Guest Article: On Assisted Dying

Dr Ros Taylor DL MBE, Hospice Director at The Hospice of St Francis in Berkhamsted shares her views on Assisted Dying; challenges our natural fear of suffering and sheds light on modern palliative care.

Never ever has death been on our minds more. Every tabloid, broadsheet and café conversation is talking about whether we should legalise the right for one person to assist in the death of another; to write a prescription for a lethal dose to end someone’s life. As Professor Rob George has said…there is intention behind a prescription. If I write a prescription for antibiotics, I intend to treat an infection. If I write a prescription for poison, I intend to kill my patient, a person. This is a massive shift for man, medicine and the British people.

Baroness Campbell, who is severely disabled and has been told five times in her life that she is close to death, wants to trust that her doctors and nurses will never think that death is the best option for her. This made me think – how can others, two doctors, a court, a Lord, a politician ever know that death is in someone’s best interest. A strange idea that we can ever “know” that non-existence is better than existence.

What I do know, however, from caring for thousands who have lived with a terminal prognosis, is that the limits of mortality do give focus to life. The largely untold stories in recent weeks are the stories from those who work in hospice care, stories heard on a daily basis.

We see that most physical symptoms can be alleviated and we don’t see people screaming in pain. We don’t see the “grotesque suffering” that Professor Raymond Tallis talks of. We don’t see overdoses. We don’t see people impatient for life to end.

We do see sadness and grief at leaving life but most of all we see people striving to live another day and welcoming refreshing conversations about what is still possible, what lifts their spirit. We see new connections. We see suffering borne and shared and owned. We see suffering come and go.

We do have many conversations about death . . . what will it be like, can we speed it up, can we slow it down – but these usually lead into a richer dialogue about past life and future possibilities.  They are a trigger for attention rather than a practical request to die.  Often I have asked patients if I had a button that they could press there and then – would they want to do so now – the inevitable response is let’s wait and see what tomorrow brings.

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So again, Baroness Campbell says “Suffering isn’t a permanent state” and she is one who would know. We see moods change, outlooks swing from despair to joy on a daily basis. Dr Annabel Price has researched the desire for hastened death. Her research with terminally ill patients has shown significant levels of treatable depression and a changing attitude to death over several weeks. I remember a man earlier this year who was lonely, had cancer and had tried to end his life. He came into the hospice, we engaged our local psychiatrists, his mood lifted, he left the hospice, he wrote poetry, he laughed again and died peacefully with family at his bedside three months later. This was a healing outcome for his daughters who live on with this story.

And of course, just recently, we have been debating whether everyone needs a conversation about whether to restart their heart once it has stopped! To try and shock people back to life when their organs are failing from disease and frailty. To shock them back to that same life?

Archbishop Tutu talked of Nelson Mandela’s needless suffering in his final months and we remembered that great man on Mandela Day. This was about extending life artificially with ventilators and technology. This may have been what Mandela wanted, just as Baroness Campbell wishes her life to be extended by medicine. We have that choice now; and what’s important and seems to be misunderstood by Lord Carey and Archbishop Tutu, is that we all have a choice not to have our lives extended or for treatment to stop. Laws don’t need to change. Doctors need to share decisions more thoughtfully with patients about all they can do – but don’t have to do. As Professor David Roy said back in 1988, it should be possible to die “without a frantic technical fuss and bother to squeeze out a few more moments of biological life”.

So we all need to consider whether we would want our lives prolonged in certain circumstances. We can already make those choices, and record them, but few of us do.

So the thinking has become muddled. Extending life is not the same as deliberately shortening life. Compassion and cruelty have been used to describe the same scenarios. Dignity has been debated and is seen through multiple windows on both sides of the debate. Autonomy and the right to self-determination is a powerful theme, but which of us ever make decisions that are not influenced by others, or have an impact on others. I don’t.

Autonomy has been described as a relational concept and this is what I see every day. When I talk to dying people their prime concerns are rarely for themselves, but for those close to them. We are good at influencing people in their decisions, particularly when they are in pain or sad. If assisted suicide is legalised, this influencing will include an option to die, which many might consider that it is their duty to take.

