End of Life Choices
LFF Founder
“We’ll do everything we can to help your mother die with dignity.” This was the promise made and kept by a doctor who confirmed that she was terminally ill with cancer. She died three weeks later, lucid and relatively pain free to the end, in what I have always considered to be a ‘good death.’
That was over thirty years ago and it has become my blueprint for how I would personally choose to shuffle off my mortal coil. The elements that made her passing so positive were fairly simple. She had time to make her farewells, she had time to tidy up some practical loose ends, she was in a clean, comfortable place with people who loved her and she was given a syringe driver of morphine with which to control the pain. She also knew that death was imminent and we allowed her space to talk about that fact. But how many of us will experience such a dignified end?
I hope I have in no way upset or offended you with this reminiscence. It’s such a hugely personal subject, but end of life care is one that I would very much like to see openly discussed and debated in order to reach consensus on what constitutes ‘a good death’ in order to help as many people as possible to achieve it.
However it also opens up a massive, contentious and potentially painful can of worms, encompassing notions of assisted dying and euthanasia. So I thought I’d share with you some of the pros and cons and also look at the approach in some of the ten countries in the world that currently have a legal framework to support choice at the end of life. In the USA, eight states also allow assisted dying. France may soon become the eleventh country to change their current law. Macron has instituted a nine-month consultation (reporting in March 2023) via citizen’s assemblies, assisted by various experts, in order to decide whether a majority of people there are in favour of a more liberal regime.
Some clarification is needed before I share the pros and cons of the different approaches. Assisted Dying means that someone helps you to end your life, but does not administer the fatal injection (or pills). Euthanasia means that a doctor can legally administer the necessary drug to end your life as long as various safeguards are in place. Neither is currently legal in the UK. If it is proven that you assisted someone to end their life, the penalty here is up to 14 years in prison. Euthanasia, whether voluntary (dying person asks for help) or involuntary (dying person is in a coma), is treated as either manslaughter or murder in law, with penalties meted out accordingly. So, what are the pros and cons of liberalisation?
The Case for Liberalising the Law
1 - The principal argument for allowing either assisted dying or euthanasia is that we be given a pragmatic and rational choice over the manner/moment of our end. It would give us security to know that we can have a level of control to plan and experience a ‘good death’.
2 - If we have decided that we no longer wish to live but need help to end our lives, we currently risk criminalising either a loved one or a professional who facilitates it for us. This is intolerable for many and would no longer be the case if the law changed.
3 - People who have no quality of life because they are experiencing ‘unbearable suffering’ as a result of disease, injury or disability can put an end to their suffering.
5 - We would allow more people the chance that my mother had of dying with dignity, perhaps at home or in a hospice rather than a hospital.
The Argument Against
1 - Life is sacred and God-given. It is not ours to end at will but is subject to the laws of nature.
2 - Both assisted dying and euthanasia impose a terrible and upsetting burden on the person/people who would help us to hasten our end.
3 - Doctors and other medical professionals are trained exclusively to prolong or save life. Do they become more like vets who are trained to help animals both to heal and, as necessary, to die?
4 - Legalising both assisted death and euthanasia may be just the start. How do we protect the rights of people in a society with dementia, disabilities, or who are ‘of no value’ to society (i.e the very old) whom some may deem a burden on that society?
5 - In systems with expensive health care, bankruptcy often looms with expensive drugs which may prolong life but not cure the disease (i.e chemo/radiotherapy for cancer). Long term care of older people with dementia or other chronic disease is expensive. Would such laws make an economic case and thereby increase pressure to end lives to save money?
I hope I have represented at least some of the pros and cons of the argument in a reasonably balanced way. I can honestly see both sides and feel strongly that any change in the law would need some very important safeguards to be confident that the person seeking to end their life was not vulnerable to unscrupulous actions whether by relatives, the medical profession or by the state.
These are profound and important questions, so what is the experience in some of those places that allow an element of choice at the end of life?
My research shows a considerable disparity in what is allowed between the more conservative and the most liberal, so I will describe the experience in Oregon, which is at the conservative end of the spectrum, in Switzerland which is somewhere in the middle, and the Netherlands which is the most progressive.
Oregon USA
Oregon was the first of 10 states to liberalise the law, but in a very restricted manner. There it’s called Dignity in Dying rather than Assisted Dying, and is only available to those who are known to be terminally ill. The idea is to ‘validate the whole person’ by giving them the possibility to end their lives in the final stages of their disease at a moment and manner of their choosing. This is facilitated by a doctor who can issue an open-ended prescription for medication which will end life. The doctor does not need to be present, and if someone assists you they will not be prosecuted. The main arguments against this system is that it may put vulnerable people at risk of pressure to end their lives before they are ready to do so.
Switzerland
Assisted dying (but not euthanasia) has been legal in Switzerland since 1942. Article 115 of the Penal Code states that there is no crime if you help someone to die as long as there is no personal gain to the person from doing so. On average just under 2000 Swiss people a year (in a population of nearly 9m) seek to end their lives this way and do so mostly at home. However, Switzerland has become famous for its Dignitas clinic which accepts people from all over the world. Every 8 days someone travels to Dignitas from the UK (around 45 a year) and no-one has ever been prosecuted here for accompanying a relative to Switzerland to end their life. Dignitas insists on various safeguards according to Swiss law, and you are provided with the self-administered means to end your own life.
