Questioning the universality of medical ethics: dilemmas raised performing surgery around the globe.
Over the past two decades, I have routinely taken time from clinical practice to teach, practice, and perform eye surgery in remote locations. I've enjoyed the privilege of vastly broadening both my professional skills and global perspective while working with some of the most devoted and selfless health care workers I've encountered in my career. From Mongolia to points along the ancient Silk Route, to the deep Himalayas, to Southeast Asia, to sub-Saharan Africa, many of the locations where I've worked lack basic facilities including potable water, reliable electricity, and proper sanitation. Nearly all lack what an ophthalmologist considers requisite for even the most basic intraocular surgery: adequate illumination and magnification. If available at all, the precise instrumentation necessary to manipulate tissue within the eye is usually worn or broken due to overuse and repeated repair. Cutting instruments are blunt; forcep tips no longer meet. Disposable equipment acquired through donation is meticulously cleaned and reused far beyond its intended lifespan, and medications are routinely expired or implicitly understood to be the "best available." Surgical gloves and sutures are resterilized and used as long as possible. Dressings are ingeniously fashioned from material of every imaginable sort. Indeed, resourcefulness and ingenuity are the unique and necessary attributes of doctors and their staff throughout the developing world.
I am always presented with highly advanced pathology when working abroad, due in part to a chronic shortage of trained medical personnel and resources. Whether their ailments are secondary to trauma or to neglected or indolent disease, indigent patients usually seek care only when there is no alternative. The numbers are shocking: According to the most recent World Health Organization estimates, approximately 87 percent of the 314 million visually impaired live in developing countries; roughly 45 million are completely blind. (1) About 85 percent of all visual impairment and 75 percent of blindness could be prevented or cured. (2) While procedures performed to save or restore sight do not directly save lives, they are nevertheless crucial to survival in subsistence-level societies. A blind person often represents an untenable responsibility for both the family and the community. It is believed that 60 percent to 80 percent of children who become blind in the developing world die within two years. (3) A Nepalese proverb conveys the economic reality most concisely: "A blind person has a mouth but no hands."
In all of medicine, there is a unique burden associated with the decision to perform surgery. This arises, I suspect, from the very nature of an operation's invasiveness, and is compounded by the unpredictable perils of intraoperative and postoperative complications. In the industrialized world, a surgeon's decision to operate is not only strongly supported by well-defined ethical principles, but also facilitated by procedural tools that help to ensure the maintenance of these principles in daily practice. The most well-known is perhaps the Hippocratic edict to do no harm. Every graduating medical student is required to recite this commandment and implicitly understands it to be the sine qua non of ethical practice. During the course of training, we are also taught to adhere to our community's "standard of care," apply principles of "triage" where there are mass casualties or numerous emergencies requiring prioritization, and obtain "informed consent" prior to performing a procedure. The universality of these fundamental concepts is unquestioned.
So let us set off together on a typical mission, having packed our antimalarials, disinfectants, and sunscreen, our medical kit, basic examining equipment, and our ethical armamenterium, too. We'll typically travel for days before we reach our final, dusty destination, arriving unwashed and exhausted. With luck, there will be hot water and a few hours of sleep before we're awakened and politely asked if we're ready to begin. There will be throngs of patients quietly waiting, many of them having been there for days. Drawing from notes taken on an actual day of screening patients in a remote West African village, join me in exploring the nature and the frequency of the ethical challenges that present themselves:
A five-year-old boy is the twenty-first patient screened, and it is only midmorning. I have already examined many villagers who are blind from common ocular diseases. Cataracts (cloudy lenses) and glaucoma (elevated pressure within the eye) always lead the list; (4) infections from poor hygiene and injury are rampant as well. (5) The electricity has failed again in this northern Ghanaian village, and I make do by the light of a distant window in a one-room, earthen schoolhouse. A translator does his best to facilitate communication between the three languages spoken here, simultaneously keeping order among the two hundred or so curious villagers who crowd in. Just outside the window, children sing and play on the packed red dirt. Women pound sorghum and chickens strut amidst the activity. There are no modern medical facilities anywhere in this region. Except for my presence, the scene is utterly timeless.
By most accounts I hear, the five-year-old sustained a penetrating injury to his right eye roughly six weeks ago. An opacifying lens quavers behind his deformed, ovoid pupil, weakly supported by torn tissue. The eye has begun to turn inward from disuse, and the pressure inside the eye is very high. Luckily, neither the injury nor the application of a sticky paste made by a local healer has led to infection, and while the boy can see only the shadow of my hand pass in front of his face, he smiles broadly. Once again, I am moved by the quiet displays of courage and dignity exhibited by so many without means across the globe.
