Hospital trust pays out £45,000 for ignoring an Advance Decision

The BBC report the case of 81 yr old Brenda Grant who was kept alive for 22 months by artificial feeding, against the instructions in her Advance Decision, (AD), because the AD had been mislaid in her medical notes.

The case is horrifying. People write ADs in order to refuse treatment at the end of life, and hence hasten their death, if and when they are no longer able to communicate effectively themselves. There are many important points about this story:

  • Some UK healthcare processes do not take sufficient care to ensure that a person’s AD is recorded and honoured appropriately. This case should act as a warning to healthcare administrators to ensure they have systems in place to make the AD process work as intended. An AD to refuse treatment is legally binding on healthcare professionals.
  • The case should encourage others, who suspect a relative’s AD has not been honoured, to take legal action. Such cases are very important to put pressure on NHS administrators and care home operators to ensure ADs are handled appropriately.
  • In practice, at present, it seems that having a relative or friend who can act on a patient’s behalf to ensure that the AD is followed is highly desirable. MDMD Coordinator Phil Cheatle says: “My personal experience with my mother and my aunt, (both of whom had advanced dementia at the time), is that without me physically taking a copy of their ADs to the hospital every time they were admitted, and ensuring that the doctors were aware of them, the documents would have been ignored. Once doctors saw the AD, I generally found them very helpful in restricting treatment. In my aunt’s case, the consultant stopped all life-preserving medication immediately, in accordance with her wishes expressed in her AD. Without my intervention this wouldn’t have happened.”
  • It appears that Brenda Grant had not given a copy of her AD to her children. Similarly it had not reached her nursing home. It was only when her GP discovered the AD that artificial feeding was stopped… 22 months later. The lesson here is clear – give copies of your AD to people who you can trust to act for you, possibly formally appointing them as a Power of Attorney for Health and Welfare. Make sure that the people you trust know that they need to personally show the AD to nursing homes, hospital doctors and other healthcare workers. The system does not always work automatically.
  • The problem may be of particular concern in A&E departments. How many patients are given emergency life-saving treatment which they state clearly in their AD that they would wish to refuse? It seems that we need processes for ADs, to ensure they are checked at the early stage of hospital admission, similar to the DNAR processes. In the meantime, perhaps the best thing to do is to discuss your AD with your doctor and, if appropriate, ask them to write a DNAR order for you.
  • A particularly telling aspect of this story is that Brenda Grant is reported to have made her AD because she feared degradation and indignity more than death after seeing her mother lose independence through dementia. Many MDMD supporters share this concern, which is quite understandable now that dementia is the leading cause of death in England and Wales. This is an example of why MDMD campaigns for an assisted dying law which is not restricted to those who are within six months of dying and who have sufficient mental capacity at that time. Such a law would be very unlikely to help anyone dying of dementia, which can lead to prolonged degradation and indignity.

If you haven’t written an AD and given copies to your doctor, and to people you trust to act for you, MDMD strongly recommend that you do so. Despite this case, ADs are an essential part of end of life planning. For further information on Advance Decisions and Power of Attorney for Health and Welfare, see our page on Advance Planning.

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New Report on Outsourcing Assisted Dying to Switzerland

An excellent report ‘The True Cost – How the UK Outsources Death to Dignitas‘ was recently published by Dignity in Dying, discussing the many difficulties associated with UK citizens choosing to end their lives in Switzerland. (Despite it’s title, the report also considers other Swiss organisations prepared to offer medical assistance to die to foreign nationals, such as Lifecircle.) The underlying research was carried out by Bronwyn Parry, Professor of Global Health and Social Medicine at King’s College London and her Research Associate Sally Eales.

One day we will look back in disbelief at how long it took Parliament to realise this.

In the report’s foreword, MP Kit Malthouse, (who chairs the Choice at the End of Life All-Party Parliamentary Group), says “Our outdated laws discriminate between rich and poor, discourage proper conversations between patients and their doctors, criminalise grieving relatives who spend time with their loved ones in their dying moments and oblige people to end their lives before they are ready. Worst of all, while they are predicated on preserving the sanctity of life, they show no mercy to those facing an agonising death, and deny free will to those whose lives and deaths depend upon it. One day we will look back in disbelief at how long it took Parliament to realise this.” The report gives substance to these points through analysis of the current situation and using quotes from many interviews with those who have been involved in the process.

