboren's experience as a man of more than sixty years of age, who, in excellent and athletic physical condition, experiences symptoms which go misdiagnosed for months, eventually leading to emergent quintuple-bypass surgery which saves his life. In the process of telling his story, the author not only communicates wonder over the technological developments which contributed to his survival. Mr. Neugeboren delves deep into the psyche of lifelong friendship, its importance to quality of life, and the challenges faced by the patient who confronts an often splintered and impersonal healthcare bureaucracy. His insights into the world of medicine, doctor-patient relationships, as well as his relative position as a upper-middle-class author whose well-heeled and educated childhood friends---all of whom are doctors, by the way---contribute to his well-being through their advocacy, professional connections, and knowledge.
There are many ironies addressed in Open Heart, not the least of which is the notion that, even given his relative privilege and access to high quality healthcare, several of Mr. Neugeboren's medical providers completely missed his tell-tale signs and symptoms of ischemic heart disease, putting him at great risk of debilitating illness and eventual death by myocardial infarction or stroke. That said, the author also is very determined to clearly acknowledge the additional (and enormous) privilege of having well-educated doctors within his closest circle of friends, all of whom went out of their way to support him, advocate for him, and procure for him the finest surgeons, hospitals, and medical treatment possible within the American healthcare system.
Despite (or perhaps in response to) his own class privilege and elevated societal status as a successful author, Mr. Neugeboren spends a great deal of time discussing what is wrong with American healthcare, eventually coming to the conclusion that access to appropriate, high-quality, affordable, and timely healthcare is the crux of the challenge facing the United States today vis-a-vis the health of its citizens. While he does not offer specific policy solutions to resolve the current healthcare crisis, the author does indeed use citations of appropriate literature to drive home the conclusion that the American healthcare system is broken, the poor are often left out in the cold, and that too many Americans go without healthcare in a country which spends more per capita on healthcare than any other industrialized nation. Taking his findings further, Mr. Neugeboren extrapolates his conclusions further into a global picture, wherein AIDS and other controllable diseases continue to ravage less developed countries, mostly due to a lack of political and economic will on the part of the United States and its economic peers. To wit,
"Valuing freedom of choice over constraints, and individual freedom over government regulation in the specific ways Americans do, we seem a long way from knowing how and when, if ever, we will be able, if in inevitably imperfect ways, to set reasonable and effective national healthcare policies."
The doctor-patient relationship also plays a significant role in Open Heart, and Neugeboren describes how managed care, too much reliance on technology, and the economic pressures which drive the American healthcare system have only served to undermine the trust between patient and doctor. He continues,
"We might begin, if only begin, it occurs to me, by thinking in terms of what my friends and I have been talking about---providing those contexts in which greater access to care, continuity of care, long-term care, preventive measures, and public health measures are encouraged and endowed. If, too, we restore the doctor-patient relationship to a central position in medical care, and if we avail ourselves of the marvelous technologies that exist while at the same time remaining skeptical of those technologies that are more expensive than they are curative (and that cause us to neglect more urgent health-care needs), then, I say, we have a pretty good shot at making it happen."
Neugeboren outlines how American tobacco companies prey on the young and the poor---both here and abroad---to make their profits while undermining the health of the world. He elucidates how access to quality care is often blocked by a class-based system which favors the wealthy and shuttles the poor to understaffed, overburdened, and poorly funded public healthcare facilities. The author also expounds how, in our post-modern awe of expensive technological advances, we have lost sight of what is most important in healthcare---the face-t0-face meeting of doctor and patient. And if that doctor is constrained from spending more than ten minutes with each patient due to increasing malpractice insurance, sky-rocketing overhead, and endless student loan repayments, this is a recipe for misdiagnoses, under-diagnosis, shoddy care, and missed opportunities for preventive measures which can ward off the advent of chronic (and ultimately expensive) disease.
On a global scale, one of the author's closest friends, Jerry Friedland, a medical doctor committed to fighting AIDS in Africa, describes his frustration at the (as of 2002) inadequate response to AIDS in Africa by the industrialized world. Taking a potentially controversial stance, Mr. Friedland and Mr. Neugeboren describe how Americans are quick to respond to sudden catastrophes---like 9/11, where 3,000 people died, however tragically---with fervor and purpose, yet, in the face of a long-term catastrophe like AIDS, we lose our momentum, even in the face of more than 3 million deaths per year in sub-Saharan Africa alone. Of course, they hasten to add, 9/11 was a watershed moment for the world and deserved the attention which it garnered, yet the relative loss and destruction inherent in that singular event cannot compare numerically with the ravages of worldwide disease, antibiotic-resistant organisms, global poverty, famine, ongoing war, and genocide. According to Dr. Richard Horton, the editor of The Lancet, "the major issue in medicine is not one of maintaining the pace of discovery, but of making sure there is equitable access, throughout the world, to the discoveries we have already made."
Citing studies by the World Health Organization, Neugeboren implores the reader to comprehend that, between 1990 and 2020, "unipolar depression (also called clinical depression) is second behind ischemic heart disease, in rank order of the global burden of disease (a measure of health status that quantifies not merely the number of deaths but also the impact of premature death and disability on a population)." He also cites a study stating that, "of the ten leading causes of disability worldwide, five are psychiatric conditions (depression, alcoholism, bipolar disorder, schizophrenia, and obsessive-compulsive disorder)." Food for thought.
Immunization, preventive healthcare, sanitation and hygiene, screening technologies, life-saving medicines---these are all well-understood tools in our arsenal against disease, yet economic constraints, xenophobia, and lack of political will often prevent such simple technologies from reaching those most in need. Lobbyists for the tobacco, alcohol, and firearm industries fill the halls of our Capitol every day, squeezing out the small voices who call for parity, justice, and equal access to quality healthcare for all. It is a sad state of affairs, and authors like Jay Neugeboren are able to bring such disparities to bear with wit, wisdom, and personal reflection.
Open Heart not only explores the challenges of personal, national, and global healthcare in the 21st century. It is also an ode to friendship, to connection, to self-reflection, and to gratitude for life. From the micro to the macro, from the familiar to the foreign, we are urged to consider the whole, be it our best friend down the street or an AIDS orphan in Niger. There is no qualitative difference between your visit to your local doctor and that orphan's need for a 20-cent immunization against measles. But there is a quantitative difference, and that orphan, sadly, is much more likely to be denied what she needs to survive.
We have a choice, and Mr. Neugeboren has given us a gift to once again see that choice clearly. I, for one, accept that gift gratefully, and will continue to bear in mind the lack of such a qualitative difference between me and that orphan, and will use my voice to remind others of her equal right to life, liberty, health and the pursuit of happiness.