Updated: Feb 13, 2020
This is Donelda Cutforth's submission to the 2018 Parliamentary Select Committee considering a law change (the "End of Life Choice Bill") that would permit euthanasia in New Zealand.
My name is Donelda Cutforth and I’ve had Motor Neurone Disease (MND) for 13 years. Up until the age of 43 I was a capable, healthy person. I’d like to make a few points about why I feel that offering euthanasia is wrong. I have formed these opinions because of my Christian beliefs and also my experiences with a chronic disease like MND.
Mistaken diagnosis. For the first 5 years of my disease it was thought I had Multiple Sclerosis which is an autoimmune disease. MND presents similarly but is a degenerative disease for which there is no diagnostic test. I had the wrong diagnosis. Such is neurological medicine sometimes. Being the last frontier in medicine, we don’t always fully understand it. At this point in my health, I was very low. It took 15 neurological specialists at Auckland Hospital to discuss my case and overturn my diagnosis. I feel very concerned that someone may be able to get as few as 3 doctors, who may not have the right degree of expertise, to confirm the diagnosis and prognosis sufficiently to allow someone to end their life.
Mistaken prognosis. MND is exactly the kind of disease for which euthanasia might be offered as they don’t know the cause and there’s no cure or treatment. It’s a disease that renders a person cognitively able in a body that won’t cooperate as messages, via nerves, don’t get through. At the low point of my disease they did all they could to alleviate my symptoms including inserting a feeding tube and I started using a breathing machine. I was sent home with 18 pills to take every day, including morphine, and told I had 6 months to a year left. At this point, had I wanted to and had the laws been different, I could have asked to euthanise myself. I think I could have easily been granted consent because of the nature of MND. However 8 years later, here I am!! That prognosis was totally wrong. If I had ended my life then, I would have missed seeing 3 of my 4 sons married, meeting my 1 year old grandson, seeing 3 of my sons turn 21 and so many other happy events with family and friends. I have reinvented myself and have been able to inspire and help people. It has been a slow and determined journey from my low point to where I am now in an environment of love and help from my husband, family, friends and the medical system. I think we should put our efforts into providing hope, help and quality palliative care.
My status as a valued person under the status quo. I’m not sure if any of you would realise just how many health professionals a person like me would be involved with in 13 years. The nature of this chronic disease affects many areas of my body. Doctors nurses, specialists, dieticians, physiotherapists, speech and occupational therapists etc. Then there’s care providers and equipment providers. I’ve already had over 30 different support workers caring for me and, with the turnover of staff in every profession, I estimate I’ve seen over 100 health professionals since becoming unwell. I’m happy that none of them have had any legal permission to think of my future in any other way than a life worth saving and that they should do all they can to make my life as good as it can be and alleviate my difficulties where possible. I know some of them may have thought that 'this lady would be better off taking her own life', but their professional focus has always been pro life up until this point. If the laws were to change I see there’s a conflict created. Am I to be considered in the category of a life worth saving or as a 'killable person?' I would completely hate seeing so many health professionals if I thought that they had in their minds euthanasia as a treatment option for me.
Euthanasia is irreversible. At the present time, with my MND, I would not be offered euthanasia but I have been in that place with a disease I still have. At my lowest point I was unable to swallow normally, skin and bone at 51kg and losing. I had breathing difficulties as well. Eating and breathing are essential functions in life. Because of the nature of MND and my struggles, the doctors were justified in their prognosis, however totally wrong. Euthanasia is a serious irreversible decision. It’s nothing like a treatment you can discontinue if it’s not making an improvement or if the side effects are too great. If a surprise cure or treatment is discovered a few months after you’ve ended your life, it’s too late.
Pressure and coercion. Fortunately for me, I have a family and friends who value my life no matter how disabled I become. Although I’m doing well now, there’s no predicting how my MND might behave in the future. Not everyone is so fortunate and I’ve heard of people overseas feeling as if they are a burden to society, family and friends and deciding to end their life against their will. There’s no satisfactory way to legislate against this kind of subtle pressure. When you have health struggles, it’s difficult enough and more than enough to cope with. If a person feels that their life is no longer precious and in a new category of 'killable people' it’s too much to bear.
The uniqueness of my situation with MND. The average NZ person who gets MND lives 27 months on average. 5% live a lot longer than that. To put some figures on that, at any one time in NZ there are about 100 people with MND. That means only about 5 are living a long time. I seem to be one of those. However some medical professionals are at a loss to explain other unique things about my MND. It would appear that I’ve improved in a disease that only ever plateaus or deteriorates. This is because nerve damage doesn’t repair. I’m the only MND patient in NZ to have had a feeding tube removed or who has stopped using a breathing machine. Recently, I was the first MND patient to have botox treatment in my leg. This is because no other MND patients are trying to learn to walk again as I am. For all I know I may not even have MND or maybe I have a rare form which hasn’t been categorised before. At the lowest point in my disease these improvements could not have been conceived or predicted.
Things learnt from the chronically ill. My experience with MND has a silver lining. You may be thinking that a mother of 4 sons in their teens, struck down with MND might not have any good outcome. However this is not our family's experience. My disease has taught our sons to be more caring and empathetic. Ordinary 'macho' teen males faced with helping care for their mum! Picking up things for me, doing housework, cooking dinners and pushing me in a wheelchair! Coming to terms with suffering and imperfection in life and thinking that my life might be cut short. My husband's example to our sons and others who observe him, is amazing. He’s a man who lives out his wedding vow promises. 'To have and to hold, from this time forth, for better or worse, in sickness and in health, till death do us part.' He's never flinched at the many facets of caring for me as I become more disabled. Our Christian faith has helped us accept that life isn’t always perfect but every life is valuable. God numbers the days that we have and it’s not our individual right to cut them short