USA

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.

Read more

New Jersey Legalises Assisted Dying

On 12th April 2019 the Governor of the US state of New Jersey, Phil Murphy, signed a bill into law which allows assisted suicide for those who have mental capacity, are terminally ill, and are within six months of dying. The law is based on a similar law in Oregon which has been in force for over 20 years.

New Jersey is the 8th US state to pass this form of legislation, following Oregon (1994); Washington (2004); Vermont (2014); California (2016); Colorado (2016); Washington DC (2017) and Hawaii (2018). The addition of New Jersey, brings the US population with access to assisted dying to almost 70 million – over 20% (1 in 5) of the total population of the USA. (Assisted dying is also permitted in Montana, though this is by virtue of a court ruling rather than legislation.)

In signing the New Jersey Bill, Governor Murphy, a Catholic, is quoted as saying:

“After careful consideration, internal reflection and prayer, I have concluded that, while my faith may lead me to a particular decision for myself, as a public official I cannot deny this alternative to those who may reach a different conclusion.”

“I believe this choice is a personal one and, therefore, signing this legislation is the decision that best respects the freedom and humanity of all New Jersey residents.”

MDMD applauds Governor Murphy for taking this position and sharing his reasoning. It was clearly a difficult personal decision for him, but in putting respect for the autonomy of others above his personal beliefs he demonstrates an important principle that others of faith should follow. His decision also shows compassion for those who need to use this law to enable them to have what for them is a good death.

As an organisation, MDMD welcomes supporters of all faiths and none. We respect the values, choices and traditions of others to make their own end-of-life decisions for themselves. We plead for the type of reciprocal respect and understanding which Governor Murphy has shown in passing this legislation. Unfortunately, many religious leaders and organisations do not share Governor Murphy’s tolerance of other people’s views. Two recent examples of this, concerning the renewed attempt to change the law in Scotland, appear in articles published by the Scottish Catholic Observer and the Christian Institute. It is unfortunate that these bodies fail to show the compassion and respect demanded by 93% of the UK population – a figure which demonstrates just how out of touch the views of those opposed to change are.

Although MDMD welcomes the New Jersey law as a first step towards a more humane approach to dying in the 21st century, we believe that the “Oregon model” approach has significant limitations. Most significantly the 6 month terminal illness criterion excludes many people who quite rationally long for medical assistance to die. In addition, there are concerns over the support and counselling given to those who choose to make use of the law, and the process by which assisted dying drugs are administered. These issues were demonstrated in a Louis Theroux documentary shown on BBC2 in November 2018. MDMD are pleased that these issues are now actively being reviewed in Oregon.

Despite these reservations, the new law in New Jersey is another clear sign of the progress being made by right-to-die campaigners around the world. Progress that, we hope, will one day reach the UK – which is looking increasingly backward on the issue.

Read more

American Family Physicians Association (AAFP) changes position on medical aid in dying

In October 2018 it is reported that the American Academy of Family Physicians (AAFP) broke ranks with the American Medical Association (AMA) by adopting a position of “engaged neutrality” on assisted suicide and euthanasia.

At its Congress of Delegates in New Orleans the AAFP, the second largest component society of the AMA with more than 131,400 members voted to adopt a position of “engaged neutrality” and to reject the use of the terms “assisted suicide” or “physician-assisted suicide”. “Through our ongoing and continuous relationship with our patients, family physicians are well-positioned to counsel patients on end-of-life care, and we are engaged in creating change in the best interest of our patients,” said the AAFP president Michael Munger, a physician from Kansas.

This is important in the UK because the BMA radically opposes assisted dying, whereas the BMJ has come out in favour of putting it to the vote, to show the true picture amongst British doctors.

Often it is the minority groups such as ‘Care Not Killing’ which shout the loudest. I once heard a story of a Methodist Minister trainee student who wrote his sermons out in full with notes in the margin. On one occasion one of his colleagues happened to come upon one of these sermon transcripts and was amused to read in the margin ‘weak point, shout louder’.