Evidence for Oregon and Washington is that ‘feeling a burden’ is a prime reason that people want to end their lives. Surely the response to this sense of burden is to unravel it and discover ways to make our communities kinder, safer and more connected…not to pass a law to kill each other.

So I am really interested in this vast space between needlessly prolonging life through too much medical intervention and ending people’s lives deliberately; the space between longing for immortality and an impatience to die.

This space is currently filled with bad and sad stories of poor care and loss of trust. This space is filled with millions of people.

This space should and could be about living confidently and living well with a terminal illness and making the most of life. This is an agenda that has been lost from recent thinking.  Is this debate underpinned by a terror of illness and a lack of care. Is this about misunderstanding what palliative care can offer. We do not recognise the “doped haze” of palliative care that Lord Lester talks of. We see people back at work, travelling, singing and dancing on the right doses of pain relief. Or is it simply that death has become a commodity now that we want to control in terms of time, place and style. 21st century “cool”.

People talk about “safety within hospice care” – not just in our building but also at home.  When one tries to understand that feeling of safety – it is about knowing people are on the end of a phone, that they will listen to your deepest and darkest fears and that they will know how to help your pain, your nausea, and support those who matter to you. Again as David Roy says we should be able to die “in the presence of people who know how to drop the professional role mask and relate to others simply and richly as a human being”.

I was surprised this week to receive an amazing donation from the son of a man who received just 24 hours of care in our hospice. I asked him what had prompted the donation. I quote from his letter: “In the weeks before his death, my father was admitted to several hospitals all of which seemed keener to discharge him than to address the fundamental issues. What I found so surprising was the reluctance of numerous physicians to engage with us regarding his imminent death. It was such a refreshing change to meet the hospice staff who managed to combine an ability to face up to reality with a deeply caring attitude.”

This approach needs investment, education and support for all our healthcare professionals, not just those in palliative care. The recent document released by the Department of Health, One Chance to Get it Right, suggests a more personal approach to care of the dying. This is our hope. I don’t want donations on the basis of poor care elsewhere.

The holistic nature of our care, the presence, the confidence to bear witness to all suffering is what underpins hospice care.  To introduce “death on demand” as an option seems to be a tragic and unnecessary development.

However, recent evaluation shows that our hospice only reaches less than 30% of those who are dying. We can’t afford to reach that other 70%. They don’t all need us, but many more do. And even the care of this minority is mainly funded by selling second-hand clothes, running marathons and abseiling down tall buildings. The UK is now the only European country where palliative care and hospice care is predominantly funded by charity, by our community, not by government.

Palliative care as a recognised approach to suffering began in the UK. The community hugely values this approach. The public donate £500 million pounds to hospices and 100,000 people volunteer. Surely this is a sign that people deeply care about a safe, holistic and attentive approach to care, as defined by hospice care. This approach needs to be mainstream and funded properly. This is what our politicians should be debating…better care for 500,000 people who die in the UK every year, not the killing of 1,000. The response to poor care and fear should be more universal access to better and trusted care, in hospice, in our hospital and at home. If this was the case, I wonder if we would still be hearing those stories of suffering that have dominated the airwaves in recent months.

So it is hard to understand how death has moved from something that has been happening to humans for 200,000 years in communities, to being an optional medical condition being debated in the House of Lords! Laws need to protect us all, not the determined few. And we all die.

The response to this crisis of confidence in the face of death should not be a law to permit the intentional ending of life, but investment and support in communities, in connection, in general practice, in hospice…as we really do only have ‘one chance’ to get it right.

Dr Ros Taylor DL MBE, Hospice Director at The Hospice of St Francis in Berkhamsted

 

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21 Comments. Leave new

More interesting things to think about in this one.

I have a friend who has a pacemaker and something that restarts his heart if it stops – it has saved his life a couple of times.

However I have also heard about a old man in a rest home who had one fitted and it prevented him from dying peacefully – every time he passed away it jolted him back to life until its batteries had run out ( it was very unpleasant for him and his family. )

I know that one day it will be my time to go and I hope I am able to slip away peacefully and with some dignity.

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An excellent, well structured and thought provoking article. Really need to get stuff like this into the wider debate on end of life care and improve public understanding of what hospice care is and does.

