By VIEW editor Brian Pelan
I owe a huge debt of gratitude to All Ireland Institute of Hospice and Palliative Care for allowing VIEWdigital the opportunity to produce the latest issue of VIEW on such a sensitive issue.
It has been tough and challenging to compile a range of stories and comment articles that reflect the amazing work that goes into palliative care.
This edition of VIEW will hopefully challenge some of the misconceptions about palliative care. It can be provided for a lengthy period of time as well as the immediate care of those at the end of their lives. And people who receive good palliative care can see and experience the benefit of it on their lives.
In this edition, we talk to palliative care experts such as Dr BJ Miller who practises in the United States, and Dr Kathryn Mannix from Britain who is a long-time proponent of the argument that we all need to talk more about dying and death.
In the Big Interview on pages four and five, Kathryn writes: “In over 30 years of palliative care I’ve been involved in end of life care of between 10,000 and 15,000 patients. I have seen distress, and I have sat beside beds where I’ve thought: ‘This is horrid, I would hate this.’ But I can count those cases on the fingers of two hands and maybe a couple more. If we can manage the symptoms, the process of dying itself is something people can manage well and that families don’t need to be traumatised by it. They are left sad, but they are not left terrified.”
Writers such as Kathryn Johnston, Harry Reid, Louise Hagan and Kevin Doonan have all shared deeply personal stories about the loss of loved ones.
I am eternally grateful for these moving contributions.
It was a great privilege also to meet Colin Davis and his wife Victoria at their home in north Belfast. Colin, a former school principal, was diagnosed with motor neurone disease (MND) in May 2016. He has championed the campaign against the six-month welfare benefit rule where people with a life expectancy of more than six months have to have assessments to prove they are terminally ill.
He has been working with Marie Curie and the Motor Neurone Disease Association to scrap the six-month rule.
“Our aim is to scrap the six-month rule for terminally ill people,” he said.
“Nobody can tell me how long I’ve got to live, and to be reassessed for a Personal Independence Payment (PIP) causes a lot of anxiety.”
All of us have to face the certainty that one day we will die. We would like to think that those who are involved in palliative care will be there to assist us when we become ill or at the end of our life. These services need to be adequately funded for the best support services to be made available.
All of us in the VIEWdigital team are happy that we can use our platform of independent journalism to highlight the brilliant work that is taking place in the palliative care sector – both in Northern Ireland and the Republic of Ireland.
Please spread the word about our latest issue.