Community Attitudes Towards Palliative Care – Summary Report — August 2006

3.2 Information

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3.2.1 Community

Australians generally do not actively seek information about palliative care. However, if Australians wanted to get information to increase their understanding of palliative care, they would most likely ask their doctor, or staff at a hospital. Some Australians (and typically younger Australians) would look on the Internet. However, to access the information required they would search by the name of the disease, and would be unlikely to go directly to a palliative care website.

"If it is not the doctor who initiates the palliative care, where else would you get the information from?"

"I guess you really need brochures at the hospitals"

"I would look on the internet, and just type in the name of the disease"

Figure 3: Palliative care information sources

Q12. If you needed information about palliative care, where would you look for it, or who would you ask?

Base: All respondents (n = 1,201)

Results

GP/Dr 66%
Hospital 27%
Internet 22%

While most Australians are confident that information about palliative care is available for those that need it, others with experience of palliative care reported difficulties in obtaining the information required when it was needed.

"If you had a terminal illness, surely you would be able to get the information you need to steer you on the right path."

"I just stumbled on the information by chance. It would have been better to have been given the specific information when I was ready for it."

Providing brochures at the hospitals and having palliative care web links on other medical (cancers/diseases) websites would help reach out to the community. Top of page

3.2.2 Providers

Providers agree that the community typically turns to doctors and hospitals to get palliative care information. However, providers also indicated that these were not necessarily the best sources of information, suggesting that peak bodies (an under-utilized source of information in the community) are the most reliable source of information.

Figure 4: Differences in information sources

Q12. What would you say is the most reliable source of information about palliative care services? Anywhere else?

Q13. Where do you think people who need palliative care services go to get information about palliative care? Anywhere else?

Base: All respondents (n = 102):
Responses may not sum to 100% due to multiple response
Only major response categories have been included in this figure

Results

Consumers
71% GPs
40% Hospitals
19% Specialists
13% Internet
12% Family/Friends
12% Peek body

Providers
25% GPs
19% Hospitals
3% Specialists
13% Internet
6% Family/Friends
27% Peek body

Providers indicated that many doctors and GPs are under-equipped to provide useful and reliable information about palliative care to the community. Some referring doctors were considered to have insufficient knowledge about palliative care, or to hold misconceptions about palliative care that reduced their efficacy as an information source.

"Some of that comes from not being able to communicate, have great difficulty in communicating, so rather than taking on the hard topics they just keep going on curative care."

"The GP, didn’t know where to go or start getting information."

While the community indicated that they would turn to GPs and hospitals for information, palliative care providers indicated that these were not necessarily the most reliable source. Providers were more likely to state that peak body organisations were reliable sources of information. Top of page

3.2.3 Clients

When clients initially sought services and support, palliative care information was typically obtained from health professionals such as medical professionals at hospitals, GPs, local doctors and specialists.

Almost one in five clients had not looked for palliative care information.

As with the community, palliative care clients typically turn to hospitals and GPs for information about palliative care.

Figure 5: Sources of information

Q3. Where did you look for information when you FIRST started thinking about services and support?

Base: All clients (n = 52)

Results

Hospital 46%
GP/Local doctor 35%
Specialist 25%
Palliative Care Australia 21%
Did not look for any info 17%

Figure 6: Information requirements

Q4. What sort of information did you need at that time?

Base: All clients (n = 52)

Results

General info 81%
Medical services 54%
Where services could be accessed 48%
Physical support 42%
Emotional Support 37%

Clients reported that when they first contacted palliative care services, they needed general information about palliative care such as the types of services and support available (81%). Other information requirements included specific advice about medical services (54%), where services could be accessed and information about physical support.

"It was all new to me, I didn’t know what services they provide, how they could help … the
people at the hostel told me what they could do for me … took me to see the doctor … the
palliative care provider will visit me once a week and organise everything for me."

Information requirements for clients on first contact with palliative care tend to be general, such as the types of services available and how to access services.
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