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Wow, Eamonn, how wonderful to have Ros as part of your team! I bet pizza comes into the St Francis Hospice. And, hopefully, pet cats, dogs and all sorts . When i read this article I just about jumped for joy. Don’t try it; you have to concentrate on breathing today. :) Ros’s ‘healing when cure is not possible’ approach’ is comforting, hope-filled and above all connected to what is real. Her approach needs to be the foundation on which palliative care and hospice support is taught to all nurses and medical students. How about a crash course in ‘connecting’ for all oncologists …and those we elect to government to ensure funding for Palliative Care. Expect miracles? Why not!

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Thank you Catherine ..agree there is a desperate need for more funding for palliative care …and glad the words about healing hit home! Yes pizza ice cream alcohol and all sorts of pets are welcome at St Francis and sometimes stay the night! One of our patients Skyped her dog last week as he is being looked after far away! Ros PS what’s your background …and are you on Twitter ?..I am @hospicedoctor where we have been sharing Eamonns fab blog

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Ros, thanks so much for writing this and allowing me to share it on the site. It has raised many quandaries for me personally, and I am going to give them some real consideration before responding fully (and I think we all know what Eamonn means when he says fully!)

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What a great and comforting article Eamonn.
I just wished it was the other way round – that at least 70% of the dying would be able to access hospice care. It’s difficult to know that medical care can be provided but compassion being part of this often seems to come down to luck and circumstances. As a society we don’t get it right yet for the majority of people. Not even for those big big moments like birth and death… and not to mention all the bits in between.
In this sense I can understand the call for assisted dying – at least it gives a dying person some ‘control’ over the end of ones life. If I could choose between a hospice, assisted dying and the possibility of feeling scared and abandoned in a hospital on my own I’d rather chose between the three options instead of just two?

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Hi Eamonn, Really enjoyed this guest article by Ros Taylor and wish we had someone like her to run the hospices in Scotland. Yes, everyone is nice, everyone is friendly but a lot of people working in hospices here are volunteers because the government don’t contribute to their upkeep. With the best will in the world, they really don’t know how we feel when they try to have a “meaningful” conversation and I’m not going to upset them for the world, as they are doing their best to help.
I think the government in this country (UK) send so much money out of the country to help others, they have forgotten charity should begin at home and then when our country is taken care of properly, then yes, help anywhere else that needs it!
That’s me off my soapbox now! Lol! Hope you are doing OK! Love Annette x

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Russell Sheen
July 27, 2014 10:38 PM

Hi Eamon, what a great article. One with which I fully agree. It isn’t fair to expect Doctors who have spent all the years training to heal people to expect them to think or act otherwise. Admittedly there are going to be times when the person having the pain and poor quality of life will feel that an animal has it better by being able to be put out of its misery. These people should also have that choice, but it is up to the individual doctors own ethics wether they want to participate in this voluntary euthanasia. It may sound like I am straddling the fence, I’m not like the lady says we need to educate the government, doctors and hospitals to the benefits of good hospice and palliative care, but next to that we must respect the rights of the individual. As i have said to the wife before no resuss for me if I flatline just switch the monitor off and on again at the wall socket I may reset myself. Bless you mate you are doing a good job, wish I was as smart and wordy as yourself. xx

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Eamonn, thanks to you for hosting this thought-provoking essay, and to Dr Ros Taylor for expressing so eloquently a stance that until I read the essay, I was opposed to. And this from someone who, if not with a terminal diagnosis, is at least incurable, so I’m thinking a lot about the topic of assisted dying, and of how and where I’d like to die when my time comes. Single-handedly, Dr Taylor has completely changed my viewpoint. Until reading this, I had been in favour of changing the law, but now she has reassured me that the law is adequate as it stands, and that it’s our attitude to death and our investment in palliative care that need to change, I no longer think that way. If only we could all be sure that we would be able to end our lives in a hospice, and in one as caring as St Francis! I was so heartened to read of how they had helped you with pain management, Eamonn. I hope they’re all like that. I haven’t visited my local hospice yet, though I raise money for them. Maybe I should pay them a visit and perhaps volunteer there – that would be something to do with my remaining time, wouldn’t it?

Many thanks again to both of you.

