Young, intelligent, of sound mind and dying of an incurable brain tumour, she dreaded losing her mind, her dignity, her independence and her control of bladder and bowels. She was asking for the right to choose to ask for aid in dying if her suffering became unbearable.
Specifically she wanted her GP to be able, if necessary, to give her medications that would end her suffering by ending her life, without fear of prosecution.
She wanted to be able to live her life as long and as fully as she could, secure in the knowledge that if her suffering ever became unbearable, she could ask for help to end it.
She may have failed to secure the reassurance that she sought; however what she has done is to place this important issue slap bang in front of us all, in a way that demands our attention and also demands change.
This is not a new issue, it is not restricted to NZ, it is current and important in many countries now; an issue that will not go away, until we get it right. Life is uncertain, death is inevitable, unbearable suffering at the end of a life is a possibility for each of us, not just for someone else.
I believe, as do many, that for most of us, when we are dying, good palliative care is exactly what we need, however as Judge Collins pointed out in his determination: “Palliative care cannot necessarily provide relief from suffering in all cases”. It is precisely this group we are concerned with.
It may be a small group numerically, however the suffering involved cannot be described as small. The Horizon Poll, as long ago as 2012 found that, at that time, 16.2% of adults (ie about 519,740 people) currently knew someone whose medical or mental condition was terminal, irreversible and making their life unbearable. Overall about 2.1 million of us knew or had known someone like that.
Given the real extent of the problem, understanding that the impact of a ‘bad death’ affects not just the dying person, but many people for a considerable time, that the one dying with unbearable suffering also has to witness the suffering of those who care, it seems extraordinary that we have so far failed to address it.
Currently polls consistently report that 70-80% of us recognise the problem and favour legislative change. This is true for Australia, the UK, Canada and for many states in the USA.
Such laws are in place in parts of Europe, and the USA, and being considered in many more. These laws have been studied extensively, the research is freely and widely available. The research shows that:
• The laws are working well.
• The numbers who access the legislation are small (eg in in Oregon, population 4.5 million, 2.3/1000 deaths).
• Of those who do access medication to end their life, only about half need to use it.
• A universal comment is that knowing they can end their suffering, if they need to, is an enormous comfort to the dying person and to those who love them.
• People can live longer and more fully if not fretting about what suffering might lie ahead. (**A friend of mine who was dying of motor neurone disease, voiced these feelings, while she could still speak “Dying is not the worst thing, if I could be sure about when, I could make much better use of now.”).
• Knowing that they can die peacefully with their family and friends is a comfort to the dying.
• Wherever such legislation is in place, and referral to hospice/palliative care services is mandatory, these services have markedly improved, they are better funded, access is more equitable and standards of care have risen.
I have read and discussed the data, I can find no credible evidence of slippery slopes, abuse of the elderly, disabled or other vulnerable people. Nor can I find credible data to support continuing to condone unbearable suffering.
As Dr Jack Havill, president of Voluntary Euthanasia Society of NZ, has commented, no more would die, but fewer would suffer.
I have also heard anonymous stories of deeply compassionate doctors intervening to end suffering in situations where access to palliative care has not been possible. This hit and miss reality, is in my opinion, unsafe for doctors and patients.
I accept that religious beliefs may include attitudes about the meaning of suffering which I do not share. I also understand that what usually prevents us from doing something different and/or challenging is fear. I find I agree with Dr Christiaan Barnard who famously conquered his fears to change cardiovascular surgery. He commented: “I have learned from my life in medicine, that death is not always the enemy, often it is good medicine, often it achieves what medicine cannot, it stops suffering.”
I find curious the difference between what doctors and nurses say in private and anecdotally, and the official position statements of the various organisations and governing bodies. It raises questions about whose role it is to make these decisions so that all of us can feel safe when we are dying, not just most of us.
This week in California, the State Senate has passed Compassion and Choices ‘End of Life Options Bill’ and, significantly, the Californian Medical Association has withdrawn their opposition to the bill. Several years ago now, Professor Sam Ahmedzai a palliative care specialist from the UK, whose position at the time was anti-law change, went to live in Oregon for a short time to see for himself how their legislation works. As a result he changed his stance from anti to neutral, and continues to work with doctors to help them do the same.
I remain convinced of the value of good palliative care, my working life has been concerned with the relief of pain and suffering in this context.
However, once I left the hospice I started to hear stories of truly heart-breaking deaths in other settings. One woman commented: “I would be prosecuted if I let my dog suffer the way my mother did”. I heard about people who were driven to end their own lives to avoid suffering that was unbearable to them, and which they did not want their families or friends to have to witness.
