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'

I am so sorry that this is still so painful and I dare say from the perspective of someone who knows, I hear my mother saying the same thing as you. I am still in pain and it does change your life and the way you view others and the environment around you.
Things that were never apparent before suddenly become apparent, those you thought will always be there actually turn away at the time you need them and things that are said take on new meaning.

I don't believe that it is right to talk about philosophies and religious beliefs about death and afterlife to someone who has different views although I believe that everyone should be able to express theirs without the fear of ridicule.
I think there would be many people who feel that no matter what is said to them at this time to offer consolation it means nothing, and then there is the flip side where there would many people who find peace by hearing such words.
I used to get upset on many occasions in the past when I would hear people talk about coming into the world and having one life only, to me this offered no consolation to those left behind and the mental anguish could get worse to a parent thinking that their poor defenceless child died young and that was it for them in one life.
I slowly started to realise that it shouldn't upset me what others believed because what mattered is what I believe and that it offers me peace, calm and acceptance.

Hayfa

[Guest_161]

Hi Hayfa

After reading my post again i apologise if it doesnt make sense, it was am when i wrote it and my emotions has sky rocketed.

Your right just being there is enough, with out the goodbyes spoken , i think if it wasn't for this i may have handled it enough to be there more in the end, but every one who visited , each goodbye ripped my heart out and i didnt want him to feel or here me crying. i had hope till the end but if he had heard me cry i didnt want him to think we've given up.

[Guest_161]

Hi donte

reading your post was like speaking my mind.

I cry and i dont want to move on either. i dont want to be happy , i dont want to stop thinking about it all incase i start to loose memories .

Whilst my life is worse also, i do hope he has gone to an after life, because it helps to think i will see him again. But i totally understand when people say hes gone to a better place , but fact is he shouldn't have gone to begin with.

[Donte]

That’s true Hayfa,

Thank you for your kind words. I always enjoy reading your posts. You offer another point of view that makes me think in different ways and mostly encourages me to analyze and evaluate my beliefs and thoughts. That’s beautiful as it’s the only way to grow and learn and change.

Death, like life is such a personal experience. At the time of loss you may not want to hear solutions as there are none. Others may feel better with some words of encouragement or some hope that certain beliefs and teachings may offer. If something makes someone feel better, even temporarily, and soothes the pain, then why argue if it’s real or not. Everyone is trying to hold on to something. Maybe that’s ok. For me, that’s the sugar-coating.

It is different of course losing a partner to losing a child or a parent. And it all depends on the relationship one had with the particular person while they were alive. The impact is very personal and no two losses are identical.

This incident, visiting my frient, has brought back so many painful memories that for the last five years I’ve tried to work through and accept. The moment I think I’ve normalized it and it’s ok, something happens and brings me back. However, I think it’s time is easier and I bounce back quicker. It has just brought me back to that terrible realization of the permanency of death and five years sometimes feels like yesterday and other times like a century ago. Nothing has changed but everything is different.

I’m ok of course. I have started antidepressants again, see a Counsellor again, started attending a suppprt group again etc. I am functioning. I am managing. I have found new hobbies and interests etc. I’m just not who I was anymore. I have changed. And sometimes I have difficulties remembering how I was. Death forces us to look at reality. To grow up.

Five years since the death of my partner I’m here but of course I’m not anymore who I was with him or because of him. And no one else will or can replace that. A part of me has died with him. A part of him lives in me.

Of course, some people find love again, but also for some, certain things happen only once in a lifetime. It is a very personal experience indeed.

I agree, all it matters is how one feels and what they believe. That’s all that matters for them. The world carries on with or without us and reality doesn’t ask our consent to eventuate.

We all do what we can with what we have in our hands.

[Sleepless1987]

Hi Donte, as a nurse I have a very practical view of death. If I had my way everyone would have a peaceful and respectful death. I have seen so many people suffer through their last days to weeks because death was never discussed. It's a hard topic, no-one likes the idea of dying but it will happen and everyone deserves the best death. Families never want to accept a lived one dying but this leads to a prolonged and quite often a painful death. In some cases a patient has no Advance Heath Directive, so we have to abide by the families wishes, who do not understand what is currently happening within their lived one. Othertimes, we need to attempt to resuscitate someone despite it not being the ring the patient would want. I believe that death and dying is a subject that everyone needs to discuss, especially with elderly family members, traditions and beliefs must be respected but you need to know in advance what is desired. People know when they are getting close to passing, and all I can give them is the death they want (within reason of course) but we need to know in advance. Caring for a palliative patient also means caring for the family during the time their lived one is passing, they need to know that their loved one is being treated in a professional and respectful manner and their wishes are being followed. It gets hard when a patients wishes are different to the family's, but we always respect the dying, this is why in my personal opinion death, dying and palliative care need to be discussed. Sorry if I ranted a bit. Regards

[Donte]

Hello Sleepless1987,

Thank you for your input in this very important discussion. Your perspective and experience as a nurse in the palliative care setting is invaluable.

