MY HEALTH EXPERIENCE:Parents' deaths gave real insight into the caring profession, writes JEAN TUBRIDY
THE PAST six years have taken me on a journey as a daughter witnessing the final stages of my parents’ lives. This journey raises many issues about ageing, caring, dying and death in Irish society. These need to become part of a fundamental agenda to change the way we treat end-of-life issues.
The term “journey” almost always implies forward planning, but my journey was akin to grabbing on to a moving train without a ticket. It wasn’t that there was no time to plan. It was very much that, as a family, like so many others, we never sat down to confer about the road ahead.
In my case, the “jump” onto the train came when my mother, who was then 84, had a fall in June 2005. A few hours later, she had her first seizure and was rushed into hospital. That night was my first major encounter with emergency departments. I can still feel my tension, pounding heart, sweaty hands and sheer terror as I sat waiting for news. I would have given anything to have someone, a friendly face, to liaise between me and the busy medical staff.
A key question in dealing with crises, especially among older people, is do we overuse emergency departments? I raise this because of the different pattern in my actions regarding my father compared with my mother.
After my mother died in May 2009, I was given little hope about Dad’s future. He was 90, had a serious heart condition and a diagnosis of Alzheimer’s disease. He was living at home and survived for a further 16 months. During that time, I came to fully accept that he was going to die. Various crises occurred and various questions arose.
What benefits could be accrued from taking him to hospital? Was there any point in putting him through a series of tests? If he did not want to drink, was it right to take him to the hospital to have fluids pumped into him? When he asked to be “let sleep into the next world”, was it right to try to prolong his life?
I learned through my experience with my mother that there can be conflicting opinions about the ethics of intervention versus non-intervention. It certainly seems there is a strong emphasis within the health services generally, with the exception of the hospice movement, towards prolonging life.
Decisions about a “patient’s right to know” have strong parallels with those around intervention/non-intervention. One of the heightened moments for me was when my mother was in hospital being assessed for the possible insertion of a feeding tube and my father was admitted with what was deemed to be a fatal heart attack. A key question was whether my mother should be told that he was “dying”.
My view that she should not be told unless he actually died was over-ruled by the hospital staff on the grounds that she had a “right to know” and should be given the opportunity to say “goodbye”. She was deemed fit to be told on the basis of a quick check of her vital signs. As I anticipated, she did not wish to see Dad unconscious but wanted to speak to me. That was our last proper conversation as she suffered a stroke about an hour aterwards from which she died five days later.
In hindsight, I am very glad that Mother was spared the trauma of having a feeding tube inserted. I am glad she died believing her work was done in caring for Father. However, a number of aspects surrounding her last days raise important questions.
The first is amazement that, as I recollect, within an hour or so of being told that Father was dying, Mother was being prepared to have her swallow tested. What does this say about understanding the impact of being told that one’s spouse is dying? Or was it that there was such poor co-ordination, that no one informed the team that Mother had just been hit with shocking news? It was at the point, when she was about to embark on the basic swallow test, that she had the seizure/stroke from which she never recovered.
Another aspect of Mother’s case, which highlights aspects of decision-making in hospitals, was the absolute refusal by the hospital to allow her to have her seizure medication on the evening before this final seizure – that was the evening she had been admitted to hospital. I knew from experience that, without medication, she was prone to have seizures.
The hospital was adamant she was not allowed to swallow anything because she might aspirate. There was no satisfactory response to queries about alternative methods of administering her medications.
This whole episode left me with a sense that little account was taken of my in-depth knowledge of my mother. Having cared for her at home for five years and having been extremely close to her for all my 52 years, I was suddenly cast into the role of some outsider who should defer to the greater knowledge of the “experts”.
The final straw, in terms of being treated like some sort of outsider, came just 12 hours before Mother died. She was in a ward, with no privacy, except curtains around her bed, which were open to allow her to be observed.
At that point she had been completely unresponsive for over two days. It was clear to me she was in decline. When I asked to see a doctor about her condition, which I described perhaps wrongly as “comatose”, a nurse asked: “Has nobody spoken to you?” I said they had but I now wanted to speak to a doctor in view of what was obviously a decline in Mother’s condition. It seemed they thought they knew the situation better than me.
From time to time, over the six years in which my parents were hospitalised, I encountered wonderful examples of caring staff. There were nurses who invited me to phone at any hour. There were doctors who took the time to sit down and explain everything and who wanted to gain as much information as possible about Mother and Father so that they could maximise their care.
There were some dreadful examples too, however. One senior nurse persisted in calling my father “the man”. Some nurses and care attendants did not heed the instructions of speech therapists, or my pleadings, to ensure that my mother’s food was pureed.Again this raises questions about coordination and teamwork. How is it that such an important issue as dietary requirements can be overlooked in what purports to be a healthcare facility?
“End-of-life issues” do not suddenly end with physical death. In so many ways, they continue. At one level, the death of parents puts the focus on the next generation and its mortality. How adult children deal with their parents’ deaths will be absorbed by grandchildren. It is also a time when the need for sensitivity around death is heightened.
I found extreme differences in the approaches of different service providers associated with the end of life. The clergy, undertaker and the crematorium personnel were excellent at handling the emotions and issues around death. In stark contrast, there was sometimes a complete absence of sensitivity to my bereavement among some public healthcare and related personnel.
It is encouraging, however, that end-of-life issues and how we deal with dying and death, have been taken on by the Hospice Friendly Hospitals Programme of the Irish Hospice Foundation and that they were reflected during the national consultation of the Forum on End of Life in Ireland.
Jean Tubridy, a TCD graduate, is a research consultant with a PhD in sociology. Her blog is socialbridge.wordpress.com
