Horst Jonas, 83, terminally ill yet still communicating with relish with friends and family six weeks before his death on August 20, 2016.
OPINION: I’ll never forget that look in my dying father’s eyes when I last sat with him in the hospice. By this stage he was non-verbal, but we were close, and I am still haunted by what his eyes were saying….
Why am I still here?
Why have you let them keep me alive like this?
I hate being like this!
I don’t want to be suffering like this, and what are you doing to help me?
You know I don’t want to be here still… how can you just sit there and let this go on?
We were told his trip to the hospice would be his last. He had made his last cup of tea at home, had his last shower, had his last shave, executed his last autonomous acts of self-care, of self respect, with his own unique blend of humility and pride.
Slowly, with great and dignified effort, in his thick stripey dressing gown, he left his family home he’d built himself over 40 years ago. The ambulance trundled and lumbered across the city he had called home for over 57 years, passing other walls and houses he had built, in testament to his many skills and dogged work ethic. He had lived a full and admirable life, full of adventure, travel, love, work, a wicked sense of humour, a genuine interest in his ‘fellow man and woman’. Many a client, neighbour and acquaintance had a soft spot for him.
Once within the hospice walls, time was measured in morphine doses, catheter inspections and care routines. Visits from treasured family members and friends lightened the heightened atmosphere of hushed whispers, choked sobs, secret tears. Never were some of us closer, and those swishing curtains could only hide so much.
After a week, we were told there was a problem with the fact he was ‘not dying quickly enough’. Not only was he in increasing pain, but the hospice ‘was not funded for dying beyond one week’s duration’.
A lack of local hospital-level beds was the only reason we did not actually have to wheel him out of there again, semi-conscious, semi-delirious.
Our lack of medical expertise meant we only had our knowledge of our father’s rapidly diminishing communicative skills to draw upon; asking for increases to his morphine levels was met with reluctance and suspicion.
He was cared for competently and respectfully, without doubt, but it was clear to us that his suffering was only gradually increasing. Did they suspect we were quietly asking that they end his suffering more quickly? Who knows… they certainly were rigidly adamant that he should not receive ‘too much’.
Why not? Was it the Hippocratic Oath? Their religious beliefs? The law?
Is this the way it is ‘meant to be’? If he was an animal on the farm or a beloved pet, he would have been put out of his misery days ago, at least….
We have never been more united in our memories of this time, and our overriding feeling that our beloved father, friend, grandfather and husband was somehow cheated out of a dignified death, a death without undue suffering. Despite our best efforts, our 24 hour vigils at his bedside, our repeated requests for increased pain relief, we felt we somehow failed him when he needed us most.
Do I think we should have a law that allows assisted dying for terminally ill patients ? You bet.