The Netherlands
Well known as a population with progressive attitudes, the Netherlands allows both assisted suicide and euthanasia and is probably the country where euthanasia is most normalized. Safeguards include the provisions that the patient must request it, that there is unbearable suffering, that there is no reasonable alternative, that a second medical opinion must be sought and that the correct medicine must be dispensed. Last year over 6000 people died this way (pop: 17.5m) and the numbers are rising year on year. Liberalisation is continuing with discussions now to allow healthy over 75 year olds who feel that they have ‘completed their lives’ to seek euthanasia, thereby doing away with the need to prove unbearable suffering. And all age restrictions are set to be dropped so that the parents of children under 12 can also seek euthanasia for babies with life-limiting conditions.
Many think that the Netherlands shows the way that the liberalisation of the law inevitably creates a ‘slippery slope’. Since it was allowed in 2002, euthanasia has become both normalised, commonplace and sought every year by more and more people. Many would say that, with proper protections and safeguards, that’s the way forward, whilst others would say that asking doctors to terminate the life of someone who may have several more years of life before them goes against everything they were trained to do.
I hope this hasn’t put you off your cornflakes. It’s a hugely contentious and very sensitive subject and I would love to hear your thoughts and any good or bad practice that you have experienced for end of life care. I was extremely lucky with my mum, but a good friend had a distressing time when an ambulance was called to her 96 year old mother with pneumonia. Her mother had signed an ‘Advanced Decision', counter-signed by two doctors, stating that she no longer wanted any treatment to prolong her life. The young paramedic who arrived would not accept this lawful and valid DNR (Do Not Resuscitate) and insisted that she be taken to hospital “or she would die”. My friend (greatly distressed) asked her neighbour, a retired matron with years of experience working in a hospice, to come and help her, and they eventually managed to persuade the paramedic that the DNR was a signed, legal document which set out her mother’s wishes. The old lady died three days later at home with my friend at her side. The doctor recorded the cause of death as ‘old age’.
As Benjamin Franklin said no-one can avoid either ‘death or taxes’, but maybe with intelligence and sensitivity we can agree that consensual assisted dying and even euthanasia, especially for terminal illness, can have a place in a civilised society, and that the principle of death at a time of one’s choosing can be part of a framework of loving end of life care.
What are your thoughts?
Please leave a comment down below!
Tricia x
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What Do You Think?
Comments 104
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15 Mar 2023
A very difficult subject, but one close to my heart. My daughters think because I am so healthy and active, walk 6/7 miles, play golf etc. at 82 that I will live to a 100. This I would not be able to stand. I am content at the moment but only because I am healthy. However, the thought of going on another 15 years fills me with horror. Not for me is a nursing home. I want to be in control of my life and I do not see why it is improper to want to be in charge of how and when I do consider it time to go. There are far too many people on the planet as David Attenborough tells us and as long as I do it with dignity surely loved ones would understand.
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7 Mar 2023
Thank you, Tricia, for writing this blog, and indeed, for so many of your thoughtful blogs. (What other makeup company does this?) The day I received this blog in my In-Box, a dear friend, aged 90, had just died. For the past year, she had been "chair-bound," essentially unable to move from her special medical chair except to use the bathroom. Living far away, I was overjoyed to visit her last summer, and true to form, she was engaging, gracious, humorous, conversational, telling me some of her favorite jokes. I left her thinking, "I want to be like her, as I face death and dying with such wit, charm, and goodness." I look at public figures I've admired and see how they faced death: Popes John Paul II and Benedict XVI, Prince Phillip, and Queen Elizabeth. I am so grateful for their compelling witness of how to face the demanding later years, teaching me a bit about how to face them. I would have been shocked and saddened had I learned that any of them chose either assisted dying or euthanasia, since each of them represented courage to me: courage in duty, in living, in doing the right thing. As a Catholic, I believe in "redemptive suffering," the idea that I can unite any pain or suffering or difficulty with the sufferings of Jesus on the Cross and offer it for the good of others (my children, a lot!). I believe life here is like a pregnancy, and the REAL life will be eternity, which we'll enter death, the "re-birth". I love life, and I truly believe that with death, "life is changed, not ended".
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3 Feb 2023
Thank you for this article, Tricia, and for raising such an important, sensitive topic. Like you, I can see both sides of the argument and am also concerned that some people may put themselves under pressure to make a decision to end their lives, not because life is intolerable but through not wanting to be a burden, be it financial or emotional, to their loved ones. A couple of things we can all do now is to ensure we have LPAs in place, as one contributor has mentioned, and also that we have, in discussion with our GP, drawn up an Advance Directive (sometimes known as a Living Will). My mother did this, naming me as her patient representative, and I found it enormously helpful when having to make difficult decisions about her treatment and care once she was no longer able to do so for herself - it was such a relief and comfort to know for sure that I was following her wishes.
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3 Feb 2023
Life is God-given - if you believe in God. I have long thought that individuals should be allowed to make a legally-binding statement of their wishes for euthanasia if they are worried about being kept alive against their wishes. Having said that, I can see the possibility of misuse.
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1 Feb 2023
I think when the NHS is so stretched we must find better ways to care and support terminally ill people as my friend had an awful end because there was no hospice space or charity support at home and was left to be cared for by family who were so distressed. This was years ago but it has never left me and we are facing so much now without NHS or charity support. I would have understood and supported if they had chosen to end their suffering. I think choice is important but with safeguards to ensure no one is pressurised.