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VOICES
"My four-year-old son got up on the stool, held my father's hand, and kissed him"
Watching a loved one slip away is hard enough, writes Denis Goodbody, but good palliative care supports the family as well as the patient.
I WISH WE had understood more about how the hospice worked before we came to avail of its services. Though I can’t speak for my siblings, I knew nothing about palliative care beyond the idea that it involved minimising pain.
My father, Dr John G Goodbody, had been an anaesthetist. Over the course of his career he would have been involved in pain management with his own patients. During the course of his illness I realised, with some discomfort, that as a medical professional he knew exactly what was happening to his failing body. I didn’t envy him that but I was in awe of his pragmatism.
From his diagnosis with Non-Hodgkin’s Lymphoma, right to the very end, he made sure to do exactly what he needed to do, from treatments and medication through to getting his affairs in order and ensuring my mother would be looked after.
On a number of occasions his GP suggested that he should go for respite to Blackrock Hospice, just down the road. He declined. He was determined to keep on keeping on. I believe he saw going to The Hospice as giving up.
The source of my regret
This is the source of my regret. From the experience we were to have later, and from what I have learned since, I know he could have benefited greatly from the palliative resources available to him.
I remember hearing that he had asked to be taken to Blackrock Hospice and, from then on, his decline was rapid. It was a decision that meant the battle was nearly over.
He was admitted on Thursday afternoon. By the time I got to him on the Friday he was unconscious, probably as a result of medication. The staff were amazing. I think I had expected a sombre and dour atmosphere but, on the contrary, everything was warm, friendly and welcoming.
I was struck by how unlike a hospital it was. There were open areas with comfortable seats, a play area for kids and his room was really nice – had he been awake he would have appreciated both the view through the window and the real paintings on the wall.
I remembered reading Bono’s account of his father’s death. He had asked the hospital if they would let him stay the night in his father’s room, something that had really helped him on the journey. I’m not a rock star but I thought it was worth asking.
The “Yes” was immediate and I was made to feel very comfortable. I didn’t get any sleep but a great deal was communicated through the long silence of the night.
I went home on the Saturday morning feeling that I’d said my goodbyes and that any subsequent time would be a bonus. It was to be two more days.
We could treat the hospice like a living room
On the Sunday, I brought my four-year old son to Blackrock. At one point he came into the room, from the play area, and drew over a stool to the edge of the bed. He then got up on the stool, held my father’s hand, leant over and kissed him on the forehead. That is a moment I will have forever. He then got down from the stool, dragged it back into place and went back to the play area as if it was all just a daily routine.
Throughout the course of that weekend, my family treated the hospice like a living room. We were losing someone we love very dearly but whose time had come. We were given the time and the place to reconcile ourselves to our loss and to be together at a milestone in our family story.
Greater awareness
This is Palliative Care Week 2016. Co-ordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), it aims to bring a greater awareness and deeper understanding of palliative care across the island of Ireland.
Given my experiences, and help that palliative care gave to me and my family, I am very happy to support the campaign and encourage people to use it as an opportunity to find out more.
The findings of a nationwide public awareness survey, commissioned by All Ireland Institute of Hospice and Palliative Care (AIIHPC), found that a greater awareness is needed.
The survey found that half of adults surveyed in Ireland (55%) said that they have a basic or minimal understanding of what palliative care involves. Eighty-five percent of respondents did not believe that there is sufficient public understanding of palliative care.
The Palliative Care Week campaign slogan is ‘Enabling Living’ to highlight the positive impact palliative care has on the quality of life of people living with a serious and progressive condition.
The key messages of the campaign are that Palliative Care:
- Ensures best possible quality of life for a person with a serious and progressive condition, regardless of age or condition
- Involves the person and those close to them
- Supports planning for the future
- May be appropriate for a number of years, not just the weeks and days at the end of life
- Puts the person at the centre of care whether it is provided at home, in a nursing home, hospital or hospice
I encourage people to learn more and to understand that palliative care has an important role to play to support both patients and their families.
Easy to understand videos, leaflets and links are all compiled at thepalliaitvehub.com
Denis Goodbody is the son of Dr John G Goodbody and told his story to us in order to highlight the major difference that palliative care made to the quality of life of his father and surrounding family.