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John Martin
July 28, 2014 8:27 PM

Good to hear the word DIGNITY speaking Lfe and Death

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Hi Eamonn, I have come across an interesting website http://www.TheConverstaionProject.org. To some extent it offers hope for some sort of ‘control’ – whatever that means! Perhaps the nearest word is John’s – “Dignity”. However, what does “dignity” need to capture. Mine (I’m an old PC nurse) would include palliative care based pain management at home, in an acute hospital or a hospice, respiratory symptom management, support for my family, minimum tech invasion, and a 24 hr syringe driver unobtrusively delivering the medications that I might need. Yes, it can happen – if we know what to ask for! Here in Melbourne there is a small movement called “Death Cafe” Here people get a chance to sit around and chat about their fears, needs and possibilities. It certainly isn’t about euthanasia, though I’m sure that is included in conversations. It is one move to open up this complicated subject of facing and moving through the process we all face.

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Like all have said a very interesting and thought provoking article, thank you both both for writing and posting it! It has certainly prompted some interesting conversation in our household. I too had not appreciated the possibility that pain and suffering can be managed and a peaceful death achieved.

Fairly recent high profile cases have centered around an individual’s right to choose what they would like to do with their life. These people are reported to have reached a point in their lives where they no longer wish to live. I do not know whether palliative care has been an option for them? All requests for termination have been denied.

I have been lucky enough to have lived a very full 47 years and hope for a few more. I would like to think that when I reach the end of my road I will have all the options presented and available to me. I have done quite well so far I would like to be in a position to make my own informed rational decision. My life is my own, and no-one else’s. No one has the right to tell me what I can or cannot do with what is mine. I may well choose palliative care, but if I thought that my best option was to live no more I would be more than annoyed if that option were denied me.

the Land Rover slogan is “one life, live it”. I’d like to think “it’s my life, please leave me to it”

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Hi Ros,

Thank you for posting such a well written, thoughtful piece. This is what the website was always designed to be; great articles that inspired significant responses. I hope you don’t mind the length of my reply (and that I refer to you in the third person throughout!)

Soon after I was diagnosed with pleural mesothelioma and given a prognosis of eleven months, I sat in the office of my CEO. My colleagues have been hugely supportive throughout my illness, and have continued to treat me as part of the corporate family, even though I chose not return to work and instead spend the remainder of my life with my biological family (I couldn’t realistically return to work now anyway due to the large amount of medication I take and the consequent side effects). As we sat there chewing the fat and putting the world to rights, my CEO asked me,”Eamonn, have you given any thought to taking charge of your own destiny?”

Of course what he was asking me in his roundabout way was had I considered getting on a plane to Switzerland and taking matters into my own hands rather than wait for my neoplastic parasite to slowly eat me alive. It’s a pretty reasonable question and of course I had considered it. I had looked Dignitas up on the internet, considered the customer criteria and the costs. I had even looked into the DIY version and investigated the minimum lethal doses of the drugs I could probably get my hands on. The truth is these have ever really been serious options for me. I haven’t the desire to foreshorten my already shortened life. I have a family including two young children, and not only do I feel an obligation to them to be here for as long as possible, I want to share and experience as much as I can with them.

Nevertheless, my terminal prognosis has made me examine the question of suicide and assisted suicide through a sharper lens than I might have otherwise. Let’s just deal with that last sentence for a second shall we? Because that is what we are talking about here. Suicide. The word has been removed from the debate because of it’s emotive connotations and the concept that suicide is something that people with depression do, (as if depression isn’t an illness in it’s own right). But a new debate needs a new lexicon. The debate in question is, ‘should a third party, be they a professional, family or friend be considered for prosecution for murder or manslaughter because they assist a person who wishes to end their life, but is unable to carry out their wishes independently.’ (I describe this as a new debate, but this subject has been discussed for many decades legally, it has however become an extremely hot topic in the last decade and particularly the last few years as people utilise higher and higher legal options that become available.)

Fast forward two years and I am sitting on a hospice bed with Dr Ros. I have been an inpatient at St Francis Hospice for a week and been lucky enough to go through a pain management assessment that has helped me retake control of my day to day life (for a while at least).

