Ethics plays a large role in the practice of medical oncology. Because the study of oncology deals so heavily with life or death decisions, physicians are often asked to make ethically difficult choices with their patients. Oncologists may be better equipped to deal with these challenges by being made aware of the related ethical questions in their practice and of the current literature surrounding those questions. We have chosen to focus on three ethical challenges that we believe practicing oncologists might commonly encounter with their patients. The ethical dilemmas are presented in a case-based approach in the hope of better joining the ethical theory to clinical practice.
1. Cost of Therapy
A 50-year-old male patient presents to your clinic with new-onset headaches, fatigue, weight loss, and left extremity weakness. Magnetic resonance imaging (MRI) of the brain shows a large heterogeneous infiltrating right hemispheric mass. Further workup reveals a glioblastoma multiforme. After surgical resection, the patient is sent to you to start treatment with temozolomide (Temodar). He is self-employed, has no health insurance, and has a gross income of about $45,000/year. You want to begin therapy but are mindful of the financial implications of continuing with treatment and all its associated costs. What are your obligations to provide this patient with temozolomide if he cannot afford it?
At the core of every healthcare system is the challenge of treating populations with finite resources. This universal fact makes decisions concerning distribution of resources a significant concern. The rising cost of healthcare in the United States, coupled with underperformance in many outcome measures compared with similar developed nations, raises questions about whether we are distributing resources effectively and fairly. Sulmasy comments that “decisions to distribute resources will always be moral decisions, informed by concepts of justice.” This concept is usually termed distributive justice. Beauchamp and Childress point out that distributive justice applies to the “distribution of all rights and responsibilities in a society, including civil and political rights.”
Although allocation of resources is a controversial topic, it is useful to examine how the means of making allocation decisions may already be at work in our healthcare system. Beauchamp and Childress describe six principles of distributive justice that underpin allocation of resources in a healthcare system. Resources might be allocated to each person according to these principles: (1) equal share, (2) need, (3) effort, (4) contribution, (5) merit, and (6) free-market exchanges. Historically, the United States has worked under the principle of “to each person according to free-market exchanges,” meaning that resources are rationed according to whether a patient can afford to pay for them, either through his or her own means or by virtue of having access to health insurance. Free-market exchanges as a basis for determining healthcare allocation decisions have proven difficult because, unlike in other circumstances in which consumers purchase goods, “the consumer patient is not generally in control of purchasing decisions.” The Lancet Oncology Commission, which developed a report on delivering affordable cancer care in high-income countries, found that healthcare does not conform to the principles of an ideal market. The Lancet Commission argued that there is an inherent inequality in information and power relationships between buyers and sellers. Analyzing our case above, if the decision is to be made according to free-market exchange principles, the patient should not receive temozolomide because he cannot afford it.
The healthcare provider is thus in the difficult, but increasingly common, position of being asked to consider directly the cost of therapy, including the cost of the drug itself and the cost to the patient, when discussing therapy options. Generally, physicians are uncomfortable with engaging in such allocation decisions at the bedside. A 2006 survey by Nadler found that as many as 81% of physicians consider their patient’s out-of-pocket expenses when determining therapy, although it is unclear to what extent allocation decisions are made in real practice by individual physicians about individual patients. Sulmasy comments that “many health care policy analysts and ethicists have argued that…the only point in the system at which one could effectively ration health care would be through the individual practitioner.” Some analysts and ethicists believe physicians should play an instrumental role in balancing the needs of their patients and those of society.[1,5] One reason that physicians are generally uncomfortable being placed directly in the position of making allocation decisions about individual patients at the bedside is that their strongest obligations to advocate on behalf of patients are then brought into conflict with obligations to the greater societal good.
Under these circumstances, physicians often feel that they are bound by an oath to act in the patient’s best interest and so perceive that they must provide beneficial therapies that have been shown to significantly prolong overall survival. We would suggest reframing this obligation, however, since physicians cannot in reality be ethically obligated to provide the temozolomide. Rather, we would argue that physicians must (1) provide information about the relative risks (including financial risks) and potential benefits of the therapy in question, including the alternatives and their risks and benefits; and (2) attempt to use all reasonable means to help the patient obtain the medication if he or she makes an informed decision to take it. This might include seeking charity sources, patient assistance programs, or even, in some cases, providing the treatments at cost if they can be reasonably balanced against other sources of revenue. That physicians must provide a beneficial treatment at all costs, even personal costs, is clearly not an ethical obligation under any framework of professional ethical practice.
