The Turtle House

These are the days of the endless summer
These are the days, the time is now
There is no past, there's only future
There's only here, there's only now

Oh your smiling face, your gracious presence
The fires of spring are kindling bright
Oh the radiant heart and the song of glory
Crying freedom in the night

These are the days by the sparkling river
His timely grace and our treasured find
This is the love of the one magician
Turned the water into wine

These are the days of the endless dancing and the
Long walks on the summer night
These are the days of the true romancing
When I'm holding you oh, so tight

These are the days by the sparkling river
His timely grace and our treasured find
This is the love of the one great magician
Turned the water into wine

These are the days now that we must savor
And we must enjoy as we can
These are the days that will last forever
You've got to hold them in your heart.

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

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

johnfitzpatrick999@gmail.com

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, and published it in late 2000 under the pseudonym of David Rush. Part One of ‘Hospice Bridge’ contains these simple stories.

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 because one of the small District Hospitals there was kind enough to accept my application.

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. Nursing was quite a different career course to take. It meant moving from an area where I felt I knew what I was doing, and going into one in which I felt completely incompetent... and for good reason.

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 vineyards were beautiful.

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 was only really due to the fact that he was likely to fall over quite often and his wife Jessie was unable to pick him up. Eventually there would come some assessment to look at the need for a better living arrangement… or what we called ‘placement’.

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.

They were very nice people and Mrs Henry was very thoughtful to have taken the time to write to me on behalf of her Mr Henry. This simple experience gave me my first insight into what a Hospice could do, even an old fashioned one. I liked it. I’ve liked Hospices ever since. It was one thing that did indeed inspire me in the cold Australian Hunter Valley winter of 1983, as much as the young women in their warm fleece coats, and it still does.