The report goes into admirable depth in many related issues, including:

  • The confusion and inconsistency over the medical approach to requests for discussion about assisted death or requests for required documents. This is something also covered in a recent article by Dr Paul Teed who is currently carrying out research in this area at Bristol University. (If you have personal experience and would be willing to take part in this research you can contact Paul anonymously through his website.)
  • The complexity of the process of arranging an assisted death in Switzerland. The process can take many months. MDMD understand from Dignitas that the process can take 3 or 4 months. Some people leave it too late to get started… to the point that by the time they have the “green light” to go, they are too ill to travel. In a response to a follow up question from MDMD, Dr Erika Preisig of Lifecircle told us that 8% of applications are not progressed because the applicant is no longer able to travel.
  • People are ending their lives too soon, due to the need to be able to travel to Switzerland. Dr Preisig told MDMD that she estimated that 40% of the people who end their lives at Lifecircle choose to do so sooner than they might, if they had the option of a medically assisted death at home, due to fear of no longer being able to travel.
  • Why even the best available palliative care is not always sufficient.
  • The alternatives some people feel forced to consider: refusing treatment and suicide.
  • The cost – typically around £10,000. This figure should, however, be viewed in the context of some other costs:
    a) It includes cremation costs which could cost around £3,000 in the UK
    b) Anyone having to pay for their own residential nursing care will typically be paying around £1,000 per week.
    c) Dignitas are sometimes able to reduce or waive their fees for those who do not have sufficient financial means.

This important and hard-hitting report makes an overwhelming case for changing the UK law. Until that happens there are no good alternatives for some people. The clear conclusions for anyone contemplating “going to Switzerland” are to: apply early; expect bureaucratic difficulties; and, regretfully, plan to go before you would ideally choose, while you are still able to travel. MDMD recommend reading the report in full and thank those who contributed to its production.

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Victoria, Australia law passes the upper house

Excellent news from Australia. Further to our previous report, the upper house of the Australian state of Victoria has passed a Voluntary Assisted Dying bill. The bill passed by 22 to 18 after a 28 hour sitting. The progress is reported in this Guardian article.

The debate in the upper house caused some amendments to the original bill, in particular, one which tightened the life-expectancy requirement from 12 months to 6 months unless the patient is suffering a neurodegenerative illness such as motor neuron disease. Although this is more restrictive than MDMD would like to see, as it is unlikely to be applicable to early stage dementia patients who would wish to end their lives while they still have the mental capacity to do so, this is a welcome step forward beyond the rigid six-month life expectancy criterion used by states such as Oregon in USA, and proposed for the UK in September 2015. The changes to the Victoria bill still need to be ratified by the lower house, but this is reported to be a formality which will be completed next week.

The Guardian article cautions “The law comes into operation in June 2019. … The next state election is due in November next year and already opponents are saying they will campaign to have the law repealed before it ever commences.” Although the battle is not yet over, very significant progress has been made.

Looking at how and why such progress came about in Victoria, the Guardian article identifies the following factors in its interviews with those involved in the debate there:

  • The process was sponsored by the Victoria government, rather than it being a private members’ bill. This gave it significant additional resources and authority.
  • The Victoria Premier Daniel Andrews, supported the Bill. Andrews, a Catholic, changed his mind on assisted dying after his father died of cancer last year.
  • There was a properly informed debate. The facts were used to overcome the unfounded fears and uncertainties spread by those opposed to the bill.

How long will we, in the UK, have to wait until we have a government in tune with the electorate on this issue? Perhaps when we have a prime minister who has witnessed at first hand the demise of a close relative with dementia, when the person’s rational requests for a medically assisted death are refused, or when the person takes their own life in desperation, like Sir Nicholas Wall did earlier this year. Dementia is now the leading cause of death in England and Wales. Many more die with it rather than of it. Dementia sufferers who seek a medically assisted death can obtain one, provided they act while they still have the mental capacity to make a life ending decision. However, they can only do this by going through the arduous process of arranging it in Switzerland. A recent report shows how difficult this process is.

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Pharmacist driven to break a bad law.

The Daily Telegraph has been following another case relating to assisted suicide / murder. Pharmacist Bipin Desai was accused of giving his 85 year old father a lethal drink containing concentrated morphine stolen from the pharmacy where he worked. The high court judge threw out the charge of murder, allowing Mr Desai to go free with a nine month jail sentence suspended for nine months for assisting suicide.

