Advance Decisions

Over a third of Church of England priests support assisted dying

Source: https://www.thetimes.co.uk/article/church-of-england-priests-survey-gay-conversion-therapy-ban-assisted-dying-house-of-lords-net-zero-7kqg3dswr

Support for assisted dying among Church of England priests has grown significantly in the last nine years. Over a third of priests would support assisted dying for someone with an incurable disease.

My Death, My Decision hopes this revelation might help to foster a safe and open debate amongst the Church of England clergy on this vital issue, especially as Scotland, Jersey and the Isle of Man come increasingly closer to creating compassionate assisted dying legislation.

A recent survey by the Times of 1,185 Church of England priests conducted this month found that 35.5% of priests supported a compassionate assisted dying law, compared to 22% in 2014. While a majority do not want assisted dying legalised, opposition has dropped 15%, from 70% to 55%.

Former Archbishop of Canterbury Lord Carey of Clifton described assisted dying as “profoundly Christian to do all we can to ensure nobody suffers against their wishes”. He told The Times: “Opinion is beginning to change as more and more clergy encounter those increasingly difficult experiences of terminal illness where even the best medical care leaves patients living their last days and hours in unconscionable agony and indignity.”

My Death, My Decision’s patron Reverend Canon Rosie Harper says: “The dignity and the compassion that every dying person is owed is still not available to us in this country. I long for [the law] to change and I hope that My Death, My Decision will be part of a wave of people, as most of the people in this country want it to change.”

A 2019 assisted dying poll by Populus found that 86% of people deemed regular churchgoers would support assisted dying under some circumstances. 82% of people who identified as Christian would support a change in the law.

Trevor Moore, Chair of My Death, My Decision said:

“We know the majority of people in the pews support a compassionate, safe assisted dying law and it’s refreshing to see opinions at the pulpit slowly catching up. There is nothing Christian about forcing incurably sick people to have long, painful undignified deaths.

My Death, My Decision welcomes this wave of support shown by The Times survey, and we are glad to see opposition to assisted dying fall considerably too. People deserve to make decisions about their lives and ultimately their deaths. It is time Parliament legislates on this important issue.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow those who are terminally ill or intolerably suffering the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members and supporters, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Read more about our work with the Assisted Dying Inquiry: https://www.mydeath-mydecision.org.uk/2023/07/13/our-summary-the-assisted-dying-inquiry/ 

 

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MDMD condemns inhumane lack of choice, as incurably suffering man is forced to starve himself to death

An incurably suffering man, who wants the option of a legal assisted death, has decided to end his life by starving himself to death – while the choice is still within his control to make.  

Michael Askham, a 59-year father of three and former nurse, suffers from motor neurone disease and is unable to walk, talk, or socialise as he used to. He now believes that if he does not act to end his life soon, his only prospects will be a slow, drawn-out, and painful death. 

Speaking ahead of his decision to die, Michael has urged MPs to vote in favour of assisted dying reform – and allow others in his situation more time with their loved ones. 

He said:

‘All elements of life have slowly been taken away from me. Socialising, singing, eating, drinking, running, walking, playing guitar, working and driving. Life is no longer giving me enough pleasure for me to wish to continue’. 

‘My wish is for MPs to support and push for progress towards assisted dying in the UK. I understand that some people could be seen as being at risk of exploitation when assisted dying is legalised. Countries with the law already in place have legal processes to protect vulnerable people’.

‘I would hate to imagine any of my children going through this experience in the UK’. 

Phil Cheatle the Lead Campaign Commentator for My Death, My Decision said:

‘It is barbaric that the only option available to those facing constant and incurable suffering, like Michael, is the inhumane process of starvation. There is a better and more compassionate way.’

‘More countries than ever, including Canada, now permit the option of an assisted death for adults of sound mind – showing that such changes in the law can be achieved in a safe and compassionate manner. For some, even the comfort of knowing that an assisted death is available if needed is enough in itself – as it enables them to be secure in the knowledge that they will not have to suffer more than they can bear.’ 

‘We need a change of law in the UK so that doctors can provide the end of life assistance that their patients want – excellent palliative care with the option of a medically assisted death when the best palliative solutions are inadequate.’

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Book Review: O, Let me not get Alzheimer’s Sweet Heaven!

