Louise Hagan, Service Improvement Lead, Palliative and End of Life Care, Belfast Health and Social Care Trust, writes about the challenges she faced when her own father was dying
Life is a bit like writing a book. It has a beginning and an end. And in between there are chapters. Some chapters are fast paced, full of adventure. Some chapters are much slower, filled with the everyday motions of life. But every book has a final chapter.
When the final chapter looms, it catches us all by surprise, no matter how young or old we are. Life is a gift. And my own father’s life was a fantastic gift to us. His final chapter may now have been lived and his book closed but it remains not only in the libraries of our memories but in the chapters of our own books.
When people hear my work revolves around service improvement in palliative and end of life care, the initial reaction is a cock of the head and how difficult that must be. I tell them it’s fantastic when we get it right and motivational when we don’t.
When I started in my role, it was based on a set of recommendations from the Living Matters, Dying Matters strategy. Boiled down to its most basic, it meant identifying people early who may be nearing the end of life, clear and effective communication and understanding, advance care planning, key worker, coordination of care and planning, and optimum care and support. Just one person not signed up to the collective can take us back to
square one, regardless of all the strategies in the world.
In 2008, my own father was diagnosed with a life-limiting combination of renal and prostate cancer on top of existing renal disease. Resection of the kidney tumour may have taken that cancer away but would likely have left him on dialysis for the remainder of his life. Travelling 40 miles a day for dialysis was not a choice he wanted to make, so he chose quality over quantity.
Dad was admitted to his ‘local’ ED suddenly in the summer of 2018. His organs were shutting down and sepsis was spreading through his body. I understood the hints the doctors gave about prognosis but, glancing to my side, I couldn’t be sure other family members did.
We often try to say things in a way that is gentle and kind yet what was needed there and then was gentle, clear honesty. Etched in my memory is asking mum if she understood what the doctor was saying. “Sure, he was ill but this was just a bump in the road, right? They’d patch him up and he’d be back home to live out the rest of his life in his own home.”
The pain of being the one to guide your own family to the realisation that he might not recover from this episode is a gut-wrenching memory that I would rather not have had to have. I longed for it to have been someone else but it was me who forced the brutal interpretation of the doctor’s gentle words into that room. “Do not resuscitate” was then tumbled out at the end of the conversation – a breath-stopping end point to the discussion and a blunt beginning to a different set of terms we didn’t know we had signed up to.
Words. A few simple words. A well-intentioned comment that seemed the right thing to say. “Your condition is progressing.” Progression is positive, right? It wasn’t. The doctor probably thought they were clearly communicating a deterioration. They meant no harm, yet a few simple words represented a tangled web of misunderstanding that took much longer to untangle than to say.
“Your kidney function has improved greatly– we’ll get you home soon”. Fantastic, right? Not when a body is still ravaged with sepsis, blood still being transfused and delirium is rife. But one simple, well-intentioned sentence resulted in a week of frustration, confusion and anger. Again, no harm was meant but the take home message is in seeing the person at the end of those words as a whole person, not a collection of separable body parts. Dad was dying. We knew it. He knew it. Maybe not today or even this year but we all knew.
In the space of eight weeks an impatient dad was moved eight times. With each move his head dropped further and his heart sank deeper. Each move to us was aimed at getting him home. For him, it seemed to move him further and further from home. On paper and professionally, I understood the rationale for each move but in reality, it seemed cruel, bumping him around the system.
Decisions were made with all the best intentions, based on criteria, perceived need and words on a paper. Patient and family choice seemed a secondary consideration.
I don’t recall the word palliative being mentioned once throughout 11 years. Maybe it was but my memory is that it was almost actively avoided. Is that because it evokes fear, an end to hope? Or is it because there is no clear consensus to what palliative actually means to the general population?
When we got dad home after he was very ill, hospice specialists were called in temporarily which definitely hinted at palliation but the words themselves seemed to fall into a puddle that everyone jumped over.
Regardless of what we call it, we need to be promoting the understanding that care towards the end of life is provided daily by professionals of all specialties and none. The key to good care at end of life is empowering those people with whom we have already built a relationship to be equipped and confident to care for, support, and hold our hands as we make that journey towards the final part of our lives.
All the strategies, plans, programmes and visions are great but they mean little unless every single person takes individual responsibility to collectively follow that vision each and every day.
And that’s what we forget. It’s the small things that make a big difference. After the calm and squall, a journey spanning many wonderful chapters came to an end at home in February 2019 and, in the end, the tide went out peacefully.