They need to know!
(a.k.a. What’s inside the box?)
“She doesn’t need to know”, “please don’t tell him”, “she’ll get scared”, “it’s best if he doesn’t know”. These are phrases that we, as medical professionals, unfortunately hear every day. In medical school our teachings are based on four rules: autonomy, beneficence, non-maleficence, and justice. These are considered the pillars of medicine.
Beneficence is bringing benefit and improvement to the patient while at the same time not causing them harm i.e. non-maleficence. Justice is making sure that access to proper healthcare is equal to all. The focus of this piece is on autonomy, which is rule number one and is the most important of them all.
Autonomy is defined as the freedom of thought, intention, and action with regards to a patient’s healthcare. In layman’s terms it’s their body and they are free to do whatever they choose to it. So, it is their decision to undergo treatment, taking a certain medication or undergoing surgery. It also the patient’s choice to refuse the intervention. In the end it is their body that is going through this ordeal. Not their son’s or daughter’s, not their brother’s or sister’s and most importantly not a friend who is “like family”.
In Kuwait, and in most Arab states, this rule is not followed. The patient’s family usually try to hide sensitive information from their mothers, fathers, etc. The rationale regarding this is usually “they will get scared” or “get depressed”. That they wouldn’t be able to comprehend or understand the situation. That they will not be able to make the right decision.
The question that I always ask these people is “wouldn’t you want to know what’s happening to you?”
In my opinion, hiding or lying to the patients only protects them from the initial shock of the bad news. In our line of work, unfortunately, delivering the message is often hard. No matter how nicely we phrase it, telling a person that they have cancer or that their leg needs be amputated will always be difficult to us and to the patient. But what amazes me every day is how good these patients absorb this initial shock and shortly thereafter maintain a positive mentality towards the rest of their treatment. What makes things usually worse is when the patient is kept in the dark. H.P. Lovecraft said “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown”.
Imagine yourself taking an exam but you don’t know what the subject is. Or fighting a war but you don’t know who or what is your enemy. How can a person undergo surgery or get treatment for something they don’t know. In the end managing and treating a patient is a two-way street. A patient must be aware of the possible side effects or signs of disease progression. Imagine yourself saying to person “look I’m going to give you a box with an item inside. I will not tell what the item is. But what I can tell you is that the item may or may not lead to some sort of trouble in the future. This trouble may be a minor issue but may also become quite serious or life threatening. Unfortunately, I cannot tell you what’s inside the box in fear that your mental state may get affected. This is by the request of your family. Bearing in mind that knowing about what’s inside the box may actually help you deal with whatever you may face.”
Some may argue that a person has the right not to know. Maybe someone doesn’t want to know what’s inside the box. To these individuals, I say you are correct. Part of our protocol in breaking bad news is usually telling a patient that they have a serious medical condition and before we go into details we should ask and confirm if they want to know more details. Some opt for knowing and some opt for not knowing. Some may change their minds later and want more information in the future. In the end, it is their right and not their families.
Lying or withholding information can make things worse. Because in the end lies can only breed more lies. Let me give you an example from my own personal experience. A situation which I for the most part feel ashamed to have been part of. A while back, a young mother brought in her eight-year-old boy who was complaining from abdominal pain for the past two days. After our assessment, it was proven that he had acute appendicitis which would require emergency surgery. His mother hid this from him and requested us to do so as well. The boy was keen and observant. He kept asking questions from the trolley in the emergency room all the way to ward and from there to the operating room. He asked “why do I need an IV cannula?”, “Why are putting me in a medical gown?”, “Why are you taking me from my room? Where am I going?”. He then asks “are you going to operate on me?” and we say no. The questions just keep coming and we try our best to deflect them as much as we can. On the operating table while being prepped for surgery he asks “what is it that you are attaching to my legs?” I mistakenly say this for the diathermy probe we use during surgery. His pupils widen and I can see the tear forming at the angle of his eye. And before I could rectify the situation the anaesthetic medications that was pumped into his vein had done its job and he was sound asleep with tears going down his cheeks.
After the surgery, he was mostly distraught and angry at us and mostly his mother because we didn’t tell him the truth. He was discharged the next day. All this time he kept silent and didn’t speak a single word. All of this could have been avoided if we simply just said the truth in the beginning. “But he is only eight, he is a child. It is ok”. You might say that but see after a few weeks he came to our clinic to follow up and his mother said to us he no longer trusts her anymore. Her relationship with her son changed. His image of his mother has changed. His core beliefs were wounded and if it ever may heal it will definitely leave a scar bigger than his surgery.
Also, another example witnessed quite recently. We had two patients in the same ward and their rooms were next to each other. Every day when we rounded on the patients we would pass them by one after the other. Both were admitted with similar issues and both had to have one of their legs amputated just above the knee in an emergency setting. One was fortunate to get a full detailed explanation of what was about to happened and what will happen later. The other was unfortunate to have had a difficult family that forced us not tell him. Both had the surgery. One knew what happened and began his rehabilitation a few days after surgery. The other was shocked and felt betrayed for he woke up and found one of his legs missing. The first was discharged 5 days later. The second stayed in hospital for roughly 2 months. He was also depressed and refused to undergo rehabilitation. A few weeks later both were seen in the clinic. The first was walking with an artificial limb the other was bound to a wheelchair. Mostly likely for the rest of his life.
I can go on and on about this all day but it will never matter if we as a community don’t change. Walt Whitman wrote in his poem leaves of grass “Not I, nor anyone else can travel that road for you. You must travel it by yourself”. This is by far the best explanation/summary to this whole problem. It doesn’t matter if you are a child or an old frail grandfather. If we ever in life get ill, it is only ourselves who are ill. And it is only ourselves who will get the treatment. Instead of being one of those who hides the truth let us be those who embrace it. Let us become the sturdy walls that they can lean upon. Let us stretch out our helping hands and not to covers their eyes. And always ask those who oppose “Don’t you want to know what’s inside the box?”