Latest figures from the Office of National Statistics show that the number of deaths attributed to Alzheimer’s disease and other forms of dementia continues to rise. 1 in 8 of all deaths in England and Wales were caused by dementia in 2018. For women over 80 the figure rises to 1 in 4. A defining aspect of MDMD is that we campaign for a change in the law to allow assisted dying for those in early stage dementia, provided that the sufferer still has mental capacity to make a life ending decision. This is the same criterion used by Dignitas and Lifecircle in Switzerland. In a recent poll we sponsored, 77% of those surveyed agreed with our position on this, either “always” or “sometimes” with an additional 11% “rarely”. Only 12% thought it never acceptable. A separate survey in Jersey, using the same questions, showed even stronger support: 86.7% agreed “always” or “sometimes”, with a further 3.3% rarely. Only 10% responded “never”.

This background demonstrates both the importance of the issue of dementia and the high level of public support for the MDMD position. The subject of dementia and assisted dying is complex and raises a minefield of ethical issues. A new book, “O, Let me not get Alzheimer’s Sweet Heaven! Why many people prefer death or active deliverance to living with dementia” is published on 17th October 2019 which provides a clear guide through this minefield. It is written in a style which is very accessible to the general reader, but is backed up with a wealth of academic references for the professional. There are many anecdotes, presented with touches of humour, to lighten an otherwise very dark subject.

The author, Colin Brewer, is a retired psychiatrist who has been involved in the UK right to die movement for over 40 years. In the late 1970’s he served on the committee of the Voluntary Euthanasia Society (now renamed Dignity in Dying). He has been on the Executive Council of MDMD since 2015 and is currently a board member. He is also the convenor of MDMD’s Medical Group. In the introduction he states “I have assessed nearly every British dementia patient who applied to go to Switzerland [for a medically assisted death] in the last few years…“. He co-edited the excellent collection of essays “I’ll See Myself Out Thank You“. With that background he is uniquely qualified to write this book.

The book starts by explaining what dementia is; the varieties; what it is like to watch a person’s decline; and what it feels like to live it, (as far as we can tell). The person you have been all your adult life changes. When you lose mental capacity you no longer remember what you might previously have wished for. Who is the real “you”?

The various forms of treatment and care are discussed. Those with mental capacity have a legal right to refuse treatment (like artificial feeding and hydration, or antibiotics). When mental capacity is lost the wishes of the former self to refuse treatment can be retained through a carefully written advance decision, (living will). A recurring theme throughout the book is the importance of making clear what your wishes are by using an advance decision. Appendices give examples and a pro-forma for an advance decision specifically tailored to those with a dementia diagnosis – though the strong recommendation is to write one long before that stage is reached.

The book then considers a host of objections to changing the law on assisted dying, and the motives behind the groups opposing change. Dr Brewer is a cavalier guide through the ethical minefield, fearlessly considering areas where others fear to tread. No one escapes his scrutiny – doctors, the palliative care community, religious leaders, representatives of disability groups. Comparisons are drawn with abortion and the holocaust. The book is undoubtedly provocative – but with a purpose – to enable evidence-based discussion of important issues and to expose what he sees as fallacious arguments and hidden biases.

The second part of the book considers the choices both the individual and society have now: Do nothing; Do something; Do it yourself; Do it abroad. The book is careful not to give advice on techniques for taking one’s own life, but does not shy away from discussing why some people feel that this is an appropriate option for them – people like Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge.

At the end of his foreword to the book, neurosurgeon and author Henry Marsh invites you to “Read this book and ask yourself: what will you want for yourself, or for your family, if you are diagnosed with progressive, irreversible dementia? And what right have doctors, priests or politicians to order us how to live, or how to die?” MDMD echoes this invitation. We also suggest that the book would be an excellent gift to doctors, MPs and others with interest or influence in this subject.

It is important to point out that this book is the personal opinions of the author. Clearly there is much agreement with the position of MDMD. However, other than offering comments on initial drafts, MDMD has had no involvement in the production of the book.

NOTE: MDMD has been advised that a few last minute technical difficulties mean that the book may not be available until a few days after the planned publication date of 17th October.

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Pulling “the plug on your life support … because of a message you left on facebook” – Fact or Fiction?

MDMD’s Campaigns and Communication Manager, Keiron McCabe, breaks down the new Clinically-Assisted Hydration and Nutrition Guidance from the British Medical Association

Recently, writing in the Daily Mail, Dr Max Pemberton criticised the new British Medical Association’s (BMA) “Clinically-assisted nutrition and hydration (CANH) Guidance”, for allowing “one Facebook post [to] be enough to bring about your death”. The news follows after Care not Killing, an organisation opposed to changing the law on assisted dying, similarly wrote to the BMA challenging the new guidelines.