What message do cases like this give to our society? That it is acceptable to steal lethal drugs and apply them out of compassion… but make sure you can demonstrate that you were asked to do it? Is that the best we can offer?

But what if you are not “lucky” enough to have access to appropriate drugs and know how to use them? Or there wasn’t enough evidence that you were being asked to help someone die, if indeed you were? Or you just couldn’t bring yourself to break the law – leaving the dying person to suffer at their end of life, against their will; and leaving the family to suffer as they powerlessly watch the unacceptable situation unfold.

This story is by no means isolated. Only last month another case was reported with some similarities.

We owe our elderly people and their families much better care than this. Where are the safeguards in the current law? Where is the compassion? How can people be expected to deal with the natural desire to do the best they can for their loved ones, but then have to face not just the loss of their relative, but a stressful and difficult criminal investigation which turns their life upside down for years afterwards?

There is a better way, as demonstrated in the more enlightened countries that allow a legal option of medically assisted dying. At a minimum, BEFORE any lethal drugs are administered:

  • The person wishing an assisted death should make their end of life wishes known well in advance – ideally in a written, independently witnessed statement, in addition to an advance decision.
  • All possible support should be given to help people adjust to changed capabilities before choosing to end their life.
  • All available palliative care options should be fully considered and found unacceptable.
  • The situation should be assessed by multiple professionals, over a period of time, in particular by interviewing the person concerned to determine that their wishes are clear, consistent and made without coercion.

We need a better approach to end of life care – one in which the option of a medically assisted death can be openly discussed with the care team, and as a last resort, carried out by trained professionals.

We need to protect people – the dying, the vulnerable, the well meaning families – from situations like this court case. The judge appears to have taken a reasonable course of action, given the current law. But the real tragedy is that these sort of situations are allowed to happen – by a broken law and restricted medical practice which prevent some people having the “good death” they wish for.

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Dementia and Alzheimer’s increasingly the leading cause of death

In October 2016 the Office of National Statistics reported that in 2015 dementia and Alzheimer’s were now the leading cause of death in England and Wales. We discussed this in a latest news article then. A year later they have now published data for 2016, which shows this trend increasing.

Dementia and Alzheimer’s accounted for 12% of all deaths in 2016, (up from 11.6% in 2015). For the over 80’s, this rises to 18.9% (up from 18.1% in 2015).

By way of explanation the ONS say, “Although general increases in longevity and improved treatment of other conditions are part of the reason for this increase, improvements in recognition, identification and diagnosis of dementia and Alzheimer’s disease have also contributed.”

The final stages of these frightening diseases are something that many of us would like to avoid. This is a strong reason why MDMD seek more wide-ranging assisted dying legislation than proposals which are limited to helping the “terminally ill”, where this is interpreted as having a life-expectancy of six months or less. Some people, like MDMD supporter Alex Pandolfo, plan to end their life in Switzerland, rather than risk suffering the end stage of Alzheimer’s disease. While this may not be as good a death as he might wish, MDMD quite understands why people like Alex choose this option, instead of suffering like Joan Cheatle for example.

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When is it right to turn off Life Support?

The Daily Mail recently reported a case of a 74 year old woman in a minimally conscious state, whose daughter has won a court case to have her mother’s life support turned off. The NHS Trust involved, acting in the patient’s “best interests”, wished to continue treatment, but this was over-ruled by the judge. It appeared very unlikely that the woman’s condition would ever improve, though with continuing treatment she might live for three to five years.

The case turned on an old email the daughter found in which her mother said “Did you see that thing on dementia? Get the pillow ready if I get that way!” The judge took this as evidence of the woman’s wishes not to be kept alive. The case has strong parallels with that of police officer Paul Briggs.

These cases highlight the importance of writing an advance decision, clarifying a person’s wishes for refusing treatment (including refusing artificial feeding and hydration), in the event that at some point in the future they are no longer able to make treatment decisions for themselves. With an advance decision to refuse treatment in place, everyone would clearly understand the patient’s wishes, and medical staff are legally required to follow the patients wishes regarding treatment refusal.

