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Medicare co-payment failed to understand illness as a relationship


Cover of book 'Fraying: Mum, memory loss, the medical maze and me'

Illness is seen as a solitary affair. We see chronically ill people as leaving the world of ordinary human society and moving alone into the impersonal world of medical science and the health bureaucracy. From being agents they become patients.

That is indeed the way in which many people experience illness. But it is a mark of failure. Illness is more properly all about relationships. And its negotiation involves testing changes in relationships both at a personal level and with institutions. The key to these changes is the readiness to relinquish control when required.

These reflections are prompted by the fate of the Medicare co-payment and by a recent book about dealing with Alzheimers. The former was killed because it was seen as an altogether naked attempt by the Government to control health expenditure without any concern for people and their relationships.

In the book Fraying: Mum, memory loss, the medical maze and me, Michele Gierck writes of her mother Jean who lived independently but increasingly displayed signs of memory loss. She describes how she accompanied Jean along her journey, facilitating the myriad relationships involved in reaching appointments, insurance, bill paying, receiving tradies, speaking with nurses and doctors, accessing council services, and adjusting home living. These labours enable Jean to continue living at home, but threaten her daughter’s own independent living. .

The title of the book – Fraying – describes accurately what happens to Jean as she loses her memory. Past relationships and events become haphazardly present, but recent events and people are blurred. The threads remain but work loose as the weave disintegrates and loses its pattern. Fraying is all about losing the ability to control a life of daily relationships and about accepting or rejecting a measure of dependence.

But Michele’s response to her mother’s illness also involves fraying. Her work, and periodically severe back pain, make her care for her mother demanding, particularly as she enters the detail of Jean’s financial responsibilities and medical care. To line up people to take her mother to appointments or to discover that Jean or clinics have cancelled some appointments and that she is waiting to be taken to non-existent appointments, creates constant pressure. The threads of life balance are stretched. So are the threads of the relationship between mother and daughter as they transfer to the other the role of carer and cared for. Both must yield control of their lives and enter a world in which contingency is king.

In this book illness marks not only the fraying of relationships but their re-weaving. There is humour, as well as tears, as Jean and Michele revisit and find new meaning in old connections. The fortunes and colours of the Hawthorn AFL team, rituals of Catholic devotion, the glass of brandy smuggled into hospitals and the little deceits that fool no one, are as important markers of illness as pills and appointments. Illness is a shared human craft in which the threads of a fraying human lives are woven into fresh patterns.

In illness these more intimate threads also need to be interwoven with institutions that necessarily codify it into quantities, procedures and entitlements. The measures that lead to diagnosis and treatment, the prescriptions, the test scores and forms on which respite care and council services may depend, are part of illness. In each of them human beings and quality of their relationships are central.

The challenge demonstrated by Fraying is how to bring together personal and institutional relationships. It shows how damaging preoccupation with control and lack of human sensitivity can be. We meet receptionists who forget that the patient cannot remember, doctors who have their mind made up before examining the patient, the health officers who point out a Catch 22 that will exclude Jean from care, but who are not interested in resolving it. These are agents of fraying.

But we also meet others who weave: the nurses who love to spend time with Jean, the people from the church who visit and drive, the administrators who bend regulations to common humanity and the hospital staff who manage not to notice when brandy is smuggled in.

Care of illness is very expensive; it needs government provision and regulation. But it is centrally about relationships, and these need to be fostered.

Andrew HamiltonAndrew Hamilton is consulting editor of Eureka Street.



Topic tags: Andrew Hamilton, illness, MIchele Gierck, medicare, medical bureaucracy, health



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Existing comments

Much in our lives is organised on the industrial production line model. The motto here could well be "Process not people". One has to ask "To what end are all these processes leading?". It is no wonder, once you get into this production line model, into which human sensibilities do not fit neatly, feelings tend to fray. It is, of course, the human touches of people who refuse to become just passive machine watchers which keep society sane. Take this away and you have a grim materialistic society. We need to recover our humaneness. Otherwise our sense of interrelationship with others and the consequent sense of community will both wither. I wonder where the dull grey men and women of Canberra are wanting to lead us? A completely materialistic world where the old sense of community and relationships such as our parents and ancestors knew no longer exists? Tragic, that. You have certainly sounded the tocsin here, Andrew. Sadly, here I think our leaders and potential leaders are deaf. I think we need to apprise them of this. The ballot box is the only place they seem to "hear".
Edward Fido | 13 March 2015

I think when we experience illness our vulnerability is revealed, our sense of inner strength is tested, and our dependence on loved ones is heightened. Quality health care is also very expensive. And where we live makes a difference. Those who live in rural and regional areas often have to travel significant distances to access specialist services. Medical staff do a profoundly important job and it's work that needs to be driven by dedication and love. Health professionals need to be heard and heeded as part of the process in decision-making by our politicians. And health consumers do have a voice at the ballot box, as Edward notes.
Pam | 13 March 2015

Thanks again Andy for highlighting the importance of relationships. Michele's concept of fraying is so apt when speaking of Alzheimer's and the need for re- weaving relationships into a new cloth necessarily requires sensitivity and understanding from all involved. Thank goodness for those warm human beings who find ways around the strict contingencies of rules and regulations.
Anne | 16 March 2015

If illness is predominantly about relationships, Andrew, let us not forget that as far as the doctors and nurses are concerned the first priorities are that the major relationship between illness and people is that diseases cause pain, suffering and death for the patient, a consideration which precludes primary consideration for other healthy associates of the patient but does not exclude compassion from those associates. In passing, I often made up my mind as to what I had to do from the referring doctor's letter before I saw the patient as many specialists do. Also, as I'm sure you know, there are agencies that care for the support of relatives usually at the request of the treating doctor. Relatives are understandably driven to lay blame if the treatment does not involve easing their anxieties as well. The doctor's covenant, however, is with the patient as the priority.
john frawley | 16 March 2015

What a lovely understanding you show of the whole process, Andrew.Thank you so much. Memory Weaving is a book published by Poetica Christi Press which also deals lovingly with the same topic.
Jean Sietzema-Dickson | 16 March 2015

Thank you Andrew and Michele. As a person with terminal leukemia, the tears flowed with the recognition of the beautifully expressed 'illness is a shared human craft', and the naming of 'others who weave'.
Patrick Wright | 16 March 2015

I was reminded of the book of Job. When a person experiences illness and/or misfortune it is indeed a solitary experience. Job's friends could only observe his dilemma, offering only platitudes and finally blaming Job for all his troubles. It was a lack of understanding , empathy and compassion by Job's 'friends'. Which brings me to mind; which friend is Mr. Abbott to the sick,poor and defenseless in Australian society?
Norma Marot | 16 March 2015

I cared for my ageing father in a full time capacity for nine years, with numerous doctor-patient interactions. I fail to see how the medicare co-payment suggestion would have sundered the relationship we had with our medicos. Practically every other advanced country requires payments for consultation. I don't see why we expect to be subsidized for this expense - especially the wealthy among us.
HH | 17 March 2015


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