I remember when my partner was dying, I just couldn’t thank enough the staff, nurses, doctors, students, volunteers etc who were in the Intensive Care Unit and the palliative care team. Amazing people who dedicate their day, every day, relieve people’s pain and supporting them in so many different ways during those last days, hours, moments before their death. It is incredible! For me, it was a first-time experience and was blown away from the dedication, care, and hard work health professionals put into the care of every individual and their families/carers.

I agree, we should discuss this more and before we get to that stage. This difficult for many conversation is pivotal in order to ensure the most appropriate care is provided before, during and after the time of death.

Hope this thread is helping us think more about the impact on the person, their loved ones or family and community and ways we could support each other during those stressful times. X

[Hayfa]

Hi Guest_161

Please don't apologise, of course this is an emotionally charged time for you, I totally understand because I was in that spot too and sometimes I still am.
I think it is really important to remember that as human beings we can only do the best we can with what we have at the time and that means that whatever we did during difficult times was exactly all our hearts and minds could allow us to do in that particular moment.
We could always beat ourselves up with the question of 'what if' and by dwelling on that we can't move on because it forces us to look at the negatives which cause pain. After asking 'what if' we should also ask 'but it was...and I could...I did...and that was the best or the only thing I could do'.

In so many of our other threads and posts we often see the words 'be kind to yourself' however we tend to forget to do that.
You need to reflect on the kindest, gentle and most appropriate thing you did for yourself, your family and your beautiful brother at that difficult time which was to be there.
You say you didn't want to cry in front of him so that he may not think that you're giving up on him however, you didn't think that by doing this you were actually sparing him the anguish of feeling your sadness and despair.

Losing people we love is the most difficult thing in the world but take solace that you and your wonderful family stayed beside your brother even if conversations about what was happening didn't take place.
There are many people who depart suddenly whether by an accident or heart attack for example, and their families were not there and never got to say anything to them.
Stay strong and remember what you did, not what you now think you should have done.

Hayfa

[Donte]

In order to deliver care that deals with the whole person, caregivers need to be sensitive to thee expectations, needs and wishes of each person and their family.

What a challenging and enormous task that is!

Recognizing the uniqueness of their personality and human relationships is essential to helping people die appropriately or well.

People may have beliefs and behaviours that depart from and even challenge western medical norms. After all we have more than 200 ethnicities living in Australia! Caregivers are almost certain to encounter different cultural approaches to death. A Sikh family may view dying differently from a Cantonese, a Spanish, or a Sudanese family.

In some cultures, the person may not wish to know they are dying, in others this is acceptable knowledge. To complicate things even more, not one person in any culture will have the same expectations. Some may go against their religious and cultural norms and disregard their family's views. Family members in one culture may have a greater degree of power over healthcare decisions than those in another culture.

How can we make ourselves aware of the cultural, religious, and individual precepts of each person we care for?

This involves creating a 'space' for each family and individual to do things in their own way: from tending to the ill person and preparing for death to chosen rituals and behaviours.

We need to respect and acknowledge differences and follow the family's lead in caring for the individual in a way that is most appropriate for them. Is that a pie in the sky?

[Donte]

One of the things I have experienced through my grief and loss is immense anger and rage. I understand now, after being in bereavement counselling and support groups that anger is normal, healthy part of grieving and needs to be expressed in order for someone to be able to move beyond it. Of course, back then, in the early days when sorrow and deep sadness turned to apathy and depression, then to anger and rage, I didn't realize what was happening. I actually didn't have the awareness to understand that my irritation and rage and intolerance to others was due to my grief. In my limited understanding I thought that grief is sadness and as far as I was concerned i wasn't feeling sad at all. In fact I was totally emptied of sad feelings and was unable to cry or mourn like in the past.

What helped me accept my anger and recognize it as part of my grief was admitting that I was angry, to myself, to others and to the world. Once I did that, I had to change my self talk and alter my belief that I was in control of my anger - I wasn't. Then, it was a matter of gradually developing some calming down rituals like taking some time out, breathing deeply, counting to ten and backwards before I could reply to anyone, crying when I felt like, yelling or talking through the situation. I had to become utterly selfish for my own good.

Eventually, I started creating some problem solving patterns. This could only happen once I was calm. I worked out what I needed and I started keeping a journal and writing down or practicing saying whatever was needed to be said.

Finally, in order to harness my anger I had to learn to express myself assertively. People need to be encouraged to ask for what they need. I needed to practice speaking calmly, without yelling, so people will listen.

Looking back at this I am thankful for my anger for it has taught me so much. 🙂

[Donte]

Completeness Almost

You know, death doesn’t exist, he said to her.
I know, yes, now that I’m dead, she answered.
Your two shirts are ironed, in the drawer.
The only thing I’m missing is a small rose.

Yiannis Ritsos