Personal stories

Debra Hall - A good life, and a good death

All I want is a future where we can truly celebrate that our parents, our friends and, eventually, ourselves had not only a good life, but a good death.

This is my story of three undignified deaths, from my submission to the Select Committee.

This is my submission to the Parliamentary Health Select Committee, currently considering a petition to change the law in New Zealand to support ‘physician assisted suicide’, or, as I prefer to term it, giving people choices at the end of their lives.

This is a personal story – please do not read it if you think you may be upset or offended.  It is my view, and only my view, of three undignified deaths in my close family in recent years.  To other family members – I truly recognise that your experiences of these deaths are different from mine, and that you may feel that these are not my stories to tell.  Everyone involved has their own perspective – this is mine, respecting that you almost certainly have a different view, and irrespective of that, mostly importantly, celebrating that we all, each one of us, cared very deeply.

So here is my plea to the legislators – exhorting them to lead, not follow, to a better more compassionate society.

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Jim Parlane - A dog at the vet has a more dignified ending

Six months ago my mother died from cancer of the ovaries after it spread excessively. She was most likely given a de-facto euthanasia at the hospice. The death was not as comfortable or dignified as it could have been. There was no warning as to the onset as she did not have pain and was at stage 4 before she knew anything about it. Basically a drug called oxycodone was used as a pain relief then it stupefied her into a "raving looney" then she went into a stage of an unknown low level of consciousness before laboured breathing and then dying. All of this was over the space of about 12 hours. She was not able to continue on with life as her ovaries were extremely large, she could not move about, she lost her dignity over toileting and finally the pain was such that it was humane to do what was done. Generally a dog at the vet has a more dignified ending than a person does. The Hospice people did the job as best they could however they should be allowed, by law, to he honest about it.

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Geoff Simmons - My Poppa didn’t get a choice

Our society is built on the assumption that people should have freedom to choose unless there is a good reason why not. All of the reasons against assisted dying can be remedied by the appropriate process and regulation. So my simple question is why wouldn't all of New Zealand support this bill?

My Poppa was a fighter. At 67 he took me (a 1st XV rugby player) out to round up sheep. After chuckling at me getting bounced off countless times, he caught a sheep with one hand.

Twenty years later Poppa met his match – brain cancer. In the end he couldn’t tolerate it any longer, and so he refused any further assistance. He won the fight against cancer by denying himself food or water. Thanks to the opponents of assisted dying, this was the only way he could exercise some choice over how he died.

We live in a free society, where generally people have the right to choose to do whatever they want. In order to remove that freedom, the government needs a good reason. The opponents of assisted dying have offered several arguments to back up their case, but none of them are logical and evidence based. All that remains is their belief in the sanctity of life, or an arrogant belief that experiencing a natural death is good for the patient and their family. These are spiritual beliefs held by a few people, and are not good reasons to rob people like Lecretia Seales of the right to choose how they die.

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Graham R Bracey - Give euthanasia a huge tick

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John Marks - Put ownership of death into the hands of the dying

I have lost two wives to cancer.

The mother of my two children died early in 2006 . I remarried again in 2009 to the mother and grandmother of a large second family, but by December 2010 she too was dead from cancer.

I loved them both and watched them die unrecogniseable physically as the strong women and mothers they had been. Both were emaciated, delerious, debilitated and humiliated by the disease that had robbed them of life and dignity. In the final weeks both tried with little success to find ways to disguise the physical ravages which they knew would leave their children and grandchildren with haunted memories.

Both of them, at a point two or three weeks before their inevitable deaths, expressed a desire to exit the world with less discomfort, loss of dignity and without experiencing the fear, confusion, and anonymity of a slow death in front of their loved ones.

I have no doubt that both of them, given the opportunity to die with dignity some weeks before their inevitable exit would have taken it, and would have welcomed the prospect of saying goodbye to their families while coherent and conscious.

Instead they died like animals, sick, confused, wasted and sedated. When I picked up my Sonia to place her on the funeral trolly she weighed less than a medium sized dog. It struck me that had I treated a pet as the system had treated her, I would have been prosecuted for cruelty.

My wives were strong women who relished their matriarchal position in growing families and they lived by example. They liked dressing well, loved looking good and in once case would never be seen without makeup, and the certainly like to control conversation and to counsel their families with their intellect and experience. Neither wanted to die in this humiliating fashion and, most of all, once they had accepted the inevitability of their demise, they both wanted to control the time, nature and evironment of their death. In both cases they would have been appalled to think that even I had to experience the pitiful circumstances which evolved over the final days and hours.

I know both would have endorsed this submission and strongly argued for the sense of ownership and personal power that end-of-life choices would have given them.