We owe it to both our well-meaning relatives and to our doctors, to avoid difficult conflicts like this where people with different opinions about what is best for us have to argue it out in court. It can’t be pleasant for them, whichever side of the argument they are on, and it certainly isn’t good for us if our wishes are not acted upon, or are delayed.

MDMD strongly encourages everyone to make an advance decision, regardless of age or current health. See our advice on end of life planning here. If you haven’t written yours, please do so… and then encourage others to write theirs.

Some might think that allowing someone to die by turning off artificial feeding and hydration is cruel, arguing instead for a right for euthanasia in such cases. When the person is in a coma, and with appropriate pain killers, the dying person will not suffer, even though the dying process may take around 2 weeks. Most importantly, turning off life support is currently legal in the UK, whereas euthanasia is not.

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Update on Omid T’s High Court Case

Omid T suffers from Multiple Systems Atrophy. An incurable condition which has permanently reduced his quality of life below the level he is able to accept. It is not a terminal condition – he may have to continue suffering against his will for many years. Omid is taking legal action to request medical assistance to die. He is unable to take his own life, with dignity, without assistance.

Omid’s case differs from that of Noel Conway, who is also taking legal action, as Noel Conway is only arguing for medical assistance to die once doctors believe he has six months or less to live. For people like Omid, a six-month criterion is too restrictive as they have to suffer unacceptably for many years before that point, which doctors may have extreme difficulty in accurately predicting.

Omid’s case is approaching the next stage, with a High Court judgement due on 21st November 2017.

There is no palliative care that can help me. My life is beyond that

Omid’s latest message is available here. In it he says “There is no palliative care that can help me.  My life is beyond that”. This highlights the limits of palliative care, touted by some as a reason why legalised assisted dying is unnecessary. While palliative care is a great help for many, and MDMD strongly supports the efforts of those who work in this area, we believe those involved in palliative care should recognise the limitations of their approach and the choices of people like Omid for whom even the best available palliative care is unable to make their life tolerable for them.

Omid’s case still needs funding. Please donate if you are able, on his crowdjustice page.

Saimo Chahal, the Bindman’s lawyer leading Omid’s case, has written a useful article in the Law Society Gazette about the case, and the impact of the recent ruling in the Conway case. The full Conway ruling is available here.

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Is “Mercy Killing” ever the right thing to do?

The BBC, and a number of newspapers, (see the Ayrshire Post), report the story of Ian Gordon who smothered his wife of 46 years with a pillow as “a final act of love” to relieve her pain and suffering. Did he do the right thing?

The judge’s explanation in sentencing, though interesting, doesn’t really help. The judge may well be doing his job to the best of his ability, implementing the law within the bounds he is permitted. But cases like this are complex and, (MDMD believe), indicate a failing in the law itself, rather than its application. The original charge of murder which Mr Gordon faced was reduced to culpable homicide, on the basis of diminished responsibility, at an earlier hearing.

The court heard that Mr Gordon’s wife did not want to be treated for her health problems because she was afraid of hospitals. Her family report her suffering excruciating pain immediately prior to her death. This is the first complexity – the possibility for treatment and pain relief, and even professional diagnosis was apparently refused. This was Mrs Gordon’s right, but it makes the situation harder for everyone else when it causes desperate actions, however well intentioned.

Did she actually ask to be killed? And if she did, was it her own, well considered and persistent wish, made when she had sufficient mental capacity? No verbal or written request is recorded, though apparently the couple had a “death pact” between themselves. There were, of course, no independent professional witnesses to this.

Had all alternative options been explored? For example, could increasing levels of pain relief have been given at her home, possibly including terminal sedation? To what extent might these have provided a good death, or at least a better death, for this unfortunate lady?

Mrs Gordon’s daughter explained that her mother had a history of suffering from anxiety and depression. To what extent did this exacerbate the situation? Was it resistant to all possible treatments?

In cases like this, without the possibility of legal medically assisted dying, these questions cannot be satisfactorily answered. In the most important sense, it is too late to ask after the person concerned – and primary witness – has been killed, or has taken their own life. It is only when a formal legal process for assisted dying is available,and someone has requested this, that proper investigations can be made before the death, and the secrecy and anguish of well-meaning but possibly misdirected illegal actions can be avoided.