A decision must be made regarding surgery. Like every experienced surgeon, I quickly weigh the objectives and risks in this complex case: It is necessary to remove dirt and debris from the injured eye to reduce inflammation and lower the risk of late infection. Permanently lowering the pressure within the eye is also required to prevent irreversible damage to the optic nerve. The iris must be reconstructed and a new pupil fashioned. Finally, the unstable and cloudy lens must be safely replaced with an artificial one of appropriate focusing power for a growing child. Speed is essential, as sight restoration in a maturing eye is crucial for proper visual development to take place. If this child's eye is not repaired soon, it is condemned to permanent blindness. Yet serious complications and the potential to make things worse are very real possibilities.
The chief of the village and I discuss the many ramifications of what must be a joint decision. He explains that for generations, this region has entrusted the care of its suffering to "traditional" healers. In fact, in some parts of Africa, up to 80 percent of the population rely on traditional healers for their primary care. (6) A respected and familiar presence, a local healer just like this has cared for the boy until now. While I am an honored foreigner, I am nevertheless a newcomer with unproven skills. As in remote areas nearly everywhere I have worked, stories of those cared for by unknown healers with new, unfamiliar techniques whose outcomes have been unsuccessful quickly become cautionary tales for those considering nontraditional options. I explain that cutting the child's eye is the only means of saving his sight, but that doing so introduces the possibility of losing what little vision remains. Should a serious infection occur, it may be necessary to remove the eye and even the surrounding structures, disfiguring the boy. The alternative is to do nothing, which will eventually leave him with a blind and possibly painful eye. Worse still, leaving things as they are may lead to inflammation and even blindness in the other eye as a result of an autoimmune reaction.
Opportunities for care in the developing world are scarce. The continent of Africa has roughly one ophthalmologist for every one million people. (7) Surrounded by desperate and overwhelming need (not unlike the Napoleonic battlefield setting for which the medical concept of triage was conceived), the visiting surgeon must rapidly select the patients most appropriate for care. As time and resources are always limited, identifying those most suitable for intervention raises compelling questions.
On the same day, for example, many other villagers who were screened required surgery to preserve or restore their sight. The chief of the village himself had complete and painless loss of vision in one eye from open-angle glaucoma, a condition endemic in West Africa. (8) His other eye had nearly total loss of peripheral vision as a result of the same progressive condition, leaving him with only central vision--akin to looking through a straw.
In the industrialized world, an advanced form of open-angle glaucoma would be treated initially with medications and/or laser. In the developing world, however, it is often approached as a "surgical disease." There are several eminently practical reasons for this. Surgery in remote locations costs about the same as two or three months of chronic treatment with medications and therefore represents the most economically viable alternative for the vast majority of patients. The repeated testing required to monitor the insidious progression of this disease (also known as the "thief in the night") and the continual readjustment of medications necessary to achieve an adequate lowering of pressure are problematic at best. A successful operation often comes closest to a "cure" for this second most common cause of blindness in the world. (9)
However, surgical treatment of open-angle glaucoma is not without formidable challenges and risks. The availability of postoperative medications, patient compliance, hygiene, and wound care are all chronic hurdles in agrarian societies. Obligatory postoperative follow-up during the first month or two after surgery in the absence of nearby facilities or reliable transportation is difficult to impossible. Finally, as glaucoma surgery often hastens cataract formation, many patients refuse treatment when informed that the need for cataract surgery will likely follow.
Another patient examined that morning, a mother of six, presented with a narrow-angle form of glaucoma that, untreated, usually leads to a more rapid loss of sight. Each of her five siblings and both of her parents had gone blind by their midforties, most likely due to a shared genetic predisposition to this form of glaucoma. The most effective treatment would require removal of her early and asymptomatic cataracts to prevent blindness. Such an act of faith on the part of willing patients would lead to dependence on glasses, an impractical and unpopular option in the bush.
Still other villagers were blind from cataracts alone (the number one cause of preventable blindness in the world (10)) caused by the varied effects of chronic and intense sunlight exposure, injury, malnutrition, bouts of dehydration from diahrreal disease, and aging. Some suffered from trachoma, an infectious disease causing scarring of the lids, in-turning of the lashes, and eventual clouding of the cornea--the clear window in the front of the eye. Trachoma is responsible for almost one-quarter of global blindness, or approximately 2.2 million Africans. (11) I diagnosed numerous other diseases affecting the front of the eye, some requiring corneal transplantation, medications, or other treatment modalities beyond the scope of available services. Patients with diseases affecting the delicate structures in the back of the eye (seldom even examined due to the chronic absence of dilating drops), were diagnosed and referred to the nearest urban clinic for treatment. This advice was always received with quiet resignation and was rarely followed. Given the shortage of time and resources, it was difficult, as usual, to select which patients would receive surgical treatment.
