3 Simple Reasons Why Families Refuse To Share Dying Prognosis With Patient
Why would families refuse to share dying prognosis in Singapore? Sounds like an issue of human rights, but breaking bad news on the prognosis of a potentially life threatening illness like stage 4th cancer to one’s aged parent can be a complex matters for families. Typically, this scenario is more common for folks with parents who may be illiterate and received little education. For the more educated ones, walking into a medical institution with the word “Cancer Centre” or “癌症中心” smack right into your face, you don’t need a PHD to be intuitive enough to guess what is going on.
For scenario where one’s aged parent may not understand what’s going on, the family would struggle with another set of unique decision:
“Should we tell or should we keep mum?”
Though there may be multiple considerations why families choose not to reveal the nature of the illness, anecdotally speaking, 99.9% of the overarching reason has something to do with the desire of wanting to protect their family member from the pain of knowledge – rationalizing that sharing will bring about more harm than good. In addition, some families may take another proactive step beyond mere silence; to make sure that medical professionals are also in cahoots to ‘synchronize’ the silence. This is what we termed it as “Collusion“
Collusion: a secret agreement or cooperation between two or more people who are trying to deceive. In healthcare, collusion implies any information (about the diagnosis, prognosis, and medical details about the person who is ill) being withheld or not shared among individuals involved. Collusion also means that relevant and complete medical information is selectively or not disclosed at all to patients and/or relatives.
Here are 3 simple reasons why families would refuse to share dying prognosis to their loved ones:
1. My mum/dad will not be able to take the news. S/he will fall into depression and may even attempt suicide.
Photo by Jacqueline Day on Unsplash
For a bad prognosis, the knowledge of one’s dying isn’t something that people typically call for a celebration, though there are a growing phenomenon of people in Singapore who desire a farewell celebration as compared to mourning over death. Even if that happens, it often only happens later when people start to come to terms with their limited mortality. But many, rightful and naturally so, can be adversely affected by the bad news. As family would know member of their family better, there may be deeply entrenched psychological and/or emotional challenges not easily perceived or understood by the medical team, which warrant the need to withhold information.
When it comes to suicide, it has been reported that elderly suicide has been on the rise. Unfortunately, this has also gotten people to anecdotally attribute part of the cause to having poor quality of life, possibly from onset of life limiting/debilitating illness, which spark off an entire debate on Euthanasia over at Straits Times Forum.
Although paradoxically, I did came across someone who actually felt liberated from knowing that she has cancer. After unpacking her story, it is precisely because she has depression, so she perceived that death provides that light at the end of the tunnel.
2. We don’t know how to talk about such things or I don’t think I can do this (someone else other than myself should do it). We don’t even know how to deal with emotions from the conversation.
Photo by Elijah M. Henderson on Unsplash
Dealing with raw emotions can be rather intimidating for people who are uncomfortable with sadness and tears. Coupled with the general climate of avoidance when it comes to death, especially so when one may have an option not to share possibly due to valid practical factors. For example, some elderly parents are only versed in dialect – it can be extremely daunting to translate medical information or decision making into those languages. So when you are face with practical challenge of sharing in drips and drabs of loosely translated content, it may invoke unnecessary anxiety from poor clarity of the information shared or result in inaccurate comprehension by the patient.
Sometimes, we find it hard to find the ‘right words’ for translation when we convey bad news. So family may opt for the strategy of ‘less is more’.
So none is even better.
3. Not knowing will help keep mum/dad more positive and hopeful; it will help them to live longer.
Photo by 张学欢 on Unsplash
I remembered that once I was running a group session in the community and we were talking about death and dying matters. Then one participant eagerly shared about her experience with nondisclosure, which she firmly believed that it was key to lengthen the life of her dying mother because she outlived the prognosis set by the doctors.
Hope (or strategic ignorance, depending on how you see it) is a very powerful narrative. What greatly helped her mother was plain illiteracy and the unwavering trust she had for the family. Hence, she just accepted whatever decision that was made on her behalf because she believe that was done on the basis of her best interest.
Ultimately, families are usually concerned not to project an awful sense of ‘hopelessness’; there must always be light at the end of the tunnel. And if the situation is grim, then absence of information will come from a judgement of compassion rather than harmful omission.
Let me know your thoughts by dropping me a comment below.
Featured Photo by Ricardo Mancía on Unsplash