This is Good Grief’s second reflection on our consumer survey which asks:
What is your biggest question about dying and what is your biggest fear?
We’ve had 35 responses until sharing this story now. But the survey is on-going, so we’ll continue to share the results – since it will help give insights into what’s on your minds when it comes to death.
We’ll find the answers to your questions. And hopefully that information will help those of you who have or are soon to face the death of someone close. And it will show those professionals and carers who support you and people like you, what is top of your mind.
I’m focusing on the responses that show a fear of dying alone at the moment – although many other answers are coming in. (We’ll talk about those other responses in later posts.)
There’s space in Good Grief’s simple and short survey for two questions and a third comment. And some people have raised multiple issues in their responses.
So this has delivered 85 different concerns so far.
Of these, 10 relate to a fear of being alone at death. Some have given a short answer, such as this one, responding to the question – What is your biggest fear?: “I will be alone and have no support.”
The person who wrote this, anonymously, attended one of our workshops in a regional city in NSW with good medical resources. So available and existing services could work to ensure she will not be alone – either giving access for family and kin to be present or someone else. Yet, she doesn’t know this is something she can request.
Others have expressed the same fear of dying alone in more detail. This one was an internet response. Her name was given, although we’re not publishing it.
“My biggest question is: when someone is dying alone in a hospital setting, how does it feel for that person?
The answer is complex, I know. I‘m thinking of my brother who died alone after a cancer op, unexpectedly. He had terminal cancer we only knew about later, after his death.
Suffering immensely, didn’t want any support. So much in only three months happening, only 63 years of age. Our other brother died only seven months before, 64 years of age.
Dying alone in a hospital bed – what were his last thoughts? Why do some people (not) want help and support when they know they will die?”Name withheld
This person’s reflections on her two brothers’ deaths – both alone – very reasonably, raise questions for her about whether she will be alone at death. I hope this question is addressed when her time comes, and she is given the opportunity to avoid this situation that she fears so much.
It sounds as though one brother rejected offers of support. Was this offered at the right time? It’s possible he had social issues before he became ill, causing him to reject support. This raises another issue: Do we do enough to help the elderly and ageing, so they don’t feel unsupported during their journey through the end of their life, not just at death?
Do people die alone in modern hospitals – or is this just the perception? If it’s not true, we need to share how hospitals work to avoid this. One survey respondent asks that someone hold her hand as she dies.
We know of one scenario where an elderly gentleman couldn’t be transferred to the palliative care unit in a hospital because he was too close to death when he arrived in Accident and Emergency. I understand that someone did sit with him.
Do all hospitals have quiet spaces in their A&E’s to manage this? Can we be sure that someone, in that busiest of places, can be assigned to be there, to hold his hand?
We’ll find out and report back.
Dying alone is a common fear
Other respondents live alone and fear they’ll die alone because of this isolation. For example,
“Biggest Question: How can I be sure I won’t be left in my apartment, slowly oozing away.”
Graphic language. But it goes right to the heart of it. And living alone in old age is a common enough scenario for dying unattended and unnoticed, to be a realistic fear. Again, as a society what systems and networks do we have in place to ensure this doesn’t happen?
And what is it to die alone? We hear so many stories of the person who had someone with them until the end, but that person slipped away to have a shower only to come back and find the person had died. I don’t consider that dying person unsupported. Functionally they were not alone, although at the very end they took the opportunity to die alone.
However, there are many others who can be lucky enough to have a junior doctor or a hospital volunteer with them when they die, but who were actually completely isolated and alone as they went through their last illness.
Have these people simply managed their lives in such a way that they have shaken people off? And what is our responsibility towards them?
Here is the table of responses to “What is your biggest question and what is your biggest fear?” (and one that implies it.)
|“Fearful of being alone at the end.|
|“I will be alone and have no support.”|
|“If you live (and die) alone, how would anyone know to find you?”|
|“How can I be sure I won’t be left in my apartment, slowly oozing away.”|
|“That I will be in emergency unattended, that no one will be present with me and simple things like holding my hand, speaking gently to me. That carers keep my animals away from me, thinking they are doing the right thing.”|
|“I guess being alone when it’s time to die. It would be nice to have my children and grandchildren their supporting me as I move on.”|
|“Being alone in a medical atmosphere.”|
|“My biggest question is: when someone is dying alone in a hospital setting, how does it feel for that person? The answer is complex, I know. I‘m thinking of my brother who died alone after a cancer op, unexpectedly. |
He had terminal cancer we only knew about later, after his death. Suffering immensely, didn’t want any support. So much in only three months happening, only 63 years of age.
Our other brother died only seven months before, 64 years of age. Dying alone in a hospital bed – what were his last thoughts? Why do some people don’t want help and support when they know they will die?”
|“And that is my biggest fear: to die alone… I fear the cold world I might go to when I die like space, that there will be no one, me on my own. Like I‘m in life right now. Terrified.”|
Read our earlier article on our survey results here.
Advance care planning is a way of ensuring you will not die alone if you don’t want to.
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