Unnecessary suffering - Jim Collins
Jim Collins (pictured here 2 weeks before he died) suffered unnecessarily because of an incorrect terminal diagnosis
and a doctor untrained in palliative careEileen fondly remembers her father Jim, as an active, busy marine engineer until a severe coronary struck him down in his early 50s, in 1981.
"The doctor told him he had at the most another six months to live. 12 years later, after his ninth coronary and a bad stroke, he was still going. He had to get around on crutches but Dad took a positive approach that at least he was still mobile. Constant low-level pain was a cross he was prepared to bear."
"I admired the way Dad 'lived' until he died. When he could no longer carry on the physical demands of a marine engineer, he just changed tack and took a course in how to be a ham radio operator. Armed with this new knowledge in practical electronics, he kept himself busy making power packs for CB radios in his workshop."
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" ... [the suffering] was due to a lack of proper training in providing palliative care." |
"When going outside to his workshop in winter proved too much for him (he was crippled and had to use crutches), Dad learned computer skills and became active in the Whangarei branch of the Disabled Persons Assembly and put his newly found skills on the computer to work in public relations.
"Dad was a forceful lobbyist and after one of his coronaries, instead of canceling appointments, he had the local Member of Parliament and the city Mayor come to his hospital room to listen to his concerns.'
"After his 9th coronary, the doctors at Whangarei Hospital decided that Dad could benefit from a triple-heart bypass, although it was pretty much a 50/50 chance. His heart was in such bad shape that it was unlikely, they said, he would live another 12 months without the surgery.
"One doctor, probably a newly registered one, who didn't know Dad, suggested that he had 'unstable angina brought on by a fear of dying.' He didn't know my father. Dad, when he found out this supposition, believed that the 'doctor' in question had obtained his qualifications from a questionable source...to put it mildly.
Dad had already planned out his funeral some time before so he thought he might as well give it a go (we thought of a remote-controled microlight plane out over the harbour, but he vetoed that). I remember that the entertainer Sir Howard Morrison had one at the same time. However, things went badly wrong.
Over the years Dad had been given medication that had ultimately damaged his kidneys, and it was all too much for his system. He was transferred to Whangarei Hospital with a 'negative prognosis'."
"Mum decided, in those last weeks, that she wanted to have him at home. She believed that the family could care for him more lovingly than hospital staff. The last two weeks of his life were difficult, but not because of being cared for out of the hospital...
It was made worse because Dad's doctor was on holiday and the locum standing in, was reluctant to provide morphine, even though Dad clearly had only days to live."
"Fortunately a nurse friend, who had experience in geriatric care, persuaded the locum to provide the morphine necesary for pain relief. Dad relaxed, slipped into a coma, and died soon after of kidney failure, surrounded by his wife, children, grandchildren and great-granddaughter."
"Looking back, I can see how Dad, and the family, fell through the gaps in accessing proper palliative care. Because he was diagnosed with kidney failure, we were told he wouldn't be eligible for hospice care ? that was seemingly reserved for cancer patients. But nobody volunteered that there were other options.
"For example, we found out later that we could have had a hospital bed delivered to the home, along with special belts for lifting Dad, and a laundry service. So there was really no need for Mum to wear herself out before the rest of the family were able to make themselves available."
"Dad himself needn't have had to have endured the suffering of the last two days, if the doctor had made the morphine available much earlier, and in larger dosages. I now see that it wasn't the doctor's fault, but that it was due to a lack of proper training in providing palliative care. She didn't know the basics of pain management. I hope that effective training in palliative care is regarded as essential in medical school in the future."