Hospice Bridge
Personal Reflections of Hospice and Palliative Care
1983-2013
John Fitzpatrick
John Fitzpatrick
Born Sydney Australia 1953
St Joseph’s Primary School, Narrabeen
Christian Brothers College Manly NSW
Editor, Saturday Centre Publishers Neutral Bay 1970-1980
Hunter Valley/Newcastle Region, Registered Nurse, NSW 1983- 1986
Aged Care & Palliative Care Certificate 1987
Director of Nursing NSW 1988
Palliative Care Certificate 1990
Clinical Nurse, Palliative Care Consultancy, Cairns
Clinical Nurse Consultant, Palliative Care, Cairns, and the eleven Health Districts of the Northern Zone
Project Manager Education, A Division of General Practice
Staff Grief Counsellor, Cairns Base Hospital
Project Writer Palliative Care Strategic Plans 2000-2003 for the Eleven Health Districts of Northern Queensland
Project Writer: Northern Streams: Towards Best Practice in Palliative Care
A Hospice Bridge © 2009, 2010, 2011, 2012, 2013 John Fitzpatrick
Non Fiction: Medical Nursing: Hospice and Palliative Care
Author of:
The Water Planet (Saturday Centre Publishers, Neutral Bay, 1983)
The Song of the Casskins (Scholastic Australia, Publishers, Lindfield, 2002)
Part One of Hospice Bridge was self-published in a much shorter form as The Wake in December 2000 under the pseudonym of David Rush and has been often published in various exemplar forms in Palliative Care Journals in Australia and Canada
ISBN: 0-646-41698-7
Front cover Photo: 1957, Narrabeen, Sydney
Back Cover Photo: 2009, Chinatown, Krung Thep Mahanakhon
John Fitzpatrick
MASA
Dedication:
Pro Re Nata
For the Thing Born
.
“There is no mystery at all
In terms of pain control
In palliative care.
It’s quite easy and can be done within 48 hours in 99% of cases without any doubt at all.
.
The only mystery is that good nurses and doctors
Continue to actually prefer people to suffer to suit their own limitations
of experience and exposure and credentials.”
John Fitzpatrick
With thanks to my teacher
Wang Wan Yi
Hospice and Palliative Care
From Wikipedia:
Hospice is a type of care and a philosophy of care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century.
Palliative Care: “A comprehensive, specialized care provided by an interdisciplinary team to patients and families living with a life-threatening or severe advanced illness expected to progress toward dying and where care is particularly focused on alleviating suffering and promoting quality of life.”
Dept of Health, State of Missouri , USA
The World Health Organization (WHO) defines palliative care as "the active total care of patients whose disease is not responsive to curative treatment."
Author Note:
“Palliative Care is the specialised and professional care of people who are
approaching death. This care has many facets, the physical, the emotional, the spiritual, the psychological, the social, the political, the bureaucratic, and the mystical; and then there’s the milieu of bereavement as well. In Hospice Bridge a lot of the emphasis relates to pain control in the physical domain and to real success and real failure there. It’s certainly not just about cancer. It’s about any progressive illness that takes life away and doesn’t give it back. This is not a clinical text, but rather a series of personal reflections of care.” John Fitzpatrick
A functional definition of the Doctrine of Double-Effect is given within the text.
Hospice Bridge is in three parts
Part One
The Wake
Personal Reflections of Hospice and Palliative Care
Part Two
The Bridge
Notes on Clinical Palliative Care and Clinical Euthanasia;
Belief Systems and Funding Deals;
And three brief, difficult stories.
Part Three
The View
Ad Finitum- A Brief End Note
For Palliative Care Nurses
Part One: The Wake
Introduction
I wrote the first small fifty-six page edition of The Wake in Cairns , Australia
They span in-patient Hospice and Palliative Care Nursing work in a few Australian States, in large teaching hospitals, specialist units, Hospices, general hospitals and quite remote communities.
I’ve sought to keep the text in an easy and informal relaxed style, much like a story telling between friends. The names and locations are all ‘random constructions’ and I’ve altered all identifying aspects to ensure people’s privacy. I have made some additions to provide some finer detailing of situations and events.
I considered having even more stories and considered making the stories longer and more elaborate as I feel there is ample room for this to happen. There are certainly enough stories for many books.
