Autonomy means the patient has the right to consent to treatment or to reject it. Autonomy has to be balanced against the good of society. What if a patient’s rejection of treatment or quarantine allows an epidemic to spread? Beneficence means we should do what is best for the patient. Non-maleficence means “First do no harm.” Justice applies to conundrums like how to provide kidney dialysis and organ transplants equitably in a society that can’t afford to treat everyone with expensive high-tech treatments or where the rich can afford better treatment than the poor.
Medical ethicist Ronald Munson has written a fascinating book entitled The Woman Who Decided to Die: Challenges and Choices at the Edges of Medicine. His clinical vignettes vividly illustrate the difficult decisions that must be made when science-based medicine runs up against the harsh practical reality of ethical dilemmas.
The woman who decided to die had leukemia and chose not to try a treatment that had a 20% chance of success. She had two small children and wanted to die sooner rather than later so her husband could re-marry and her children would be less traumatized.
A young woman doesn’t want to enroll in a clinical trial because she thinks the experimental drug is her last chance and she won’t risk being put on a placebo. She can’t legally get the experimental drug outside a controlled trial – should she be able to?
A teenage boy who is unhappy and who is being bullied resorts to cutting himself repeatedly to relieve his emotional distress. What should his doctor do?
How can you determine whether a patient really represents a danger to himself or others, and does that justify involuntary commitment?
A convicted murderer will die if he doesn’t get a liver transplant. Should his crime influence his eligibility for transplant?
Should people have the right to sell a kidney? Allowing such sales would save lives by making kidneys more available for transplants. But poor people might be coerced to sell a kidney to keep their family from starving.
A patient has no hope of recovery and is being kept alive by artificial measures including a feeding tube. Is it ethical to stop feeding him?
If a patient is enduring terrible suffering and has no chance of improvement, is it ethical to euthanize him at his request? Or at the request of his spouse if he is unable to communicate?
How can we determine someone is dead when he is on life support?
The case that disturbed me the most was that of Meg, a young woman who was diagnosed with breast cancer in 1995. Chemotherapy failed, and she was offered a bone marrow transplant – actually a procedure in which some of her own cells would be harvested from her blood and saved, she would be given high-dose chemotherapy that wiped out her bone marrow, and then her own cells would be re-infused (high dose chemo with stem-cell rescue). She was told the evidence: a few small studies showed that the treatment offered a small benefit, but none of the studies randomly assigned women to get either standard chemo or high-dose chemo plus stem cell rescue. The oncologists who recommended it were making a judgment call in the absence of genuine scientific evidence. She saw it as her only chance, had the procedure, endured weeks of suffering in the hospital and was dead 8 months later.
Stem-cell transplants had been so widely and uncritically accepted that oncologists tended to think of them as a conventional therapy that would soon be validated by clinical trials. The treatment seemed so reasonable on theoretical grounds that waiting for the scientific evidence seemed only a formality. The lesson for medicine here is that it must remain vigilant and not allow a treatment, no matter how prima facie reasonable it appears, to gain the status of a standard therapy without clinical testing. Patients tend to think that any novel therapy is better than a relatively ineffective standard one, and when physicians seem enthusiastic about it, for desperate patients that’s equivalent to an endorsement.
The data from 4 well-conducted studies were released in 1999. They showed no benefit from the procedure, and oncologists stopped offering it. That knowledge came too late for Meg.
Modern scientific medicine has learned to prolong life, but sometimes those extra years of life involve constant suffering, great financial expense, and poor quality of life. We CAN provide many interventions, but SHOULD we always use them?
Munson provides a sympathetic, thought-provoking discussion of issues many of us will eventually face for ourselves, our patients, or our family members. There are no easy answers.
This article was originally published in the Science-Based Medicine Blog.