DIY Suicide

Two more bad deaths show how the current law is failing

Two recent news stories concerning suicide inquests demonstrate again how the current assisted suicide law prevents people who are incurably suffering having the peaceful death they would choose.

Reports in the Mirror and the Guardian cover the inquest into the death of Ralph Snell, 94, who took a mix of morphine and sleeping pills to deliberately end his life due to severe back pain and insomnia resulting from osteoporosis. The Mirror reports that he had previously tried to electrocute himself with a phone charger.  His wife and son were arrested on suspicion of assisting suicide as they were with Mr Snell when he died. They were later released without charge.

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

It is a disgrace that our archaic law treated a loving family as if they were criminals for nothing more than simply saying goodbye.

A second case, reported in the Daily Post, describes the suicide of Pauline Owen, 67, who suffered from terminal breast cancer which she had been living with for 3 years. She drowned in a canal in North Wales. She had no close relatives. The paper reports that her suicide note explained that she had refused cancer treatment and had planned to take her own life once the illness got out of control. She apologised to those who would discover the note, but blamed “successive governments” for not allowing people to end their own lives in a “controlled and dignified manner”.

The cases highlight many failings in the current law including:

  • Doctors (and others) are unable to hold meaningful discussions with patients about how they could safely and painlessly end their lives. Such conversations are an opportunity to ensure that all possible palliative alternatives had been fully explored before any decision is made about the person ending their life. In this respect, the doctor/patient relationship is currently broken – at a time when it is needed most. Evidence from countries that have assisted dying legislation suggests that, in some cases, simply having the knowledge that help to end their life will be available when absolutely necessary is sufficient for some people to choose to continue living until a natural, peaceful death arrives.
  • Legal access to lethal medication which can reliably cause a peaceful, painless death is highly dependent on the nature of the illness, the situation and the attitude of the doctor. In Mr Snell’s case, medication to control his pain and insomnia was available which proved lethal in excess quantity. However, without professional advice this approach is dangerous as it could lead to a failed suicide, leaving the person in a worse condition. In contrast, Ms Owen appeared not to have that option, so felt compelled to take a much more drastic approach.
  • Caring relatives are put in a very difficult situation – wanting to do the best for the person suffering, but risking arrest and investigation which can take a long time and adds a lot of unnecessary stress at a time of loss and grieving.
  • Those who feel they have no option but to end their lives by using violent methods, or in public places, cause distress to the unlucky person who discovers their body. Ms Owen was fully aware of this and apologised in advance for the distress she knew she would cause to someone – possibly a child. How desperate must she have felt to take this action?
  • People like Ms Owen are taking their lives while they still can, knowing that if they leave it too late nobody else will be able to help them. In many cases, with the right care and with the option of a medically assisted death, they would choose to live longer, possibly until death occurs naturally.
  • Refusal of life sustaining treatment was not an acceptable option in either of these cases. Refusal of treatment is something that is legal and is sometimes used by opponents of a change in the assisted dying law as a reason why the current law does not need changing. This argument was used by Baroness Finlay, in her talk at Bristol University and in evidence in the Noel Conway legal challenge. Cases like these show the weakness of this argument.
  • Organisations like MDMD cannot legally offer advice on best methods to end life. We get many requests from desperate people seeking such advice, but as a campaign organisation that works within the UK law, we are unable to offer advice to people who really need careful professional counselling, nor do we have the relevant skills. Those who are suffering intolerably and incurably need support that is relevant to them and their choices – that can only happen when the law changes.

It is hard to obtain reliable data on how many people choose to end their life due to incurable and intolerable suffering, like the two cases reported here. Research by the Assisted Dying Coalition finds that more than one person per week from the UK has an assisted death in Switzerland and that around 1500 UK citizens are currently members of one of the Swiss organisations which offer Assisted Dying to non-Swiss citizens. Research by Dignity in Dying estimates approximately 300 suicides per year by terminally ill people in England. This excludes those like Ralph Snell and Sir Nicholas Wall who were not “terminally ill“. The true figure for the whole UK will therefore be considerably in excess of 350 people per year. How many more people would like the option of a medically assisted death towards the end of their life? Judging by our opinion poll, up to 93%.