Clinically-assisted nutrition and hydration (CAHN), is a medical treatment for someone who has difficulty swallowing or is unable to gain sufficient water orally. It normally involves inserting a tube in the vein and using it to provide a liquid formula feed. It does not include spoon feeding or any other way of providing food and liquid by the mouth.

In his article, Dr Pemberton stated that he had “no ideological objection to treatment being withdrawn from seriously ill patients … [because] the job of a doctor is to alleviate suffering, not extend life unquestionably”. Indeed he even went as far to say that “there are certain situations – suffering chronic pain that cannot be managed and with no hope of reprieve, or being completely paralysed, for example, – when [he] would not want to live and indeed would consider it cruel of others to proactively extend [his] life in any way”.

However, reflecting on the new BMA guidance, Dr Pemberton called it “terrifying”, that “relatives of patients who are so ill [that] they cannot make a decision for themselves and who have no prospect of recovery, [are being advised to] trawl through … Twitter, Facebook and Instagram posts or emails for references to death, to help reach decision on whether to withdraw treatment or switch off life support”.

He argued that as a society, we are all prone to hyperbole and exaggeration online, and that this new guidance risked medics taking a comment on social media out of context and failing to appreciate our genuine wishes. Instead, he recommended that for those who genuinely wish for their life not to be artificially extended, to make an Advanced Decision or appoint someone with a Lasting Power of Attorney.

Dr Pemberton suggested this new guidance was especially troubling, because it follows a trend in which more “complex ethical decisions are now essentially in the hands of medics”, and risks becoming “Euthanasia by Stealth”. In particular Dr Pemberton highlighted 3 instances of this trend. First, a test case in which “a 74-year-old woman in a coma could have her feeding tubes removed” because a judge considered an email to her daughter in which she said ‘I am still haunted by how he ended up… Get the pillow ready if I get that way! Love Mum.’ not a throwaway remark. Secondly, a judgement from the Supreme Court in 2018 which ruled doctors are no longer required to seek the approval of a judge when removing CAHN. Thirdly, a “leaked” “draft guidance” from the BMA in 2018 which indicated that “doctors should be able to end the lives not only of patients who are in a minimally conscious vegetative state, but also patients with dementia or other degenerative diseases if they can’t feed themselves”.

My Death, My Decision advocates for the law on assisted dying to change, only for those who are mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent request. Consequently, the new guidance from the BMA does not impact upon MDMD’s objective. However, we agree with Dr Pemberton and would encourage anyone, would rationally prefer not to continue life extending medical interventions, if they lost capacity, to make an Advance Decision or Lasting Power of Attorney appointment.

This being said, we note Dr Pemberton’s discussion with interest and believe it merits a fuller investigation.

Can a tweet really end my life? Probably not.

The law on decisions about withdrawing CAHN for those without mental capacity is clear. In the absence of any advanced planning, the 2005 Mental Capacity Act and recent 2018 Supreme Court judgement state, any act/ decision for a patient who lacks mental capacity must be made in accordance with their “best interests”.

Hence the key question for any medical professional is whether it is in a patient’s “best interest” to remove CAHN. Moreover, it is a long established legal principle, that someone’s best interests may not in all cases be the extension of life. Indeed, MDMD notes with interest that Dr Pemberton himself identified situations in which he would prefer for his life not to be extended.

Admittedly, the notion of “best interests” is a somewhat elusive concept. Hence, to help doctors, the Mental Capacity Act sets out a number of factors which are designed to guide this assessment.

For example:

  1. Someone must consider whether it is likely the person has some capacity in relation to the matter
  2. If the person is likely to have some capacity, they must be encouraged to participate as fully as possible in any decision affecting them
  3. When the determination reflects life-sustaining treatment, someone must not be motivated by a desire to bring about a death
  4. Someone must ascertain as far as reasonably possible, the person’s past and present wishes and feelings (in particular any written statement made at the time when they had capacity); the belief and values that would be likely to influence the decision; and other factors would the person would be likely to consider if able.

According to the BMA’s new guidance, “decision-makers must start from the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CAHN provided in the circumstances that have arisen”.

