The Right to Choose

Recently, the CBC reported on a ten-year old girl, Makayla Sault, who was diagnosed with acute lymphoblastic leukemia, a cancer of the blood. The girl experienced severe side effects from the chemotherapy she was receiving and decided, together with her parents, to discontinue therapy.

Now, the Children’s Aid Society is getting involved with the intent of convincing the family to complete the course of therapy. The parents and the community they live in also fear that Makayla may be forcibly removed from home and given therapy against her will.

Do parents have the right to choose whether or not a potentially life-saving treatment is given to their child? Does the child have a say in this decision? Does the state have the responsibility to act in what is perceived as the best interest of the child, against the parents’ and the child’s wishes?

Let’s consider all the factors.

Deadliness of the disease. The form of leukemia that Makayla has can progress very rapidly and lead to death within a few months, if not treated. If it was a slower progressing disease, would it seem reasonable to let the parents decide on the course of treatment?

Chance of cure. If treated, there is a high chance of long-term remission or cure for a patient with acute lymphoblastic leukemia. Some quote the likelihood of treatment success as 75% or even higher. How does this information influence your view on the case? Does the parents’ decision seem responsible? Should the state step in?

What if treatment success was estimated at 50%? …at 30%? …at 10%? How would this influence your view on whose right it is to decide what to do? With a low chance of remission or cure, would it seem reasonable to allow parents to, basically, let their child die without having to go through the agony of chemotherapy?

Cultural context. The news coverage focused in on the point that Makayla and her parents belong to the New Credit First Nation, based in Ontario. Her family decided to try traditional remedies instead chemotherapy, and their local community has shown great support for their decision. The interference of the Children’s Aid Society is seen by some as another attempt of a government agency to take away native children, as had been done during the era of forced residential schooling.

How does the cultural factor influence your view on the case? Does being First Nation give Makayla’s parents more of a right to decide her destiny than being of Irish decent, being Jewish or being Iranian? What if the family belonged to a religious group that was viewed as being ‘extremist’? Would you feel the same about the case or different?

To what extent is the state responsible for the well-being of our children, and to ensure their well-being in the face of parental opposition? Laws and mechanisms to protect children against abusive parents certainly seem appropriate. How about protecting children against well-meaning but ill-informed parents? How about protecting children against well-meaning, well-informed parents who adhere to a different belief system? Difficult decisions.

On Chemotherapy

My friend had breast cancer twenty years ago. After surgery and radiation, she has been in remission and free of health complaints. Now that she is almost 80 years old, another lump was found in the same breast. She has access to excellent medical care, and she was given the following advice:

While the lump was small, she should have a mastectomy, just in case. As she was not eligible for another round of radiation therapy, it was recommended that she go through chemotherapy, because physiologically, she was deemed to be perhaps ten years younger than her actual age.

This is typical advice to elderly adults who are in good physical shape. It is based on the assumption that adding years to your life trumps every other consideration, provided you are in good health otherwise.

At age 80, how long does the average person have to live? Two years, five years, ten years tops? With all advances in medicine, we have not managed to extend life much beyond that. We are getting more and more people to reach their eighties, but we are not living significantly longer than that.

My friend was struggling with the advice she was given, and what was presented to her as the best medical solution. She did not want to lose her breast, and she did not want to put up with the side effects of chemotherapy. So she tried hard to find second and third opinions to support the view that it was not absolutely necessary to conduct a mastectomy and chemotherapy, and that she was not carelessly jeopardizing her chances of survival by refusing these options.

As we spoke about the different considerations that come into play in these decisions, she kept saying “I will get chemotherapy if I have to, but I’d rather not”. To me, this indicated an obligation that she felt to justify her choices to her friends and family, and perhaps to her medical advisors. Nobody wants to be seen as reckless with regard to one’s own health.

However, isn’t that bizarre and plain wrong? A person’s life is a person’s life, and having a lump in your breast is just one of many things you will consider and care about. So a woman who has carried two breasts through her entire life wants her life to end with both of them in place. So a woman who may have five, six or seven more years to live, probably deteriorating progressively as she ages, does not want to ruin her sense of well-being right now with an aggressive therapy regimen. So what?

Why is she made to feel guilty or irresponsible? Why does she need to justify her course of action?

It is understandable that friends and family of a person in this situation may advocate the more aggressive therapy, as they may fear losing this person. Fair enough.

However, it is my view that medical professionals should state very clearly that the choice is entirely up to the patient, that every choice has its trade-offs and that an informed choice, whatever it is, represents a responsible and acceptable way of managing one’s health. To have this sort of back-up from the medical community would make dealing with a difficult situation easier for the patient.

Banking on our fear of death

Pharmaceutical companies have reoriented their businesses over the past several years to focus on discovery of molecules that target narrow markets, usually in oncology or in rare, but serious diseases. It is well known that revenues for ‘mass market’ products for diseases that are highly prevalent and not immediately life-threatening have been declining and few truly breakthrough discoveries have been made to replace revenue drivers that have become generic.

But why the rush into oncology and other small-but-serious markets? I believe that this has to do largely with our attitude towards death. Inevitably, we will all die of something. Before the advent of penicillin, people died of infections. As medical care has improved dramatically in the past 100 years, at least in some parts of the world, we live longer and are more likely to experience diseases which are basically a function of our body breaking down i.e. cancer.

Oncology drugs present an attempt to prevent the inevitable. In some tumour types, enormous advances have been made – breast cancer, for example, can now be regarded more as a chronic disease than as a terminal illness. For many other tumour types, however, scientific progress has been underwhelming. New agents are being trialed and approved that offer three or four more months of progression-free survival or a few months of overall survival vs. the incumbent standard of care. …and regulatory bodies such as the FDA find it difficult to turn those agents down, because they allow patients to live longer. Enormous costs to the healthcare system are perceived as justified, because they allow patients to live longer.

How much value do four extra months have when you are very sick and 80 years old? I don’t know, as I have not yet been in this situation. Who drives decisions to try another therapy, complete with side effects, at that point? Is it the physician, feeling compelled to offer a treatment when one is available? Is it the patient, clinging to life? Or is it the patient’s family, not wanting to let go?

One thing seems certain – no politician in his or her right mind will advocate spending healthcare dollars elsewhere, when there is time to be gained in the battle with death. Can you imagine the headlines? But the societal discourse may be shifting, looking at more humane ways of dealing with end-of-life, and re-evaluating our overall priorities in what kind of healthcare is being offered and funded.