What you can do to help our campaign:

  • Please support us! Become a member and make a financial donation.
  • Spread the word to others and encourage them to join us too. Articles on this website aim to raise awareness of the complex issues involved.
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Rational Suicide in the Elderly: the US perspective

A recent article in the Washington Post describes a group of residents of a retirement community in Philadelphia who hold clandestine meetings to discuss their desires for a rational end of life when they feel the time is right for them. Avoiding end stage dementia is cited as one of their particular concerns. The article is of interest as its theme is close to the heart of MDMD’s campaign. The notion of “Rational Suicide in the Elderly” is emerging as a topic for academic research – see MDMD’s review of a book on this topic published in 2017.

The article quotes Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. “The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common.” Prof Conwell believes that promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.” He believes that this is particularly dangerous with older adults because of widespread ageist attitudes and that as a society, we have a responsibility to care for people as they age.

MDMD agrees with Prof. Conwell that there is a responsibility to care for people (elderly and others) who need care… but only when that care is the “care” wanted by the individual. Similarly, MDMD welcomes improved palliative care for those who find that they can be adequately helped by it. Prof Conwell seems to believe that those wishing a peaceful exit from life, for good reason, and after careful consideration of all other options, should not be helped. To MDMD that is denying them the “care” that they need, forcing them to suffer against their will instead – surely not what a compassionate society would want.

MDMD also agrees that there should be no “obligation” for anyone to feel they “should” chose an assisted death if that is not their wish. However, we should not confuse “obligation” with a well-informed and carefully considered choice of something which becomes socially more available and acceptable. Married people who are unhappy with their partners are not “obliged” to divorce, however many are grateful to be able to choose this option, after careful consideration, now that it is considered socially acceptable, freeing them from the constraints of an unhappy marriage.

MDMD believes that the issue is not about “age” but about unacceptable quality of life due to incurable illness. The MDMD view is that the issues relate to likely future health, quality of life, and the individual’s ability and wish to adapt to their changing situation. These are discussed in our piece on When is a Life Complete?.

The Washington Post article cites a paper on suicide risk in long-term care facilities which reviews the academic literature. The paper concludes “Existing research on suicide risk in long-term care facilities is limited, but suggests that this is an important issue for clinicians and medical directors to be aware of and address. Research is needed on suicide risk in assisted living and other non-nursing home residential settings, as well as the potential role of organizational characteristics on emotional well-being for residents.” In the UK “rational suicide in the elderly” (or better, in the incurably ill who feel that they have unacceptably low quality of life), seems under researched. Work done by Dignity in Dying suggests that 7% of suicides were by people who were “terminally ill”. The percentage of suicides which could be considered to be rational suicides of those whose quality of life is intolerable due to incurable health conditions, is likely to be significantly larger.

MDMD agrees that much more research is needed in this area. It is something that needs to be tracked over time. Informally some people say things like “I don’t want to end up like my mother did” or “I don’t want to end up in a nursing home”, echoing the opinions of the group in Philadelphia. Such statements are very common among MDMD supporters. What will these people do in practice when they reach that stage? Will the aging baby-boomer generation take a different approach to their parents in reality if the law hasn’t changed to make it easier to end one’s life at the time of chosing? Will people just leave it too late?

Understanding and tracking trends is one thing, deciding how society should help such people have a good death is another. MDMD campaigns for carefully controlled legal access to peaceful and reliable means to end life, ideally with the help and counciling of medical professionals, to enable a good death. The current options of refusing life-preserving treatment,  DIY suicides without professional guidance, or one-way journeys to Switzerland are woefully inadequate. We need a better solution which goes hand-in-hand with better palliative care.

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Assisted Dying in the USA, A Good First Step But Room for Improvement

Assisted Dying in the USA, A Good First Step But Room for Improvement

My Death, My Decision’s Coordinator, Phil Cheatle, discusses the recent documentary by Louis Theroux and the implications it raises for the US Oregon Model.

