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Palliative
Care
Palliative Care
is a very difficult subject for most people, especially friends and
family of the terminally ill patient or patient with a life-threatening
illness.
To help the reader
understand the operation of Palliative care and services in Australia,
we've included the following interview from a nurse working in community
care.
If you are a home
carer, you may find the information at www.caring-terminally-ill.com
useful.
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LEAN
ON ME
A story of love, hope and support
Lorraine Kember
has written a book called "Lean on Me" from her experience
of caring for her husband of thirty two years, who, after a two year
illness, passed away from pleural mesothelioma in December 2001.
"During the course of his illness, I kept a personal diary in
which I wrote daily, often in the form of poetry. My diary portrays
the emotional roller coaster I was on living in expectation of his
death and also my growing strength as I came to realise that although
I could not stop him from dying - I could help him to live."
More....
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Interviewer:
Hello. Can you tell me more about what you do in your work in Palliative
care?
Community Nurse:
OK...Well my job is a community palliative care nurse.
I visit my patients in their own homes, that have family and friends around
supporting them,
so they can stay at home.
These people
then have access to a community palliative care service that is usually
provided by a hospice or hospital.
The nurses and doctors work together in visiting the patient provided
care as its need to whatever extent that is needed. It may just start
out as support visits to allow the patient to express thoughts and feelings
on his/her illness and their diagnosis, then this may move to hygiene
care as they loose their ability to shower or bathe unaided, and all the
while the doctor is visiting take care of pain management.
Interviewer:
Thank you. How do people access these services, how much does it cost,
who pays for it, etc.
Community Nurse:
The palliative care service is provided free of charge. Wait on.... The
following information from the Bethlehem Hospice in Melbourne describes
what we do...
Bethlehem Health
Care specialises in the care of people with active progressive disease
which is incurable. The Palliative Care Service provides in-patient assessment,
management, respite services, community based nursing, medical and allied
health services to patients. Bethlehem Health Care offers a continuum
of care with assessment, symptom management, pastoral and spiritual support,
bereavement follow-up across inpatient and community settings. These services
are provided in conjunction with other community agencies and the person’s
own GP.
Through our inpatient
and community services, we aim to provide people with care and support
services that achieve best practice in medical, allied health and nursing
care throughout the duration of their illness.
A not for profit
health care service specializing in the care of people with progressive
neurological disorders and other life threatening illnesses.
Interviewer:
Thank you. Who pays for the service and do the families need more information
than this. For example, on death and dying?
Community Nurse:
They get all that through pastoral and spiritual support, bereavement
services. Its all connected through the hospice.
In the Community:
Community Palliative Care Service
Regional Consultancy Service
Allied Health Services
Bereavement follow-up
Grief-line
Volunteers
In the Hospital
Palliative Care Wards
Pastoral Care
Bereavement follow-up
Allied Health Services
Volunteers
In the Home
Community Palliative Care Service
Allied Health Services
Bereavement follow-up
Pastoral Care
Volunteers
Interviewer:
OK. So the families have to contact the hospice to access the information
and resources?
Community Nurse:
That's right...
If they speak to their doctor about wanting palliative care then all this
information is given to them after the doctor has referred them. A doctor
has to refer the patient to palliative care once it's established that
they have a life threatening / terminal illness
Interviewer:
Is it the same nationally or just in Victoria?
Community Nurse:
Australia wide
Interviewer:
Does the system work well or does it have "kinks" that cause
upset or feelings of being "in a system", rather than feeling
that the patient and family are real people?
Community Nurse:
If that person is actually living in Victoria then moves to another state
after being referred to a palliative care service then that palliative
care service then organises the PCS in the state they are moving to, to
take on that patient. It works very well...
They are not just a number in palliative care. All patients and their
families are taken on by the service. And when the patient dies the family
have the choice to use the bereavement services,
pastoral care services and griefline.
Interviewer:
OK. But all these services are run by people that they don't know personally.
Isn't there a feeling that the family is being invaded by "outsiders"?
Community Nurse:
No. Most people are happy to receive and even know we have services like
this. This allows patients to die in their own homes so they dont have
to be admitted into a hospital setting.
I've never had anyone unhappy to have me in their home... even doing hygiene
visits. I shower bathe, sponge patients. I sponge patients that are unable
to move...the feel of another person makes them feel good, like that they
are cared for.
Community palliative care is by far a fantastic service. They feel closer,
they are happy that they could do that for their relative/friend/partner.
Wouldn't you rather die at home? I would. In my own surroundings, around
my own things, around the people I care about and who care for me to help
me die at home.
As far as I'm concerned its very humane superior nursing. It beats dying
in a hospital.
Interviewer:
I guess it depends on where the best care is available. I have feelings
that a family may interfere if I was dying at home, out of best intentions,
of course. Does that happen at all?
Community Nurse:
I haven't come across it at all
Interviewer:
That's really good to hear. Do any other problems arise due to the family
being around?
Community Nurse:
Only that people sometimes are in grief even before the patient has died,
because they know the loss is coming.
Interviewer:
What advice do you have for the family, to help themselves and the patient?
Community Nurse:
Bereavement services are then recommended or a pastoral care worker.
I have to go now. I hope I've helped?
Interviewer:
Thank you. Yes, you've been most enlightening.
Community Nurse:
It's best to look up hospices on the Web and look at the services and
how its all provided. For Instance http://www.bethlehem.org.au.
That's one of the hospices in Melbourne. There's lots more information
there. I'm just a nurse not a hospital administrator.
Interviewer:
I think that the nurses are at the "coal face", so to speak.
So they understand what REALLY is happening.
Community Nurse:
That's true...but I do know one thing....palliative care is the best service
for people with incurable/ terminal diseases, they look after not just
the patient...not just the family but for the entire as a whole.
Interviewer:
Yes. keep up the good work. I'm sure the families would have great difficulty
doing all this on their own?
Community Nurse:
Oh yes...very very true!!!!!....most of them rely on us to be there. They
need us, want us involved. We have so much feedback that verify what we
do
Interviewer:
How does it affect you emotionally?
Community Nurse:
I'm happy that I can be apart of a team that helps people to stay at home,
so that they can be surrounded by their family friends...whoever.
Community Nurse:
I'm not often saddened by a patients death, but happy for them; that I
helped them in their last months of life, and that i have laughed and
joked and been there when they wanted to talk.
Interviewer:
And then do you feel a sense of "loss" when they are gone?
Community Nurse:
I don't get emotionally close. I feel emotion for them while they are
sick but not "emotionally close". Hard to describe, but patients
die every day. And everyday they're replaced with a new ones, so I help
them. Some patients I see for a few months...others I see just the once
Interviewer:
Many thanks. The "full circle of life", isn't it?
Community Nurse:
Yes.
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