The Case of Beth: Is More Better in Oncology?

Personal vs. Organizational Ethics in Experimental Treatment

by Rosemary Flanigan

Bioethics Forum, Fall 1995

Ethical analysis is not limited to a personal ethic. Because groups and institutions are organized to effect actions that lay beyond the capacities of individuals, there must be an ethic of such entities. Then, too, society at large has its ethic and we are often bound to stretch our moral imagination to encompass a larger picture from what is good for a single person or even an institution.

 

More Is Better

Beth, a forty-four-year-old divorced mother of two teenagers has been diagnosed with metastatic breast cancer. For two years she has undergone two courses of chemotherapy with radiation which appears to have slowed the progress of the cancer. But during her last visit to her oncologist, she is told that the symptoms are recurring and the metastases have appeared in the lungs. The oncologist suggests she undergo autologous stem cell transplantation which involves the following steps:

 

  1. The patient is given several courses of multiple agent chemotherapy to determine whether or not her cancer remains responsive to chemotherapy. If there is evidence of response, the woman is allowed time to recover from the effects of the chemotherapy, particularly the effects on the bone marrow.

 

  1. The patient is then given bone marrow-stimulating drugs and a procedure called plasmapheresis is performed to "harvest stem cells" from her blood stream. This involves being connected to a machine which separates the cells being collected, "stem cells," from other components of blood and returns the plasma and unused white and red cells to the patient. This procedure needs to be performed four to six times for approximately four hours each time to collect enough stem cells. These cells are then frozen and stored.

 

  1. The patient is then given "ablative" (very high) doses of chemotherapy and total body irradiation in order to kill any remaining cancer cells.

 

  1. The stem cells are infused back into the patient, repopulate the patient's bone marrow and, hopefully, the patient recovers but the cancer cells do not. If the stem cells (and/or bone marrow) fail to take, the patient dies. Toxicity of this treatment is obviously very high. The patient requires protective isolation for several weeks following ablative chemotherapy and total body irradiation. Treatment-related mortality varies, but is likely to be at least 25%. Failure of stem cells (and bone marrow) to take occurs in 5-10% of cases. Recurrence of breast cancer following treatment occurs in 30-50% of survivors. There are a number of other serious side effects of treatment including sterility, cataracts, second cancers and the like.

 

  1. Cost of the entire series of procedures varies but it is in the range of $75,000.

 

When Beth hears that her insurer will not pay for the procedure and that the medical center will only perform this procedure on women if the patient's third-party payor agrees to cover it, Beth asks the ethics committee to review the hospital's institutional policy.

 

 

Questions to consider in this case study:

 

  • Bioethicists in the future will continue to grapple with today's urge on the part of providers to do more experimental treatments, but when does an experimental modality become more burden than benefit?

 

  • Are different ethical principles called for when one ethically addresses experimental vs. established treatments?

 

  • This case presents ethical nuances that payment plans might easily ignore: as a single mother of two teenagers, does Beth have more of an obligation to attempt even low-outcome treatment than would someone older with fewer obligations? If so, should ethics committee members become her advocate along with the providers?

 

  • On the other hand, is it the responsibility of ethicists to enjoin that "Enough is enough"? After years of working through case-by-case ethical analyses, is it now time for ethics committees to address the larger question of a just allocation of resources, of the role that death plays in our society, and so on.

 

  • When ethics committees, as advocates for individual patients, address institutional policy, what value conflicts are likely to emerge?

 

 

 

Case Commentary

A personal ethic can differ from an institutional and a social ethic in the principles used, the values at stake, the possible conflicts, and the consequences of the actions done or omitted. If this were simply a case of Beth and experimental treatment, the analysis would be based on beneficence and autonomy, the values of her possibly having more time to spend with her children balanced against the debilitating effects of the treatment itself. But this is no longer simply a case about Beth. Once insurance is denied, the case becomes an issue for the providers, the hospital, even society itself. 

Ethics does not tell us what is right and wrong in this case. Ethics never does. But what "doing ethics" means is that we address all the issues that impinge on a situation, personally, corporately, and socially. Today's health care is not the health care delivery system of twenty years ago.

If Beth wants the suggested near-lethal-dose treatment, not just for her own well-being but in order to have more time to spend with her children, then her autonomy and the value of beneficence form the framework for her position.

When insurance companies deny coverage, we face new values: justified (or unjustified) allocation of scarce resources (money). Physicians' groups and hospitals must face the possibility of nonreimbursable care. New conflicts arise as a personal ethic clashes with an institutional/social ethic. Before the clash between personal autonomy and institutional justice can be resolved, a number of policies should be already in place and should be subject to review. Both Beth and the oncologist must have as up-to-date overview of relevant studies as are available. The physician's group should have agreed on the cut­off point between experimental and established treatments.  So, too, the hospital should have policies in place delineating how much charity care is financially feasible.

Likewise, all of us should continually reassess when further treatment should be refused and death be permitted.

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