147 – Margaret Learns How to Paint: 15 January 2025

Because I decided to force the health insurers to obey the law, Margaret gained an additional 20 months of life and had a painting lesson on 15 May 2022.  Margaret is in the exact middle.

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The surgeon had scheduled yet another operation on Margaret for Wednesday 1 December 2021.  The cancer had vanished from the lymph nodes, but it was still there and the primary source of the cancer in her ampullar was still present.

The 1 December operation took place as scheduled.  The news from the surgeon could hardly have been more dismal.

He had not been able to administer endoscopic radiotherapy to try and blast the cancer because the inflammation in Margaret’s digestive system had not gone down but increased.  The inflammation had prevented endoscopic radiotherapy during the previous operation and the medication since then was supposed to have got rid of the inflammation so the radiotherapy could go ahead on 1 December.  The surgeon’s written said this.

Gastroscopy Findings Stomach – Normal. Duodenum – Normal         Duodenal Papilla Major Papilla – The 2 old stents were seen. The ampullar was markedly ulcerated and the duct/ biliary orifice were widely opened.  This looked like radiation therapy to the area and this has led to a patent duct. Cannulation of PD was not successful again. The CBD was cannulated and opened a marked dilation in the proximal portion (up to 20 mm).  There were lots of filling defects which was a mixture of sludges/ stone fragments and airbubble on balloon trawl. Good drainage via the biliary orifice was seen, thus, no stenting was required. Conclusion Patent CBD, no stent required. PD no accessible.  No RFA treatment

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The medical language in the report was not easy to understand, but the oral report the surgeon gave to Margaret was very clear. 

The cancer was thriving and Margaret should expect the cancer to kill her sooner rather than later.

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The surgeon decided he would perform yet another operation on Friday 3 December.  He hoped to find out more about the growth of the cancer.  This meant Margaret was trapped in the hospital.  If Margaret returned home from hospital, the government restrictions surrounding Covid meant she would not be readmitted to the hospital in two days’ time on 3 December.

My visit to Margaret on 2 December after the 1 December operation was hard for both of us.  I wheeled her in a wheelchair to the hospital coffee shop.  While we were in the coffee shop.  Margaret pointed to the part of the hospital which housed the Palliative Care Unit.  She also spoke about Mary Potter Hospice; Mary Potter is a ward in that hospital dedicated to the care of the dying.  She said she would visit Palliative Care and Mary Potter after I went home.  When I rang Margaret later that day, she told me she had been to Palliative Care and Mary Potter, that the staff were extremely helpful and that she had done all necessary paperwork to use their services.

We were so very close to the end, but Margaret was still completely composed and dealing efficiently with the administrative detail to enable her to die with as much dignity as possible.

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So that was how we were dealing with Margaret’s likely death in the evening of that Thursday 2 December 2021.

In the very near future, the cancer would kill her and she was doing everything she could to make my life after her death and just before it, as straightforward as she could. 

That night I began thinking about Margaret’s funeral.  What should I say?  What music did I want during the service? 

My sleep was terrible that night.  I woke up at 3:00 am on Friday morning, mentally repeating what had happened on the Thursday morning.  Realising that staying in bed would not get me any extra sleep, I got up, walked for an hour, breakfasted and read the newspaper.  Doing things to “keep me busy" made the hours pass, but so very slowly.

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My thoughts that morning kept returning to the behaviour of the health insurance funds.

Margaret had been receiving treatment all year at Lift Cancer Care Services and the treatment had obviously helped keep her alive.

About two months earlier (I think it was in October 2021) Lift told Margaret that some insurers were refusing to pay for the treatments provided by Lift Cancer Care Services.  As from 1 December, Lift needed all patients insured by HCF, NIB and teachers’ Health to pay in full for the treatments they received on the day they got the treatments. 

On 2 December, I knew Margaret was going to die in the very near future, so the refusal of the health insurers to obey the law would not be of concern to me for very long.  If Margaret lived long enough to ever need any more treatments at Lift, I could somehow find the money to pay for the treatments. 

No matter what I did, Margaret was going to die very soon and the actions of the health insurers would not really matter to me into the future.  But I kept thinking of the other cancer patients who received treatments at Lift.  How were they going to receive their treatments if the health insurers kept refusing to pay and if they did not have money in the bank to pay out of their own pockets?  

They would die much more quickly than they should if they could not get the treatments their doctors wanted them to get.

I wondered, should I take action to help these other cancer patients get the treatment they needed?  In the great fog of sorrow about Margaret’s impending death, my determination crystalised.  I had to do something; I could not let the actions of greedy health insurers cause needless deaths. 

I decided to write to HCF and the Commonwealth Ombudsman.  I imagined – wrongly – that the refusal to pay would be fixed as soon as I complained.  If HCF refused to obey the law, the Commonwealth Ombudsman was certain to force it to obey the law.

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I was wrong.  The Commonwealth Ombudsman knew what was going on and had refused to enforce the law.

HCF and the other health insurers knew the Commonwealth Ombudsman had no intention of enforcing the law.  This knowledge reinforced their refusal to obey the law.  What bank robber will ever stop robbing banks when the robber knows the police will never do anything to stop the robber from robbing the banks?

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I had no way of knowing early in that morning of 3 December 2021 that my determination to force the health insurers to obey the law would have a direct impact on Margaret’s continued life.

I wrote my first letters in what became a very long struggle to enforce the law – and Margaret got an immediate reprieve from imminent death.  By deciding to help other patients, I ensured Margaret received an additional 20 months of life.