In the UK. nurses are the largest group of care providers for the terminally ill, so it is not surprising that following an extensive and detailed consultation process with their members, the Royal College of Nurses moved in 2009 to adopt a neutral stance in relation to assisted dying for people who have a terminal illness.

It is time the BMA followed suit and stopped giving politicians an excuse against seeing reason and voting for legislation allowing Assisted Dying for the terminally ill and those suffering long term incurable health conditions which have reached a stage of relentless suffering, provided this is their own persistent wish.

Read more

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.

Read more

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.

Read more

Extending the Oregon Right to Die Law. Evidence of a “Slippery Slope”?

A recent article in the Washington Post describes moves in Oregon, USA to try to extend their Death with Dignity Act to include help for those suffering from degenerative diseases such as Motor Neurone Disease, Parkinson’s and Alzheimer’s. Related discussions are taking place in other US states and in Canada. For example, a recent paper published in the academic journal Geriatric Nursing reports that 83% of a sample of elderly care nurses in Quebec were in favour of extending the Medical Aid in Dying legislation to include incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity. In Ontario a recent legal case indicated a broader interpretation of the “reasonably forseeable” death requirement in their Medical Aid in Dying legislation, allowing it to cover someone with chronic osteoarthritis. In interpreting the law the judge explained “the natural death need not be connected to a particular terminal disease or condition and is rather connected to all of a particular person’s medical circumstances.”

The Oregon law has been in effect for 20 years without extension, but it is limited to those who have a life expectancy of six months or less, and who have sufficient mental capacity to make a clear life-ending decision. MDMD has consistently argued on behalf of those who are suffering unacceptably and incurably, but whose life expectancy is longer than six months. We are particularly concerned about those, like Alex Pandolfo, who suffer from dementia, which can be very unpleasant in its final stages, and is now the most common cause of death in England and Wales.

The Oregon law has been used as a model for right to die legislation in other US states, such as California and Colorado. An attempt to use the Oregon model for the UK was rejected by the House of Commons in September 2015. One of the arguments used by those who oppose even this limited form of right to die legislation, is that it would be the start of a “slippery slope” leading to much broader legislation in future. Is the current debate in Oregon and elsewhere evidence for this?

MDMD think not. However, it may be the next step along a carefully considered and difficult path towards a safe, compassionate and workable approach to dying in our modern world of advanced medical sophistication, where people live for much longer, but where more people are enduring a long period of suffering before their eventual death.

It is helpful to look back at other changes in legislation to see how they have been introduced. In 2018, in the UK, it is appropriate to consider the right to vote. This year we celebrate the 100th anniversary of women first gaining the right to vote. But not all women. Only those who were “over the age of 30 who were householders, the wives of householders, occupiers of property with an annual rent of £5, and graduates of British universities”. It was another 10 years before all women over 21 had the right to vote, bringing them in line with men, and not until 1969 when the voting age for both men and women was reduced to 18. Was this a “slippery slope” that should have been prevented? In 2018 it would be a brave person to suggest that it was. Rather, it was a cautious, step-by-step, considered, and hard-won campaign for equality and representation.

Another example of developing legislation is the introduction of the “horseless carriage”. In the early years, (1865-1896), for public safety, self-propelled vehicles had to be preceded by a pedestrian waving a red flag or a lantern. Since this was relaxed, cars (and their drivers) have caused much loss of life and serious injury. They still do. Importantly, the lives lost are not those of incurably suffering people who, after careful consideration of their likely future and the available alternatives, have decided that their best option is for their lives to end. Instead the lives lost in “road casualties” are predominantly those of healthy, active, often blameless, people whose lives are tragically cut short.  Although a succession of legislative changes have improved car safety considerably, the risk is still there. Instead of banning cars, society accepts this risk, killing on average 5 people per day in Great Britain in 2016, and seriously injuring 66 people per day.  This risk is far greater than even the worst fears of those concerned about the risks of possible abuse of any proposed assisted dying legislation. Was allowing self-propelled vehicles, and subsequently weakening the restrictive red-flag law a slippery slope that should have been resisted in order to protect vulnerable people: passengers; pedestrians; cyclists etc.? No, a balance was found which society deemed acceptable. Many laws were gradually introduced to improve road safety when the risks were found to be unacceptably high: driving tests; vehicle safety checks; compulsory wearing of seat belts; drink-drive limits etc.

