Today I visited a friend who is in a palliative care hospice. The prognosis is not promising. The family are very distressed but try to not talk in front of the person about anything that could potentially upset them.
Upon arrival and while I was trying to find the bed I bumped onto a couple of their relatives who warned me not to say anything regarding death or dying.
This isn't uncommon. Even nowadays, many people from various backgrounds are not comfortable or prepared to discuss death and feel that they are not equipped to have this final discussion with a loved one.
So, this is the elephant in the room that no one acknowledges and despite the fact that often the actual patient knows that their time is up. They may just be playing along so not to distress the others.
When my friend saw me they tried to speak but wasn't able to. On a little whiteboard that was by their side they wrote in red thick texta: 'Am I dying?'
This was very difficult for me to deal with. On one hand there is the issue of respecting the family and partner. On the other, I do not wish to perpetuate lies and give false hope. Unable to answer directly I asked them instead: 'What do you think?'
They wrote: 'I think I am'. And I just nodded and grabbed their hand.
Upon leaving the hospital I was thinking about culture and religion and the various superstitions that surround death and dying and those last moments of being alive and how they shape the attitudes and behaviours of people. Wondered what mental health state the patient is, the partner, the family and friends etc.
In many communities there is a fear or superstition around death and preparing for it. People do not want to make a will or write an advance care plan. Some think it's better not to talk or plan about this and just do whatever you have to when the time comes.
What is your experience in your community or country of origin? Do you think if we disclose to the patient that we will contribute to more mental anguish and stress? Is it better to tell it as it is or sugar-coat it? And who's wishes to fulfill - the patient's or their circle?