At the same time I think that these experiences shared with terminally ill people, and their families, are succinctly long enough, and numerous enough; and they have their own rhyme, reason and validity as is.
Part One of this book of recollections and reflections contains some things that happened in Hospice and Palliative Care. I haven’t tried to embellish the experiences with awe nor with any great warmth, nor any notion of judgment regarding finality, morality, karma or other such things. These brief stories are true-to-life. The situations and any insights occurred much in the order they are presented here, taking into account the function of memory.
Memory does not function so much to recall events with any diamond clarity but rather to note a journey and to acknowledge some rites of passage encountered along the way. I believe that memory only really exists to help us survive. I’m sure someone very important has already said that. We can have ‘different memories’ of the very same thing; and that’s natural enough, and often relates to the time and the distance from the event; and also from what everyone needs from that event.
In this Part One: The Wake there’s no desire and no attempt to seek to examine the meaning of life and death. That interesting quest remains with those who have an inclination and a capacity to do so. I expect that any great truth that emerges, should it ever, will be somewhat long-winded.
Part Two: The Bridge contains a few starkly ‘complex experiences’ in Palliative Care that occurred along the time-track. Also in Part Two, the relative merits of Clinical Palliative Care and Clinical Euthanasia are outlined. I have noticed that, over the years, funding for Palliative Care has been boosted whenever the notion of Euthanasia is raised. I believe Palliative Care is a worthy science as it is and not one that should be supported simply through a manufactured social fear of ‘something else’. Both entities need to be understood for what they each separately offer.
I provide some notions of my own regarding the influences of a variety of belief systems that from time to time interfaced with clinical care, and I also provide the underlying humanist theme for my time in clinical work.
Part Three: Ad Finitum is a very brief end note, for Palliative Care Nurses, and there is also one poem.
This is not a formal text book about Palliative Care; nor is it one that arises through judicious polling of Palliative Care associations. It is, rather, a very personal text about how working in Hospice and Palliative Care has made me think and feel from time to time as a person, and as a Student Nurse, a Registered Nurse, as a Director of Nursing, a Clinical Nurse and Clinical Nurse Consultant in Palliative Care; and as a Strategic Plan writer for Palliative Care over the years.
Many of the brief scenarios could be useful in encouraging conversation about otherwise difficult topics and experiences, and may even be useful from time to time in grief-work and in formal and informal debriefing programs.
On Health Care budgets: If Health Care was a family, well; it would be a dysfunctional one. At the same time the family analogy is useful. In the family are various siblings…acute care, maternity, intensive care, paediatrics, cardiac care, aged care, oncology, mental health care etc and, at the end there, the youngest child to be formally recognised… Palliative Care.
Now, for those of us who have had the experience of being the youngest child, well, we all know what happens. By the time you get to the refrigerator, the older, bigger, tougher kids (such as oncology) have eaten pretty well everything, whether they were hungry or not, whether they actually needed to or not, whether it actually does anyone any good or not. You tend to end up with an enormous hunger, an almost empty milk bottle and a piece of shriveled carrot. You also end up carrying the burden of family responsibility: if you drink the last of the milk, then wash out the bottle.
As time goes by, by being the youngest child, by being both lean and hungry, Palliative Care will get to the fridge a little faster every year, and, interestingly enough, exactly because of that youth and hunger, there is the real certainty that Palliative Care will be around a good deal longer than the rest of the rapidly ageing and somewhat corpulent siblings in the great scheme of things anyway. Have a little faith in mortality. Mortality is their Rubicon, the river they cannot cross… with all their best work…not ours. Hospice and Palliative Care is a bridge.
Having completed The Wake section in 2000 it was curious to find that in 2012 I had something more to say, but not a lot more. All in all, Hospice Bridge remains a slim, young book; yet one that took decades to actually come together, as if I had forever.
I hope you enjoy these brief reflections and find some meanings, some useful humour, some warnings, and even some different memories in them.
Chapter One
Nursing the Hunter 1983
I chose to do nursing studies in the Hunter Valley in New South Wales, Australia, because of its vineyards and its proximity to the surfing beaches of Newcastle.
I also chose the Hunter Valley
In 1983 I was in one of the last groups of students to go through the Hospital/College based system of education rather than through Universities. This was fortunate for me simply because, as a mature-age student of around thirty years of age, it was the only way it could have ever happened. I also had quite a deep and sometimes overwhelming desire to be paid. The desire remains with me today.