While principles of triage were originally devised for application to mass casualty scenarios, they are commonly utilized in any setting where conventional levels of medical care cannot be delivered to all patients. Patients are typically divided into three groups: those who will stand to benefit least from intervention, regardless of treatment; those who will likely improve, regardless of treatment; and those who will benefit only with treatment. Priority is therefore given first to those who stand to benefit most from optimal care. Applying principles of triage to large populations of chronically underserved and suffering patients is clearly problematic. (12) With the knowledge that care could only be delivered to some of the villagers screened that day, would the best surgical candidates be those expected to have the highest probability of "success"? A powerful argument can be made for selecting those patients with the greatest responsibility for others. What of those with the most profound disability? Still others would clearly benefit most from the expertise being offered during this rare opportunity. What ethical principles and procedural tools assist us in making these weighty decisions? Should concepts of triage be broadened to incorporate factors such as patient longevity, pain and suffering, activities of daily living, societal responsibility, and the rarity of treatment opportunities?
What level of care should the surgeon expect of himself or herself? What level of "success" should the patient reasonably anticipate? In the developed world, the term "standard of care" refers to a diagnostic and treatment process that a clinician is expected to follow for a certain type of patient, illness, or clinical circumstance. In legal terms, it refers to the level that the average, prudent provider in a given community would practice--to how similarly qualified practitioners would have managed the patient's care under the same or similar circumstances. In technologically advanced societies, reference to the standard of care not only assists physicians in daily decision-making, but its adherence is carefully sought in cases of questionable malpractice.
Applying a "foreign" and comparatively advanced standard of care to the developing world is fraught with problems, though. Wherever I volunteer, I am presented with a broad population of symptomatic patients. Following the basic principles of triage, nearly all those I select for surgery will likely decline in the absence of intervention and can be reasonably expected to improve with an operation. However, many difficult operations in the developing world carry both more risks and higher rates of complication than are considered acceptable at home. Advanced treatment alternatives sometimes require unexpectedly extended postoperative management, although that can be difficult to predict. Subspecialists who offer a relative "safety net" for the most challenging cases and their complications are nearly always inaccessible in remote locations. A great ethical conundrum therefore arises for the foreign doctor arriving with new skills and technology: Against what measure should surgical outcomes be compared?
Since by definition, a standard of care is community-based, my native standard of care is as inapplicable to foreign populations with rampant, severe disease and insufficient facilities as my host's standard of care would be in my community. My host's standard of care will not yet incorporate the advanced skills or technology I might offer. While I can treat patients who would otherwise receive no care in my absence, local resources might not support the outcome. With no standard yet established, deciding whether a complex procedure should be withheld or offered becomes ever more challenging. Left with the sole certainty that the lack of surgical intervention will lead to inevitable decline, what other tools might provide assistance?
One such procedural tool embraced at home and considered a basic tenet of medical practice is obtaining "informed consent." A well-intentioned ethical imperative, informed consent aids in securing a patient's understanding of (and agreement to) the proposed treatment plan. It is, however, a process that assumes certain basic and shared cultural values. In our industrialized, media-saturated, and even litigious environment, physicians can expect to encounter a level of sophistication, caution, and even medical consumerism regarding treatment risks and their alternatives. In contrast, in many less developed locations throughout the world, traditional healers are commonly believed to possess mysterious and even magical abilities to ease suffering in ways that, by definition, transcend and defy understanding. As happened in the case of the five-year-old Ghanaian boy, in attempting to transport the best intentions of informed consent across cultural boundaries, I witnessed the near dissolution of the most fragile and essential ingredients that bond patient, family, and community to healer: hope and trust. The culture in which I was practicing medicine, like many (I have come to learn), equated skill with wisdom, wisdom with conviction, and masculine conviction with action. In the presurgical setting of heightened fear and expectation, informed consent was interpreted as a lack of professional confidence or "faith." This almost led to a tragic refusal of sight-saving surgery. How, then, do we reconcile a deeply held sense of moral duty to convey risks and potential complications to patients who may find this degree of scientific objectivity unfamiliar, frightening, and even alienating?