She is a very proactive Director and ensures she visits each patient during their stay. She has been made aware of my recent article ‘The ‘H’ Word’ and is asking me my thoughts on Assisted Dying/ Suicide/ Killing. She is going to be interviewed on her views on the subject and the media would like a patient’s voice as well as a professional’s. As you have just read, Dr Ros does not believe that there should be a change in the current legislation, but that proper palliative education and care should be extended to all. I explain that while I agree entirely that the communication and role of palliative care needs to be extended massively, I believe that we all have the same basic human rights and in this case that means we all should be able to “…take charge of our own destiny.”

I have to state that at this point I was speaking in complete ignorance on the subject. Because of my personal dismissal of assisted dying as an option, I had not investigated the subject at all. my views were (and to a large extent still are), instinctive.

When we really get down to it; when we talk philosophically; we ‘own’ nothing. I would argue in fact that those things we think we own, actually own us. I’m not going to get into that discussion too much here, other than to say that the more we have; the more we have to lose; and the unhappier we seem to be. There is however one exception, and that is our flesh and blood, our bodies and minds. This sack of organic material that somehow comes together to form such incredible potential is the one thing that we can genuinely claim to possess, and have the right to do with whatever we wish. I am a Liberal with a capital ‘L’ and an Atheist with a capital ‘A’. As such, it is my belief that whatever your reasons are, and they may be terrible reasons, as long as you are not hurting anyone else or being coerced by external forces against your best interests, you should ultimately have the choice of when to terminate your own existence.

Clearly this is a very provocative and wide ranging statement that covers everything from teen suicide pacts, doomsday cults, acts of heroic sacrifice, termination of intolerable existence, voluntary euthanasia, and the early cessation of life of the terminally ill. These are just a few examples of people exercising their inalienable human right to decide their own fate, to end their lives. I have always assumed that right extends not only to those physically able to exercise that right, but also to those that aren’t.

For the purposes of this article, and to address the specific example being raised in the House of Lords at the moment, I am going to ignore everything except the last example I gave, the early cessation of life of the terminally ill. The public debate also extends to those who are suffering what they describe as intolerable existences, but who are not terminally ill, e.g. people with Permanent Vegetative State, however this is not part of Dr Ros’s case and requires a completely different analysis and argument, so I’ll avoid that hot potato for the moment too.

The big question then, ‘Should my wife/ doctor/ Power of Attorney/ whomever potentially face prosecution for helping relieve my suffering and assisting me in ending my life if I cannot do it myself?’ My first reaction: No, of course she shouldn’t. For my wife Sarah, this is purely hypothetical as she has already told me that she doesn’t think she could press that button. In extremis, she might ask someone else to do it, but she couldn’t herself; not for the dog, the cat, or me. In reality it’s an impossible question for her to answer; she’d want me to be around for every second possible, but if I asked her to help release me from unbearable pain, I believe she would ‘arrange’ it out of love and respect for my wishes. In fact, one might argue, there is no greater demonstration of love?

There is no doubt in my mind that the fear I bear is the fear of pain and suffering, not a fear of death itself. Dr Ros says, “A strange idea that we can ever “know” that non-existence is better than existence. Leaving aside the semantic epistemic concept of ‘knowledge’, I think we all have a surprisingly reasonable idea of what non-existence feels like. We experience it almost every night when we sleep. While our subconscious maybe whirring away performing all kinds of important processes, there is a large portion of our sleep where we have no conscious experience of our own existence. This is called Delta or slow wave sleep. Where we don’t dream; we don’t feel the passing of time. Something like a sixth of our lives are spent in this state of effective non existence and for most people it is a pretty peaceful place. If your waking hours are filled with severe discomfort or pain, a null state, a release from the incessant despairing suffering is without doubt preferable; I don’t think anyone would argue it isn’t better. Also, simply from a logical perspective, who has the right to decide for anyone else the opposite proposition; that existence is better than non-existence. Just because it is the status quo, that does not mean it is better or preferable.

This is all a distraction though anyway because what Dr Ros is saying is that there is a general public misconception that the terminally ill must endure pain and suffering. However there are a wide range of therapies and medicines that can relieve these demons, providing the terminally ill with an essentially peaceful and natural death. The problem is that not everybody is educated about these treatments, and for many they just can’t get the placements within the hospices. The beds are largely charity funded and there is inconsistency in practice. I don’t think there is anyone better placed to make that statement than Dr Ros. She lives and breathes this every day; it is her raison d’etre.

