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When prognosis is wrong – Glenn's Story #DefendNZ Documentary 5

Glenn’s eligibility under the End of Life Choice Bill:

Glenn was diagnosed with Grade 2 Oligodendroglioma, a type of brain tumour, in 1997. During debulking surgery in 2002, bacteria entered his brain and caused an infection in his skull that was discovered only a year later. Within 18 months, he started to decline in terms of mobility, continence and his ability to speak coherently. In three different years (2004, 2006 and 2007) he was given a prognosis of six months or less to live. He was assessed as clinically dying in 2004, and at the end of life in 2006, 2007 and 2011. Glenn died in 2011.

Had the End of Life Choice Bill been law at the time, Glenn would have been eligible under the “grievous and irremediable medical condition” criteria from the time of his diagnosis, and under the terminal illness criteria in the years 2004, 2006, 2007, and 2011, when he was given a prognosis of six months or less to live.

When prognosis is wrong – Glenn’s Story

(As told by Heather and Rachel Major)

Heather and Rachel are a mother-and-daughter team who have shared a bittersweet experience over the last few years. Having to watching a beloved husband and an adored father live with a terminal illness until he died at the age of 42 has not been easy for either of them. Despite this, they hang onto every precious memory from that tumultuous time. 

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In 1991 Heather moved to Hamilton to attend university and there met Glenn, the love of her life. Three years later they were married. One day, out of the blue, came a most unwelcome and worrying interruption to their happy life – Glenn suffered a seizure. He was only 28 years old and they had been married for only three years. At first his likely diagnosis was epilepsy, but three months down the track the true cause of his illness was revealed. 

It was on a Friday afternoon that the specialist rang, “There’s no time for you to come in, I’m going to have to tell you over the phone; you’ve got a brain tumour. You need to get into Auckland hospital ‘cause we’re gonna need to operate on Monday.” Still in shock, the couple made their way to Auckland. Heather recalls, “Our world was completely rocked. The neurologist had spoken only about epilepsy and I still remember the shock when he used the word ‘brain tumour’. I thought, ‘There could be nothing worse than that.” 

Overnight Heather became the breadwinner as Glenn could not drive and had to give up a job he had just been offered. This was a very stressful time, but they decided to meet its challenges with as positive an attitude as possible. “Glenn was always a seize-the-day kind of guy and we were going to make the most of life, not knowing how long we had or what the future would hold for us,” said Heather. 

Two years later they set off to Japan to make the most of some opportunities which had opened up for them there. They had an amazing eighteen months living in Japan, and Glenn managed to teach English and guitar, and also to coach football. Heather describes it as an amazing time made possible by Glenn’s strong desire to do such things while he still could. 

During this time they got a wonderful surprise when they discovered that they were expecting a baby – their daughter Rachel. But it was also around this time that Glenn had a scan showing a slight change in the tumour, after 4 years of no change, and so they decided to return to New Zealand. 

In 2002 they had a baby and Glenn had surgery, radiotherapy and chemotherapy – a massive year for them both. Rachel was born in July, and an operation that Glenn had had just two months before her birth hadn’t seen him bounce back as the doctors had hoped. Glenn was told that during his surgery bacteria had entered his brain and had grown into a nasty infection which meant that part of his bone flap had to be removed.

Glenn suffered steroid-induced psychosis and became very suspicious of those around him. “It was like a scene out of the movie A Beautiful Mind, that we had just watched together. It was a very strange situation to be in.” This condition lasted five weeks altogether, which Heather recalls as some of the longest weeks of her life.

In the second year of Rachel’s life, Glenn’s condition declined rapidly, and several disabilities began to set in. He needed a walking stick, his speech became difficult and he needed a sleep every afternoon. Heather said, “His chronic fatigue pattern was so precisely timed that at one o’clock every day, he could just about fall asleep wherever he was. You never imagine that your husband is going to be surpassed by his toddler daughter in terms of walking and wakefulness.”

When you see the possible symptoms on paper, they can seem unbearable. Especially if you haven’t experienced them before. But things like losing mobility usually happen over time and our strength builds the same way. Because of this, we can be okay in these situations, even if we’re initially overwhelmed.
— Heather

Heather never saw Glenn as a burden, however, and she learnt to be flexible and adaptable to his needs. “We were a team. His scan was ‘our’ scan, ‘we’re’ doing this, ‘we’re’ going to ‘our’ doctor. It was always like it was happening to me as well,” says Heather. “You just adapt because those are the limitations you’re living with and you learn to make the most of the situation. People felt sorry for Glenn but to him it was just happening, so he got used to it as time went on.”

Although it was quite obvious to his friends that his condition deteriorated over the years, it was also apparent that Glenn did not lose his spirit or his will to live. He kept his sense of humour, putting on funny accents even though he had difficulty getting the words out.

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Glenn tried to make the most of each day, doing whatever he could to maximise his time with his family. He enjoyed taking Rachel to kindy on his scooter and did what he could to teach  her how to play football. Rachel has fond memories of her Dad coming to watch her football games. The fact that he wasn’t as mobile as other Dads never bothered her.

He was just my Dad. I saw past all of that. It didn’t make him any less of a person to me.
— Rachel

Heather remembers Glenn’s last year as an extra tough time. 

But she also remembers people visiting Glenn and telling her, “I have to be really honest; I didn’t want to visit. But man, I feel so good having seen him and he made me feel better and we laughed even though he couldn’t even talk to me. How was that?” People were finding that Glenn was still life-giving and “pretty cool” to visit.

During that year he used a wheelchair and lived in a rest home. Glenn got an infection in his toe and Heather was shocked when a doctor there didn’t seem to be trying to do much about it. He explained, “Well, Glenn is going to die… and it will probably be from an infection in the end, so it might be this infected toe that takes him out.”