On their behalf I appeal to our legislators to make the tough choices, put the right protections in to place to make sure that rights to die are not abused, but most of all to put ownership of death into the hands of the dying.

As a post scrip I wish add that my current mother-in-law is dying of complications of alzheimers disease at the age of 90. She is a charicature of the person she was – a woman who relished her position in society, her place as a strong mother, quality dress and makeup, and her intelligent and loving place in a her family and her community, She has been unable to recognise her love ones for over two years, went through years of panic and pain as her brain disintegrated in her head and today she lies immobile physically and mentally inert as we wait for her to die. Her daugher, my wife, lives with the sad duty of daily visiting this withered shell that was a person she loved. She knows, without a shadow of a doubt that given choice and good advice about her disease her mum would have chosen alternatives many years ago which would have spared herself the panic, confusion and suffering, saved her family the pain, and spared our community of the burden of this questionable extension of her now pathetic existence to satisfy inexplicable laws.

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Fran O'Keefe-Jones - As a very senior lady I totally applaud the End of Life Choice legislation

As a very senior lady I totally applaud the End of Life Choice legislation. For many years I have been actively involved with Voluntary Euthanasia and cannot understand why people can be so heartless as to object to the possibility of some assistance when needed. The opponents go on about Suicide. NZ Statistics do not show the number of ‘attempted suicides’ and it is my belief that many are because there is no other way out. For many of us facing the possibility of a nasty end of life, suicide is on our minds and methods sought. Get real folk don’t deny the obvious. Many of us do not want to be the statistics of total dependence/loss of dignity/totally relying on others or the Government coffers.

After being widowed and then found happiness, I lost a darling husband suddenly, a shock but a realisation that he would not have wanted to be an invalid was of some comfort over time.

I also lost a darling youngest daughter 35yo, a precious person I must add. She suffered for almost 12 months during which time we read and sought information to help the situation, but had to watch the slow decline of the inevitable. She left a bereft husband and one daughter just starting college, not to mention her Mum, family and friends. To watch a loved one suffer at length is cruel and certainly leaves its scars on those left behind.

I believe because NZ statistics of ‘attempted suicide’ are not shown, the community would be shocked at how many make the effort to end their lives because of the dreaded ugly end. Surely the legislation being sought would eliminate suicides to a degree. I am appalled at the opposition of some churches, and can only hope and pray there will be help when my time comes.

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My father would have been spared a great deal of suffering

Submitted to the Health Select Committee by Rosie:

I wish to support the inquiry into public attitudes towards the introduction of legislation which would permit medically assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable. 

I wish the committee to consider recommending a change to the existing law.

I hereby formally request that the committee recommend that Parliament grant me the legal right to medically assisted dying if I am diagnosed as terminally ill or suffering an irreversible condition which makes life unbearable and this diagnosis is supported by two qualified doctors.

I wish to state that I may choose not to exercise this right to medically assisted dying but I believe that it is an important human right to have this choice and not be forced to live longer than I would choose to because of other people’s choices and decisions.

I believe that it is inhumane to force someone to consider suicide as an option when they would prefer to die by medically assisted euthanasia.

I have personal experience of this dilemma and have faced making this very difficult decision both for myself and for family members.

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Letter to the Taranaki Daily News

I understand that MP David Seymour intends to bring a bill before parliament this year on the controversial subject of euthanasia.

There is rarely sufficient intelligent comment from the public about this issue, as only a minority of families are immediately involved. I am one of the older brigade and spent four years overseas during the war, during which time I learnt to smoke cigarettes provided by my country. Close to 95 years old, I now suffer from emphysema and an ever diminishing supply of breath, I have ulcers in my joints, fluid in my legs, probably bowel cancer, a hernia, some gout and septic arthritis. I also wear a catheter. While the medical profession is doing an admirable job of keeping me alive, my own is mostly spent coping with various health issues. I am in full support of David and his euthanasia bill. I trust that many other families, MPs and their constituents will carefully consider the euthanasia bill and support David in his quest to give sufferers a choice, with sufficient legal protection for all concerned.

Name withheld

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Don Brash - So much kinder to allow choice

I strongly support David Seymour’s End of Life Choice Bill, and were I still a Member of Parliament I would vote for it if given the opportunity, as I did the similar Bill in the name of Peter Brown when I was in Parliament.

