Is it better to tell it as it is or sugar-coat it? Death, dying and palliative care in culturally diverse settings and effect on mental health.

[Donte]

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?

[Hayfa]

hi Donte'

This is so sad and for me and so close to home because I went through this not that long ago when I lost my dad to cancer. I remember many visions at home in Lebanon of older people lying on the couch at home with all their family around them, death is viewed as a normal part of living and love, respect and doing everything to make that person comfortable was the goal.
It is a little different if someone is suffering a terminal illness for example, doctors won't usually tell the person so that they may not make it the focal point and become full of fear instead, the family knows and they decide if they say anything.
However, the family will look after that person in such a way that the journey to death is beautiful and becomes communicated through the looking after of that person in such a special way.

The journey, as hard as it was for me and my family as I am sure it is for anyone, I thought was the most thoughtful, soft , loving experience I could give to someone by being there. In doing this, I guess the person knows and can feel what is happening but without having to find the words to talk about if they didn't want to.
In my experience, my family and I assured my dad of all the things we would do to look after our mum, I think that knowing what the person would like to hear and be reassured about is a thereupeutic thing for all. I think through actions the communication of impending death becomes known in a more dignified, loving sense.

Hayfa

[Donte]

Hello Hayfa,

It might be healthier in some ways to have an "open to discussion" around all of life's different stages to better hold a space of caring compassion for those journeying through them. Our western culture likes to pretend death only happens neatly and quietly behind silent closed doors...to other people, as if death will not knock on all our doors eventually. Whatever is openly discussed is less terrifying than what is hidden under the bed like the bogeyman. There are great resources around about death and dying and the more open to discussion this subject is the more comfort we can provide others.

Admittedly though, when my partner and love of my life died at 39, one of the hardest things for me at the Intensive Care Unit was to look at him in the eyes, hold his hand and tell him that he'll be dead in a few minutes after the last morphine shot was injected into him. I still have night terrors and scream in my sleep five years later....

[Donte]

I think that this is such an important issue-to give the dying person the opportunity to come to terms with the inevitable, to grieve the end of their life and even to connect to emotions of love and gratitude which can often happen in the process. It’s a big journey and to deny someone of it can be a lost opportunity, even to say good-bye from that awareness.

I understand that it is intolerable or taboo in some communities and cultures, so no doubt more work to be done in this area. Maybe community education in different languages addressing this painful time? Food for thought.

[Donte]

Very sensitive and challenging issue that impacts on everyone at some point in their lives. A friend last night told me:

‘Did I really wanted the doctors at the Intensive Care Unit to confirm to me that my child was dying and had only 8,6,4,2 hours of life? All I could think of was”I know he’s going to die, but I needed too dearly to hold on to HOPE, even false hope, every moment until his last breath.’ This has shaped my thoughts of do you confirm it or not.

‘When my dad was dying’, she continued, ‘I knew he wanted me to confirm it. I did not! Once again I found myself wanting to hold on to every moment of hope. Am I guilty of selfishness? Am I guilty of protecting myself?’

And finally my friend concluded: ‘ My dearly loved auntie found the courage to ask me straight out: “Am I going to die?”, and all I could say with a heavy heart was “ We are all going to die”. Eighteen years later, since that day when my auntie lost her long struggle with cancer, I still wonder if I did the right thing.’

[Hayfa]

Hello Donte'

This is indeed a very sensitive issue and I understand and agree with everything you are saying but, I also believe that there are many ways to journey through this without actually saying yes you are dying in the last days of someone's life unless they want that confirmation.
In your original post you asked
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 mental anguish or stress?
I shared my experience and I can vouch for people in my ethno-religious community that as sad as death is, it is celebrated as the beginning of another life just as it is also done in the Tibetan and all other Eastern religions who believe in reincarnation.
The conversations about dying do occur but it depends on the individual, the situation and those around the individual as to what will guide that conversation and what is said. Nothing is kept secret or death occurring behind closed closed doors.