In a perfect world we would all have access to high quality palliative care that painlessly allows us to shuffle our mortal coils. We are surrounded by those we love, and both we and they are supported through the process by trained and dedicated professionals. Therefore we don’t need to hasten death, or argue for the protection of those that might do so on our behalf. It’s a moot point.

Except we don’t live in that perfect world, and in all practical senses, are unlikely ever to do so. Even if we did, the fact that we could all experience some Utopian death doesn’t effect the question of our most fundamental human right. The right to choose when to to die.

Dr Ros is right in saying that of the patients who made use of Oregon’s Death with Dignity Act 1994 during its first 5 years, 44 percent cited their fear of being a burden to their family, friends and carers ‘as part of their reasoning’ (the quote I saw didn’t use the term ‘prime reason’) for wanting to end their life. But this is true regardless of whether or not you need assistance to end your life. It’s a pretty understandable and reasonable sentiment. I have watched my wife spend the last two years foster a growing sense of anguish and sadness as she contemplates life without the man she loves, the father of her children and the only person who knows how to operate the five remote controls sitting on the coffee table. Of course in my family, we all want that two years to extend as far as possible, but only while there is a quality of life that justifies it. That again though, is our personal choice. Others, especially as the time comes near, may choose to hasten the dying process and be remembered as the relatively healthy, active, father who could run around and kick a ball with his kids, not the bed bound, fat, wheezing, weeping, shambles of a human being disintegrating in front of his family’s eyes.

What is interesting in the case of Oregon is that the evidence suggests that the numbers who want assistance in dying is actually very small and that many more people obtain the prescription than use it. Most of those who obtain a prescription die of their original illness. Between 1998 and 2002, 198 lethal prescriptions were written but only 38 patients used them, an average of less than 9 in 10,000 deaths per year.

What this indicates is that people simply want choices, they want to know they have a fall-back plan if things do become too unbearable. Dr Ros talks of the hypothetical button her patients could press to end it all immediately and painlessly, and how they say actually they would hold off and see what tomorrow brings. Of course these patients are the lucky ones; the ones who have had the benefit of good hospice treatment. Why would they press buttons prematurely?

The problem with the current legislation is that it in fact encourages people to foreshorten their lives even more than they otherwise would. If the only way for me to utilise the services of our Swiss friends without legally endangering my loved ones is to go through the process while I am fit enough to manage it by myself, I am more likely to start the process earlier and deny myself and my loved ones time together. It is not illegal to kill myself (you can chew on the logic behind that in your own time), but the law actually encourages the behaviour (suicide) it implies it is trying to prevent.

Here’s the problem though. Every bone in my body tells me that in the case of terminally ill people, under the right conditions you should have the right to end your life, assisted if necessary, and that assistant should be free from the fear of prosecution. However, there is this ‘slippery slope’ concept that says that once you open the door to this kind of legislation that it starts getting challenged further and further until the ‘Law of unintended consequences’ means that eventually you have a law that bears no reflection to the spirit of the original statute. I’m not going to go examine the validity of the ‘slippery slope’ argument here, but a quick Google will bring up plenty of Wiki pages and studies on the effect. The point is, if there is any reasonable question of it’s existence, then it effectively enters the argument.

Before concluding this, I briefly discussed the topic with a solicitor, about how laws are made and challenged, both in the UK and Europe. It was a very confusing discourse (for me anyway!) that ultimately led me to conclude that it is just too risky to start down the road of permissive killing. There is simply too great a risk of legal creep. The more complex the situation, the more opportunity for subtle and unintended change. Ten years down the road will the legislation have incrementally evolved beyond the original intended scope? Will we accept the widening of the act to include people that aren’t terminally ill, or circumstances that are significantly different from the original bill? When the law on assisted dying in Belgium was passed in 2002 it excluded minors, but a little over a decade later it has now become acceptable to the average Belgian, under the right conditions, to ‘kill’ children of any age in a ‘hopeless medical situation’. Was age considered originally? If not, why not? If it was, what has changed to make it acceptable now? What inconceivable horrors would we not include today, that will be permissible or preferable in a decade. In a chicken and egg scenario, will legislative development change society, or will society move the goal posts to suit it’s new requirements? The only certainty in life is change; there will be legal creep.

