I apologize for the very negative title of this blog post. But it is crucial that people appreciate how hope is perceived within the medical world. Often times, hope is actually seen as a confusing emotion that interferes with decisions made by desperate patients. This also explains why physicians are the worst patients – they know too much to be driven by hope, when in fact, they know that their situation might be hopeless.
When my brother was dying in the ICU from the end-stage effects of his cancer, I saw a saying written out on a blackboard in the staff room. The saying was “it’s not the despair that is intolerable. It’s the hope”. I was a third-year medical student at this point, and I had already been dipped in the magic waters [including my heel] such that I understood the significance of this statement as a physician would. Over the course of my career, I’ve had to come to terms with hope and how not to effectively deceive patients by allowing them to hope when in fact they were wasting their time.
Obviously, one can simply designate hope as a psychological defense mechanism that has a direct effect on our bodies’ functions. There is a great deal of literature that demonstrates that depressed patients, who, generally speaking lack hope, do far worse healthwise than individuals who have a positive attitude. More so, there are documented cases of total remission of a cancer in people who focused their minds on a positive viewpoint. These people maintained hope, despite their circumstances. There are also many people who will swear by the positive effects of various psychological tools, in overcoming their particular illness. And yes, there is research to back up these claims, as well.
I raise this issue now because of a major announcement in the medical world. A research team has demonstrated tremendous, almost unbelievable, success with the new technology that cured 90% of a group of patients with terminal leukemia. Any person with cancer, not just leukemia, cannot help but read about such a success and not become hopeful that a cure for their own illness is right around the corner. Needless to say, any parent of a patient who is in a terminal state, will raise mountains to find a way to gain access to this treatment.
I have just begun reading comments on this work and a great many of them express very dour opinions on the value of this study. First and foremost, the researchers have not yet published their results in a peer-reviewed journal. The editors of such journals are not the keepers of the flame, and they are by no means the ultimate word in deciding the value and truth in a piece of research. There are far too many examples of revolutionary studies being relegated to low and journals, or not being published at all, because of the fear of “top end” editors to publish groundbreaking results that turn out to be false, at some point in the future. This hesitancy to publish previously unheard of results is not only due to the editor’s dedication to the truth. There is definitely an element of ego involved – the editors are worried about making a mistake that could hurt their own careers.
There were two people who died during the study. Initially, one can write this off as the progression of their innate disease, which was terminal with an expected lifespan of a few months. But without reviewing the data from the study, it really is impossible to decide what the true risk of this treatment is. To be clear, if I am facing a terminal disease and there is a treatment with a very high rate of success, and low rate of mortality, I will also be on board. Life is the leading cause of death. The trick is to balance benefit versus risk in every decision we make.
Back to the issue of hope. Somewhere in the world, there is probably a person with terminal leukemia, for whom money is no object. It is not hard to imagine that such a person will do anything possible, including illegal if not immoral things, to gain access to this new technology. There is of course no guarantee that the treatment will work. And who knows how many people will be hurt in the process of this one person gaining access to this research. But hope will drive this sick individual, despite the repercussions.
There is also the issue of compassionate use. When there seems to be a breakthrough in research, but one that has not been rigorously proven to be effective, there are many individuals who will ask for access to this research because of their personal dire circumstances. Such individuals are not included in the study data. They have not been selected or filtered in a way that would make the study data reliable. And have no doubt that if the study does not hold to rigorous standards, the results could end up being totally meaningless. In practice, the researchers are human beings themselves and they too hold out hope that their work will save lives, even before their research has been proven to be helpful and safe.
Doctors like to deal with absolutes. They are easy to understand, easy to explain and did not involve much in the way of emotional baggage. A classic example is immunizations. Despite the loud voices to the contrary, the amount of research that proves the value of immunizations is undeniable. Right now, we are facing a potential new viral threat from Zika. If this virus is not brought under control by a vaccine, it could single-handedly disrupt the entire world of procreation. Parents will not dare risk that their child be born with the severe congenital problems that Zika causes. In such a case, once hopefully a vaccine is made, it will not be a question of hope to trust in the effectiveness of such a vaccine – there will be hard research to prove its value.
In areas of medicine that are not so cut and dry, hope is a heavy component. Doctors are not trained to manage patients’ hope. Maybe they should be. Or maybe other specialists should immediately be brought into the clinical environ, the moment it is realized that the patients hope will be a major factor both in decision-making and in clinical outcome. Ultimately, especially as more and more such breakthroughs become regular events, we will all have to learn how to manage hope. And this is no less important than knowing which antibiotic to give for an infection.
Thanks for listening