It was a small hospital smelling of bleach and it was stuck on a hill on the edge of town, in sight of the meatworks and cemeteries and out of site of the town itself.
Before 1983 I had been an editor for a small multi-cultural, multi-lingual and very left-wing literary publishing house in Neutral Bay in Sydney , Australia
At the same time, as my ‘indenture’ into the nursing profession continued through Mental Health secondments, I did notice that my experience from publishing days, of dealing with poets and writers in general, was not dissimilar to working in a Mental Health Admissions Unit. In fact, I met some well-known contributing poets there. Some are still there, and I expect their work remains very good; perhaps the best.
Why Nursing? I doubt it was a totally sound decision. It was based on the notion of trying to do some good in the world and at the same time get paid. A few of my dear friends in the publishing realm had died of cancer and I guess I missed them and I did feel as though I could and should make some contribution to society, in general, over time… and get paid.
I put my decision down to the abiding power of emotion over reason when it comes to the notion of human meaning… and the Hunter Valley
I rented an old farmhouse on a mountain top. There were cold winters, gnarled vines and green undulating landscapes. There were winter fires in the hearth of the old mountain house lost in high cloud. Sometimes birdsongs would come through the clouds at the door and wander right into the hallway, like damp musical quixotic guests.
There were blossoming plum and cherry trees on the tops of green ridges. There was unbelievably good raw Verdelho wine and wooden barrels of crisp Chablis… and the Shiraz had all the best elements of histamine tannin in it to give you the headache you deserved; and there were beautiful young women who had warm smiles and who wore fleece jackets and who smelled of wood smoke.
Chapter Two
Mr John Henry
Mr John Henry was a skinny man of around ninety years of age when I met him. He and his wife Jessie had lived around the Hunter Valley Coalfields all their long and skinny lives.
He had a terminal illness. His admission to the small District Hospital
He was very drowsy most of the time but was also very sensitive to sound, having lived in a very nice and quiet home for sixty years. The continual noise and round- the-clock machinations of the ward were making him quite confused. He was not a confused man at home. His wife would get a taxi to visit each day and she would stay for as long as she could before journeying home in early darkness. His disorientation was pretty obvious. His one link with the real world, that kind reality, was when his wife was visiting.
Her main concern was getting him home so she could be with him all the time, as she had always done. No one else knew him; and she knew him well enough to know that he would not be confused at home. She understood that she couldn’t manage him at home as he was. She knew his condition was deteriorating but she did not want to spend the remaining time in his life coming and going to and from the noisy hospital, especially with him confused after she had gone home, when each night came.
I had a talk with Mr and Mrs Henry and the Charge Sister, as they were then called, and then we talked with a Social Worker and within a short period of time Mr Henry was transferred to a Hospice unit in the same town.
As a Student Nurse, I’d never seen a Hospice unit so I went along and had a look around. It was a quiet and unhurried place, and, in retrospect, a bit like that older and more traditional notion of a Hospice… not a rapid pain-control centre with a very short length of stay and a high turn-over. It was that ancient notion of a wayside place, somewhere to stop for awhile on one’s journey.
It was slower. It was a quiet and thoughtful place. I don’t think it ever had had a Mission Statement or a Corporate or Strategic Plan. What it ‘was’ could be best described as ‘simply a pretty good place to end up if you had to end up anywhere away from home… if you had or didn’t have a home to start with.’
Mrs Henry was picked up from their home by the facility’s small bus and thus brought to the Hospice. She stayed and had meals with Mr Henry and stayed overnight whenever she wished. If she needed to be home, usually to work on the vegetable patch in her garden, she’d catch that little bus home and the driver would wait until she had opened up the house and checked it for prowlers etc. She would stand on the small porch and wave to the driver and only then he would continue his journey. It was all quite simple.
I received a letter from Mrs Henry a few weeks later on saying all was going well enough. Her husband whom she always called ‘Mr Henry’ was quite ill by then, near death, but she was with him when she wanted to be, and he was not confused; it was a quiet place; and she was always welcomed there. So, she thanked me on Mr Henry’s behalf.
