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INTEGRATING CARE FOR PATIENTS WITH SERIOUS AND CONTINUING ILLNESS

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Rising numbers of patients with serious and continuing illness are set to change the way we provide medical care.  They need care that like their ailments, is both serious and continuing.  

This is not a new insight.  We have known about the increasing load of chronic illness for decades.  We know its pattern has changed.  We know that while it mainly afflicts older people; children and adolescents who would have died decades ago live on now.  They, too, need continuing care. Middle-aged people with cancer or heart disease or mental illness saved from death from an acute illness now likewise need continuing care. 

This changing pattern of illness means that hospital and out-of-hospital care must, be better joined up because neither form of care is at its best when managing independent episodes in a long-running story. It means that the way we provide care in future should be built around what is best for the patient, namely, continuous and linked.  We have known all this, too – but now the pressure to do better is coming from the community itself. 

When the community becomes concerned, politicians respond.  The prime minister, Malcolm Turnbull, has committed $38 million this year to trying out ways of linking care for patients with chronic problems, placing the general practitioner in the driving seat.  

Meet George Henderson – lets give him that name.  I saw him at home several years ago when I was working at the Respiratory Ambulatory Care Service (RACS) at Blacktown Hospital.  Two of the nurses who do most of the work of the clinic took me to see him.  They had a panel of over 100 patients who had been through the their six week program and were living at home.   

George lived in a community-services house.  His principal carer was his former wife who had come back for this purpose as their children threatened not to speak to her again unless she did!

We arrived at 10am.  He came slowly to the door in pyjamas, trailing a long cord to an oxygen concentrator in his kitchen. He was exhausted when we got him to bed.  It was a tiny, lonely room. There was a bedside torch, copious bottles of tablets and on the shelves several small and intricate balsa boat models that he made as his hobby.

The nurses chatted, examined his chest, measured his blood pressure and oxygen saturation.  How did he bathe?  I asked.  He had to clamber over the edge of a bath.  There were no handrails.  Could we get them installed?  One nurse told me this would require authorisation from the hospital social worker.  When can she come? I asked. ‘Oh!,’ the nurse laughed.  ‘To this suburb?  Four weeks!  To [an up market neighbouring suburb] one week!’  If he slipped and survived with a broken femur who would be to blame?  We would all pay.

I noticed when I assessed him that his teeth were poor.  A dental appointment at a hospital outpatient department would take many months.  One nurse told me that when they found an acute and serious dental problem, they would send the patient to hospital ‘with an exacerbation’. That way, the nurse said, his dental problem would be speedily sorted. But getting him to hospital ran the risk of oxygen overdose on the way and ICU on arrival for hypercapnia.

To expect a general practitioner to be the centrepiece of George’s care would require remuneration that matched the cost. The doctor would need allied health professional staff immediately at his or her call – physios, nurses and more.  Connection to a specialist would have to be immediately available.  To give George a sense of confidence he would need to be able to talk to someone who knew and understood him 24/7.  

One of the nurses who was on the RACS 24/7 roster told me how George had called at 2am one day, acutely breathless and anxious.  She was able to ‘talk him down’, encourage him to breathe as he had been taught, make a cup of tea.  She avoided a hugely disruptive emergency visit to hospital. 

There is more to integrating care for patients with serious and continuing illness than can be written  in bureaucratic documents and business charts. It is a matter, most fundamentally, of our response to the real, grounded problems of the people we care for,  the way we respond to growing human needs.  Money matters, but it can be found. As a profession we should consider joining our voices to those of our patients in seeking better ways of caring for those with chronic problems. 

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