Saturday, August 26, 2017

My brother's last months weren't easy, but now he's where he would have wanted to be

(First published in The Dominion Post, August 25.)

My beloved older brother Justin died a year ago today. We buried his ashes last Saturday in the Waipukurau Cemetery.

It was a simple but moving ceremony – a fitting final act in an exemplary life that touched many people.

It was a therapeutic occasion too, because it helped erase memories of the last months of Justin’s life. These were not easy.

He and his family had been on a roller-coaster for months: in and out of Wellington Hospital, subjected to endless tests and scans and in constant, acute pain whose source proved hard to identify.

Surgeons eventually removed an infection of his prostate and at the same time took out a section of cancerous bowel that had been found by chance.

For a short time the prognosis looked good. We thought the cause of Justin’s suffering had been found and dealt with.

But the pain continued, accompanied by a debilitating weight loss that suggested there was something else going on that the doctors hadn’t found. 

Justin never showed a trace of self-pity, but there were times when he did get frustrated. He was an optimist by nature, and grateful for the care he was given, but toward the end his faith in the system was eroded. A bewildering number of surgeons and doctors came and went. The messages he was getting were conflicting and confusing.

Justin suspected his illness was related to a treatment called brachytherapy, which he had received privately four years earlier for prostate cancer. When eventually he got to see one of the specialists who had administered the brachytherapy, he was assured his sickness was unrelated. But the doubt lingered.

Eventually he was diagnosed with high-grade urothelial cancer. This was revealed to him out of the blue one morning when he was re-admitted to Wellington Hospital in acute pain.

The diagnosis had been made on June 27 but he wasn’t told until July 30. The doctor who broke the news to him did so almost casually, assuming he already knew.

Whether the time lag reduced his life prospects, I don’t know, but logic tells me it must have. It seemed that a vital window of opportunity had been lost.

A major operation was scheduled. Surgery to remove Justin’s bladder, prostate and urethra was expected to take eight hours. It was made clear this was a life-threatening procedure in his weakened state, but it was a risk he and the family were prepared to take. 

We all gathered, hoping for the best but prepared for the worst. Then, early on the morning of the scheduled surgery, Justin was told the operation wouldn’t proceed because there was no intensive care bed available for him when he came out.

It was a crushing blow. I think Justin gave up all hope that morning. He no longer trusted the doctors to tell him the truth. He just wanted to go home.

In the emotion of the moment, we wondered whether the doctors had been stringing us along – that perhaps the lack of a recovery bed was a convenient excuse for not going ahead with an operation that had little prospect of success in the first place.

Maybe they thought they were being kind letting Justin think the operation might save him, when in fact it would have been less cruel to tell him what seemed the obvious truth: “There’s nothing more we can do – you’re dying.”

By coincidence, the day before the operation was scheduled, we bumped into a respected senior medical specialist whom I happened to know. When we explained why we were at the hospital and what we had been told would happen to Justin the following morning, he gave us a knowing look and made a comment that I didn’t quite understand.

It was only later that we realised he had been trying to suggest, without actually saying so, that perhaps his colleagues weren’t being entirely honest with my brother.

So Justin went home to die, and now he’s at rest in the town where he spent his formative years before he moved to Wellington, to a career in broadcasting that was to make him a much-loved presence in Wellington households over several decades.

He’s buried in the same plot as his older brother Martin. Our parents lie next to them and another older brother, Peter, who drowned in 1958, is only a couple of metres away.

I can think of far worse places to spend eternity. The cemetery is on an elevated site sloping gently to the west, with a pleasing outlook toward Pukeora Hill and the Ruahine Range beyond. Justin’s widow, Judy, and the rest of his family are satisfied it’s where he would have wanted to be.


Ron said...

The medical / hospital "profession" the world over has a terrible record for what is insufferable in the business world. Getting up to date. They have the perpetual excuse of all civil services and monopolies of professional capture. "We need more resources". They have had waiting lists all my life, pushing all to go provate until they have exhausted every scrap of personal wealth they have. It is a rort.

If there is a backlog then it needs checking/monitoring to see if it is getting better or worse.
If getting better, then it is only time before it is current (and the expense overall declines sharply).
If getting worse, it simply needes "extra" resourse until it is improving.
If it is staying constant, it is deliberate with an alteria motive. I know of a few motives with this "profession". They have been behind a convenient lag term, all of my 67 years of life.

And my thoughts are with you over Justin. Sad loss to us all.

Max Ritchie said...

This is a very moving tribute to Justin and an indictment of our health system. In its defence, but only in part, it's an imprecise science run by humans, with all that involves - variations in skill and knowledge, emotions, fatigue, lack of resources (no country can afford the health system we all want). There's no solution, only "try harder". Most of the people involved are hard working, committed and professional. But they are human. And some of them, a tiny number, might be better in a different occupation. My condolences.

Karl du Fresne said...

Thank you both for your kind wishes.

lolitasbrother said...

Good going writing about your brother like that Karl, I remember seeing your post to him last year.
My brother died in a mountain climbing accident when he was 21, I dreamed he came home again for the next thirty years. Then finally I made a 3 minute film of his life for us [ in photos].
About hospital. Your brother may have liked to meet my other younger brother.
Professor Scott at Christchurch has an alarming habit when he arrives at your bedside with a V formation of interns.
He just says " You tell me what is sickening you ' or words similar.
When you see about twenty pairs of medical eyes looking for your answer you get the feeling that they will take notice. And then any intern that wants to ask questions [ actually take a history and context ] does so.
Brothers are good, and you are a good brother to post about him Karl.

Richard McGrath said...

Firstly, thank you Karl for sharing that story. As a medic, I have met several patients who had brachytherapy for prostate cancer and in most cases it worked well and allowed them to avoid external radiation (which is analogous to using a sledge hammer to kill a mouse, as it can cause significant damage to the normal tissue nearby). Sorry to hear it wasn't curative in your brother's case.

Ron, as long as there is a public health system, there will be waiting lists, as there has to be rationing of treatment. That's why I have long advocated allowing people to self-fund - or use medical insurance - to cover the costs of health care, by way of tax cuts. Private hospitals don't tend to have waiting lists.

Ron said...

Richard I agree totally with your comments. It is refreshing to see the situation acknowledged.

Roger Douglas had the only practical solution I have come across for this W.W. problem. He suggested having insurance pay the cost (or the State, for the needy) with the indiviual deciding who fixed them, but the Govt not do the work.

I simply can't stand about 20% of my tax going to the hospital fraternity and I never will get to receive any benefit unless I have exhausted all my wealth first, plus be expected to have health insurance that does actual get me fixed. Sod paying for things twice.

Lets have either the Govt doing 100% of the job or private doing 100%. Or... make it an option. Those who take private health insurance and get a 20% tax credit (outside the Govt scheme). Or select the Govt scheme (default). "All" the rich end will gleefully take insurance and be zero burden on the state and the country would soon make the best option obvious and maybe we would all be fixed and well without waiting. We currently have the worst of all worlds.