Dec 23 2007
An excerpt on Palliative Care & Community Attitudes
8. Expert Interview Summary
Interviewee: Professor and Director of a palliative care unit
Key issues:
• Clinicians do not really understand community, and have no real commitment to community.Bureaucrats have a better
understanding of community than the clinicians, but they are constrained by the federal versus state split between funding
and provision.Federal Government doesn’t supply provisional health services, so all they can do is provide guidelines and
hope to be able to influence policy using inter-departmental relations.
• Clinicians and bureaucrats think they have common understanding that palliative care is the clinical, professional provision
of care, and they feel that the community exists to do two things.The first of these is to locate clinical services among
them (community based palliative care) and secondly to have a “paternal, patronising attitude to educate the community”
about the services that are there.
• There are many people who believe palliative care is only terminal care, specifically the last few weeks of life.In the
palliative care community itself, there are a lot of people that resist this image of palliative care.They see palliative care as
care of people who live with a life limiting illness, for which there is no cure.This means palliative care can be care of
people some years before they die.However, the Federal Government doesn’t want to hear that.
• There is significant variation in referral patterns, essentially because of a type of inter-occupational territory dispute or more
simply put, a “culture clash”.
• Oncologists think the palliative care people are coming in too early.Furthermore, oncologists think the palliative care
people are the “death people”, so they don’t want to give them up to palliative care, because they think it’s sending the
wrong message to the patient, that they’re giving up hope on them.
• The palliative care people think oncologists are letting their patients go too late, and believe that the Oncologists tend
to be in death denial.
• Another key issue is how palliative care defines itself, and the fact that there isn’t even agreement within the palliative
care area.
• Inequality of service provision.
• Currently palliative care is fine if you know a good doctor and a good palliative care service.For those who live in the outer
suburbs or regional areas there’s not much (good) palliative care, so it’s more elitist.Community can be active, and this is
necessary.The history of Public Health in the last thirty years has shown that people are interested in their own health,
and given half a chance they would be interested in their own death and loss as well.
Priorities for improvement in palliative care:
• The development of a public health approach to palliative care should be funded immediately.There should be priority funding
given to community development, policy development, social research, and death education.And this should occur, not only in
patient populations, but should be part of the in-service training, and curriculum design in medicine, nursing, social work,
pastoral care.
• Palliative care needs to understand the community, which can only be achieved through a public health approach.
palliative care needs to stop patronising the community, and will then go a long way to developing a good, strong system
that supports death, dying and loss.
Community Attitudes to Palliative Care p 41
p 42
• Barriers need to be broken down.The first barrier is between the bereavement care sector and the palliative care sector.
They’re often not connected.It needs to be seamless around the issues of death, dying and loss.
• Break down bereavement care.People who do counselling and group work and such would have nothing to do with
palliative care.Get them to work with palliative care, and vice versa.Secondly, break down the barriers of public health
practitioners and palliative care.This country has a Public Health Association and Health Promotion Association in every
State.palliative care has no relationship with them, so without the partnership between Public Health and palliative care,
forward advances cannot be made.
• It requires commitment, and getting the Federal Government (through it’s bureaucrats) to understand how important it
is to have this dimension of palliative care.All the other major health fields have this – maternal health has health
promotion and public health, cancer has Slip, Slop, Slap, a dimension of cancer care.
Key things that affect community’s awareness of palliative care?
• The reticence of the key media outlets to carry stories regularly about palliative care is a real problem.The respondent did an
interview for Channel 9 but they didn’t run it because they found it too sad.There was also an interview for Channel 10, which
was aired.However in order to get Channel 10 to show it, a lot of effort and talking was required.The TV Channels are scared
of showing anything that’s not really entertaining, because entertaining is what they do.
What does the community know about palliative care, do you think?
• The community does not know very much.People that do know think it’s about care of older people, sometimes people with
cancer.And some know that it’s the care of people at the end of life.Often people think of Hospices, but they won’t necessarily
think of community based palliative care services.Most people who actually know about palliative care have a very simple,
skeletal understanding.There are a few people who are informed because they’ve had a member of the family or a friend
who has received palliative care.
What do you think the community needs to know?
• The community needs to know that palliative care is care of people who have a life threatening illness for which there is no
cure, and that it can provide whole person care – social care, psychological care and spiritual care.People who receive palliative
care may not die for a long time, and the main aim is to improve or maintain quality of life of people with serious illness.By
serious illness, it may be cancer, or it may be motor neuron disease, or even heart disease.
• But it is not medical care at the end of life, nor is it institutional care, nor just doctors and nurses.It is social work and pastoral
care and community workers.People like that are important members of the team, or a palliative approach to care.
• After the person has died, palliative care can supply care to friends and family as they experience the loss, and you find that’s
important.
• It’s not necessary to know about all the different techniques that can be used to help them with their pain or their breathing.
It is important to know that there are specialists in the area to rely on.
National Palliative Care Week
• There were only fifteen people at the launch of National Palliative Care Week, and not one of them was a journalist.Simply
unbelievable.So there are some serious institutional barriers to get over.It is not just palliative care not marketing itself.
Community Attitudes to Palliative Care
• It is really important to note that clinicians and bureaucrats can’t and shouldn’t market a national programme themselves.
palliative care people are palliative care people, not people who hustle the media.It needs community development people
who are trained and experienced at liaison and lobbying journalists.Palliative care should pay for some of this expertise in
order to get in front of the TV and the microphone.
• Palliative care also needs to be smarter with the money they do have.Give Palliative Care Australia public relations personnel.
Give the key bodies’public relations people and the Minister will roll up with a crowd of journalists next time.Staff are too busy
with their day-to-day business to try and organise that sort of event.
Case Study:
• “I don’t expect that, for some people palliative care will make the difference.Because the euthanasia debate is not about
symptom control.It’s about quality of life.And the people who run around and equate the two are the ones who put
euthanasia and palliative care end to end.We can do symptom control, but make no mistake, I would say over 90% of your
troubles we can deal with.But whether or not you want them dealt with and still feel you want to live, a totally separate issue.
I was speaking to a woman the other day who is 86 and she wants to die.She has lost her home, lost her cat, and her friends
can’t visit her because she’s in a nursing home.She’s grown fat because she’s a vegetarian, and they don’t have a service chef in
the nursing home.She’s had two hip replacements, but her hips have collapsed under the weight of the new prosthesis, and it
cannot be replaced so she gets around in a wheelchair.She can only do one thing, she can wipe her own bum, and she’s not
sure how long she can do that for.”
“She wants to die.What can we do for her in palliative care? The answer is, nothing.But even if we could, she would still want
to die.You see, it isn’t about making her physically healthy.It’s about whether or not she thinks she’s the person she was, and
whether she wants to live whilst being that person.‘Oh you should stay alive, chin up’, I’m sure that’s a really good answer, but
it’s not the one she wants to hear.A lot of the issues around euthanasia don’t come back to palliative care.That’s the point.If
you walk into a voluntary euthanasia society, the average age is probably seventy.Those people don’t care about, they’re not
fundamentally concerned about whether or not they’re going to get dying, they’re concerned about whether they’re going to
lose their dignity, their homes, people they love, whether or not they feel life is worth living under those conditions, but that
is too big for us.This is about how we should live and how we should die.We are only a bloody health service.”
Community