I was taken by how much could be done by doing, in fact, so little. It was just a matter of finding the right place, and of course, having a right place to find, and nearby. I remain proud of my simple concern. It led to a simple action that did some good. I never saw either Mr or Mrs Henry again and I can’t recall actually replying to her brief note. I carried that small note with me for about twenty years. I’m not sure where it is now. It could be upstairs in a box. I don’t know.
That’s the thing about the nature of real treasure on Earth, and what defines it as treasure. Even when you eventually lose it, you still have had the honour of it.
Chapter Three
Jacinta Arrack
Finishing my ‘Basic Nursing Studies’ in 1986 (a few months after my colleagues due to the fact that I had a habit of wandering off into the mountains rather than always turning up for a shift that started before ‘freezing-seven’ in the morning), I undertook a course in ‘Post-Basic’ studies in Aged Care and Palliative Care at that local Hospice/Home.
Now, as to my studies in ‘Post Basic’ Palliative Care at the local Hospice/Home…Many people died at that local Hospice/Home, as you would expect. One person, in particular, did not. One proud and matronly figure, Mrs Jacinta Arrack, had been given a prognosis of three months. She was a smart, deliberative and purposeful woman. She was about sixty years old.
She ‘put her accounts in order’. She was organised. She handed over her house and another rambling property to her son.
She said all of her heartfelt goodbyes. She asked for no one to visit her as she did not want to be seen by people that she loved as she deteriorated over the prescribed time, give or take. Fine. Done.
The beloved son went overseas and married the most beautiful woman I have ever seen, from Iran
It was as if that is why gold was created in the first place. At last, here on earth, real gold had some real meaning, to highlight the beauty of human skin. The same went for the bothersome sounds of the clunking diamonds. A kind of ethereal music… like spectral shimmering, wind-chimes.
Why bother to grow a giant forest if not to compress it for countless hundreds of thousands of years into carbon, and then to add heat and pressure and time to turn it all into diamonds?
Why do that if it was not to somehow add even more beauty to this young woman’s constant emanation in the world? Why bother do all that if it was not for this one?
It did us all good to see this magnificent extravagance of young human reality somehow conjugated into one being who stood five foot ten inches tall, in full black-silk adornment, and with high golden heels. It always will do us good to see this. Beauty is awesome.
Sorry, I digressed from Palliative Care and death for a moment…
It’s just something I’ve noticed. That sometimes there are some people who are so dynamically and dazzlingly beautiful, whether of body or mind or spirit, that you can’t actually see them. You can’t actually see them clearly at all, but it’s very hard to look away.
Your eyes are drawn into a milieu of fascination and the beauty is so transcendent, so transforming, that by seeing this being, you are changed, in yourself, without any clarity or understanding coming with it at all. Blink. My goodness, it’s so easy to digress from Palliative Care for a moment.
Anyway, meanwhile, back in the Hospice, after six months… three decent months after she was supposed to be very dead, Mrs Jacinta Arrack, well, she was looking very well indeed. If this was deterioration, based on legitimate cancer process and trajectory, then I wish it for us all. Mrs Arrack was aglow with life.
As it happened, her diagnosis was an error of medical judgment. Reviews were flawed. Tests were mislaid. Misinterpreted. Someone else’s files. Oops. It happens more often than it should, just like everything else. It was a human error. It must happen. It’s human. You can and can’t depend on it.
Meanwhile, her grand home and remnant bucolic pastoral properties had been sold off by her son and he invested all of that into having the continuity of human beauty and meaning with him, loving him, every day. He was deeply in love with his wife, and she with him.
The somewhat bedazzled son came to visit his mother upon hearing the good news of her new extended-term on Earth. She had to leave the Hospice. She had to go home. For the first time in her strong life, she had no home. He, her best beloved, had sold it. He skulked around her Hospice room like a wide-eyed scared miniature fox terrier with an anxiety disorder.
As for Mrs Jacinta Arrack, well, she, who up to that time thought she was nigh upon approaching full heaven, when faced with the life-changing decisions of her goodly son, well, she gave him full hell. She also had quite a few unpleasant words for the man’s bejewelled Iranian wife.
This is one of the problems with wishing for an instant cure for everyone. You’d end up with quite a few folk wandering the streets with nowhere to live; really annoyed at their children. Some would even have vague plans of attacking the good people of Iran
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