Sixth Annual SOARS Lecture (London - October 23, 2015)
This lecture was given by Phil Cheatle, who has become the new SOARS coordinator since Michael Irwin stood down at the End of August 2015.
Phil's talk on "When is a Life Complete? What Next?" started by discussing the origins of the concept and the work that has been done within SOARS over the past year to formulate our own definition. By using conceptual graphs of 'quality of life' vs 'age' Phil explored some of the complexities people face when contemplating their own completed life decisions. The ideas were illustrated with examples of people's deaths which had recently been in the news.
The talk went on to suggest some ways that SOARS supporters can make use of the Completed Life concept in their conversations with others. It ended by proposing the concept of an "Extended Advance Decision" whereby at the time or writing a valid Advance Decision, someone formally sets out their wish for the option of a medically assisted suicide if at some point in the future, their quality of life irreversibly falls below the minimum quality they are prepared to accept. Such a statement would go a long way towards allaying any reasonable concerns that a "vulnerable elderly person" was being pressured into requesting a medically assisted suicide, when that eventually becomes a legal option in the UK.
Slides from the lecture are available here.
Fifth Annual SOARS Lecture (London - October 31, 2014)
This lecture was given by Professor Jan Bernheim, a medical oncologist, who has been at the forefront of the development of the palliative care movement and voluntary euthanasia in Belgium for many years. Presently, he is an Emeritus Professor at the Vrije University in Brussels.
The main points made by Dr. Bernheim in his talk - on "The Belgian Model of Integral End-of-Life Care" - were the following:
"Voluntary euthanasia (terminating the life of another person, at that person's request) is one more step in the control of people over their existence.
"Although in most advanced countries where public opinion has been surveyed, vast majorities favour (voluntary) euthanasia, influential professionals and politicians have so far often resisted it. Motives invoked to oppose euthanasia include the preservation at all costs of all forms of human life, and fears that legalized (voluntary) euthanasia would entail slippery slope effects, erode confidence in medical practitioners and be used instead of palliative care.
"Palliative care is another endeavour to increase human control over dying. But, it can sometimes be more than that. An explicit motive of Dame Cicely Saunders when she initiated palliative care in the UK, in the 1950s, was the prevention and dissuasion of voluntary euthanasia. Yet, palliative care and (voluntary) euthanasia share several fundamental ethical values, including beneficence to the patient, respect of patient autonomy, and an aversion to medically futile treatment. Nevertheless, elsewhere than in the Benelux countries, palliative care and legal (voluntary) euthanasia are usually widely viewed as antagonistic societal developments and adversary political causes.
"Since 2002, in the Netherlands and Belgium, and 2009 in Luxembourg, (voluntary) euthanasia has become legal when requested by a competent and well-informed, irreversibly suffering, adult, performed carefully by a doctor after consultation with at least one other competent physician and reported to a Control and Evaluation Commission. And, earlier this year, in Belgium, requests for euthanasia from irreversibly suffering adolescents, judged to be capable of deciding on the way they would like to die, were also made legally acceptable.
"Whilst in the Netherlands, the palliative care and the (voluntary) euthanasia movements were quite separated in personnel and time (legalized euthanasia preceding the development of palliative care), they largely went hand-in-hand in Belgium - both had wide public and multi-partisan support. The first palliative care initiatives came from advocates of (voluntary) euthanasia at the Free University of Brussels, where also contraception, abortion and assisted procreation had been pioneered. What they propagated was patient-orientated 'Integral End-of-Life Care', consisting of conventional palliative care and/or (voluntary) euthanasia, according to the patient's informed wishes.
"Many of the Belgian founders of palliative care deemed (voluntary) euthanasia unethical if it was conducted for lack of adequate palliative care services - they supported euthanasia as a means of offering patients real choices.
"Within Europe, Belgium was second only to the UK in palliative care development, when it legalized (voluntary) euthanasia in 2002, and since then, its palliative care budget has consistently increased by an annual 10%.
"The euthanasia bill was enacted by Parliament, in 2002, by 86 votes in favour, 44 opposed and 12 abstentions, together with a bill on patient rights, and one expanding the reach of palliative care nationwide, doubling its funding and integrating palliative care with national health insurance. Though voting was not quite along party lines, the large majority was made possible by the fact that, for the first time in decades, the Christian Democrats were in opposition. The palliative care and patient rights bills were almost unanimously adopted.
"In Belgium, physicians trained in palliative care tend to practice (voluntary) euthanasia more than their untrained colleagues. Interestingly, spiritual care is found more intensive in cases of (voluntary) euthanasia than in conventional dying.
