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
