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Speaking up for the potential of patient advocates

The AMA should reconsider its opposition to the concept of paid patient advocates, says Anne Cahill Lambert, a prominent health consumer advocate who writes below that many patients could benefit from someone to help them negotiate “the maze of the complex health system”.

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On Dad and Dave, and others who might be helped by patient advocates

Anne Cahill Lambert writes:

There has been a bit of noise lately about the concept of paid patient advocates.

The Australian Medical Association has bemoaned the introduction of advocates, which follows a similar trend in the United States and the United Kingdom.  A company has been established in Victoria to assist patients in achieving a specific health outcome, to intercede on behalf of patients and/or to accompany patients at all stages through the health system.

The AMA is of the view that more resources are needed in the health system, not patient advocates.

And Croakey authors have been in the thick of discussion as well, with articles from Dr Mark Bahnisch and Jennifer Doggett.

I take my Mum to all her medical appointments – to the GP and the range of specialists that an 85 year old needs.  I find that the GP’s staff resent me, whereas the specialists are generally pleased that I am with my Mum.  I suspect the GP’s staff are unhappy that I ask things like how long the wait will be.  I am her advocate and there to ensure that she understands the suggestions and recommendations that are made about her healthcare.

My Mum’s good friend isn’t as lucky. 

She is 92, deaf and nearly blind, but still lives independently.  Her family is either unavailable or unwilling to accompany her to any appointments.  It is no surprise that she is depressed and miserable – a combination of perhaps an inattentive family and, as a result, less of a focus on her health and well-being.  She could certainly do with a patient advocate.

My husband accompanies me to specialist appointments.  I am lucky that he has the time to do this, especially as these appointments are interstate.  He remembers details of the consultations that I sometimes don’t remember – whether because of the anxiety about being quite ill, or the complexity of the issues being addressed.  Early in my illness, a friend accompanied me.  She kindly wrote up a summary of each consultation so that my husband knew what was going on.  I am indeed blessed to have such support.

I received a call from a bloke I don’t know (Dave) while I was waiting for my plane at Melbourne Airport between Christmas and the New Year.  To cut a long story short, his elderly Dad had collapsed the previous evening.  When the paramedics arrived they popped oxygen on, and Dad’s health improved out of sight.  They noticed that he had a couple of oxygen cylinders and quizzed Dave about his need to be on oxygen.

Cut to the chase – they didn’t take Dad to hospital as his health had improved when he went on oxygen.  They recommended that he stay on oxygen while he felt unwell.

Here’s the problem for Dad:  up until now, he didn’t need to be on oxygen for a large number of hours a day, but his needs have changed.  He doesn’t have an oxygen concentrator – one of those biggish machines that looks like an air conditioner from the 1970s.  The benefit of using such a machine is that it runs on electricity and draws room air into the machine, stripping the nitrogen out of it, and converting it to about 95% pure oxygen.  Of course, the other benefit of using such a machine is that the expensive portable oxygen is saved until it is needed for travel.

Dave had obtained my phone number circuitously from a friend of a friend.  He had been assured that I would know how to get through the process.  Unfortunately for Dave and his Dad, the general practitioner was closed for the Christmas break, as was the specialist – he had already tried to contact both.  I gave Dave the advice he needed and asked him to ring me if he needed any more help.

All of this took me about ten minutes.  I know what to do because:

  • I worked in the health system for more than thirty years, the last ten of which were as a CEO;
  • I have been on oxygen for some considerable time and volunteer for the local committee that devises the policies and procedures around the provision of domiciliary oxygen.

I have written extensively about the need for oxygen to be readily available to every Australian who needs it and also for it to be included on the National Disability Insurance Scheme.  And I should note that I live in one of the good jurisdictions that supply oxygen to patients without means testing.

But Dave’s call does lift the issue of patient advocates to the next level.

Dave is his Dad’s advocate already.  But he didn’t know how to organise oxygen.  It would be churlish of me to suggest that the GP and/or specialist should have anticipated Dad’s needs and given Dave some advice about what to do in the very likely event that Dad would need to increase the number of hours on oxygen.  The AMA could counter claim that these doctors are incredibly busy and if they had more resources, this expectation could have been addressed.

I don’t think that’s good enough, though.  For this particular case, once a patient goes on oxygen, it’s a slippery road to demise. Dad was always going to need to increase the hours and, as with many emergencies, the fact that it happened during the Christmas break should not have affected his health and well-being. Indeed, Murphy’s law says that Dad’s needs will be multiplied when least expected and when access to services is minimal.

The concept of patient advocates is not new: following the introduction of freedom of information legislation in 1982, Victorian teaching hospitals appointed patient advocates.  These appointees were primarily to address patient complaints.  A secondary role was to look at the care journey although this tended to take a back seat when patients realized they could ask to either read or have a copy of their record.

The private and professional patient advocates are to help patients through the maze of the complex health system.  Sometimes patients just don’t have anyone to accompany them to the doctor, as in the case of my Mum’s old friend.  But sometimes, even with a family member such as Dave, a good outcome was not possible without some other intervention.

I don’t want to criticise all doctors, but I do think the AMA needs to re-think its approach of canning advocates and making a claim for more resources.

It should be encouraging all medical practices to re-focus on the patient by putting the patient at the forefront.

For example, rather than embrace the new technology of the personally controlled electronic health record (PCEHR), the AMA has developed its own item number to prepare or manage a shared health summary.  The cost to the patient is between $53 and $210, which cannot be reimbursed through Medicare.

I would regard such a summary as good patient care and a part of the practitioner’s work, which will ultimately save time in the event of an emergency, for example.

I well remember lying in emergency departments when elderly patients have been brought in by ambulance and no one has a clue what medications these patients are on.  Staff have had to chase the GP during or out of office hours, generally an onerous task.

For me, it is a sad state of affairs that the AMA hasn’t been able to consider whether it has had a role in the development of paid professional patient advocates.  Patients are clearly approaching advocates because they feel they are not getting the information or care that they need.

It would be lovely if Australia had a bottomless pit of money to continue to pour into the health system.  We don’t, though, so we need to work with what we’ve got.  It would be terrific if all clinicians could think about how they’d like a much-loved member of their family treated.  And then they should treat the patient in front of them in those terms.

No amount of money can buy that concept.

PS:  I’m not criticising all doctors, the AMA or all clinicians.  There are many good people in each of those categories. 

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