End of Life Nursing

This is a follow up post about an important aspect of life. Death is inevitable – none of us will escape it. How we end our lives is important, not only to us but to our families and that may mean having a palliative care nurse help us on our journey. Palliative Care is not about dying but about living with a serious
illness. Dr Susan Bardy’s books Caring vs Curing and Choosing End of Life Nursing deal with this often buried subject and I have posted her words below.

Dr Susan Bardy, RN (Ret), PhD (UniSA)

My background in palliative care consists of 22 years active clinical
work in the Mary Potter Hospice at Calvary Hospital, North Adelaide.

After a long, nearly fulltime employment as a registered nurse, I
attended university, graduating with two degrees that led to ongoing
postgraduate work.

After retiring in 2006 I concentrated on completing a
PhD in the area of palliative care. I have enjoyed being a full member of
the Palliative Care Council SA for its entire existence, and have followed its
progress during my clinical years.

After graduating with a doctoral degree I offered to be involved with the
workings of the Council in a voluntary role. The result is speaking
engagements representing what is now called Palliative Care South
Australia Inc, which is headed by Tracy Watters as CEO and Dr Mary
Brooksbank as President.

Palliative Care is my passion that did not diminish after leaving clinical
practice. By choice I was a bedside clinician, which I think is easily the
most satisfying role that a nurse can take on. Now meeting people in the
community my main objective in talking about Palliative Care (PC) is to
reassure them that PC is not about dying but about living with a serious
illness.

Many illnesses, such as many cancers, heart disease, multiple sclerosis, motor neuron and Parkinson’s diseases can become chronic.  Palliative care offers a complimentary caring model alongside traditional medical involvement.
Palliative carers concentrate on making possible quality living with an
illness that often takes some time before it becomes life threatening.

Palliative care of the disease is effective by offering comfort measures. These
include emotional support, dietary advice, physical exercise or even
beauty advice for women. And all this while active treatment is still in
progress. The whole family unit feels the benefit by becoming familiar at an
early stage with the philosophy of Palliative care.

Later, when eventual deterioration of the sick person comes to pass, as it
inevitably will, this type of care will be acknowledged as a treatment
component of the actual disease. The extended family then will readily
accept the support of this specialty. Death is inevitable – none of us will
escape it. Ending life with a terminal illness is a slow lonely process.

My research addressed the question of why some nurses chose to work in the
field of palliative care. I am one who willingly stepped into the role of being
with patients at their most vulnerable time – when diagnosed with an illness
that eventually becomes life ending.

My studies reflected on the role of the Palliative Care nurse. My doctoral research question asked how and why my nursing transformation came about. What was it that influenced me to move from a curing model to comfort caring only?

My motherʼs unexpected death with cancer was responsible for showing
the way. She died in the hospice unit of the hospital where I was employed.
Sitting by her side showed me another aspect of nursing that attracted me to
a career change. I transferred to the Hospice after mother died and
remained there for twenty years. Acute care of patients taught me much
about nursing but did not satisfy my wish to give effective personalised
patient care. It seemed that there was never enough time for the often distressed
patient.

Hospice nursing was different. There, arranging a pillow and moistening a dry lip was one of the most significant care issues. Working in the hospice I learnt to
embrace notions of clinical competence, a sense of calling, compassion, empathy, and comfort with death and personal mortality.

In the hospice I experienced the power of interpretation that holistic care
brings into play and is at the heart of the palliative approach. Coming from
acute clinical nursing I stopped and asked myself what was it that I
brought with me to the care of dying people. The research had a number of
the answers, and in the meaning making process I was joined by a
group of palliative care nurses. They helped me to explore the coming to,
and being effective in, a care model that does not have an expected
positive outcome.

Findings of my study presented attributes that best describe palliative
care nursesʼ qualities, and that are essential building blocks of nursing
patients with time-limiting illnesses. These qualities are in part innate and
personal but a number of the following attributes are acquired by experience
at the bedside of sick patients. I find them valid and a true picture of my
and colleagues experiences:
1. Comfort with death and dying
2. Comfort with personal mortality
3. Intensive caring
4. Companionship with suffering
5. Emotional strength
6. Non-judgmental understanding

In essence, the principle dynamics affecting nurses to take on palliative
care is that often they are not comfortable with the disregard some
general nursing practitioners for the holistic care of patients with life-limiting
illnesses. This was demonstrated by interview results where a number
nurses spoke of the way they felt extremely comfortable in hospice units
where there was time for whole person care of their patients.

What now?