The BBC2 documentary by Louis Theroux, “Choosing Death”, which aired on Sunday 18th November 2018 and is available on iPlayer until May 2019, showed examples of the Oregon/California right to die law in action. The Oregon model, which is now available in seven US states, has proven itself to be an important first step for the right to die. However, as “Choosing Death” demonstrated, it leaves considerable room for improvement in how people can be helped to have a better and safer assisted death. Four apparent weaknesses of the Oregon model, highlighted in the programme, are discussed below.

1) Improved safety of handling lethal medication.

The Oregon law does not involve medical professionals in the supervision of lethal medication. Once accepted as meeting the legal criteria the patient is given a prescription for the medication which they keep at home. Leaving lethal medication in the unsupervised hands of non-medics seems potentially dangerous.

2) Improved counselling and support prior to using the prescribed medication.

The film showed the difficulty of reaching a decision on the exact timing of when to use the lethal medication. This will always be difficult, especially for those with close family who are coming to terms with an inevitable loss. What appeared to be missing was independent professional counselling that might help families reach a shared agreement. This was portrayed strongly in the case of Gus, a 74 year old man with stage 4 pancreatic cancer. Eventually he and his family reached a decision which balanced both Gus’s need not to suffer indefinitely and his family’s need not to lose a husband/father too soon. Both Gus and his family clearly wanted to take the feelings of the others into account.

MDMD believe that professional counselling should be available throughout the process of an assisted death, to help an individual and their families discuss concerns that often feel uncomfortable to talk about. For example, whilst there is concern that families may sometimes pressure vulnerable people to end their lives prematurely, “Choosing Death” demonstrated that the inverse is also true when families feel uncomfortable accepting that a loved one wants to die, and are coming to terms with the loss they will feel.

“Gus, in some cases I know patients in your situation, there is pressure from the family. I’m curious, are you all on the same page?” – Louis Theroux

“Well I would have gone probably a couple of weeks ago. But I told Reyanna [his daughter] in order to give her, her support, that I’d go through Chemo. And so that’s what I’m doing. But I’m afraid I’m going to wait too long for AB15 [California’s Right to Die Legislation]” If you get too sick, you can’t hold anything down. And one of the tenets of the whole programme, is that you’ve got to be able to take the medicine yourself.  – Gus Thomasson

MDMD believe that a dying person needs to reach their own decision on timing, taking the views of their loved ones into consideration, but without feeling pressured. With appropriate training, good consultation should be able to ensure this happens. The eventual decision needs to be based on best medical advice on likely future quality of life, and a full exploration of all palliative care options as the situation develops. The family may need a facilitator to ensure that they understand and respect each others points of view, but do not pressure or coerce the dying person either to prolong or shorten life. Ideally these discussions should be built into the palliative care process, as happens in Belgium.

3) Without the option of a medically assisted death, those suffering from non-terminal medical condition, which reduce their quality of life permanently below the level they can accept, are forced to request unsafe alternatives.

The lack of professional counselling was particularly apparent in the case of Debra, a 65 year old, in a wheelchair, with early stage dementia-like symptoms. Her husband had died 5 months earlier, leaving her with no other close family. Debra’s condition was not covered by the Oregon-style legislation, so she had no professional medical assistance in her decision. Instead Debra contacted the Final Exit Network, (FEN), who provided two unregulated amateur “guides”¹. The guides seemed well-meaning and compassionate and provided verbal advice which helped Debra end her life herself, using equipment she purchased online.

Debra’s situation and death, demonstrates a significant failing in the Oregon care system. Her case raises a number of questions such as: Were all available choices adequately explored? Should people be driven to well-meaning amateurs for information on how to end their lives?

MDMD would like to see people like Debra have the option of a medically assisted death, but only after professional consultation and after it can be confidently said that:

  1. her decision was not the result of a curable depression
  2. her decision was not due to understandable but transient unhappiness due to her recent bereavement
  3. her decision was not something which would change if she received adequate support to adjust to her changed circumstances.