MDMD Coordinator, Phil Cheatle, says, “I have been in a similar, very difficult situation to Mr Gordon, so I have every sympathy with him and his actions. On balance, I decided to refuse my mother’s requests to help end her life when I had a similar opportunity, but perhaps my mother’s suffering was not as great as Mrs Gordon’s. However, seeing my mother in pain, and her personality slowly disintegrating due to dementia, was dreadful, both for her and for those who knew the person she had been. We need a change in the law to prevent tragedies like this – whichever decision people like Mr Gordon, or me, take.”

What sort of assisted dying legislation would have avoided the Gordon’s tragedy and others like them? Fundamentally a law which respects a dying person’s well informed and well considered wishes, and which gives them some control over the timing of their death. However, for the protection of vulnerable people and the wider society, such a law needs to place strong requirements on the person seeking assistance to die. For someone to take advantage of such a law, they would have to agree to many examinations and consultations with multiple trained professionals. At the very least these professionals would need to ensure:

  • that the requestor was incurably and unacceptably suffering from a condition that was highly unlikely to improve;
  • that the requestor considered an assisted death to be the best option available for them, having carefully considered all other available options, and the likely future quality of life they could expect;
  • that the requestor had sufficient mental capacity to take a life-ending decision;
  • that the requestor’s decision was consistent over a period of time;
  • that the requestor had instigated the request themselves and had not been coerced into their decision.

It is not clear whether Mrs Gordon would have agreed to the process, or would have met conditions like these, had the option been available. This makes this case particularly difficult. It surely cannot be correct for others, (in particular those who are emotionally involved, and not medically qualified), to make a life ending choice on behalf of another, however well-intentioned and compassionate their motives. The only exception is in the situation of doctors making a best-interests decision to stop further treatment in cases they deem hopeless, or following a patient’s advance decision to refuse treatment. Our sympathy with the actions of Mr Gordon is precisely because there didn’t appear to be better alternatives available to him and his wife. With better alternatives, his actions would have been unacceptable.

An appropriate law would make the situation much clearer to those who wanted to do their best to help their loved ones to have a good death. If someone like Mrs Gordon had sought professional help – knowing that help to die would be available when needed… If she had put on record, many years before hand, her desire for the option of an assisted death if she ever reached a point in later life where she deemed it necessary… Then there would be no excuse for people to take drastic, illegal and dangerous action themselves, and as a result society, (and in particular, vulnerable people), would be safer.

Mr Gordon told his daughter “I don’t have a single regret.” His whole family and many character referees, appear to back his decision to kill his wife out of compassion. A law that makes people feel they have to take the law into their own hands to “do the right thing”, due to lack of appropriate legal choices, is fundamentally a bad law and needs to be changed. This failure of the current law to provide a more compassionate option, is made worse, in this case, by compounding the tragedy of the violent death of a much loved wife and mother, with another tragedy of a jail sentence imposed on a caring husband, driven to break the law due to lack of an acceptable alternative.

The case is not an isolated incident. For example, earlier this year a man who attempted to kill his wife to end her suffering was given a suspended manslaughter sentence. How many more cases of successful or attempted mercy killings, assisted suicides, and people taking their own life do we have to endure before we get more compassionate laws – throughout the UK? How many more tragic events like these go undetected, or under reported?

Update 19th March 2018:

Scottish Legal News reports that the custodial sentence of Ian Gordon has been quashed on appeal – leaving Mr Gordon with an admonition. The full ruling is here. It appears that the appeal court decided that the original  sentence was inappropriate as insufficient weight had been given to psychiatric reports on Mr Gordon which indicate that he “was suffering an abnormality of mind” which rendered him “unable by reason of mental disorder to appreciate the nature or wrongfulness of any conduct”. Good news for Mr Gordon and his family, but it further emphasises the need for a change in the law to avoid these dreadful, unsafe situations in the first place. We need to allow the option for a medically assisted death under carefully controlled circumstances, in order to remove the need for desperate actions by apparently compassionate, well-meaning, people who are “suffering an abnormality of mind” which leaves them “unable … to appreciate the nature or wrongfulness of any conduct”. Where are the safeguards in that? Where is the careful, objective, consideration from impartial experts – before the (possibly vulnerable) person has died?