For some people I think the conversation about life, death and everything in between happen during a person's life so it makes perfect sense to be guided by what the person wants to talk about at the perfect and precise point that they may wish to do so.
Contrary to popular belief, a person knows when their time is near regardless of whether they are a child or an adult. Something bigger instils in the person calm and readiness for what is going to happen, they are in another dimension at this point and if this wasn't the case there would be much fear and physical anguished movement.

The discussion about dying can come in many different forms and times, I think it serves importance at any given point in whatever form it came, for example, a calm beautiful bedside vigil is just as important and open as telling it to the person.
Conversations can be about anything meaningful whether it is discussing the person's impending death or just discussing how they want things to be later on, or remembering past happy events.

I don't believe that there can be such a thing as sugar-coating at this time, it is like you described in your previous post about the mother who wants to hold onto every piece of hope for her child.
Maybe we should accept that during this sensitive, heartfelt, emotional and calm moment that this is the conversation.

Hayfa

[Donte]

That is very beautifully said Hayfa.

Indeed the 'conversation' takes many forms. Personally I don't believe in any afterlife, however, my cultural and religious heritage (Greek), teaches the resurrection of the dead in the last day when Jesus returns to earth to pass judgement to all living and dead.

Despite what beliefs people may have, I'm more interested to discuss the moments prior to death of an individual and the way certain traditions and customs (like for example, the notion that is not appropriate to disclose as you'll create more anxiety and anguish to the person who's dying) may hinder communication, engagement and an opportunity to say the very last goodbyes.

[Guest_161]

This brings back a lot of memories and heartache for me as i watched my brother die last year.

it was any other hospital visit , he suffered with gvhd, but this time he wasn't well with it at all, had diarea very very bad, but on the ward there was 1 large room , it was for the younger ones 18-25, he always missed out on that room before he turned 26. well i came to visit and there he was transferred to the larger room where my mum was able to stay, i instantly felt sick. that same day i noticed less and less drugs being put up on his line and my mum asked to talk to me, i ran off i couldn't hear the words hes dying , i wasn't going to accept it and i grand onto hope. in his late few days he was pretty out of it but i couldn't stand people coming in and saying there goodbyes to him it made me angry i didnt want him ( altho he knew) to be thinking we've all given up , he told the doctor before he was heavily medicated he wants to fight. but now i suffer with not accepting it and using the time instead of pushing the thought out of my head and wasting that time ill never get back

[Hayfa]

Hello Guest_161

I am so sorry for your loss and the pain it caused you.
Upon reflecting at these few posts all over again, I realise that there really is something more deeper and powerful here. The thoughts and emotions you experienced at this very difficult time are obviously a normal experience, fear and doubt take over when a person has to face the likely situation that they may lose someone that is so dear to them.
I totally understand what this time must have been like because I went through this too, I remember thinking that I didn't want people to come and see my dad in his last days because I didn't want him to feel that fear and anguish especially because he said that' people are coming because they know I am going and I feel I still want to fight'.

I think it is totally okay not to have those discussions unless the person asks to talk about it otherwise as I really believe and stated in my earlier posts, those conversations are understood because they are known and seen without having to be said.
I think when we share the best and most beautiful moments with our loved ones while they are well, we have already said, done and listened to what they want us to know and when death is impending we should be able to let our emotions take over.

We need to let hope, fear and despair come out so that it dissipates with acceptance and as I said before, this could be the conversation.
Goodbye's can be seen and felt, sometimes they are most powerful in this way rather than being said and I really think that being there and doing what feels right is the most loving, dignified response we could ever share with someone so dear to us.

Hayfa

[Donte]

Death is unfathomable. Five years later I still cry myself to sleep, have night terrors and see him in my sleep.

My life is not the same in any regard and don’t want to ever move on.

It angers me to the point of rage when I hear people blabbing on about their philosophies and beliefs. I don’t care at all what they believe. I don’t care about the after life or if they’ve gone to a better place. All I know is my life is worse and I’m not in a better place. X