The Final Exit Network clearly provided some form of valuable consultation, in the absence of alternatives. However, end of life situations are invariably complex and require trained professional involvement to help individuals reach the decision that is right for them. It seems that the Oregon model could be improved in this respect by providing an assisted dying option for those like Debra. Whilst MDMD is sympathetic to Debra’s case and is grateful Debra could avoid a traumatic method of ending her life, her reliance upon the Final Exit Network demonstrates the need for a better law in Oregon.

4) Use of intravenous delivery of lethal medication to significantly reduce the time to die and increase the reliability of medically assisted deaths.

The final segment of the programme showed Gus and his family after Gus swallowed the lethal medication which he was prescribed. Although he appeared to be sleeping comfortably, the death took 7.5 hours.

To investigate the time that life-ending oral medication can take to end life MDMD contacted Dr. Erika Preisig, President of Lifecircle in Switzerland which offers medically assisted suicide to foreign nationals. She told MDMD that the longest duration of death by oral assisted dying she was aware of was 26 hours. (A case of pancreatic cancer where a patient can have a lot of stomach water (Ascites), which makes the uptake of the medication very slow.)  Dr Preisig explained that at Lifecircle, whenever possible they use an intravenous method where the patient controls a valve to start the flow of the medication which will end their life. (It is required by Swiss law that the patient self-administers the lethal medication.) Dr Preisig told us that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”. Dr Preisig has assisted 386 people to die using this method. MDMD conclude that this seems a far preferable method than that used in the USA.

Louis Theroux’s documentary raised important questions about the Oregon model. For over 20 years, Oregon has been taken as an example for legislation elsewhere, both within the USA and around the world. MDMD believe it is an important first step, but that several issues remain unresolved by the Oregon-style approach. It is important to discuss these issues and learn from not only the Oregon experience but also other countries such as Switzerland, Netherlands and Belgium in any future attempt at changing the UK law.

There is ongoing debate in both Oregon and Canada as to what improvements may form the next step, particularly regarding degenerative diseases like Debra appeared to have. MDMD watches with interest as this will inform what might one day happen in the UK.

¹Update March 2020: Final Exit Network, (FEN), have informed us that their volunteers are trained and include physicians, nurses, hospice workers and social workers. Anyone applying for their help undergoes a FEN evaluation process before being accepted for support. This was not apparent in the documentary so our reference to ‘amateur guides’ in point 3 is a little misleading. We are pleased to clarify that.

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PRESS RELEASE: A New Documentary Has Explored the Realities of Oregon’s Assisted Dying Model

On Sunday, BBC 2 aired the second installment of Louis Theroux’s new documentary series Altered States. “Choosing Death” followed the journeys of Gus, Lorri and Debra, as they grappled with a choice to end their lives.

Suffering from stage four pancreatic cancer, Gus was eligible to end his life under California’s 2016 End of Life Act. California’s law is modelled on the system and safeguards first established in Oregon in 1997.  Anyone seeking an assisted death must be over the age of 18, be of sound mind, have gained the consent of two doctors, waited for a period of 15 days after an initial oral request to die and be expected to die within 6 months or less. This approach is being made available in an increasing number of US states and will become available in Hawaii in January 2019. The film showed the difficulties faced by those dying, and their families. Deciding the time of death is particularly difficult, balancing the wishes of the dying person to avoid unwanted suffering for themselves and their family on the one hand, and the family’s wish to put off the loss of the dying person for as long as possible on the other. This is always going to be a difficult decision but much rather this (preferably with more independent professional support than was shown in the film), than have to suffer the final stages without the ability to bring it to an end when desired.

At one point viewers watched Gus as he broke down, saying his decision was a “burden on [his] loved ones because they [didn’t] want [him] to go”. “I feel like I’m letting [them] down, when I decide to take that option.” Admitting if he was completely selfishly he would have ended his life many months earlier than he did.

