Jul 03, 2017

“How Could the Nurse Not have Known My Grandma was Dying?”

Submitted by Anonymous

I still reflect on my grandma’s death.

I tried to see the positives immediately after. And now I’m reflecting on the things that potentially could have made it a bad death.

I only raise this because I think there is a lot of work still needed in the training of nurses and personal carers on death and dying.

My grandma had advanced stages of dementia and as a family we knew she was ‘dying’, perhaps not imminently well, at least not until the day of her death.

It was a Thursday afternoon and I felt this need to go and see her before an appointment I had. So I dropped in on my way home.

When I saw her, immediately I knew she wasn’t well.

She was struggling to breathe – extremely short of breath, cyanosed (blue in the face). I could see this was the beginning of the end. There was no way we (as a family) where going to send her back to hospital.

We did that 6 months earlier and I had regret ever since. She came back worse to the nursing home. More impaired and calling out significantly distressed. It wasn’t a life I knew she would have wanted.

I immediately went to get help from the nurse. I told the nurse, “my grandma’s dying and I’m not happy with how uncomfortable she is, can we give her something for her breathing, like morphine or rubinol?”

Nurse: “We don’t have any medication like that for her because she isn’t palliative.”

Me: “Pardon? What do you mean she’s not palliative? If we are looking at the same lady, she is dying.”

Nurse: “No palliative care is when we have a family meeting with the doctor and everyone’s on the same page for no further treatment”

Me: “No offence – but we have missed the chance for that meeting and we aren’t going to have it”.

It clearly came as a surprise to the nurse. I had asked for the GP to come in straight away – which was good enough that he did. He confirmed she was dying and started her on a small dose of morphine.

I called my family in.

And 4 hours later my grandma died.

Had I not chosen to come in that night. Had I not been aware of a deteriorating person. I wouldn’t been there for her death. She would have suffered on her own. She would have died in the night. Without her family.

Luckily for my grandma, this wasn’t the case. Luckily she ended up dying incredibly peaceful as the morphine slowed down her breathing. She had all her family surrounding her like she would’ve wanted.

This could’ve easily been a different story.

It’s not all the nurse’s fault. The GP has to play some role in this. Only months earlier I had requested a referral to palliative care service. He got rather short and said “she doesn’t need that yet”.

It was obvious to us that she had basically stopped eating, only having thickened fluids and was confined to bed, incontinent and sleeping more. A significant change from a month or so earlier.

Had the staff all been aware that she was palliative perhaps they would’ve been in tune with what to expect.

I don’t know what the answer is here. But I feel maybe RN’s working in aged care need to do a placement in a specialist palliative care unit to get more experience. With clinician’s surrounding them.

How do we prevent potentially ‘bad deaths’ from continuing to occur?

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  1. I 100% agree with this. I am a carer in an aged care facility and have had arguments with RNs over whether someone was dying. Most recently was a gentleman who everyone knew was deteriorating and yet there was nothing in place from the GP or RN to keep him comfortable. 3 days after demanding EOL medications, he passed away. In a beautiful peaceful way rather than struggling for every breath as he had been.

    1. My parents have just gone into care and this story chills my heart. Family have to be vigilant and not assume anything, basically we all have to be aged care experts ready to act as advocates at a moments notice. The law and doctors appear to act against us. We have been trying to get our mothers license revoked by vic roads for 2 years now. She has it I able memory loss that compromises her cognitively along with a raft of physical problems and all we face are obstacles trying to keep her and the public safe on the roads

  2. R/N’s need to be more pro active and check on residents health and not leave it up to the carers to report any changes in a person health. Family members need to monitor their love one’s health. When I notice changes in my husband health I report it to the R/N.

  3. I being a personal carer have seen this alot that is why i am leaving the industry,Its us personal carers that look after other peoples family to get told by RNs when we go to them concerned that we dont know what we are talking about as we are ONLY carers and dont hold that “qualification” I have seen numerous deaths that did not need to happen and when report it we get laughed at or more less told to go away .there is noway on this gods earth would i put my close family in a nursing home NEVER

  4. I think your final sentence is very useful. Virtual,y every patient in an aged care facility will die there and it is up to the providers (GPS, RNs) to ensure that the dying is best practice.
    I am an independent patient advocate and I frequently plan and monitor care for dying patients. I am met with suspicion, resistance and ignorance more often than not by providers. It is poor care.

  5. I found it extremely difficult with my mother in care to see her slowly fade away. Many a time I thought that her time had come. The staff were wonderful but I was so ignorant as to know what to look out for. I thought that there would be an indication so that I would be prepared and able to have the last hours with my Mom. The day before my Mom passed she was eating and sitting on the side of her bed. The next morning I got the call to go to the facility quickly. I had just a few moments with my Mom. I am grateful for that. Ever since though, I cannot but wonder what her last hours were like. How did the staff know that she was going. I am grateful that the staff made her comfortable as they gave her morphine. But how long was Mom like that before they discovered her. So, so difficult. My will be forever grateful for those who cared for my Mom.

  6. I personally feel , we as a society need to start considering how we are going to start looking after our own families. Planning and considering it way in advance. Not paying someone $20
    an hour to look after our precious family- Perhaps if it is so important a job it needs to recognised by the community and paid accordingly. It is a “job” after all. And one that perhaps we should be doing ourselves. …….

    1. Jill you’re 100% right.

      Too many old people being warehoused by their selfish adult children.

      Grief eventually softens to sadness, but I’m afraid guilt and regret after a loved one dies never go away.


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