Suicides have to happen alone for fear of prosecution of anyone deemed to have helped. They have to happen before an individual loses the ability to carry out their plan; in other words, these people probably die sooner than they otherwise might. Men often use guns, leaving a distressing physical and metaphorical mess for those left behind to clear up. Women tend to choose less obvious methods preferring pills to weapons.
I do not know how many people choose this path, good stats are hard to find. A figure of 5-8% of coroners suicides is sometimes quoted. I personally know of three people who have died this way in the last few years, and others who wished they had ended their lives while they could.
Such deaths are legal, assisting is not, even though the courts here and overseas are demonstrating increasing understanding. There are several recent landmark cases where family members have admitted helping someone suffering unbearably to die, and faced imprisonment/home detention.
Ending one’s life by stopping eating and drinking, as a friend did in January this year, is also legal. Extremely intelligent, fiercely independent, aged 84, in pain which did not respond to any pain relief she could tolerate and faced with the prospect of gangrene requiring amputation of her legs, she made a well-researched, informed and unshakeable decision to end her life while she could. The nine days it took were long and challenging for all concerned.
I also hear stories about futile medical interventions, prolonging existence but not life. This issue also needs to be part of the wider debate. There is wide recognition of the amazing things that modern medicine can achieve. Sadly there is also considerable concern about the shame/blame culture that sometimes exists which encourages intervention, when this may well create unintended suffering. The fact that there are so many more ways in which we could intervene, does not always mean that we should. My borrowed daughter living in London, an experienced nurse, sees this happening in the hospitals where she works. She also comments on UK TV advertisements for law firms, asking: “Have you come to harm at the hands of your doctor or dentist? Call us, no result; no fee”….. No pressure!
We all need to write our own Advanced Directives/Advanced Care Plans so that we think the issues through, discuss with our GPs and specialists who can answer our questions and discuss with our families who need to understand what we might want when, not if, we die. The more we write /review these plans and make sure they are on our medical records with our DHB, GP, lawyer, known by friends and family, the more likely they are to be respected and act as a valuable guide for those who care for us and about us, particularly in an emergency.
I no longer work in clinical palliative care. I do, however, sometimes work with those left behind and struggling to cope with the impact of a ‘bad death’. The fallout is considerable.
I cannot believe this is the best we can do.
My hope is that Lecretia’s courageous challenge to the status quo will lead to much needed law change.
If ‘Aid in Dying’/ ‘Voluntary Euthanasia’/ Death with Dignity’/ End of Life Choice’ legislation – whatever name we choose –can work in so many other jurisdictions, why not here?
We have good models to inform our debate and then our laws and practice – Switzerland (since 1940), The Netherlands, Belgium, Luxembourg, Albania, Oregon, Montana, Washington, Vermont, Quebec, Columbia. Information from advocacy group Compassion and Choices in the USA comments that by the end of this year they hope to have laws in place or before the courts in 50% of American states.
In February this year, the Canadian Supreme Court ruled that denying terminally ill people help to end their lives breached human rights. In April a South African judge similarly held that a doctor should be allowed to help a 65 year old man dying of metastatic prostate cancer to end his suffering.
I am not suggesting that we copy any of these laws, but we can use them to draft our own, hopefully better ones. We also have previous bills to help us decide what we need.
So far in NZ, attempts to pass legislation have failed, Michael Laws’ Death with Dignity Bill in 1995, by 61:29 votes; in 2003 Peter Brown’s Death with Dignity Bill by 59:58 votes, tantalisingly close, twelve years ago, I think times and feelings have changed.
In 2012 Maryan Street put her End of Life Choice Bill in the ballot box, it was never drawn and the Labour Party pressured her to withdraw it, which she did in July 2013, before the general election in 2014. This year Iain Lees Galloway considered re-introducing this bill, but was pressured by Andrew Little not to do so.
I think this matter is too significant to consign to the uncertainty of the ballot box. It is not something to play party political games with; it is far too important. It needs consideration and good debate at Select Committee level, as well as at grass roots level, then good law making to ensure that the process for those who need it and choose it, is rigorous, safe and workable, and for those who are compassionate enough to work within it, ethically sound.
In other words, better than the current unsafe system which is risky for patients needing release from their suffering as well as the compassionate doctors and family who sometimes help them. Better than lonely premature death motivated by fear, or a death in unbearable suffering. I hope there is enough courage and compassion for this to happen.
In the meantime we all need to address these issues in any and every way we can, signing the VESNZ petition for law change, writing our Advanced Directives/Advanced Care Plans, thinking about and talking about the issues.
Dr Libby Smales CNZM, FAChPM is a retired palliative care physician. She trained at St Bartholomew’s Hospital in London. Dr Smales was Medical Director at Cranford Hospice for many years, and served as President of Hospice NZ.