Two significant developments are that the BMA clearly say doctors must consider the notion of best interests from the patient’s point of view, and that doctors are ultimately responsible for this assessment. This is significant, because it clearly states that doctors cannot be motivated by their own preferences, but instead solely by the interests of their particular patient. Additionally, it recognises that the notion of “best interest” is subjective and therefore what may be the “best” for one person, may not necessarily be as good for someone else. It is also significant because it clearly states “decisions [about best interests] must be made by the clinical team on the patient’s behalf”. Thus, whilst a family member or friend might be able to advise a practitioner on what their patient’s preference might have been, they are not allowed to make the decision for the patient themselves.

So where does “social media” fall into the mix? As the Mental Capacity Act and new BMA guidance says, even if family members cannot make a decision about best interests, they can help a doctor “ascertain any views, wishes, values or beliefs of the patient”.  For example, they could say that their loved one had previously indicated that they did not want life extending treatment.

However, whilst family members are predominately motivated out of entirely compassionate reasons, the BMA recognises that a minority might have ulterior motives. Hence they encourage as best practice, “seeking views from a number of different people and seeking examples or evidence to back up statements”. In effect a comment on social media may be such an example or evidence.

However, it is important to stress that whilst social media could be an example, it has always been the case that doctors should look to written statements to ascertain their patients views. Further, social media itself is only listed as one example of relevant information written down in the BMA’s guidance. It also suggests something in a diary, a letter or email could be an “example” of something written down, which indicates a preference.

It is also important to stress that in addition to information written down, doctors are advised in the new guidance that they should seek to learn

  1. The nature and length of the relationship with the individual
  2. A description of what the patient was like before becoming ill – work, hobbies, likes, dislikes, what is important to them etc
  3. Any examples of things the patient said or did that might indicate the view that they are likely to have of their current situation
  4. Any religious, spiritual or ethical beliefs the person held and how these might impact on the decision
  5. Aspects of the patients personality that might be relevant to the decision
  6. Whether they believe the patient would want CAHN provided/ continued and their rationale for that assessment

Hence, Dr Pemberton’s claim that we are all one tweet away from an end of life decision, is grossly exaggerated. Doctors are compassionate and caring professionals, who with very few exceptions only ever want the best for their patient, and would obviously exercise common sense when assessing the importance of a comment on social media.

Moreover, even if the stark situation Dr Pemberton’s described did exist, he overlooks the litany of safeguards the BMA recommends for doctors to follow. For example:

  1. A Doctor should seek a second clinical opinion where it is proposed to stop or CANH
  2. “Where there is uncertainty or disagreement about whether CAHN is in the patient’s best interests … legal advice should be sought and an application to the Court of Protection should be made”.

More Detailed Analysis

The test case, Dr Pemberton referenced was Salford Royal NHS Foundation Trust and Mrs P. Although, it was reported in the Daily Mail, Mrs P had her CANH withdrawn because of an email, this is somewhat misleading. At paragraph 39 of the judgement, Mr Justice Hayden listed a number of factors which indicated it was in Mrs P’s best interests to have CANH removed:

  1. The daughter of Mrs P had informed the medical staff early on that her mother would not have wanted the indignity of her present situation
  2. The daughter had been so confident that her mother had expressed this view that she was able to go through years of emails before finding the particular claim in question
  3. Mrs P’s neighbour informed the court that they had both discussed how they would not like to “linger with [an] illness”
  4. The Official Solicitor acknowledged that there was clear and compelling evidence of Mrs P’s wishes.

Whilst it is true that the email had featured prominently in the case, Mr Justice Hayden cautioned that it could simply “be regarded as recording one of those casual throw away remarks that we all make from time to time [making it] ultimately meaningless”. It was only because of the “context” of the email, that he considered it significant.

Turning to the 2018 Supreme Court case of NHS Trust and Others v Y, the Supreme Court clarified that there had never been a law, only an understanding of good practice, that doctors should apply to a court before CAHN can be removed. Hence in cases where families and practitioners in agreement, it may not be necessary to seek judicial permission, if the delay would cause considerable distress to families. However, the court stressed that if it transpires that there is a difference of medical opinion, or lack of agreement from a person with a patient’s welfare, regarding the “best interests” of the patient, a court application “can and should be made”. Hence, the case cannot have  remove a safeguard, since it did not exist in the first place, but merely clarify when additional support should be sought. (Advice similarly reflected in the BMA’s new guidance).