The boy did undergo surgery, and he was showing signs of significant improvement by the time of my departure. While by the principles of triage he was suitable for treatment, many other patients had better prognoses under the circumstances. Given the inherent risks involved, the complexity of surgery, the need for aftercare, and the anticipated lack of follow-up, there were no existing codes or protocols to aid me in my decision to choose this patient over others. I flew without a moral compass, relying instead on a complex set of internal gauges called professional instinct. They've been informed by dictum, refined by experience, and wonderfully confounded by humanity. We live and practice in a complex and varied world.
Indeed, few universally applicable principles or protocols may truly exist regarding ethical medical practice beyond the values of beneficence, patient autonomy, and preservation of patient dignity. Even Hippocrates' edict is insufficient when surgery is the only option, as the risks of complications are implicit in its very undertaking. Compelling questions abound: How do we select those most "deserving" of scarce surgical services in the setting of chronic and mass suffering? Can the principles of triage be broadened to incorporate socioeconomic factors, palliative considerations, and the rarity of treatment expertise? What ethical tools can we draw upon to facilitate clinical decision-making when both ends of the risk-benefit equation are particularly stark, which is so often the case in underdeveloped regions? What standard should surgeons set for themselves and for their patients' outcomes when each relies heavily on resources that are simply unavailable? How do we reconcile our sense of obligation to explain risks when our patients may not share our preference for scientific exactitude over faith?
Far from mere intellectual exercises, these questions have immense practical import, and no ready answers. In the absence of teaching facilities, adequate trained personnel, proper equipment, and available transportation, a mass of humanity suffers from disease for which treatment is available but is either entirely out of reach or considered too risky. Historically unimaginable disparities between medical services in socioeconomically privileged and "developing" nations force the well-intentioned volunteer surgeon to condition his or her previously unquestioned ethical framework to local circumstances. Transporting new surgical skills across time zones that represent decades-old expertise and technology, we must continually refocus the lens through which we view patient and procedure selection.
Despite a long and proud history of international volunteerism, a review of the medical literature reveals that little has been written on the importance of modifying the familiar ethical tools appropriate for the foreign environment in which one practices. That this task requires the highest levels of intellectual honesty and moral self-scrutiny should be self-evident. That it requires cultural humility makes it demanding. The very challenge may alienate some in the profession for precisely these reasons. Others may bristle at the idea of modifying heretofore-unchallenged ethical precepts. However, for those who have elected to leave the comforts of their modern practices and step into a world little changed for centuries, I suspect these questions will ring true. They are fundamental, profound, and difficult.
(1.) World Health Organization, "Global Initiative for the Prevention of Avoidable Blindness," WHO/PBL/97.61 (Geneva, Switzerland: World Health Organization, 1997).
(3.) S. Lewallen and P. Courtright, "Blindness in Africa: Present Situation and Future Needs," British Journal of Ophthalmology 85, no. 8 (2001): 897-903.
(4.) World Health Organization, "Visual Impairment and Blindness," WHO Fact Sheet 282, http://www.who.int/mediacentre/factsheets/fs282/en/.
(5.) World Health Organization, "Vision 2020: The Right to Sight. Global Initiative for the Elimination of Preventable Blindness, Action Plan 2006-2011," http://www.who.int/blindness/Vision2020_report.pdf.
(6.) World Health Organization, "Traditional Medicine," http://www.who.int/mediacentre/factsheets/fs134/en/.
(7.) A. Sommer, "Global Health, Global Vision," Archives of Ophthalmology 122, no. 6 (2004): 911-12.
(8.) C. Cook, "Glaucoma in Africa: Size of the Problem and Possible Solutions," Journal of Glaucoma 18, no. 2 (2009): 124-28.
(9.) World Health Organization, "Vision 2020; The Right to Sight."
(10.) World Health Organization, The World Health Report--Life in the 21st Century: A Vision for All (Geneva, Switzerland: World Health Organization, 1998), 47.
(11.) Lewallen and Courtright, "Blindness in Africa"; V.H. Hu et al., "Epidemiology and Control of Trachoma: Systematic Review," Tropical Medicine and International Health 15, no. 6 (2010): 673-91.
(12.) D. Sontag, "Doctors Haunted by Haitians They Couldn't Help," New York Times, February 10, 2010.
Aron D. Rose, "Questioning the Universality of Medical Ethics: Dilemmas Raised Performing Surgery around the Globe," Hastings Center Report 41, no. 5 (2011): 18-22.
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|Author:||Rose, Aron D.|
|Publication:||The Hastings Center Report|
|Date:||Sep 1, 2011|
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