Gus and his family did agree a time for him to die by swallowing the prescribed medication. He died peacefully with his family, however the death took over 7 hours. In contrast, Lifecircle, a Swiss organisation which provides medical assistance to die, uses an an intravenous (IV) method controlled by the patient.

Dr Erika Preisig, President of Lifecircle, told MDMD that the time taken by the Lifecircle method is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all.” Dr Preisig, has assisted 386 people to end their life using this method. It appears to have clear advantages compared to the US method, but still allows the patient to take the final action themself, something required by Swiss law.

Viewers also saw Debra, a 65 year old wheelchair-bound widow, ineligible under Oregon’s law for an assisted death. Debra also suffered from dementia like symptoms – something she knew would lead to an intolerable decline for her. Following the death of her husband she had no close relatives. She sought advice from a group called Final Exit Network, FEN. Their two “guides” were compassionate and offered only advice (they did not provide equipment or physically help with Deborah’s death). With their guidance, Deborah chose to end her life.  

Following its broadcast the BBC 2 documentary sparked an online debate as to whether the UK should change its law. In 2015 Rob Marris MP, had introduced an Oregon style assisted dying bill into Parliament, but had failed to pass it during its first reading, losing 118-330 against.

Phil Cheatle, Coordinator of My Death, My Decision, a UK organisation which campaigns for a change in the law has said:

“Yesterday’s documentary highlighted precisely why My Death, My Decision is campaigning for a more inclusive change in the law. Few won’t have sympathised with Debra’s story. Despite possessing a clear and settled wish to end her life and the capacity to make such a choice, the law did not allow her the help and support she needed to end her suffering. To respect someone’s dignity, to uphold their autonomy and to act compassionately, the law must allow assistance for those whose medical conditions give intolerable and incurable suffering regardless of their life-expectancy.”

“It is up to society to provide as much help as possible, but up to the person themselves to form their own view of whether this is sufficient. With the right support some can and do live fulfilling lives, despite the very difficult medical situations they endure. However this is not always possible. For those who, after careful and informed consideration, decide that their quality of life is permanently below the level  they can accept, the law needs to change.”

“The film raises questions about unregulated well-meaning amateur groups like Final Exit Network. MDMD believes that a legal, regulated, professional assessment and support process would be a much safer way to ensure that people like Debra were making the right choice for themselves, having carefully considered all the options, before having a medically assisted death if that is their well-considered and persistent wish.”

“Louis Theroux’s documentary highlighted the empowering choice those who are within six months of dying possess in California. For those who are of sound mind and either terminally ill or incurably suffering, it is time for the UK to offer that choice as well.”

The final episode in Louis Theroux’s series “Take my Baby” will air on Sunday 25th November at 9pm.

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Video Evidence helps in Rational Suicide Inquest

The BBC reported the inquest into the death of Beryl Taylor(70) who died in Rattlesden, Suffolk, in July 2016. The case is also reported in more detail in the East Anglian Daily Times.

Mrs Taylor’s husband had been arrested on suspicion of assisted suicide, and later murder. He was subsequently released. The coroner made a legal conclusion of suicide and that she had made the decision of her own free will.

The court heard that after police investigation and consideration by the Crown Prosecution Service, it was decided it would not be in the public interest to proceed further. This appears to be in line with the Director of Public Prosecutions guidelines on assisted suicide. It is not clear why the possible murder charge was considered and later dropped. The DPP guidelines apply to assisted suicide but not to the even more serious offence of murder.

The case is interesting as the couple clearly researched and discussed the situation carefully before Mrs Taylor took her life and even agreed to take the unusual step of making a video recording of a statement by Mrs Taylor, and her suicide.  Mr Taylor cooperated fully with the police, having anticipated their investigation. This behaviour, accompanied by the video evidence, no doubt helped the police immensely in their investigation, and perhaps helped ensure that charges were not pressed.

Detective Sergeant Michael Gwyn told the court that when police officers arrived at the Taylor’s house they were given a ‘do not resuscitate’ notice by Mr Taylor.