Finally, the leaked draft claim originates from a story featured in the Daily Mail who said that the draft document said:

“Those patients who have a recognised degenerative condition – such as advanced dementia, Parkinson’s or Huntington’s disease – that is likely to result in the patient being unable to take sufficient nutrition orally … Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

A statement which still appears in the final edition of the BMA’s final guidance.

Reflecting on the BMA’s judgement, MDMD’s associate coordinator Dr Colin Brewer said: “It is quite understandable that many people are concerned about progressive neurological conditions such as dementia. Dementia is now the leading cause of death in the UK. However, it would be wrong to think that those suffering from Dementia, automatically lack capacity. Those at the early stage of their condition such as MDMD’s Alex Pandolfo, still have capacity and therefore would not be affected by this guidance.”

Interestingly, the BMA’s guidance stressed that when someone is given CANH it is not normally as a result of their degenerative condition advancing. Instead, it is normally the case that someone is given CANH because of a concurrent, but entirely unrelated, additional condition, which means someone cannot take enough nutrition orally. Reflecting this, the BMA’s guidance say that where someone with a degenerative condition does receive CANH for a different, but concurrent, illness it is advisable for “extensive best interest assessments [to take place, including] best interest meetings”.

My Death, My Decision firmly believes that those suffering from dementia deserve the same level of respect and compassion as anyone else. Thus even if it were the case, which it is not, that “dementia” was the underlying reason why CANH existed in the first place, we believe that if it is in someone’s best interests not to continue treatment, they should not be discriminated against. However, in saying this we are encouraged by the BMA’s recognition of the importance of safeguards for neurological degenerative conditions including advising doctors to seek “a second opinion from a senior independent clinician”.

Therefore will they “pull the plug on your life support … because of a message you left on facebook”? Probably not. But the overriding advice really should be for people to write an advance decision. This clarifies for all concerned what your wishes are. It can also provide a legally binding refusal of CANH under conditions which the person specifies. MDMD would like to see encouragement to write Advance Decisions as part of routine NHS healthcare checks and end of life care and planning discussions.

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Supreme court decision on withholding food and drink in PVS cases

The BBC report on the ruling by the Supreme Court that legal permission will no longer be required to end care for patients in a long-term permanent vegetative state. The decision applies to patients who are being kept alive by artificial means such as tube feeding and hydration. It means that when family and doctors agree, a court decision is not required in order to stop these artificial means of keeping a patient alive.

We welcome this clarification, which upholds an earlier ruling in a lower court. As with our comments at that time, MDMD warns that this should not be interpreted as making Advance Decisions any less important. The ruling does not cover the case when family and doctors disagree, also, an Advance Decision can provide a legally binding refusal of treatment in cases where doctors and family agree to continue treatment, if that is not what the patient has stated they want. Even in cases where everyone is in agreement, an Advance Decision makes these incredibly difficult decisions much easier and safer for all concerned. With an Advance Decision, doctors and relatives have documented evidence of what the patient wants for themselves, so they do not have to try to decide what is in the patient’s best interests, based on little, or incomplete, information of the patient’s wishes.

If you haven’t completed your own Advance Decision, MDMD strongly suggests that you do so as soon as possible, regardless of age or health. See our information and references to other organisations on this here. We also recommend having periodic discussions with your next of kin about your end of life wishes. Some suggestions for how to do this are given here.

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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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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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Court Ruling no longer needed before life-support is withdrawn from patients with severe illnesses

In a landmark ruling a judge has ruled that in future, in decisions concerning the withdrawal of life-support, including artificial feeding and hydration, a judge’s consent is no longer required in cases where medical opinion and relative’s wishes agree that the cessation is in the patient’s best interests.  The story is reported widely, including by the BBC and the Guardian.

MDMD cautiously welcomes this ruling. Medical professionals are generally the best qualified to make such decisions. Good professional conduct would ensure they take the views of relatives into consideration.

However, making a life preserving or a life ending decision for someone unable to make the choice for themselves, in their best interests, is a huge responsibility which is very difficult for both doctors and for relatives. In the vast majority of cases, both are likely to play safe, quite probably prolonging life for much longer that the patient might want.

But what if medics and relatives do not agree? These situations are not covered by this particular ruling. The end of life process can be even more drawn out and even more difficult, involving the courts. The tragic case of Paul Briggs illustrates this.