However, (and this is a big consideration) one could reasonably argue, how do you ever pass any law if you are going to throw this argument in the pot every time. The difference in this case is we are talking about people’s lives and the decision is irreversible once enacted.

This then leaves me in the curious position of disagreeing with myself!

A) People of sound mind should have at least one inalienable right; the right to decide their own continued existence. The right to end their own life at the time of their choosing. That right extends to those that are unable to carry out the physical action themselves, they should not be discriminated against because of their disability.

B) However, you cannot pass an act for the benefit of a small minority of a democracy, that by its existence endangers the majority of society. Endangering it not only from a practical perspective, but also because it changes the moral anchorpoint of that society. That’s not a democracy anymore.

Well.

That’s cleared that one up then.

This sounds like I have argued myself into a corner, the immovable object versus the irresistible force. but to the contrary, it makes the final conclusion very straightforward. If the argument cannot be clearly won, then, (and I cannot tell you how much it pains me to say this), the status quo should remain. We should not pass any legislation that will encourage or protect the assistance of a suicide.

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I really enjoyed the article by Dr Ros and whole heartedly agree that hospice care is an essential option for people when they are in need and want of end of life care.

I would like to write about my view pain and assisted suicide. My circumstance is different from Eamonn’s in that I do not have a terminal diagnosis. I do however write with experience of disease and have every day for the past 11 years lived with varying degrees of pain.

At its worst I was house bound for 6 months unable to cook, clean, wash or dress myself properly. My immune system is weak and I am susceptible to infections. I have recovered from pneumonia but as a consequence have lung damage. My disease and pain management has not been straight forward, I have tried numerous drugs and treatment and am now back to work. So what I do know is circumstance can change and progression of disease and pain can be slowed and managed. I re-iterate the point that Baroness Campbell makes, that “Suffering isn’t a permanent state”.

On the subject of assisted dying I am in favour of choice. I do believe that hospice care should be an option for all as should suicide.

My disease will worsen over time and I will become more disabled than I presently am. My mobility will decrease and as a consequence my way of life will change. I know that my disease will ultimately shorten my life and that I am likely to die because of my disease.

All that said I enjoy life and have a great support from family and friends. I have never wished to end my life but sympathise with those who do and are suffer more than myself. I would like the reassurance that if the time comes when I cannot bear to live anymore I would like have that button to push if I wish to push it.

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I agree. Years ago as part of my law degree my dissertation was based on whether we should have a legal right to die. Like so many people I started with a notion of ‘of course there should’ but as I researched the paper and dug a little deeper it scared the crap out of me how easily once things become ‘law’ the goalposts move. You don’t have to be anti abortion, for example, to see how easily these things are performed since they were first made legal. It’s a slippery slope.

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Hi Caroline,

Interesting to hear another voice stressing the dangers of the ‘slippery slope’, especially one that has some legal training. I had been expecting a deluge of emotional replies citing powerful emotive cases supporting assisted dying/suicide, maybe those are still building their cases:-) I hope we do see some.

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Just to pick up on one thing you said there Eamonn. ‘You cannot pass an act for the benefit of a small minority of a democracy’, surely there’s innumerable examples of that happening in our democracy of the UK where minorities issues have been given way more priority than the majority. Not going to get into details here as it’ll take it away from the main point….but just wanted to pick up on that one point.

As for the overall article I agree in principle, I didn’t for quite a while and I’ve now read this 4 times somewhat of an achievement for me as I have the attention span of a….oh look a butterfly….

But the one case I kept coming back to was that guy with locked in syndrome. He wanted out. He couldn’t take the option of ending it himself because he could not move he was trapped in his own body, cognisant, aware but trapped and desperately unhappy with his lot in life so much so he ended up in court fighting for his right to die because he couldn’t do it himself.

There has to be something for these cases whereby their quality of life is so bad that to remain alive is torture and simply an unhappy place to be, we wouldn’t put that upon our own pets so why are these particular instances any different?