“He described the incident had been recorded on camera and provided police with the camera,” DS Gwyn went on to say 
“Because of the evidence that was seen on the camera, Mr Taylor made it clear he knew his wife intended to take her life and had to some extent facilitated that.”

It is interesting that DS Gwyn told the court that “… on reviewing the camera evidence he was arrested on suspicion of murder”, yet this charge was later dropped.

The inquest heard Mrs Taylor had read a statement to the camera before taking her own life. Assistant coroner, Kevin McCarthy said: “It makes clear to me that she has reached the decision to end her life and because of her disabilities, which were quite profound, … This is a woman who has reached the state in her existence where her quality of life is non-existent and she had decided life was not worth living.”

The court was told Mrs Taylor suffered from a range of medical conditions including fibromyalgia, allergies, chronic fatigue syndrome and multiple chemical sensitivities. None of these are terminal illnesses so we can be confident that her life expectancy was longer than 6 months. This means that she would not have been helped by the type of law proposed by Rob Marris in 2015, and argued for in the Noel Conway case. (Should such a law eventually be passed in the UK, it would however be a very welcome first step.)

The case seems to show that it was a combination of incurable medical conditions which reduced Mrs Taylor’s quality of life below the level she could accept. The NHS website says “although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.” However, when coupled with other conditions, Mrs Taylor found her condition impossible to live with.

My Death, My Decision coordinator Phil Cheatle said:

“This is a tragedy which shows how some deaths are extremely bad, not only for the dying person, but for those they leave behind. Losing a wife is bad enough in itself, but going through a police investigation and risking a lengthy jail sentence is intolerably cruel for a grieving partner.”

Mrs Taylor clearly felt as though she had no other option than to end her life. She did so in the knowledge that her decision could result in her loving husband serving a prison sentence. Her decision raises a number of unanswered questions: Would Mrs Taylor have delayed her death if a medically assisted option existed? Would an open-minded counselling session have dissuaded Mrs Taylor from ending her life? Would better care, (despite her husband’s best efforts), have made her condition tolerable.

In Mrs Taylor’s case these questions will remain unanswered. The primary witness is now dead. The opportunity has been lost. Doctors currently fear any conversation about assisted dying may open criminal liability, thus counselling is not currently a realistic option. Nor, as a recent report found, are doctors given sufficient training to confidently engage in difficult conversations about death.

Our current system is demonstrably unsafe and lacks sufficient compassion. This case echoes concerns expressed about other cases where people have ended their lives themselves or with the help of others, cases like pharmacist Bipin Desai, Ian Gordon and Sir Nicholas Wall for example. The law needs to change to prevent more tragedies like these.

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Lady Lucan Coronor’s Suicide Verdict – Fear of Parkinson’s Disease

The Telegraph reports that the coroner investigating the death of Lady Lucan in September 2017 recorded a verdict of suicide. Lady Lucan is reported to have “self-diagnosed” as having Parkinson’s disease, and to have previously discussed assisted suicide with a friend, should they develop a terminal illness or a degenerative disease. There was no suggestion that her suicide was “assisted”, as she died alone by taking “a cocktail of drink and drugs”.

This is another tragic end of life, lonely, probably too soon, and without proper medical discussion and professional support. It results from the lack of an open, legal and medically assisted suicide process in the UK. This case reaches the news as it concerns a high profile figure, like that of Sir Nicholas Wall. We don’t know how many more similar cases there are within the wider population. Research suggests that over 7% of suicides are by people who are in the narrower category of “terminally ill”. Neither Lady Lucan nor Sir Nicholas Wall would fall into that category so the true percentage must be considerably higher.

