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.
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