It is also useful to recognize that physicians may have particular views of the cost-effectiveness of the therapies they offer, and that patients’ views may in fact differ from those of physicians, although patients’ attitudes in this area remain largely unexplored. For example, when asked about cost-effectiveness, the median implied cost-effectiveness threshold among oncologists was $280,000 per quality-adjusted life-year (QALY), which is well above the standard $50,000/QALY used by health policy experts. Indeed, in this same study, at least one oncologist replied that the addition of 1 day of life would justify a $70,000/year cost, which was the equivalent to $25 million/QALY.
The challenge in this particular patient’s case begins with a discussion of the true risks, benefits, and costs of the therapy in question; an exploration of whether charitable and other resources can be brought to bear on the patient’s access to the drug; and a careful understanding of the patient’s goals of treatment and his views of cost-effectiveness, given that his own personal finances may be at risk.
1. Sulmasy D. Cancer care, money, and the value of life: Whose justice? Which rationality? J Clin Oncol. 2007;25:217-22.
2. Beauchamp T, Childress J. Principles of biomedical ethics. 6th ed. New York: Oxford University Press, Inc; 2009;333-63.
3. Sullivan R, Peppercorn J, Sikora K, et al. Delivering affordable cancer care in high-income countries. Lancet Oncol. 2011;12:933-80.
4. Nadler E, Eckert B, Neumann P. Do oncologists believe new cancer drugs offer good value? The Oncologist. 2006;11:90-5.
5. Morreim EH. Fiscal scarcity and the inevitabillity of bedside budget balancing. Arch Intern Med. 1989;
6. Butow PN, Dowsett S, Hagerty RG, Tattersall MH. Communicating prognosis to patients with metastatic disease: What do they really want to know? Support Care Cancer. 2002;10:161-8.
7. Hagerty RG, Butow PN, Ellis PM, et al. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol. 2005;16:1005-53.
8. Bradley EH, Hallemeier AG, Fried TR, et al. Documentation of discussions about prognosis with terminally ill patients. Am J Med. 2001;111:218-23.
9. Lamont E, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001;134:1096-1105.
10. Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatrics Soc. 2003;51:1398-1403.
11. Marwit SJ, Datson SL. Disclosure preferences about terminal illness: an examination of decision-related factors. Death Studies. 2002;26:1-20.
12. Kaplowitz SA, Campo S, Chui WT. Cancer patients’ desire for communication of prognosis information. Health Comm. 2002;14:221-41.
13. Schofield PE, Butow PN, Thompson JF, et al. Psychological responses of patients receiving a diagnosis of cancer. Ann Oncol. 2003;14:48-56.
14. Zhang B, Wright A, Huskamp H, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009;169:480-8.
15. Earle CC, Neville BA, Landrum MB, et al. Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol. 2004;22:315-21.
16. Barnato AE, McClellan MB, Kagay CR, Garber AM. Trends in inpatient treatment intensity among Medicare beneficiaries at the end of life. Health Serv Res. 2004;39:363-75.
17. Emanuel EJ, Ash A, Yu W, et al. Managed care, hospice use, site of death and medical expenditures in the last year of life. Arch Intern Med. 2002;162:1722-8.
18. Yu W. End of life care: medical treatments and costs by age, race and region. Health Services Research and Development study IIR 02-189. Arch Intern Med. 2009;169:480-8. Available from: http://archinte.jamanetwork.com/article.aspx?articleid=414825. Accessed January 10, 2013.
19. Bedell SE, Delbanco TL. Choices about cardiopulmonary resuscitation in the hospital. N Engl J Med. 1984;310:1089-93.
20. Blackhall LJ, Cobb J, Moskowitz MA. Discussions regarding aggressive care with critically ill patients. J Gen Intern Med. 1989;4:399-402.
21. Wilson JF. Cancer care: a microcosm of the problems facing all of health care. Ann Intern Med. 2009;150:573-6.