Several years ago, I had a very dear friend who was suffering from severe abdominal pain. She had previously had bowel cancer and it was assumed that that had returned, though repeated hospital visits failed to detect the exact location of the cancer. She was in so much pain that she seriously considered going to Switzerland to get assistance to die. But by the time she made that decision, she wasn’t well enough to fly. Towards the very end, she told me that she had bad news and good news. The bad news, she said, was that her kidneys had failed. The good news, she said, was that her kidneys had failed – which meant that she would die quite quickly. Towards the very end, she was willing herself to die. It would have been so much kinder to have allowed her some choice in the timing.

A few months ago, I read “Being Mortal”, by Dr Atul Gawande, a prominent US surgeon. The book has become an international bestseller. In it he writes: “Suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it.”

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Submitted Story - Good death and bad death

I wonder, frequently, about the contact that those who campaign against the concept of assisted dying have had with loved ones going through an elongated and and traumatic end of life. Euthanasia is literally translated as “Good Death”. The obvious opposite is a “Bad Death”.

Let me tell you about a bad death.

My mother was diagnosed with Breast Cancer. A Partial Mastectomy and Radiotherapy followed with good results, and she was able to continue on as before. However, the cancer returned, and in a far more aggressive state. Having become far more malignant, it spread from her Breast, to her bones. Specifically her spine. Then her Brain.

She had expressed a desire, during a more lucid moment, to go for a walk and go and step in front of a bus. All that was left was the promise of diminishing mental function, disorientation, full time hospital care, and wasting away over a period until such time as she could take no more.

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Submitted Story - Between life and death

Thank you for your effort behind this bill, and good luck getting this through parliament. My father recently passed away, luckily quite quickly, but could have quite easily been one of the many bed ridden/brain damaged stroke victims hanging on between life and death. How many, given the choice, would like to end the suffering? Given the option, my father definitely.

I think we owe it to all concerned to have clear legal guidance, and give people in this situation the power to choose the time to go.

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Submitted Story - My parents never wanted their lives prolonged

My parents were always very open about the fact that they never wanted their lives prolonged. They believed they had lived a good life, they had travelled extensively and always been very active and so they asked for my assurance that I would support their decision and not allow any medical intervention, when their end was near.

Three years ago I learnt my mother had dementia. My father had hid the severity of this from family for a few years and had looked after her until he was no longer getting any sleep and as a 87 year old, was physically exhausted. My mum no longer recognised him or any family but alongside this, her form of dementia meant that she was extremely agitated, depressed, angry and violent. So she went into fulltime care.

Every week we would get phone calls because she was either being violent towards other people in the home or she was having falls. We were told that probably what would happen is that eventually she would have a fall that would kill her. My father found this very distressing. He had been married for 40 years and his wife that he loved dearly was now angry and aggressive to him and no longer knew him. He found it very difficult to visit her and then, if he didn’t, he was filled with intense guilt. And so he took himself to bed, stopped eating and in effect committed suicide and I lost a wonderful man from my life.

But my mother still lives – well to be fair, “lives” only in that her heart beats. She broke her hip badly from a fall a year ago, which means she is bed ridden and so she no longer abuses other residents. But she has no visitors as her anger and agitation is too distressing and alongside this visitors make it worse which makes it even harder for staff to manage her.

I know my mother would be distraught to know that she was being kept alive (she can not feed herself and so is fed by staff). I know she would also be distraught to think how much tax payer money is spent every month, keeping her alive, when she has no quality of life, no life. And so, because I lost the wrong parent, I strongly support this Bill.

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Kathleen Gardner – A perspective from a former hospice nurse

I have been a hospice nurse.  There are some patients who require terminal sedation to control symptoms.  This means essentially 'knocking them out' with sedating medication until they die.  I struggle to understand why this is different to an assisted death. Palliative care physicians say that the intention is to relieve symptoms, not to hasten death, but the outcome is the same.

I have watched family members and friends die prolonged, miserable deaths.  Some people argue that hastening a death for the sake of the relatives' comfort is wrong or selfish.  I do not share this opinion.  My last memory of my mother is of a tortured and decomposing body, unconscious and gasping for air.  That is not how I want my loved ones to remember me or anyone else.

I also feel strongly that in our predominantly secular society, our laws should not be guided by the religious views of the minority.  I fully support their right to choose a dying process congruent with their beliefs.

The 'slippery slope' argument against assisted dying has not been seen in any of the countries/states who have assisted dying.

I have written to many MPs to express my support for your Bill.  The majority of the public wants this choice.  Maybe this time NZ will follow the other countries/states in the world who are acting compassionately.

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Dr R J M Gardner writes in support

I wish to support this bill going to Parliament. I write as someone who has himself an advance directive, having the purpose to avoid intrusive medical intervention in the event of becoming mentally incompetent. My particular focus is the desire to avoid ever being in a position of loss of dignity and/or loss of mental competence (such as, for example, of one suffering from Alzheimer's disease). "One is one's brain."

