Paula O'Reilly: ‘Not dying enough' was the response when I tried to get end-of-life help for my mother
This was just one of the challenges we had faced in those last three months of my mother's life. Instead of being her daughter, I felt like a project manager. My focus was on trying to overcome obstacles and inform ourselves as a family as to how we could honour her wish to be cared for at home.
We had navigated our way through organising our own carer, sourcing a hospital bed and finding support for medication management – all due to services not being able to respond in a timely and co-ordinated way. This created a constant level of stress about whether we could manage it ourselves.
There were times we seriously debated whether we needed to go to A&E, simply because there were no out-of-hours supports available. These challenges, I would find out, are all too familiar to families and loved ones supporting someone with a life limiting illness.
Last year, the National End of Life survey (NELs) reported that the care in the final two days of life was good or very good – which was our experience. In those final days, my mom received night nursing and community palliative care and the support was excellent.
The NELs also reported that as people move out to the last months of life, the experience becomes much less positive. Care in the community – where most people wish to spend their final months – was rated the lowest across all settings, despite being the preferred option for so many. In fact, NELs responses indicated that fewer than half of those surveyed (45pc) felt there was good co-ordination of care across different settings in the last three months of life. However, in the last two days of life, that percentage rose to 74pc.
When it came to communication at end of life, all those surveyed indicated that a discussion about what to expect when dying would have been helpful, but there were very different outcomes depending on the setting in which a person's loved one was based.
In home-based settings, 24pc of people said healthcare staff did not speak to them about what to expect when their loved one was dying. In nursing homes, 64pc of bereaved relatives said healthcare staff spoke to them about what to expect, and 28pc reported not having this discussion.
In a hospice setting, 83pc of bereaved relatives indicated that staff spoke to them about what to expect when their loved one was dying. Conversely, for those in a hospital setting, 76pc of participants said a discussion about what to expect when their relative was dying would have been helpful.
The challenges faced by families were highlighted to me again this month when I heard Senator Aubrey McCarthy raise his concerns regarding his own personal experience with a friend wanting to be discharged to die at home, but the supports weren't available.
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I also learnt recently that A&E deaths account for 20pc of all deaths in acute settings. I couldn't help but wonder what that end-of-life journey might look like for the person if communities could support them better earlier on.
This is similar to what the Irish Hospice Foundation (IHF) is hearing through our recently launched information and support line, where a recurring theme relates to loved ones reporting that they are being left to case-manage the person who is dying.
The care at the end of life is not just those last couple of days, which we know we can do well, but the challenge is accessing the right supports at the right time in a co-ordinated manner in those last months of life.
Family and loved ones will always play an important role in supporting the person in their end-of-life journey. However, in order for communities to support a good death, it includes having the right information, timely supports and training for families and carers.
The IHF can offer support to families. We are adding a range of new resources to support people who are caring for a loved one at end of life, with accessible online training and information resources including booklets available in different languages at hospicefoundation.ie.
The freephone information and support line is also available to offer valuable and relevant one-to-one support and advice every weekday morning from 9am to 1pm at 1800 60 70 66.
The IHF advocates that every death matters and how we are cared for matters in those last months as well as those final days.
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