Informing a patient, or often one of their relatives, about the failure of a treatment is challenging, particularly if there’s no further step or another treatment available. We call them lines of treatment but they’re opportunities, hopes and options. We reason based on the percentage of responders, the months of progression-free survival and the probability of death. It’s all relevant for the “group”, but when you’re a person, when you’re “that person”, then percentages, averages and medians don’t matter as such.
The future means hope, even when it is the outcome of a failure from a previous treatment that didn’t work. As a person you just want to hope, even just one. Then you can play it out with yourself and create your own storytelling.
The cruel obsession of physicians about always having to say everything with precise and meticulous proficiency- even when the numbers are terrible and when the daily vocabulary includes atrocious words such as death, fever, pain, months, choices – leads to the patient not having that “space” to gradually approach decreasing hopes.
The patient needs to break what sometimes is a relentless progression, looking for small successes before the fatal failure. Today I didn’t have a temperature, I partially responded to the treatment, I recovered from pneumonia, I didn’t lose my hair, I ate everything: several small successes that are a different way of pushing away the greater final verdict.
You should be good at informing about a failure and should pick up on whatever aspect of their life as a patient that person wishes to know about.
What does informing about a failure mean then? Perhaps it simply means to adjust expectations and to redefine another small success. You should be good at informing about a failure and should pick up on whatever aspect of their life as a patient that person- man, woman or child- wishes to know about, perhaps the outcome of a treatment that they struggled to follow.
Look at the patients queuing in a day hospital. They hold their chart with diligence, orderly, even happy to go and receive a verdict. Sometimes it is a success, sometimes it is not, but they have the sacred right to find, even with a negative outcome, a reason to create another goal and come back with their chart after the completion of yet another task.
Knowing how to say it, knowing how to see it. Success should also be present in the words of the person explaining what is happening. There’s space for success even in failure, if you take the time to create a new goal. Instead, if you search for the guilty part, for mistakes, for solicitors, then you will quickly head towards a big failure.
You can live poorly and you can die well. Even though seemingly illogical, it is possible for terminal patients to feel lucky and for people who avoided an ominous diagnosis to feel unlucky. In the end it’s a matter of perspective.
People should be protected from failure by being helped to think that they still have a possibility. It means giving them the opportunity to believe and to hold on to the smaller and bigger intermediate successes.
Once we get to the pharmaceutical world we should reflect, for a moment, just about this, whenever we start to think that prolonging survival with a good quality of life and without pain is not worth much if in the end you would still die after the same period of time as you would with another treatment.
People should be protected from failure by being helped to think that they still have a possibility. It means giving them the opportunity to believe and to hold on to the smaller and bigger intermediate successes.
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