I also write as the person responsible for having invited Prof Aad Tibben, of Leyden, to address a session at the 2013 conference of the Human Genetics Society of Australasia in Queenstown, on the topic of physician-assisted suicide for those with Huntington's disease (available in the Netherlands); Maryan Street was also a speaker on that occasion.

And I write as someone who took part in a debate "That this class supports the concept of physician-assisted suicide", as a speaker for the affirmative, at a reunion of my med school graduating class at Waitangi, a few years ago.

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Submitted Story - My grandmother’s cruel and undignified death

I strongly believe that people have a right to decide how and when they die under certain circumstances and with appropriate safeguards. My belief has evolved after watching my grandmother die a cruel and undignified death and, this year, as a result of my mother taking her own life when she feared it was going to become intolerable.

During the English summer of 1976, one of the hottest on record, my family watched the slow, unbearable death of my maternal grandmother.

In March she suffered three strokes within one week, the third rendering her paralysed down her right hand side, unable to walk, talk clearly and doubly incontinent. We were unable to provide nursing care at home for her and, reluctantly, moved her to a nursing home.

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Dame Jenny Gibbs on End of Life Choice

I have carefully read the draft End of Life Choice Bill & totally endorse the aims of the bill. It is long overdue that people in New Zealand who are suffering a terminal illness or an unendurable condition should have this option available. I have personal experience of the unnecessary anguish caused to people in an unendurable situation, who beg for help but have none available. I watched my mother die of cancer. When she was in hospital she watched the clock anxiously waiting for the 4 hourly morphine. Inevitably as the hour approached she felt very considerable pain & extreme anxiety. She discharged herself & came home to stay with us. A very sympathetic doctor, way ahead of his time, left a large bottle of liquid morphine beside her bed to use as & when she needed to. The change was extraordinary. Because she had the peace of mind knowing that it was within her control, she relaxed & was happy & felt very little pain & very little need for the morphine until the end. It changed the views of all our family. Similarly I have been privileged to observe the peace of mind & alleviation of symptoms & anxiety in others, created when a person feels that they do have this option, whether or not they choose to use it. There is no credible evidence from overseas where end of life choice is available, that any coercion or pressure has been evident.

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Matt Vickers – A press conference statement (5 June)

This statement from Matt Vickers has been copied with permission from Lecretia.org.

Thank you for coming today.

I wish it were Lecretia here today talking to you instead of me. Her fine legal mind would do a better job of interpreting Justice Collins’ judgment for you, and explaining his ruling. Her natural tact and grace would be better suited to delivering her feelings on the ruling. No matter how strong her view one way or the other, she would approach it in an understated way and with humility. But most of all, I wish Lecretia were here today talking to you because it would mean she was still alive. She died too young. She is hugely missed already and her family and friends feel an unbearable loss. She was a treasured wife, sister, daughter, aunt, and friend. She was an incredible lawyer, and an incredible person. We will miss her terribly.

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Lecretia Seales – in her own words

From an affidavit written by Lecretia Seales:

For the moment I will continue living my life every day as best I can. Despite my current disabilities and problems I do treasure every day and have no present desire to end my life. I do not lack courage. If my death is manageable I should be the one to manage it. But I cannot rule out that it will be unbearable even with palliative care. [Ms Seales’ principal oncologist] acknowledges that, for many of my symptoms, palliative care will have minimal effect. This would include the loss of physical or mental capacity, being unable to swallow and the loss of the ability to communicate. While I understand that pain can usually be managed, there can be no guarantees that pain relief will address all pain. If pain relief is required in high doses, I am concerned that it could impact on my awareness of myself and my loved ones.

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Brian Edwards on End of Life Choice

Media commentator Brian Edwards writes:

I have been an advocate for a change to the New Zealand law on assisted suicide more or less since my arrival in this country half a century ago. It is an issue about which I feel extremely strongly and my advocacy has not always been temperate or tolerant of those who oppose such a change. What has not changed in those 50 years is my conviction that in a civilised society it ought not to be a proper function of the law to deny those whose suffering has made their lives intolerable to them the right to end their lives in dignity and comfort.

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Rodney Hide - A compassionate death

Rodney Hide on the death of Martin Hames:

Martin's mother had died of Huntington's disease. Her truly dreadful death took years. In the final stages of Huntington's the mind loses its ability to control even the simplest movements - even swallowing is difficult and many sufferers die choking. So, at 19 years old, Martin learned he had a 50 per cent chance of suffering the disease. He decided not to marry. Or have children. The risk was too great. And in his 40th year he got the fateful diagnosis.

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