After my many years of practice across the nursing profession, my
wish now is to be in the community. I wish to share my knowledge and
practical experience by comfortably speaking of palliative care as a branch
of health care that is there to give a helping hand to people with serious
health problems.

I am grateful to Palliative Care South Australia Inc. who gave me the
opportunity to join in being a frontline promoter of an important health caring
model.

The next World Hospice and Palliative Care Day is on October 8th 2016

Caring vs Curing

An email arrived from Susan Bardy, a fellow PhD friend from Adelaide. It bought back so many memories of an unexpected friendship and an exciting conference in Illinois USA.

Susan Bardy is a palliative nurse devoted to the care of people who are nearing the end of life’s journey. Her thesis, Caring vs Curing is being published by The Australian Theological Forum and is available at a reduced price via the order form below. Knowing Susan it will be an empathetic, thoughtful and excellent book, not only interesting to read but one you will want to keep in a prominent place on your bookshelf .

ORDER FORM
Caring vs Curing
ISBN 9781925309300
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􀂉􀀃I would like to order _____ copies (PRE ORDER PRICE AUS $20
until 30 May)
(+AUS $6 Postage and Handling)
TOTAL AMOUNT: _______________
PAYMENT
􀂉􀀃I enclose a cheque/money order made out to ATF Ltd
Or Charge my 􀂉􀀃Master Card 􀂉􀀃Visa
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Return form by fax or post:
ATF Ltd
PO BOX 504, Hindmarsh SA 5007
Ph: +61 08 8232 2093
Fax: +61 08 8223 5643
Email: hdregan@atf.org.au

When I was studying for my PhD in epistolary fiction at Swinburne University  in Melbourne we were expected to attend and present a paper at two overseas and two national conferences. When I heard of an amazing conference to be held in Illinois USA, I knew I had to attend. However, no one else was going and I ‘d never been overseas on my own before.  My mind raced through all the ‘what ifs’ until a friend gave me Susan Bardy’s email address saying, ‘She is a wonderful woman, a marathon runner, who is a nurse and is also studying autoethnography’. I contacted her and we hit it off immediately. We agreed to meet for the first time at the conference at the University of Illinois in Urbana/Champaign.

   

As per usual I was trying to travel on a shoe string. The fares alone to the USA cost a fortune but because all the USA university students had gone home for the summer break , for a pittance I could stay at the university student village.

The trip to the conference meant I had to travel with only carry on luggage from Melbourne to Los Angeles, catch a domestic flight to Chicago and straight onto a flight to the twin towns of Urbana-Champaign in Illinois. After travelling nonstop for 35 hrs I arrived about 6 pm only to find myself at a tiny airport with no way of getting to my accommodation. The only taxi was quickly grabbed by weary travelers and I was saved by a friendly couple who gave me a lift to the student digs. They even let me use their mobile phone to ring security to come and unlock the front door and let me in.

To say that my room with shared bathroom was sparse was an understatement. There was nothing in the room apart from a bed and mattress. No jug or even a blanket. Later, I managed to borrow a blanket from the security guard. However, I did have the bathroom to myself because the room next door was empty. The view from the window was lovely but I would have killed for a jug to make a cup of coffee, or to pour hot water over two minute noodles.

The next day was free for me and a treasured writing friend and her husband took me out for the day to lunch in a house in an Amish Community.

I knew Susan was arriving later that evening but we hadn’t worked out where or how to catch up with each other. When my friend took me back to where I was staying in Hendrick House we pulled up behind a taxi. I just knew it was Susan as soon as I heard her deep Australian voice.  We were inseparable from then on.

The email that arrived said, ‘I must come over to see you sometime in the year. I Imagine we will talk until the cows come home’

Professor Ian Maddocks my palliative care examiner noted that my writing should be widely read as it’s value is in bringing ‘new notice’ to my message that would bring added knowledge for all health professionals and carers. In fact by giving talks to community groups I found that the community at large benefits from knowing what to expect.I stress how quality of life can be enhanced with care that is holistic no matter how close any one is to end of life. My idea in doing the PhD was to share what I learned over 20 years in caring for people with life threatening illnesses. The books are going achieve that I think.

The books are in final print at present and the order forms are the way to get them now. After publication it will be online. I will keep in contact with you and let you know developments.

It has been a long time between drinks. I wonder how you are and what
you are up to these days? I am now a member of Rotary International through my local club and I speak with local clubs about palliative care.

My book is being launched in Adelaide on May 22nd 2016

Congratulations Susan.