Professional patient advocacy services – does Australia need them?

A new service providing professional advocacy services for health care consumers has attracted a lot of interest from the health sector and the media – along with some criticism. Today Croakey talked to Claire Crocker, founder of Patient Advocate, about her motivation for establishing this service and how she responds to criticism from the AMA…..

“I set up Patient Advocate after my own experience with a relative who was receiving care in hospital.  I’m an articulate and educated person but I found it difficult to assist my family member because I didn’t know how the system worked. Things came to a head when there was an irreversible health decision being made by the doctors and it was really like the patient was a passenger in the decision making process. I felt that my relative’s interests were not being looked after but I didn’t know how to obtain a second opinion or where to go to get additional advice. Something clicked then and I realised that there was a need for a professional patient advocacy service.

“I looked around at the patients in hospital who had no-one visiting them and were very vulnerable and thought ‘this is not right’. There is often no-one looking out for their interests and ensuring that they receive the best care, on their own terms.  This can result in them receiving less than optimum care.  It’s no-one’s intention that this occurs but it is the reality and it’s not a good one.

“Of course patients can access social workers and patient liaison officers in hospitals and many of them do provide a valuable service. However, ultimately these people are also employees of the service provided their care and consumers are not always sure where their loyalites lie. Also, they are often very busy and difficult to get hold of when patients need them.

“There’s nothing new about the concept of patient advocacy, our service simply provides a new way of accessing this support. Our health system is extremely complex and many consumers find it difficult to advocate for themselves.  There is a strong burden on patient to be the ‘keepers of knowledge’ about their health care history and to know how to advocate for themselves, which can be difficult for someone who is unwell.  Ensuring that providers and consumers all have complete and accurate information from the start is important as once a diagnosis is made or a treatment pathway commenced, it can be difficult to reverse.

“Our health system is excellent in many ways and something to be proud of.  There are a lot of very positive moves being made towards making health care more consumer-focussed. But there is still a long way to go. Due to the more complex nature of modern health care, more specialised knowledge is required and this can trigger embedded power issues which make it difficult for consumers to be in control of their health care decisions.

“Also, the reality is that modern health care is very complicated and our system and the people who work in it are often under a great deal of pressure.  Nothing indicates that this is going to improve, we have an ageing population and an increase in chronic conditions which require much more complex care.  Even in a perfectly run health system there may still be a need for professional advocacy service.

“We do a lot of work that we don’t charge for. Often our role is to support consumers to become their own advocate by giving them information about their rights and suggestions about how to ask for second opinions or obtain other information.  It’s really important that consumers understand that they are allowed to keep ask questions until they feel they can give informed consent. Unless it is a genuinely emergency situation, consumers should take the time they need and obtain the information they require to give genuinely informed consent.  Often people sign forms agreeing to treatment because they feel that is the only option.

“It’s important to understand that the notion of consent in health care is real and is a cornerstone of health law.  In practice, informed consent is watered down through the way health care is often delivered.  Before genuinely informed consent can be given, consumers should be able to understand their options, have time and mental space to make decision and not feel under pressure by doctors or health services.  Sometimes it is as simple as taking 5 extra minutes or asking a few more questions to get some additional information. But often consumers are worried that they will turn hospital doctors against them by ‘being difficult’ so they don’t ask for information they are entitled to. This is one of the subtle ways in which the notion of informed consent gets watered down.

“Of course, in emergency situations it is not always possible to take additional time to make decisions. However, most health care situations involve non-emergency care where there should be the time and resources available to ensure consumers are empowered enough to make decisions in their own best interests.    

“Interestingly, we have had a number of clients contact us who can’t afford private health insurance but who want some assistance in navigating the public health system.  Private health funds can sometimes provide advice and assistance to their members but many people cannot afford the premiums or the out-of-pocket costs associated with private care. For a much smaller amount of money we can help them access services in the public system and obtain the best treatment options for them. 

 “I can see the value in making professional advocacy services accessible to all through some kind of subsidy – although interestingly we have never had a client raise a cost issue with us. We always fully discuss costs with clients before providing the service so they understand exactly what they are paying for. Also, many of our services are relatively simple and low-cost so are unlikely to cause anyone financial difficulties.  One issue that would be important to consider in relation to a third party subsidy would be to ensure that the independence of advocates is maintained. Currently we are not part of the health system so our only accountability is to our client.  Funding from external sources, such as government or private health funds, may have the potential to compromise this independence but this could be avoided if it was structured properly. I can see the advantages of providing a wider group of consumers with access to (for example) 2 hours of professional advocacy services per year, outweighing the potential negative impact of compromising independence.

“We have received some criticism, primarily from the AMA which has expressed concern about professional advocates ‘profiting from someone in that circumstance when quality communication is all that’s needed’.   However, we have found that this perspective is not shared by our clients who value our service and are happy to pay for it.  We have had a number of clients write to the AMA expressing their view that their criticism is unwarranted and that our services were important to them – which demonstrates their support.  We have also been criticised for taking money for just ‘attending appointments’ which in reality is only a small part of our work. There are good reasons why clients ask us to attend meetings with them, for example, often people who have received a diagnosis of a serious illness are not ready to tell their family members and want someone independent to support them during the initial diagnoses and treatment decision process. 

“Clearly, the AMA’s view is not shared by many doctors as we have had a number of requests from medical professionals (as well as nurses and other health care providers) who themselves are interested in becoming health advocates. They clearly see the need for such a service and believe that they can use their knowledge of the health system to assist others in accessing the care they need. ”

“Ultimately, I would love our services to be redundant but the reality is that this is not the world we live in and while the need exists, it’s important consumers can access this service.”