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I don’t deny for a second Matt, that many acts have been passed for the benefit of a small minority of a ‘democracy‘ (usually the powerful decision makers), on many occasions in the UK and elsewhere that propound democratic values. That doesn’t make it acceptable and certainly shouldn’t excuse a lack of aspiration to our chosen societal system. (I appreciate you not digressing into a completely different tangent.)

I am amazed you read the article four times, which is testament to Ros’s writing and the importance of the subject (this really is something that effects us all). It has also been a very hot topic of late with Lord Faulkner and the House of Lords chewing the cud in the last couple of weeks.

As I understand (wiki) it, 90% of those with locked-in syndrome die within four months. Some living much longer, and a small proportion making full recovery. I don’t know if St Francis Hospice has ever dealt with someone with this condition? Ros suggests that patients of the hospice are not allowed to suffer, but having zero medical experience, I’m not sure what treatment would be put in place to manage the symptoms this particular illness. Regardless of any of these answers we still find ourselves back at the same horrible ethical quandary. Do we alter the law for the genuine need and benefit of the few, if by doing so we open the door to potentially dangerous legislation creep further down the road.

My conclusion (I don’t know if you read my response four times?:-)) is that no matter how emotive and terrible the individual circumstances, we cannot base our laws on these rare, genuinely awful and highly newsworthy cases. I really find it hard to say that, it grates against every ounce of my moral fibre, and I accept my views would be probably very different if it was my brother or mother. However, the ethical standards should remain the same.

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Hello Eamon, supprise supprise. Just stumbled on to your blog, very impressive.Congratulations. Feel I have to write something to enrole.
The debate and contributions by the writers are great and very informative and I have more understanding of Hospices and especially The Hospice of St Francis now.
Don’t think any one could disagree that more hospices are needed and more informationon put out there on what can be achieved with their help.Much admiration for all the staff, volunteers and fund raisers.
The debate on assisted sucicide/assisted dying/assisted euthanasia:
I agree with you that if I were in the Hospice Of St Francis I would feel no need to press the button as Dr Ros put it but might in a lesser place. Seems like a bit of discrimination not to allow the less abled to be assisted while the able can avail.
The slippery slope:
Is there not some slippage in most legislation and what can the worst case scenario be? People change, conditions change and legislation can change to suit. Nothing new there.
I would agree to allow assistance and allow people to choose. Like the Oregeon effect it may not be used but its could be comforting to some to know its available.
Also about the small minority and democracy bit you wrote about. Can’t see any thing wrong with the Goverment (voted in by the majority) creating a law for the minority. Is that not democracy? Think its good for society to look after its weakest/most vulnerable.
Keep on Keeping on.You are doing great.
Battery is running out. Wonder will this send if I press the enter button??
Help no it hasn’t

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Frank Pitfield
August 9, 2014 9:29 PM

I totally agree with both Dr. Ross and Eamonn. Having been told nine days ago that I probably have about six months to live, I found my meeting with someone from Willen Hospice this week very reassuring. Like Eamonn, whom, incidentally, I have known for about twenty years, my greatest fear is the pain and suffering that comes with the process of dying. Like him, I have no fears for myself of actually being dead as I have no religious belief and I’m sure it’s like an eternal dreamless sleep. So to be advised that my final days can be dignified and physically bearable is an enormous comfort and I have already registered my wish to end my days in my local hospice. Fortunately that seems not to be a problem where I live.

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Joyce Paramore
August 11, 2014 8:34 AM

I loved Dr. Taylor’s article and agree with it….and with your end conclusion. We need to raise awareness of the need for more and better hospices. I had a different situation with my Mom. She going downhill and needing a lot of care. I had her in my home for her last six months with the added help of a home hospice group. I cannot say enough good about them. They were wonderful and caring people and I don’t think I could have done it without them. For us, it was a great solution and I am so thankful I did it, and had their help. They bathed her, applied lotions and massages, checked all her vital signs, came at a moments notice, supervised her meds, – so much help! I can see that in many cases, being in a hospice would almost be necessary because of more severe symptoms and problems. I’ve enjoyed reading your “blogs” Eamonn! You write exceptionally well, and give us all something to think about! I’m Christian, and in my prayers I included “all the good people on this earth”. So you are covered there “just in case”! Best wishes!

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