Far better for every one of us to make our wishes known clearly in advance, to cover possible future situations in which we have lost our mental capacity and are suffering from an incurable condition which means that our future quality of life will never return to a level we would find acceptable. This can be done today by making an Advance Decision to Refuse Treatment (ADRT). Not only is it a legal requirement for medics to follow a person’s wishes expressed in a valid ADRT, but the document gives certainty to both doctors and relatives, that by following what the person has stated, they are doing what the patient wants – surely a huge relief for both groups.

An ADRT can include a refusal of artificial life-support, in situations the person chooses. This can therefore be used to hasten their death, avoiding delay or possible involvement of the courts. Too few people are aware that this is a right we already have, without any recourse to the recent legal ruling.

MDMD urges everyone, regardless or age or health, to make an ADRT to specify their treatment wishes, should they be unable to make a decision at the time. Once complete, copies should be given to your GP and relatives. The ADRT should be reviewed and updated periodically. ADRTs can be completed at no cost, and free personal advice is available if needed. For more information see our page on end of life planning.

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Preferences for care at end of life when mental capacity is diminishing

An interesting scientific study of attitudes in UK and USA towards end of life care and assisted dying in the face of worsening dementia, was published in April 2017 in the peer reviewed on-line journal Plos One:

Clarke G, Fistein E, Holland A, Barclay M, Theimann P, Barclay S (2017) Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States. PLoS ONE 12(4): e0172104. https://doi.org/10.1371/journal.pone.0172104

The full text can be read online or downloaded as a pdf free of charge.

The study was done by researchers at Cambridge University, Department of Public Health and Primary Care and was reported in an article in Cambridge News.

There are many interesting features of the study:

  • Instead of asking a simple yes/no question about someone’s views on assisted dying it asks respondents what they would like for themselves in a series of worsening situations in a fictional, but all too realistic scenario.
  • It covers the situation where the dying person’s ability to make decisions for themselves is impaired. This is of increasing importance now that dementia has overtaken heart disease as the leading cause of death in England and Wales. Many more people die with dementia rather than of it.
  • The survey shows how people have significantly differing views of what they would wish for themselves. It highlights the difficulties of meeting, and safeguarding, people’s differing wishes.
  • One of the significant findings was that ‘there was a high prevalence of preference for “measures to end my life peacefully” when decision-making capacity was compromised’.
  • The data suggests that most of the people who would prefer “measures to end my life peacefully” to “artificially sustained life”, would only prefer this in the later stages of the scenarios presented. The paper points out that by this stage, assisted dying laws like those available in some US states do not provide what people appear to want. (A similar law was rejected by the House of Commons in 2015, but despite that, this is still the approach advocated by Dignity in Dying). These laws allow assisted dying for those who have mental capacity; have a life-expectancy of 6 months or less; and are physically capable of taking life ending medication themselves. The problems with such laws, in the context of the scenarios considered in this survey, are that by the time most of the people who expressed a preference for “measures to end my life peacefully” would want that option:
    • The person no longer has the mental capacity to make the decision.
    • Their life expectancy may be more than 6-months at the time they wish their life to end.
    • By the time their life expectancy is less than 6-months, they may no longer have the physical ability to take life-ending medication independently.
  • A small proportion of respondents (3.9%) chose “measures to help me die peacefully” in the first stage of the deterioration scenarios, where they were “living in care home, missing meal times for unknown reasons”. This proportion rose to 10% by the third stage, which included some short term memory loss and choking, but before mental capacity was lost. (See Fig 3 in the paper). Most MDMD supporters would fall into these categories. One particularly interesting finding is that this view seems more commonly held in the UK than in the USA.

The paper concludes that “it is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity.”

MDMD’s approach to these issues is:

  • Raising awareness of the existing right to refuse treatment, including artificial feeding and hydration, while a person still has mental capacity. (People also have the right to medical support if they choose to stop eating and drinking.)
  • Strongly recommending that people take advantage of the current right to make an Advance Decision to refuse treatment in the event that they lose mental capacity.
  • Campaigning for a law that allows medical assistance to die for those suffering from incurable illnesses that permanently reduce their quality of life below the level they are prepared to accept, provided:
    • They have the mental capacity to make a life-ending decision.
    • The decision is well informed and all alternative options, including palliative care, have been carefully considered and found to be unacceptable.
    • The decision is persistent. (We recommend anyone who believes they would want to be able to take advantage of such a law to write a statement to that effect at the same time as making their advance decision. Such a statement would provide evidence of a long-term, well considered wish for the option of an assisted death. This would give confidence to anyone assessing a request for assistance to die, that the requestor had not been coerced.)

