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"End of life experience at Sir Charles Gairdner Hospital"

About: Sir Charles Gairdner Hospital

(as a carer),

My mother was dying. Very slowly, it was taking a long time. She was under the care of the oncology department at SCGH, which she attended monthly. She was taking chemo tablets and had some issues with side effects. Her initial diagnosis was breast cancer, but after mastectomies, a hysterectomy, having her lymph nodes removed and being diagnosed with end of life bone cancer, she was just about finished. I feel she did not want to be alive anymore because she felt her care provider was terrible - they had revolving casual staff who often spoke hardly any English. We wanted to respect her wishes and keep her at home in the community as long as possible.

At the end of her life, she fell. We were really concerned because she was mostly at home alone (we live in the country) and we could not continue driving down every day, after two years of this we were shot. So I took her to her GP and told them I wanted her fall investigated and also some respite in either the GEM ward (gerontology) or the palliative care unit.

He wrote a letter and we admitted her.

After a few days her condition deteriorated a LOT. It became apparent that she did not just have an exacerbation of her condition, she was dying. Within four days, she could not walk. Within five, she could not toilet herself independently. Within six, she could not feed herself and by this time we were pleading with the staff to get her into palliative care because it was clear to us that she was dying. It appeared it wasn't clear to anyone else, because none of the staff from palliative care - who initially refused to refer her because they did not think she would die within six weeks - talked to the ED staff. I felt they did not believe that she had walked in and was generally well - if they had spoken to staff at that stage they would have known that her decline was fast and continuous and was going to mean death very soon.

We were awfully upset and her care on the ward was not good. Within one seven hour period her continence aide was not changed and she developed a bed sore. I fed her but could not change her as I am disabled. This was very upsetting and I am still upset that my mother suffered avoidable pain at the end of her life. We were not told about the bed sore, although it was written up in her notes - they only discussed it when we said she was complaining of pain in the region of her buttocks.

And then after I cracked it with the palliative care team, they rescinded - they had spoken to the admitting doctors who noted that she was relatively well when she came in. She had a 'power day' and was fairly bright the day before she was transferred to Murdoch Hospice. By that morning she was unconscious. By that night she had died.

I did not make a complaint - we were too numb and shocked and horrified that something that we had been expecting had gone so poorly. We are well educated people who are good advocates. My mother did not deserve to be treated with such callous disregard by the people we encountered who appeared too busy to care.

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