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13 April, 2019
In their Report on the End of Life Choice Bill, the Justice Committee has cited serious concerns about the issue of accurate prognosis. According to many submitters, any attempt to limit access to euthanasia to those likely to die within six months would be difficult, if not impossible. This is because of the very imperfect art that is prognosis.
This concern is captured perfectly in the story of Glenn Major, whose wife Heather and daughter Rachel recount his journey with terminal illness and disability, in the fifth documentary from #DefendNZ: When prognosis is wrong.
Glenn was first diagnosed with Grade 2 Oligodendroglioma, a type of brain tumour, in 1997. An infection following surgery in 2002 left him increasingly disabled. In three different years (2004, 2006 and 2007) Glenn was given a prognosis of six months or less to live, and his life insurance policy was paid out on the assumption that he would soon be dead.
But Glenn did not die until 2011.
In those years when he was “dying”, Glenn got to watch his daughter grow up. Born in 2002, Rachel still cherishes those years she had with her father. She is so glad his doctors’ many prognoses were wrong. She’s also glad euthanasia wasn’t legal because she could have lost her father when she was two, four or five years old, instead of being able to enjoy the full nine years she had with him.
This month Glenn would have turned 50, and he and Heather would have celebrated their 25th wedding anniversary. Heather, who was Glenn’s primary carer throughout his life, admits that there were tough times in their journey with terminal illness, but she certainly doesn’t regret it. “It was a bittersweet journey, a rollercoaster ride,” Heather relates. “I would do it all again, and I loved him very much.”
Accompanying Glenn’s story in the documentary are commentaries from Professor Rod MacLeod MNZM (Palliative Care Expert) and Dr Huhana Hickey MNZM (Ngāti Tahinga, Tainui, Ngai Tai, Crown Director and Consultant, Lawyer and Disability Advocate).
The documentary can be viewed at www.defendnz.co.nz/glenn
Watch this documentary in widescreen and read the complete story here.