MDMD sympathises with those, like Lady Lucan, who, after careful consideration, and in the face of incurable illness, feel that their life is complete, and that taking their own life is their best option. But, unlike those who rejected a change in the law, we do not consider taking one’s own life, without professional consultation and assistance, to be acceptable. We campaign for a better law. The various approaches people like Lady Lucan may consider all have serious disadvantages. With appropriate assisted dying legislation, in conjunction with good elderly and palliative care, Lady Lucan might have lived for much longer, in the comfort of knowing that if things got truly unbearable, or she was close to loosing her mental capacity, she could request medical assistance to die. Our challenge, as a country, is to bring about such legislation – broad enough to help people reaching the end of their life, like Lady Lucan, have the good death they desire, but safe enough to prevent abuse.

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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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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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Should a right-to-die extend to those with psychiatric conditions?

The BBC report the suicide and background of Canadian Adam Maier-Clayton who took his life in April 2017, aged 27, following a history of psychiatric illness including a condition that left him in extreme pain. The video which forms part of the report shows Adam and his parents clearly explaining their point of view, together with some opposing opinions.

Adam’s illness was diagnosed as Somatic Symptom Disorder, “a psychiatric condition characterised by physical complaints that aren’t faked but can’t always be traced to a known medical illness”. Adam experienced “crippling physical pain throughout his body” which he described as like being “burned with acid”.

Adam believed his condition to be incurable, following years of trying different treatments. He wanted to have a medically assisted death, but although right-to-die legislation was introduced in Canada in 2016, this only covers cases where death is “reasonably foreseeable”, so excludes people like Adam’s.

A young person taking their own life, perhaps especially when done so for psychiatric reasons, seems far more tragic to most of us than when someone chooses a medically assisted death after living a reasonably long life, which they now feel is complete, due to worsening and incurable physical illness. One of the difficulties, with cases such as Adam, is that it is unclear whether the patient will recover. A younger person can generally be expected to live longer to “see what happens”. Doctors naturally want to play safe, pursuing all possibilities of the patient returning to an acceptable quality of life. That is the argument given by critics of Adam’s choice in the BBC article. However what the article fails to clarify is what the evidence is.

We hear much of “evidence-based medicine”, but where is the evidence in cases such as this? For example:

What proportion of people with similar conditions to Adam eventually regain an acceptable quality of life (either by recovering or by learning to cope with their symptoms)?

How long, on average, does it take for them to regain acceptable quality of life? What are the longest and shortest periods one could reasonably expect?

How bad can the symptoms of people in similar situations get? For example, might Adam, had he decided to stay alive longer in the hope that his condition would improve, run the risk of losing the mental or physical ability to end his life if he later decided that his life was intolerable? … or might he run the risk of being sectioned, “for his own protection”, such that he lost his freedom to take his life if he wished? …and if so, for how long?

If psychiatry is unable to give honest and informed answers to questions like these, “evidence-based medicine” is impossible. Doctors presumably should then admit that they don’t know, and should accept that their opinions are little better than those of the patient and his family.  This is particularly important in cases like Adam’s which have proven themselves resistant to all treatments which might have helped. Surgeons and physicians generally accept the decisions of patients who decide against very demanding or unpleasant treatments, particularly if the chance of improvement is low or the extra life expectancy would be small. In a similar way we need to appreciate the limits of what psychiatry is able to achieve, despite is best efforts, and the incurable suffering some patients have to endure as a consequence.

If, on the other hand, the questions above can be answered to some extent, then the patient, with the help of their doctors, has the potential of reaching an informed and carefully considered choice. They can weigh up the chances of returning to an acceptable life, against the experienced pain and difficulty of the current and anticipated condition and the risk that they may never recover. Not an easy decision for anyone. Something that needs time and careful discussion with all involved. What is striking in Adam’s case is that both his parents seem strongly supportive of his decision and believe he should have had the option of a medically assisted death. This suggests that Adam’s decision was based on careful weighing up of the best available evidence.

Some may not agree with Adam’s decision. But in what way do they, as bystanders who don’t have to experience Adam’s condition, have a right to insist that he suffers in a way he finds intolerable for some indeterminate (and presumably long) period of time – possibly for the rest of his life? Does Adam’s situation differ significantly from Omid’s in this respect? (Omid suffers from an incurable physical condition that is not terminal, but reduces his quality of life permanently below the level he can accept.)

