A 45-year-old with no past medical history presented to the emergency department with altered mental status. He was found face down in his driveway with no memory of an inciting event, or of his ride to the hospital. In the emergency department, the patient revealed that for the past two months he has experienced headaches, dizziness and left-sided weakness. On a hospital admission two months prior the patient reported similar symptoms but left against medical advice before any meaningful diagnostic testing could be conducted. All of his symptoms had progressively worsened since his previous admission. The patient had a prompt workup for the seemingly obvious etiology of stroke, but a CT scan indicated findings more consistent with some type of encephalitis. This prompted more thorough investigation and consultation from both neurology and infectious disease.
Further testing at the guidance of these specialists soon revealed a diagnosis: HIV/AIDS complicated by a condition called progressive multifocal leukoencephalopathy (PML). PML is a severe demyelinating disease of the central nervous system that is caused by reactivation of the opportunistic JC virus that lives indolent within a majority of healthy people, but can be devastating in those living with HIV/AIDS. It is almost entirely a disease of the immunocompromised, and one of the more common AIDS defining illnesses with a prevalence of 5 percent among AIDS patients. The prognosis is dismal at best, even with highly active anti-retroviral therapy (HAART) which is the current standard of care for managing HIV/AIDS.
It was at this point, after the patient received his diagnosis and was placed under the care of our team of internal medicine doctors and residents, that he became my patient. One can easily imagine that finding out you have both HIV/AIDS and a progressively debilitating, fatal illness can have a significant impact on your emotional psyche and make it quite easy to lose hope. This patient reacted differently though: he seemed to react as if what he had, while serious in his mind, was something that he could get over. He was unable to grasp the severity of this diagnosis, and therefore had a quite positive outlook when it came to how he understood the details of his prognosis.
I believe there is an unspoken rule in medicine, one that I have picked up quickly despite my inexperience in the clinical setting: doctors are never to speak in absolutes. This means when the diagnosis and subsequent prognosis was discussed with my patient, it was done with percentages and words such as “possibly,” “more than likely,” and “indefinite,” rather than saying the words that every practitioner involved in the case was thinking: “This will kill you.” I believe that this evasive manner of speaking is often warranted as a necessary defense against not only litigation, but also false hope. However, it is by no means inconceivable that this “doctor-speak” need be above the patient’s level of comprehension. When presented with a lot of new information in this manner, my patient’s history of low health literacy, low socioeconomic status and a prior history of alcohol abuse made it very difficult for him to understand the gravity of his illness, let alone his treatment options.
At this point, an ethical dilemma arose in the team’s care of this patient. Evidence-based medicine tells us that the one-year survival rate for patients in his condition is around 20 percent. Even with expensive HAART and rehabilitation, an increase in one-year survival is minimal. Needless to say, things looked bleak at best. Despite this, the patient, with his low-level of health literacy, believed that his medications with a daily physical and occupational therapy regimen would, over time, make him “better.”
It is understood by most in the medical profession that a patient’s hope and “will to survive” are often just as important as any medicinal therapy. It became apparent to our team as the days went on that stressing the gravity of the prognosis until the patient completely understood was not a priority, because in the end what would it actually change? As time went on, the patient became more and more aware of his physical limitations despite following the daily physical rehabilitation schedule and complying with his HAART medicine. This made maintenance of his emotional status more difficult and eventually the patient understandably wanted answers. Specifically, he wanted to know what were the chances of him making it out of the hospital, being able to walk again, and returning to what he felt was an acceptable quality of life. At times, I found myself not knowing what to say to him. This was my first clerkship, and I had very little experience in dealing with such a serious situation. The patient wanted me, and all of the other doctors and medical staff caring for him, to be straight with him, but informing him of the full magnitude of his prognosis might very well crush the stable motivation and compliance with treatment that he had maintained up to this point.
This situation became a dilemma I would weigh back and forth using the principles of ethics we have been taught, specifically that of beneficence versus informed consent to treatment. Beneficence, as most understand it, implies that we try to maximize the amount of “good” we can do for the patient. This is of course in opposition to the concept of maleficence, which is the act of doing harm, intentional or unintentional. On the other hand, informed consent is the process by which a patient is educated about the purpose, benefits and potential risks of a medical intervention so that they can understand well enough to make choices about their own medical care. Would the patient consent to daily HAART and rehabilitation therapy if he truly understood that he probably wouldn’t live another year? Was that his decision to make, or that of the doctors caring for him? It is obvious that treatment is beneficial from a quality of life standpoint, and marginal increases in the patient’s functionality have occurred as a result already though ultimate survival remains bleak. However, for a patient with limited understanding of his condition, a history of poor medical compliance and leaving against medical advice, treatment was likely to seem, at the time, as an unnecessary burden on him. Maybe it is from a place of naïve inexperience that I am not as willing as my team to keep the patient in the dark for his own benefit, but I came into this experience with the opinion that everyone has the right to choose, within their own capacity, for better or for worse and it is up to us as physicians to respect the patient’s wishes.
What I have learned from this experience, however, is that it is never so black and white. In this patient’s case it meant that in order to keep him emotionally stable and motivated enough to stay in the hospital for daily treatment and rehabilitation, we had to forgo a straightforward disclosure of every nitty-gritty detail of his condition. Being a part of this experience has most certainly expanded my insight into examining each ethical situation in medicine, of which there are countless, with an open mind and more importantly an open heart. In the future, it will remain a goal of mine to be open with my patients about their medical conditions, but sensitive enough to know when full disclosure becomes maleficence.