Can a rational person possibly refuse treatment?
Until very recently, it was assumed that there was something wrong with people who refused medical treatment.* It was believed that some irrational fear, incorrect judgment, or suicidal tendency was interfering with the patient’s reaching the conclusion that treatment was the only viable option. Only now has the medical profession become more open to the idea that refusing conventional medical treatment may be a reasoned and informed choice made by someone in full possession of his or her faculties. For example, although in the 1970’s this concept was addressed in the model patient’s bill of rights and implied in the principles of informed consent, it was in 1990 that the Association of American Physicians & Surgeons adopted a list of freedoms that should be guaranteed to all patients that included the freedom to refuse medical treatment even if it is recommended by their physician.
Understandably, doctors find it hard to take when their treatment paradigm is challenged. Often, they are very troubled by the patient’s decision and will keep trying to get them to change their mind; others will be concerned to cover themselves in case the patient or the family later decides to sue for inadequate care.
Refuseniks are not a small fringe group
Treatment refusers (sometimes referred to as “refuseniks”) are often at the beginning of their illness, and the interventions they refuse are considered “active” in that they are intended to cure or control the illness, rather than “palliative” i.e., intended to just comfort the patient. While Christian Scientists relying on prayer or Jehovah’s Witnesses refusing blood transfusions are the ones that make the headlines, most people who refuse treatment are not doing so for religious reasons or out of a deep mistrust of modern medicine. In fact, many patients will accept part of a doctor’s recommendation – surgery to remove a tumor, for example – only to reject follow up therapy such as chemotherapy or radiation.
The cost/benefit analysis
These patients are doing a kind of cost/benefit analysis. For example, in the case of chemotherapy drugs, they cite that unlike most drugs, which provide the high possibility of benefit with the possibility of harm, many anticancer drugs, provide near certainty of harm with only a possibility of benefits. The therapies might prolong life — but for how long? And at what cost? There have been no studies — since withholding treatment from a control group would be unethical — but one survey comparing almost 800 patients who refused all conventional cancer treatment with those who accepted treatment found that refusal shortened the median length of survival by nine months. The survey was extremely broad: subjects suffered from 30 kinds of cancer at varying stages of the disease, and survival ranged from two months to more than six years. But the point is that sometimes treatment buys you a lot of time, and sometimes it doesn’t.
Older patients more likely to refuse treatment
It follows, therefore, and is borne out by the statistics, that older patients refuse treatment more often than younger patients. Often, they feel that they have lived their life, or that the chance of a bit more time alive does not justify the consequences involved in undergoing treatment. In one survey of women with breast cancer, 7% of women 65 or older refused treatment, compared with 3% of women under 65. Older men with prostate cancer often postpone surgery out of concern about adverse effects such as incontinence and impotence, and in fact such watchful waiting and monitoring PSA levels are sometimes a doctor-approved option. Usually, however, a patient is not given enough information nor time to deliberate, a complaint that is often cited by supporters of complementary and alternative medicine.
A value judgment
Generally speaking, refuseniks are intelligent, articulate and fully aware of the possible consequences of their decisions. They don’t use medical evidence as the only — or even the main — factor in their decision-making, although they report collecting lots of research about proposed treatments. Instead, they make choices based on their values, like the belief that the meaning of life is greatly diminished when the ability to live it normally is compromised. They don’t want to live as long as possible if that means a loss of bodily integrity and personal independence. Sometimes they rely on the personal experiences of friends who underwent similar treatments. They believe in the benevolence of the doctor’s intentions and often in the doctor’s skill as well, but in the end, they choose a route that they think will give them a better sense of control, quality of life and dignity.
More options needed
With this new view of refuseniks, the challenge for the medical profession is to provide broader choices, better options, and alternative treatments for those who choose to avoid conventional medical treatment.