Many analogous situations exist, for example legislation concerning gun control, where public safety, in particular protecting “vulnerable people“, has to be balanced against freedom of choice for the individual.

In considering what assisted dying legislation to adopt, and how any first step might later be extended, it would obviously be preferable to get the “right” law in the first place. In practice, in some jurisdictions, a cautious, step-by-step approach may be required. It is clear to MDMD supporters that the current Oregon law doesn’t go far enough, as it leaves many who suffer incurably and intolerably without the compassionate assistance to die they would like. We welcome the debate to broaden the Oregon law and wish the campaigners there success. We hope that the UK will learn from the Oregon experience and adopt a broader initial step, taking into account experience from other countries such as Switzerland, the Netherlands and Belgium.

What is also clear is that talk of “Slippery Slopes” is not appropriate in a serious discussion of how to introduce legislation which is both compassionate, in allowing people the options they want to avoid suffering at the end of life; and safe, in its protection of vulnerable people.

Read more

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.

Read more

Book Review: Rational Suicide in the Elderly

Rational Suicide in the Elderly: Clinical, Ethical, and Sociocultural Aspects

by Robert E. McCue (Editor), Meera Balasubramaniam (Editor)

Springer 2017 (8th Oct 2016)

An entire book devoted to the better understanding of Rational Suicide in the Elderly was essential reading for MDMD (Our name was formerly SOARS: Society for Old Age Rational Suicide). We were pleased to see that SOARS gets mentioned on the first page of the introduction and the SOARS website is extensively quoted in Chapter 6 – an indication of the influence of our campaign.

The book is a collection of 15 papers written mostly by psychiatric academics working in the USA who discuss the notion of rational suicide in the elderly and what they see as the best practices for treating patients exhibiting a rational wish to die. The psychiatric viewpoint is broadened a little with contributions from those in departments of psychology, philosophy and oncology. Two of the 18 contributors come from the UK and two from New Zealand. Surprisingly and unfortunately there are no contributions from medical professionals in the Netherlands, Belgium or Switzerland, where much practical knowledge and understanding of rational suicide is developing as those countries have the most far reaching assisted dying legislation in the world.

Many of the authors carefully question the notion of “rational suicide in the elderly”. How old is elderly? What is a “rational” decision? Can suicide ever be rational? But the book’s prevailing view is that, despite the ethical and philosophical considerations, there do exist people who are suffering from an incurable medical complaint, which renders their life no longer worth living in their opinion, who are not terminally ill, nor mentally ill, are not suffering from a curable depression, but have a desire to hasten their death. This is perhaps best demonstrated in a quote from the book’s final paragraph (in a chapter that carefully unpicks and rejects a lot of the standard justifications for “rational suicide”): “It seems to me obvious that it is sometimes better – kinder, more decent, dignified, compassionate – to bring an end to human suffering than to let it continue.”

Many of the issues considered by the authors in developing an understanding of “rational suicide in the elderly” are the same as those raised by SOARS supporters in the discussions that led to the organisation both changing its name from SOARS to MDMD, and broadening its objectives beyond “Old Age”. (And prior to that, in our consultation on the “When is a Life Complete?” document.)

Given that people exist who rationally believe suicide is their “best” option, the book attempts to give guidance to psychiatrists who encounter such people as “patients”. It is here that the book seems to get into several difficulties.

