Prognosis and Looking into the Crystal Ball
While diagnosis is based on fact, prognosis is based on speculation. With a prognosis comes an attempt to predict the future, to give an informed estimate of what the diagnosis, along with any treatment, is likely to lead to.
The problem with a prognosis is that it can have power in its own right.
In the ancient culture of the indigenous Australian Aborigines there is a phenomenon called the “pointing of the bone.” This culture is the oldest continuous culture on the planet and its roots stretch back in time for at least forty thousand years. Many of the Aboriginal tribes lived in small nomadic groups that thrived amid extremely harsh environments. To survive and flourish they had quite strict laws that everyone recognized and generally adhered to. One of the ultimate penalties for transgressing these laws was the pointing of the bone. Here is how it works.
If a person broke a major law, they would be very aware of it themselves. They would know something serious was wrong and they would be aware of the likely consequences. Once the transgression was recognized by the tribe, the senior people would confer, and if all agreed, the punishment of pointing the bone would be carried out by the senior law holder. This person, often referred to as a man of high degree, would dress up in ceremonial garb and the instrument of the punishment literally would be a bone—a human thigh bone.
But there was no beating or physical assault with the bone. It was “pointed.” Amidst the ritual of the process, the bone was pointed at the transgressor along with the words—the curse, if you like—the threat, the promise, that the person would die.
Interesting things would begin to happen immediately. First, the law-breaker, the person who had been pointed, would go into a rapid decline. Then, all of the tribe would withdraw and avoid contact with them. The person would become depressed, lose all interest in life, then they themselves would withdraw and become listless, apathetic.
At this point there are frequent records of Western medicine attempting to intervene. No conventional treatment has been shown to prevent the ongoing decline toward death.
As death approaches, another significant observation. The tribe members, sensing the closeness of the end, gather around again. This time they go into pre-mourning rituals and, in the process, seal the fate of the wretched victim of this extraordinary punishment.
So the pointing of the bone is invariably fatal in this Aboriginal context.
Now let us make some unnerving comparisons. A person knows they are not well, that something serious is wrong. They go for help. Senior people confer. Then comes the consultation where the key figure dresses up in ritual garb, with white coat and stethoscope, and makes a pronouncement.
When bad news is given badly, there are all the hallmarks of the pointing of the bone.
“You have only three months to live and there is nothing we can do about it.”
In days gone by the message was often given this bluntly. These days, many doctors attempt to be more subtle and compassionate, but even so, many people get the take-home message: you have cancer, you will die.
All too often what happens next is that they go home in shock, they withdraw and then so do their friends. Often friends, even family, are unsure of what to do, how to respond, how to help. Many of these people, well-meaning, kind and considerate in their nature, have told me how they were deeply concerned about doing or saying the wrong thing and so they thought it safer to do nothing, to stay away.
However, if a person with cancer does decline and seems close to death, it is common for people to gather around to say their good-byes. This is natural and we will discuss how to do this in a healthy, constructive way in the chapter on death and dying, but here again, done badly it can fit exactly into the pointing of the bone process.
The message is simple. If bad news is given badly, if a prognosis is given bluntly and taken to heart, the person affected may well have two life-threatening conditions to deal with. The first is the actual illness. The second is the “pointing of the bone.” And we know both have the potential to be fatal.
Traditional Aborigines have survived the pointing of the bone. There are accounts where Aboriginal elders or today’s doctors have used their own rituals to persuade the person who has been pointed that the punishment has been countered or reversed. No medicine will do this. It all needs to come through the mind of the individual who has been pointed.
Therefore, we need to take heed of all this. For a start, let us use our logic again. In reality, offering a prognosis is a bit like setting the odds on a horse race. While in cancer medicine this process will involve high levels of technical skill and clinical expertise, setting a prognosis remains a process of making an informed guess. One takes into account all the factors one can and then makes the best estimate possible.
Now, we know that in horse racing the reality is that favorites win quite often. Yet we all know long shots get up from time to time. The only way to find out the result of a horse race is to wait until the race is run. Just the same in life. Just the same with cancer.
A prognosis is a bit like setting the odds. It can be helpful in giving all involved a sense of the degree of difficulty the diagnosis implies. Obviously, the odds of recovering from a cold are very high. No one who develops a cold takes it too seriously and fears dramatically for their future. The prognosis with a cold is usually pretty good and we can afford to treat it rather casually. If someone is diagnosed with a widespread aggressive cancer, obviously that is a vastly different matter and makes for a situation that requires the focused attention of everyone concerned.
You are a Statistically Unique Individual
But let us go a little deeper. Here is some more good news. Human beings are statistically unique events. What does this mean and why is it so important?
Easy to explain. Consider a game of chance like Two-up. Two-up is where you take two coins, each with heads and tails on either side, throw them into the air, and bet on whether they land with two heads up or two tails. If they land with one head and one tail, you throw them again. Imagine now that two heads have come up five times in a row. Most people instinctively feel the next throw is now more likely to produce two tails. Surely, the odds predict this, we think. Not so. Each time you throw two coins, you have a statistically unique event. There is no connection, no link between one throw and the next! Statistically unique. Sure, if you throw two coins one thousand times you are highly likely to have around five hundred heads and five hundred tails. On average, over large numbers, statistics are relevant and work well. But individual events like tossing coins are unique.
So too with people. People diagnosed with cancer are statistically unique. On average, statistics are useful to predict what might happen, to set the odds. That has some validity and some use, but you will never know the outcome for a unique individual until time moves on and the race is run.
Before my own secondaries were diagnosed, I had been into the medical libraries and had not been able to find a record of anyone surviving my type of metastasized cancer (osteogenic sarcoma) for more than six months. If I had accepted this fact, accepted my prognosis, I could very easily have withdrawn, become passive, and died on time. What a blessing in retrospect that I was “crazy” enough to believe it was possible to recover—“crazy” in that to aspire to recovering I went against all the prevailing evidence of the day. However, there is real logic to what I did and how any other person with cancer needs to approach their prognosis.
When one looks at the range of outcomes for nearly all situations in life, they commonly vary quite a deal. In cancer it is just the same. The evidence is clear