Blog by our Co-Applicant and PPI Representative: Linda Cooper
My father Patrick Kelly died in June 2022 from heart failure. His end-of-life care wasn’t what we expected as a family. We were left with awful feelings of grief and guilt and also a strong desire to improve things for other patients and families.
I reached out on behalf of our family to several groups to offer our support and to the media to have our story told.
This was the right thing to do for us as a family, but we recognise that not all families feel strong enough to do this.
I believe that when we have suffered something awful, and it is now over, sometimes we don’t ever want to talk about it again. This means that important insights are never aired.
Through several organisations Voices for Care, Marie Curie, Western Trust and through the Queens University PalliatHeartSynthesis research group we were given a voice and have made a difference.
Some of the challenges we faced when dad was dying were:
- Timely access to essential medication. We had to go to collect scripts and then seek out a pharmacy to fill the prescription. This took us away from dad’s bedside for a significant amount of time
Western Trust has now successfully implemented phase 1 of the Just in Case (JiC) medicines pack (anticipatory medicines) protocol for patients in the community. They are now piloting the JiC protocols within the ward areas that then accompany the patients when discharged home. This initiative was recognised by the Western Trust as a very impactful Quality Improvement project and the team were recently recognised with an award.
- Access to help when we needed to make contact with GP and other healthcare professionals was a very protracted process. This involved calling the Out of Hours service, waiting to be connected, explaining the issues, then waiting for a call back to be triaged. Then finally waiting for the doctor/carer to attend. Even through our dad’s issue of acute pain was listed as URGENT, it took 2 extra calls and almost 3 hours for someone to come to our house.
The community nursing teams also had to follow the same protocol when they needed to discuss the patient with the GP. They didn’t have a dedicated contact number.
We understand that in the Western Trust, a dedicated contact number is now available for community teams. This will go a long way to reducing the time between reporting and treating the patient.
- Support for patients and families during Palliative Care and End of Life was absent for us. What we now understand is that Palliative Care is NOT End of Life care. Palliative care can and should be implemented at a much earlier stage of the patient’s journey. Someone described Palliative Care as, A cardigan that you put on and take off when it is needed. This is a very powerful image for me. Just knowing it is there provides great comfort.
Part of the Palliative care process should involve support for the patient and family and provide opportunities for discussion around difficult conversations. If these difficult conversations took place earlier when the patient and family have time to reflect, this would relieve many burdens on them.
Advanced care planning is a key part of this process. This involves initiating conversations around how and where the patient wants to spend their last days when the time comes. Conversations initiated by trained professionals can then lead to conversations between family members and the patient about such things as funerals, wills, last wishes etc. Often these conversations never take place, leading to life-long feelings of guilt and opportunities lost.
Advanced care planning is now recognised as a key part of palliative and end of life care and the benefits are understood. Difficult conversations are difficult for the patients and their families but also for the health care professional. To make sure that advanced care planning is performed correctly, training is required. A trained professional can help turn a potentially traumatic event which can contribute to life-long trauma into a positive event, helping carers on their journey towards recovery and acceptance.
- As a nation, we don’t talk about end-of-life and we think that Palliative care is only there when we are dying. There are a growing number of people out there who want to change that message. They want us to be better informed and know where to ask for and get support during the most difficult of times.
We all have a voice, and our voice is very powerful. Our voice is being ‘Heard’
If we don’t get involved or raise our voices to make sure support is there for everyone, then it might not be there for us.
So do what we did, Speak up and Speak out.
Linda Cooper