The law we advocate would only help people before they lose mental capacity. We regard this as an important safeguard which avoids the difficulties doctors and relatives would face in making life ending decisions for someone incapable of deciding for themselves at the time. When mental capacity is lost, decision making would continue, as today, to be based on the person’s advanced decision to refuse treatment, and good medical practice to relieve suffering, including double effect and terminal sedation.

The research suggests that significant public education is necessary to help people understand why they may face the difficult choice of when to request an assisted death. An exacerbated form of this choice exists today for anyone considering a medically assisted death in Switzerland. Not only is mental capacity required, but the person must be able to travel to Switzerland and deal with the associated bureaucracy. Alex Pandolfo describes just this dilemma in a recent Mail on Sunday article.

As people become more aware of the unpleasant implications of continuing life into the later stages of dementia, (the story of Joan Cheatle is an example), perhaps the number of people choosing “measures to help me die peacefully” in the earlier scenarios covered in this research will increase. Increasing awareness is certainly one explanation for why older people seem more in favour of assisted dying.

MDMD welcomes this type of research, as it provides detail on the complexities of the issues, stimulates public discussion and raises awareness.

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Avoiding Prolonged Dementia

Dementia is now the leading cause of death in England and Wales. How can we ensure we don’t suffer from it for longer than we wish?

Medically Assisted Suicide is one option chosen by a few. In the UK those choosing this option need to arrange appropriate help in Switzerland, as it is not legal here. This has to be done prior to the point where mental capacity has been lost. MDMD campaigns for this to be a legal possibility in the UK, avoiding the additional bureaucracy, journey, and expense at the end of life to obtain a good death.

Another option is to rely on an advance decision to refuse all treatment once a particular mental capability is lost. This is possible in UK. The option is discussed in an essay by Norman L. Cantor, Emeritus Professor of Law, Rutgers Law School. He has been widely published in legal and medical journals on the topic of the legal handling of dying medical patients. His areas of expertise include Advanced Directives and medical decision making for the mentally disabled.

The essay relates specifically to the law in the USA, but the issues it discusses are much more widely applicable – in particular the issue of whether those caring for a patient who is suffering from dementia but apparently not in distress, might decide that the patient may have changed their mind regarding their end of life care wishes, or may not be suffering sufficiently to refuse some simpler treatments. These questions are very difficult for carers and health care proxies, who may “play safe” by agreeing to life prolonging treatments such as antibiotics, perhaps accepting life-sustaining treatments, when alternative painkillers, without life-sustaining properties, might be more appropriate.

Prof Cantor includes his own Advance Directive which is very instructive on how one might make a clear statement of one’s wishes in this regard. In particular he explains the following:

  • At what point in mental decline his decision applies – “..mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.“
  • Why he refuses treatment -“…intolerable indignity and degradation associated with cognitive dysfunction…“. But also to allow his loved ones to remember him “…as a vital, critically thinking individual…“. And “… to avoid being an emotional, physical, or financial burden on my family and friends, even if they would willingly assume such burdens.“
  • He is clear to maintain his request “… even though I might appear content in my debilitated condition.“
  • The scope of treatment being rejected is clear: “… rejection of any and all life-sustaining means.  This includes simplistic medical interventions such as antibiotics, blood transfusions,…” In the UK, where preventative treatments such as flu jabs are given routinely to the elderly, someone with similar views might wish to explicitly reject these too.
  • In addition to refusing artificial nutrition and hydration he clarifies his wishes regarding assisted feeding – “If I am indifferent or resistant to hand feeding, I do not want to be cajoled, harassed, or in any way impelled to eat or drink.“
  • Finally he considers the possibility that people may think he has changed his mind: “The question may arise as to whether I have had a change of mind and revoked my advance directive.  My wish is that no revocation be found unless I do so while still capable of a considered choice, …“

MDMD thank Prof Cantor for sharing his advance directive publicly – a document that is obviously based on careful informed consideration of the relevant issues. The issues he addresses are important to many of us. Although in the UK an Advance Decision can only be used to refuse medical treatment, an associated advance statement allows a wider description of a person’s views and end of life wishes.

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