Case
Mr. F was a veteran construction worker living with his wife and two children when, in 1989, he developed severe back pain and rapid onset of paresthesias, pain, and limited mobility in his lower extremities. He was diagnosed with a primary spinal epidural non-Hodgkin’s lymphoma (NHL) and underwent laminectomy to relieve spinal compression. But the nerve damage was severe and Mr. F continued to experience peripheral neurological deficits, including persistent pain.
Mr. F’s pain was managed on methadone, which has the advantages of being a long lasting agent as well as inexpensive. His chronic pain prevented him from returning to work, and the family’s only source of income was his Social Security disability check, which was frequently not enough to cover all of their expenses. Mr. F’s NHL recurred in 1998 as a localized cranial tumor (“the size of an orange”). After undergoing a partial skull excision with follow-up chemotherapy, Mr. F began experiencing depression; financial strains forced him to sacrifice or space out his pain medication refills. During these gaps, he started to rely on alcohol to treat his pain. Methadone accentuates the effects of sedative hypnotics, such as alcohol, so Mr. F quickly developed dependence. The financial stress combined with alcohol use led to his wife’s leaving him, and, with only his disability for income, he became homeless.
Over the next 4 to 5 years, Mr. F moved among local shelters. Many shelters prohibit or enforce strict limitation on use of narcotic pain medications, and drove Mr. F to use high levels of alcohol as he attempted, in effect, to achieve the sedation of alcohol+methadone). In 2004, Mr. F was diagnosed with severe cirrhosis secondary to viral (B/C) and alcoholic hepatitis. In 2006, variceal rupture led to his first GI bleed, and he has been in the hospital ED six times since for upper and lower GI bleeds and many additional times for alcohol intoxication.
During one of his encounters for persistent upper and lower GI bleeding, Mr. F was admitted to the ICU with a severely low hematocrit and hypotension. Bleeding could only be controlled with local injections of epinephrine throughout the GI tract. The evening after admission, Mr. F developed refractory tachycardia requiring electrical cardioversion. The resident on call remarked that the patient’s only hope was a liver transplant, even though he “obviously” was not eligible. The resident spent the rest of the night calling area hospitals pleading with them to consider Mr. F for a TIPS procedure.
During one of his encounters for persistent upper and lower GI bleeding, Mr. F was admitted to the ICU with a severely low hematocrit and hypotension. Bleeding could only be controlled with local injections of epinephrine throughout the GI tract. The evening after admission, Mr. F developed refractory tachycardia requiring electrical cardioversion. The resident on call remarked that the patient’s only hope was a liver transplant, even though he “obviously” was not eligible. The resident spent the rest of the night calling area hospitals pleading with them to consider Mr. F for a TIPS procedure.
Commentary 2
Mr. F's story is tragic, but unfortunately not uncommon. Two important issues are raised by his case: responsibility for health status and scarce resource allocation.
In terms of responsibility, as the case commentary highlights, it is often suggested that individuals who are “morally responsible” for their illnesses (and, therefore, their health needs), and may have been able to avoid them through different decision making, have a weaker claim on social resources than do individuals whose health needs are no fault of their own. Wikler describer an approach towards assessing individual responsibility for health needs in 2002. To be assigned individual responsibility for one’s needs, Wikler said:
1. the needs must have been caused by the behavior
2. the behavior must have been voluntary
3. the persons must have known that the behavior would cause the health needs and that if they engaged in it their health needs resulting from it would receive lower priority [1].
Such criteria are not easily satisfied, especially in cases of substance abuse and the influence of barriers to health care related to lower socioeconomic status. In the present case, for example, was Mr. F’s health need created both as a result of his alcoholism and as a consequence of the medical system’s inability to offer effective pain management? The patient’s homelessness and continual lack of health resources such as primary care, can also be considered contributing factors. In other words, analysis of the case from a micro (patient) and macro (society and medical system) perspective results in two sources of accountability, and either by itself is insufficient in accounting entirely for the decisions patients make. And, as the case commenter suggests, delivering care based on determined responsibility is not within the norms or goals of medicine. The medical profession is one in which needs are evaluated and met whether or not an individual is deemed “deserving” of care.
This egalitarian approach, however, is not always practical when allocating scarce resources and evaluating cost-effectiveness. Here the question is should higher priority be given to people who can be treated more efficiently and cheaply. Immense costs and resources are required to treat Mr. F adequately. Does that mean that he should not be treated or that he has less claim on scarce, valuable resources?
Alternatively, one can turn to potential benefit as a basis of determining just allocation. In other words, if resources such as a liver transplant or continuous monitoring of pain control were dedicated to this patient, how much would it prolong or improve his quality of life? How does this compare to allocating these resources elsewhere, such as giving the liver transplant to a nonalcoholic patient without hepatitis, or taking the immense resources required to treat his chronic pain and applying them in the treatment of ten or more patients whose compliance and followup care is better guaranteed? While these notions of “fair chances and best outcomes” are important to consider (and as the author describes, they are basis of current transplant allocation guidelines), it must also be recognized that they may compound existing inequalities. For example, as this case illustrates, patients of lower socioeconomic status tend to have higher comorbidities and worse prognoses than their wealthier counterparts who may have continuous primary care, better educational opportunities, and fewer barriers to compliance. Moreover, resources are not easily fungible in the way this “solution” suggests. Dollars and resources “saved” on one patient are not shifted to the care of tens of other, less complex cases. Health care financing just doesn’t work that way.
In sum, this case clearly illustrates how the complex dynamics between micro (patient-doctor) and macro (society) perspectives influence medical decision making. While a simple resolution may not be easy to determine, the case emphasizes the importance of considering social influences on a patient’s health including reduced socioeconomic status, homelessness, stereotyping, and lack of primary care and support structures.
References
- Wikler D. Personal and social responsibility for health. Ethics Int Aff. 2002;16(2):47-55.