Community Attitudes Towards Palliative Care – Summary Report — August 2006

3.3 Understanding palliative care

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3.3.1 Community

Overall, Australians demonstrated a general understanding of palliative care. The most commonly mentioned definition of palliative care was care for the terminally ill. Australians demonstrated a lesser understanding of specific types of care such as providing comfort for the dying and pain control.

Relatively few Australians spontaneously reported care for people beyond the terminally ill stage such as support for family and friends. Further, few related palliative care with non-medical type services such as support with housework, bathing and meals.

Figure 7: Description of palliative care

Q6: Could you please describe for me what you think palliative care is?

Base: Aware of palliative care (n = 1,032)

Results

Care for terminally ill 61%
Comfort 18%
Pain control 15%
Care for elderly 14%
Cannot care for self 9%
In-home care 9%

There was a marked difference in understanding by age, with older Australians demonstrating a far higher level of knowledge than younger Australians.

From older Australian’s perspective:

"I think our knowledge for our age group would be greater than my son’s knowledge"

"By nature, we generally find out or get a deeper understanding when it affects us personally"

From younger Australian’s perspective:

“"f you were a young businessman, you would not expect to know about palliative care"

"It’s not a word that springs to mind, it’s not a simple word."

Understanding was also higher among high income earners compared with low income earners; and tertiary educated Australians compared with non-tertiary educated Australians. The community understands palliative care at a very general level: providing comfort and care for the terminally ill. Top of page

3.3.2 Providers

From palliative care providers’ point of view, the community defines palliative care in very general terms, such as ‘care for the terminally ill’ and ‘pain relief. However, in defining palliative care, providers themselves tended to focus less on this general description, and more on specific elements of palliative care such as emotional support and symptom relief.

Figure 8: Differences in perception of palliative care aims

Q8 What do you think is the main aim of palliative care? Anything else?

Q9. What do you think the community perceives to be the main aim of palliative care? Anything else?

Results

Community

Care for terminally ill 45%
Pain control 15%
Emotional support 9%
Symtom relief 9%

Providers

Care for terminally ill 22%
Pain control 7%
Emotional support 24%
Symtom relief 20%

Compared with the community’s understanding, providers were more likely to describe specific aspects of palliative care such as emotional support and symptom relief. Top of page

3.3.3 Palliative care aims, location and services

3.3.3.1.Community

Australians demonstrated some understanding of the aims of palliative care its locations and services.

Aims: Commonly perceived aims included the provision of comfort and pain relief for the terminally ill to improve quality of life. There was also some understanding of support for the family.

"To make them (terminally ill) comfortable"

"Its emotional support, in the end the medical just goes along with it, all they’re doing is administering morphine"

Locations: Palliative care was primarily seen as a ‘bridge’ that operated between the hospital and the home. Allowing patients to stay at home for as long as possible (and die at home if possible) was seen of vital importance.

"Like an extension of the hospital, once people come out of hospital like home care"

"The important thing is, if they want to die at home or not. If at home, the support should be there if they want to do that."

Services: Australians were less aware of specific services available under palliative care. Commonly reported services included nursing visits in the home, counselling, and pain relief. There was some recognition of the co-ordinating role played by palliative care in the provision of the range of services required by the terminally ill, their families and carers.

“"here needs to be more services that go between the hospital and the home, more in home care."

"Intensive care facilities, either attached to hospitals, or like old aged care homes."

"I think there are probably lots of little services around that do bits and pieces for people"

Figure 9: Aims

Base: All respondents (n = 1,201)

Results

Comfort 52%
Pain relief 23%
QoL 20%
Family support 19%
Dignity 17%

Figure 10: Locations

Base: All respondents (n = 1,201)

Results

Hospital 50%
Home 49%
Hospice 31%
Nursing home 27%

Figure 11: Services

Base: All respondents (n = 1,201)

Results

Nursing visits 28%
Counselling 17%
Pain relief 14%
In home 12%
Complementary medicine 10%

The community demonstrated a moderate level of knowledge of the aims and location of palliative care. Knowledge of the specific types of services available was lower.Top of Page

3.3.3.2. Providers

From the palliative care providers’ point of view, the community has a very low understanding of specific aspects of palliative care.

Seven in ten providers reported a fair or poor level of community knowledge of the aims of palliative care, where palliative care services are delivered, the types of professionals that work in palliative care. Eight in ten described the community’s understanding of how to access palliative care, the cost of palliative care, and the types of services provided by palliative care to be fair or poor.

These perceptions of the community’s understanding are incongruent with self-reported knowledge from the community itself. It would appear that the community has a better understanding of palliative care than is perceived by providers.

"The public really needs to be educated."

Figure 12: Providers’ perceptions of community understanding of palliative care

Q16. Thinking now about the community as a whole, would you say that people’s understanding of the following items is excellent, very good, good, fair, or poor?

Base: All respondents (n = 102)
Bars indicated the sum of ‘excellent’ and ‘fair’ responses

Results

Cost 81%
Access 80%
Services 79%
Delivered 74%
Professionals 71%
Aims 70%

Providers perceive that the community has a very low understanding of palliative care, a perception that perhaps underestimates the actual awareness and understanding in the community.

Providers suggested a number of strategies to address this perceived lack of knowledge, suggesting that traditional forms of information dissemination may not be effective given the community’s reluctance to discuss terminal illness and dying.

"For people who are not affected, they don’t really pay attention to palliative care communication."

Suggestions included

• A health promotion approach.

"The HIV people did it, being integrated into soap operas like ‘Neighbours’ so people come to understand it. Get palliative care into popular shows and raise community awareness. People who are experts in health promotions can come up with ideas like this."

• Better education of referring practitioners.

"Palliative care practices should be communicated to the doctors and nurses, they are the ones refer patients to the right type of services and treatments."
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