Diane Walker talks about her mother Annie’s experience of advance care planning in Northern Ireland, and how having the opportunity to discuss her wishes meant she received the care she wanted in her final days.
Even though my Dad had been ill for several years we’d never discussed what would happen at the end of his life. Following his death, our family regretted not having those discussions and my Mum was keen to ensure things were better planned and hopefully easier for my brother and I when her time came.
Mum had been diagnosed with Parkinson’s disease several years previously; although her health was stable she wanted to prepare for the future.
We talked with each other and with her Parkinson’s consultant so Mum knew what to expect as her symptoms got worse. Although the consultant couldn’t tell her the speed that the disease would progress, she did set out the likely symptoms and treatment options she could have.
Mum mentioned her worries about what may happen as her condition progressed and made an appointment with her GP to discuss her options further. The GP listened carefully to Mum’s concerns and suggested she take some time to think about how she’d like to plan and make choices about future care.
Mum was clear about what she wanted for her future care and we helped her to note down her preferences and treatment priorities in the Record of my wishes document [PDF]. She didn’t want us to give up our lives to care for her, she didn’t want to be resuscitated, and if possible she would like to stay in her own bed. She also expressed a fear of being in pain at the end. As a family we found it difficult to think of Mum dying but were amazed at her strength to be able to think of these things and have them written down.
The following week, I went with Mum to speak to her GP again. Together they went through the wishes for her care at the end of her life. He was very prepared and spoke to Mum clearly and treated her with compassion. He explained these conversations would help guide him and others involved in Mum’s care to know what she would want when they had to make decisions about her care. Mum gave her consent for the information to be shared with any other healthcare professionals involved in her future care and it was included in Mum’s medical notes.
During this time Mum had also arranged with her solicitor for me to be her Enduring Power of Attorney. We knew this only covered financial affairs but she wanted me to make financial decisions for her when she was unable to do so herself.
As her Parkinson’s progressed and her health began to deteriorate, Mum moved into a nursing home where her GP visited her and recorded her care wishes in an Advance care planning summary, which is available to professionals in Northern Ireland from their local HSC Trust or Integrated Care. This document hadn’t existed when we first had these conversations but it helped to revisit her wishes.
While in the nursing home, she had to change to a more local GP. We received a call from the new GP who asked us to come to the nursing home to talk about Mum’s current health. He had already reviewed her medical notes, in particular her advance care summary, a copy of which had previously been given to the nursing staff for their records.
He was very gentle with Mum and although she was losing capacity, he did his best to involve her where possible. During these discussions I made it clear that Mum didn’t want to be resuscitated, as written down in the advance care planning summary. At this point he went to speak to Mum directly and completed a DNACPR form for her, before informing the nursing home staff. There was a big notice board in the staff room at the home with pictures of the residents. Mum had a little * next to her picture to show that she did not want to be resuscitated (DNACPR), and if possible, not to send her to hospital.
Mum lived in the nursing home for just over two years where I visited her every day. During that time she was also diagnosed with dementia and was prone to infections and falls. The staff and GP were great and always aimed to manage these in the nursing home to try and avoid admissions to hospital. Taking her away from the nursing home environment made her agitated and scared. There were a few instances where Mum had a severe infection and had to go to hospital to receive intravenous antibiotics, but the nursing home staff always ensured the paramedics were aware of the advance care summary.
My Mum’s final deterioration was quick over the course of a weekend. On the Sunday afternoon it was apparent that she was in pain. The GP out of hours was called and he initially suggested sending her to hospital, but the nursing home staff knew her wishes and that she had her family around her, and insisted she stay in the home. After reviewing her advance care planning summary, the GP out of hours was able to arrange appropriate pain relief in the nursing home.
My Mum passed away peacefully several hours later in her own bed and I was holding her hand. Following her death, I’ve taken great comfort from knowing that we were able to care for Mum how she had wanted in her final days.
Diane, Annie’s daughter.
For more information about advance care planning in Northern Ireland, the Your life and your choices: plan ahead [PDF] booklet is about some of the ways you can plan ahead and make choices about your future care. It is for anyone in Northern Ireland who wishes to plan ahead, whether they have a serious illness or not.