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MS Sufferer Colin Campbell’s deferred assisted death raises important questions about help for the disabled

In April 2017 MS sufferer Colin Campbell publicly stated his intention to end his life in Switzerland on June 15th 2017. Due to the intervention of fellow MS sufferer Rona Tynan, and the alternatives and assistance she helped him consider, Colin has deferred his appointment in Switzerland.

In October 2017 a BBC story and podcast discusses why Colin changed his mind. Colin is clear that he has deferred his Swiss appointment, rather than cancelled it, and Rona agrees that she supports assisted dying and respects Colin’s decision. One of the participants in the discussion was Mik Scarlet, a member of Not Dead Yet UK, a group of disabled people who oppose assisted suicide. Mik makes some very important points. “You can’t say you’ve made an informed decision if you don’t know about scooters or care plans.” He goes on to say “I do believe that eventually we will get assisted dying”, but he points out that this should not be permitted until all possible alternatives have been considered – including the services which may be able to make someone’s quality of life acceptable to them again, and the support to help them adjust to changed circumstances. He continues, “…then when people do get to the point when they want to die they got there at a point where it is real. It is not because they are not supported and they are not being helped.”

MDMD agrees with Mik on this. One of the problems with the legislation as it is today, is that people are taking their own life, either on their own, or with medical help in Switzerland, without necessarily having the full support that could make their quality of life acceptable to them again. Colin Campbell’s case suggests that many others may be suffering unnecessarily due to lack of access to available services.

Exactly what level of support is available, at the time it is needed, is of course down to politicians, social services, NICE, and ultimately to us, the voters. Demand is always likely to be higher than the state can provide. Whether the support available at the time it is needed is sufficient for the individual concerned, is a personal decision. But until there is a change in the law and people are encouraged to seek help before ending their life, tragic early deaths are bound to occur out of ignorance of the help available.

Importantly, when accepting help, people need to have the confidence that their end of life wishes will be respected in future – even if for them, a good death, means a medically assisted one. Without a change in the law, there is a risk that in accepting help, the ability to end one’s life unaided will be lost. This can give rise to a real fear of being trapped in a system that can’t help in the way the person wishes. This is another reason why today some people, even when well informed of available options, may choose to end their life too soon, while they still can, knowing that no one can legally help them later.

Where MDMD and some of those opposed to a change in the law may differ, is that to MDMD it is not acceptable for people suffering to be denied a good death now, in the hope of better care services at some distant unspecified point in the future, long after they have died unpleasantly. People need to make decisions about their lives, and their deaths, now, in the situations they find themselves – having fully considered all the options currently available. A well designed assisted dying law and activation procedure can help ensure that people who choose an assisted death do make a well informed choice. The present law does not do that and needs to be changed. With such a law in place, no one need suffer against their will. As care and support for incurably ill and dying people then continues to improve, we can anticipate that this could cause some people to delay or not request the assisted dying option.

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Progress in Victoria, Australia

MDMD is pleased to see that an assisted dying bill in Victoria is making good progress, having passed a vote in the lower house by 47 to 37. The Bill still needs to pass a vote in the upper house.

See this BBC report, for example. More details are provided in the Dignity in Dying news story.

While the bill is a significant step forward, it is restricted to the “terminally ill”. In the case of Victoria, this is defined as being diagnosed with an incurable disease, illness or medical condition that is expected to cause death within 12 months. It is interesting that Victoria chooses a 12 month condition rather than the 6 months used in US states, or the “reasonably foreseeable” death, with unspecified time duration, used in Canada. Switzerland, the Netherlands and Belgium do not have a time limit in their assisted dying legislation.

The bill proposed for the UK and rejected by the House of Commons in September 2015 followed the Oregon model and was restricted to those with a life expectancy of 6 months or less.

Which time limit, (if any), should be used? Why should terminally ill people in the UK whose life expectancy is between 6 and 12 months be denied the opportunities that those in Victoria may soon have? MDMD would like to see clarification on this from those, like Dignity in Dying, who both welcome the developments in Victoria, but seek to restrict assisted dying in the UK to those who are within 6 months of dying. It they publish explanations of their position, we will gladly link to them here.

From the MDMD perspective, we consider any time limit to be arbitrary, and at best a first step towards a more inclusive criterion. Perhaps this is necessary caution. But time limits are impossible for doctors to accurately predict and unfairly exclude people who may have to suffer for many years – such as Tony Nicklinson, Omid, and dementia sufferers like Alex Pandolfo.

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