Medically assisted suicide is obviously a very last resort, particularly in psychiatric illness. This is reflected in Belgium and Holland where although it is legal, a very small proportion of the total assisted deaths occur in psychiatric cases. However, allowing patients the chance to at least discuss a medically assisted death as one of their options quite often means that they decide not to take it up or postpone it and perhaps try different treatments. The alternative to not being able to discuss it as a possible option can be some extremely distressing and sometimes botched DIY suicides that are much more traumatic for the patient and distressing for the family, than an assisted death.

Further discussion on assisted dying in psychiatric cases can be found in our article regarding depression (particularly the final sections). An interesting discussion of mental illness and assisted dying by a Canadian bio-ethicist is available here. An academic book of papers, mostly by (US) psychiatrists dealing with rational suicide in the elderly is reviewed in detail here. Although it focuses on the elderly, many of the issues are relevant to cases like this, particularly those relating to what steps should be taken by psychiatrists to prevent someone ending their life.

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Spectator article on suicide workshops

MDMD could hardly ignore a recent article in the political weekly The Spectator. Its author, Jessica Berens, attended one of Dr Philip Nitschke’s ‘£50 suicide workshops’, along with ’80 or so men and women, grey-haired and crepe-soled’ who break for tea after Dr Nitschke has described and demonstrated various DIY techniques ‘in much the same manner that a member of the Women’s Institute might present a talk on the best way to make marmalade’. An MDMD supporter who has also attended one of these workshops agrees that the atmosphere was relaxed and quite jolly. Most of the participants seemed in reasonable health and presumably wanted comforting insurance against future horrors rather than early relief from present ones.

MDMD’s policy is not to advise on techniques for ‘DIY’ suicide, nor to put links on our website to reliable information sources. (Our explanation of available end of life options is here) It is a debatable policy. On the one hand, we believe people need professional advice and consultation before receiving assistance. Such advice should ensure that all possible alternative options have been considered thoroughly before suicide is seriously contemplated. MDMD is unable to offer this. We also want to stay on the right side of the law, even though we disagree with it.

On the other hand, when someone has decided, after careful informed consideration, that their life is complete and they wish to end it, how should they do it in the least traumatic, most reliable way? They need reliable advice, support, and assistance – things that are illegal in the UK today. There are many bad ways to be avoided. The “Swiss option” is perhaps the least bad, but this requires significant bureaucracy and travel, as well as expense which may not be acceptable.  By the time someone has rationally decided that they are ready to end their life they are unlikely to be able to carefully research methods on the internet, procure equipment etc. Instead, someone who believes this option may be appropriate at some point in the future, is well advised to make plans while they still can. It is this motivation that leads people to Dr Nitschke’s workshops. The need for workshops like this is a symptom of the lack of legal provision to offer appropriate end of life help when someone’s idea of a good death is an assisted one… the analogy with back street abortions prior to the 1967 Act legalising abortion is stark.

Many of the subsequent comments about the Spectator article were favourable. The main exceptions came from the mother of a 26-year old who naturally blamed Dr Nitschke for his death, even though – as several others pointed out – her son was evidently so determined and indeed death-obsessed that he could easily have found similar or alternative methods in the many other suicide websites and chat-rooms that the Internet now provides. Some of those websites recommend methods that are much more unpleasant than those discussed in the workshops and carry more risk that the end result will not be the death of the body but only the death of much of the brain, leading to some sort of persistent vegetative state.

When the old Voluntary Euthanasia Society (now Dignity in Dying) agreed, in 1978, to publish the world’s first DIY suicide guide (which almost overnight caused a quadrupling of membership) it also agreed that it would only post it to members of at least three months standing. Then as now, it could not guarantee that no unhappy teenager would apply for a copy and it worried about it, but the British suicide rate actually fell following its publication. Social and political events, notably unemployment  and drug abuse rates, especially among the young and unskilled, have a much bigger influence on suicide rates than anything that Dr Nitschke does or writes.

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