Heather was furious. They had navigated through fourteen years of Glenn’s illness, so for Glenn to die of an infected toe just felt wrong. Heather decided she wasn’t having a bar of it, so she organised a mobility taxi and took Glenn to another doctor who treated his toe. “It showed me that the first doctor didn’t know my husband like I did. Glenn wouldn’t have wanted to die like that. He would have wanted to live till the end, but at the same time, not be kept alive at all costs.”

In 2011 Heather walked into Glenn’s room surprised to see him wearing a sticker proclaiming, ‘I voted’. She wondered how on earth it had happened. Heather said, “We hadn’t talked politics… I mean we couldn’t even talk daily life. He couldn’t give a straight yes-or-no answer to ‘are you hungry?’… and yet somehow, someone had got a vote from Glenn in that position.” No one gave her a proper explanation as to who had helped him vote and how. She wondered what else Glenn could have been encouraged, or even persuaded, to do in her absence. If euthanasia were legal years earlier when Glenn had more cognition but had a lot of challenges, might someone have talked with him about the option of euthanasia?

Heather says that while she has definitely had her share of difficult days, she would hate to think there could potentially be views expressed by health professionals suggesting that Glenn’s illness  was having an adverse and unbearable effect on his family. “Those kinds of conversations could so easily have happened with Glenn if the doctors and people around him thought only about the suffering they could see. I just can’t bear to imagine what kind of conversations could happen to a vulnerable person if others were to project their thoughts on the poor quality of someone’s life, or how their illness might be affecting their loved ones.”

Heather recalls, “Glenn was under Hospice three times, and he had outlived numerous prognoses.”

Glenn was first diagnosed in 1997. He lived to see his daughter born in 2002, five years later. When Rachel was only 18 months old Glenn was under Hospice the first time, clinically dying, saying his goodbyes, but he didn’t die. When she was three, his doctor told them that he was pretty sure that Glenn would have less than six months to live and he signed for his life insurance to be paid out. Then when Rachel was four years old he was under Hospice again, and once more a whole team of doctors assessed him as being at the end of life. The choir that he was a member of practised songs for his funeral, but he recovered and was discharged.

It wasn’t until 2011, when Rachel was nine, that Glenn finally died. The fact that Glenn lived several years longer than expected is just one of many examples showing that prognosis is not an exact science.

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When Glenn’s time finally came, he began needing more morphine. Heather was at his bedside all through the night before he died. While he had a lot of seizures, Heather also remembers having some very precious times together. The family joined her the following morning. With Heather and Rachel each holding one of Glenn’s hands, he slipped away at eleven past twelve on the eleventh of the twelfth month 2011. It was a day they will never forget, not only because of the sadness they experienced, but also because of the gratitude felt for those last moments with Glenn. Of his passing Heather said, “It was the right time. He died when he was meant to, and we were there for him.”

“It was a bittersweet journey, a rollercoaster ride. I would do it all again, and I loved him very much. I love him still, and he’s the inspiration for my daughter,” says Heather.

There are some really scary diagnoses, things you don’t want to hear a doctor say to you, but you never know how things are going to pan out. The fear which comes from hearing something scary is mostly a fear of the unknown and you can’t really make a decision that the rest of your life is not going to be worth living when you haven’t finished living it yet.
— Heather

Heather now works with people who, like Glenn, have to face challenges with both physical disabilities, chronic and terminal illness. She considers it a privilege to walk alongside those who are looking for hope in what others might see as a bleak situation. She says, “I would be incredibly nervous to see assisted suicide put on the table in our country. I work with people who have had a scary diagnosis and they are vulnerable. Lots of them have been in a state of depression and some have been suicidal. They may get depressed again. These are seasons in their lives that they can get through with support.”

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Heather fears that having assisted suicide as a legal option would make hopelessness even more prevalent in our society. When people are unwell, Heather says, we should never let them lose the hope that tomorrow might be a better day. People often don’t know where their strength is going to come from until they meet the next day.

“Euthanasia doesn’t solve anyone’s problems. In fact, for those left behind, how does it help them and what does it teach them about the value of hope? What does it teach us about the importance of connection and journeying with people until their life’s natural end? Let’s focus on dying naturally with dignity. We can look at this whole thing and choose to make it so that people can be cared for and can die well. This should be our goal moving forward.”

Rachel worries that people may not realise how a decision to have assisted suicide could affect the wider family. “If my father’s death had been through assisted suicide,” Rachel says, “knowing that it would have been a decision and not a natural process… yeah, I might have had some problems dealing with that. It’s a massive deal and it scares me to think… because it would have completely changed my life for the worse. I’m so glad that it wasn’t an option because I got nine years with Dad!”

Rachel fears that if assisted suicide is legalised, it will send a frightening message that suicide is okay.

It might not be called ‘suicide’… but at the end of the day that’s what it is. It’s the same thing.
— Rachel

Rachel is grateful for a good childhood despite everything that was happening around her. “I hardly ever noticed any of the bad stuff growing up and I’m grateful for all that Mum did to handle everything. We are super close. She inspires me a lot with how strong she is, and what she does for other people. Even after my Dad has gone, she is helping people with disabilities and she is still supporting me with my passions.” 

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Rachel says she learned so much from her Dad about staying strong and not paying attention to negativity. “Just through being himself and through living, he passed on an attitude of ‘never give up, be brave and stand up for what you believe in’.”

With the hope and strength that her father passed on to her, she is now working her way to get as far as she can in the world of football, another legacy from her father, and a constant reminder of his input in her life.

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