It is implied that the issue of rational suicide in the elderly is only about those who end up as psychiatric “patients”. The presumption is that a true rational suicide would successfully have done the job him or her self, without ending up in the psychiatrist’s consulting room. The fact that they have instead become a patient leads to the possibility that they may be seeking “help” to overcome their suicidal thoughts. Although this may be true in some cases, there are much wider issues, most notably the case of people who “successfully” choose rational suicide without any counselling.  Is it the correct attitude for psychiatry, or the wider medical profession to take – to accept people rationally ending their life, without professional counselling; alone; without assistance; and often in tragic circumstances? MDMD think not, we would like to see two forms of help available to all potential rational suicides: first, independent counselling to ensure that they are making the correct decision for them, at the right time; and second, legal medical assistance to die within agreed safeguards. It is only in the knowledge that medical assistance to die is a possible outcome, that people will intentionally seek medical help with their rational suicide decision. Without that possibility, the rational person, wishing to hasten their own death, would avoid discussing their plans with their doctors for fear of either being “treated” until they gave up their desire to end their life, or worse, being physically prevented from doing so, possibly including enforced hospitalisation, as a form of “safety planning”. A third risk for those in the UK considering going to Switzerland for medical help to die, is that a full discussion with their doctor may result in the doctor refusing access to medical records needed by the Swiss organisations who help foreigners. In these areas, the doctor patient relationship appears to be broken.

There is an irony here. Only with the option of legalised medically assisted suicide will potential rational suicides wish to consult their doctor. But once they do, it is likely that their suicide can be delayed and in some cases prevented, while ensuring that more people have the “good death” they should be entitled to. Much better a peaceful medically assisted suicide at a carefully considered “right” time, than a traumatic, lonely unassisted suicide, done too early while the person still can. The book does not consider these benefits of assisted suicide and therefore misses many of the issues that need to be discussed in a full coverage of rational suicide.

One important observation it does make is that the reasons given by people seeking rational suicide who are not considered “terminally ill”, as their life expectation exceeds six months, are identical to those who are terminally ill and receive assisted suicide in US states where it is legal. This usefully highlights why the 6 month criterion is so inappropriate.

Once a potential rational suicide is accepted as a “patient”, psychiatrists are in a very awkward position. On the one hand it can be very difficult for a medical professional to accept that an assisted death or worse, an unassisted suicide, is actually the best option for the patient. There is a tendency to see this outcome as a failure. This attitude is something that MDMD thinks needs to be overcome as society better understands the true nature of rational suicide as being the best outcome for some patients. A more pressing concern, especially in the USA where the book is focused, is on possible legal repercussions from relatives of a suicide who might claim that a psychiatrist involved had been negligent. An entire chapter is devoted to “Rational Suicide and the Law”, and several other chapters stress the importance of “risk assessment”, “safety planning” and “preventing impulsive behaviour”. For both these reasons it seems clear that professionals helping those who wish to actively hasten their death need some form of emotional and legal protection to do this difficult work effectively.

The main approaches suggested for working with people seeking a rational suicide are various talking therapies such as “Motivational Interviewing” to help the person understand the motivations behind the desire to end their lives and to expose and build on any uncertainties and desire for change the patient may have. Authors recommend applying these techniques non-judgementally, with respect for the patient’s views. While these approaches may be successful in preventing suicides, they run the risk of undermining a patient’s choice, possibly making them feel guilty in wanting a hastened death. It seems essential to ensure that the person has properly considered all options, including that they may be able to adapt to changed capabilities, but where should this dialogue stop? At what point should the psychiatrist stop challenging the patient and simply accept their view, even if they disagree with the patient’s conclusion? Many of the authors appear to have an attitude that suicide should be prevented if at all possible. The realisation that a hastened death may actually be the best option for some patients sits uncomfortably with what they are legally and ethically bound to do. A re-evaluation of these legal and ethical limitations seems necessary, but the book does not explore this.

Several authors refer to spiritual or religious belief as helping people come to terms with their dependency and changed circumstances. A full chapter is devoted to Christian objections to suicide. This may be appropriate for a USA audience, but in the UK only 59% of the population consider themselves to be Christian, with 25% of the population claiming no religion – a proportion that has grown by 10% over the preceding 10 years, growing in all age categories. (ONS report based on 2011 census data.) The reducing significance of religion is hinted at in a chapter about the attitudes of the “baby boomer” generation which concludes: “… a significant minority will consider suicide to be an intelligent and rational act in the face on an irreversible worsening in the quality of life.”

The penultimate chapter suggests that one or two doses of psychedelic drugs such as psilocybin might be an effective “treatment” for those who have lost meaning in life, possibly to the degree that suicide could be prevented. While this may suit some people, and may indeed reduce suicidal ideation, we must question the extent to which rational suicide is an illness to be treated with drugs that alter the person’s personality, as opposed to respecting the person and their personality as they are, and accepting rational suicide as it purports to be – a rational evaluation of one’s likely future quality of life leading to a decision that the person would be better off dead.

While several authors acknowledge that in some cases a hastened death would be best for the patient, the practical advice is all about attempting to alleviate symptoms, especially in cases where the patient can be helped to find some new reason for living. An important issue that is not tackled is how to help someone decide that their death should be hastened – or rather to corroborate the decision that the person has already reached. Of course, without the necessary law, the decision is irrelevant as the psychiatrist cannot assist. But advice from the psychiatric community is necessary in order to draft appropriate, safe and workable laws. A good law would enable more appropriate action in cases where, after full consideration with professional help, the patient is convinced that a hastened death is in their best interests.

Although the book has the serious limitations noted above, it is a step in the right direction. Many difficult issues are carefully analysed in commendable depth. Psychiatry (and the law) has a long way to go before it can be said to fully support the real needs of people whose quality of life is permanently, unacceptably low, to the point that they consider hastening their death. But at least the issue of rational suicide for people with intolerable quality of life, due to incurable medical conditions, is now firmly placed on the psychiatrist’s couch.

Read more
Daily Mail Logo

Euthanasia linked to Organ Donation

The Daily Mail 5/9/16 reports on a paper published in a medical journal which calls for allowing euthanasia to enable organ donation in the case ‘where it has been argued through the courts that a patient in a permanent vegetative state is going to have clinically assisted nutrition and hydration withdrawn, with the inevitable consequence of death, and causing dessication of the organs such that they are no longer able to be donated.’

This is actually a very narrow condition, however, it raises alarm bells for some people, perhaps because they fear that the principle might be easily extended. The involvement of a court decision is paramount. The court would have a much easier decision to make if the patient had previously completed both an organ donor card, and an Advance Decision – in particular one which requests assisted dying in hopeless circumstances such as this. MDMD strongly recommend everyone to complete an Advance Decision.

Read more
The Economist logo

What is “Unbearable”?

The Economist 6/8/16 reports research done in USA which interviewed patients aged over 60 who were admitted to hospital suffering from serious illness. They were asked to compare various symptoms to death to say how it compared to death. Half or more thought incontinence, being unable to get out of bed, or relying on a breathing machine were all “fates worse than death”. Over 30% thought living in a nursing home was worse than death.

Although a small scale study, MDMD agrees with the Economist that this type of research is really important as it begins to show real attitudes towards living and dying for those who are close to that point themselves. None of the conditions tested were necessarily “terminal” illnesses.

The Economist article is available here. Though you will need to apply for a free subscription.

Read more
Privacy Policy | Conditions of Use | Press Office
campaign in parliament
champion legal cases
broaden the debate

My Death, My Decision is a company limited by guarantee, registered in England company number 11758121 and located at Unit A 39 Moreland Street, London, EC1V 8BB.