"I believe that patients who are assured of (voluntary) euthanasia - if and when they judge the time has come - tend to live longer than their counterparts dying conventionally. I think that there are three main reasons for this. Firstly, euthanasia usually only has a modest impact on lifespan (the estimated hastening of death, in 55% of patients who die by euthanasia, is less than one week). Secondly, the possibility of a 'good death' seems to confer psychological advantages such as reduced anxiety, more attention to spiritual accomplishment, and more concentration on quality of life - all of which may promote hanging on to 'life'. And, thirdly, treatment acceptance and compliance may be increased - some patients agree to possible life-prolonging treatment only on condition that, if non-tolerated adverse effects should occur, they will be granted euthanasia.
"Although the incidence of patients in Belgium receiving non-voluntary euthanasia, since 2002, has halved, this practice still unfortunately continues - although this is now essentially limited to unconscious, dying patients, many of whom have previously requested euthanasia. And, today, Belgian physicians naturally use the "double-effect procedure" far less than elsewhere.
"The main condition for (voluntary) euthanasia is 'unbearable suffering' - suffering that can no longer be tolerated by a patient.
"About two percent of Belgians die with (voluntary) euthanasia - at least half of them after following a conventional palliative care pathway. And, about half of all euthanasia deaths are performed by GPs in a patient's home.
"Less than 0.1 percent die by physician-assisted suicide (where the patient ingests a drug provided by the doctor) - although many physicians state that they would ideally prefer this because then the autonomy of the patient is thus more obvious. It seems that many patients have more trust in their physician doing it right than in themselves.
"At least half of all requests for euthanasia are effectively carried out. Only five percent are refused - usually, because the legal conditions are not met. About ten percent of requests are withdrawn. But, in a quarter of all cases, the patient died before euthanasia could be performed, which suggests belated requests, and possibly procedural delays.
"Belgium is also the first country where, under strict conditions, patients with irreversible neurological conditions, whose request for euthanasia has been granted, can also give added meaning to their life and death by donating their intact organs for transplantation.
"Unlike in the Netherlands, citzenship is not a legal requirement for euthanasia in Belgium, but euthanasia is conditional upon a profound patient-doctor relationship. Therefore, there is no evidence of 'euthanasia tourism'.
"Guidelines by medical and palliative care organizations, including the Federation Palliative Care Flanders, the Medical Disciplinary Board and the Flemish General Practice Scientific Association have endorsed this concept of 'Integral Palliative Care' (that is, conventional palliative care including voluntary euthanasia).
"In practice, among end-of-life caregivers and palliative care units, just like among patients, there is a pluralism ranging from full acceptance to total avoidance of euthanasia, and these personal attitudes are respected.
"Euthanasia is, above all, a choice by a competent and well-informed patient - and, not a decision by the physician. So that all the doctor has to do is decide for himself or herself whether to participate - that is, to be instrumentally and actively involved in the process.
"This integral end-of-life care has not eroded the confidence of Belgians in their health care system: on the contrary, while confidence was 87% in 1999, it rose to 91% in 2008 - the second highest after Iceland of all countries studied in the Europeans Value Survey.
"Yet, some problems persist. For example, some Catholic healthcare institutions still exert pressure on their staff to abstain from euthanasia. And, though the reporting rate of (voluntary) euthanasia steadily increases, too many cases still remain unreported, especially in the French-speaking half of Belgium. However, it must be remembered that, before the present law, there was no control at all. Illegal clandestine end-of-life practices, performed without peer control, as happened in the past, are much more worrying than even imperfectly regulated legal euthanasia. Now, it can be argued that the openness of end-of-life practices, especially under the scrutiny of medical colleagues who are conscientious objectors, is perhaps the best control.
"For those physicians who are still inexperienced with (voluntary) euthanasia, guidance and assistance can now be provided by colleagues of the Life End Information Forum - for both the legally required second-opinion consultation by an independent physician and also for technical advice.
"Irreversible, intolerable suffering is also the justification for (voluntary) euthanasia for some elderly patients with a number of chronic incurable ailments who, with the additional loss of dignity and independence, have reached the stage of a completed life.
"The drive for legislation of (voluntary) euthanasia enhanced the development of palliative care in Belgium: and, at the same time, a well-developed palliative care system made the legalization of (voluntary) euthanasia generally more acceptable. Voluntary euthanasia can be an integral part of palliative care. Recent epidemiological studies have shown no 'slippery slope' effects of legalized (voluntary) euthanasia, and the carefulness of end-of-life decisions has increased.
"The Belgian experience deserves to be brought to the attention of other countries debating end-of-life issues. The principles underlying the Belgian model of integral end-of-life care are individual citizen self-determination, physician accountability, and respect for the religious and philosophical life stances of patients and caregivers. The Belgian model is evolving (and many other important issues are the subject of ongoing professional, societal, and political debate). This is the hallmark of Belgian society, whose culture and politics has always required a high degree of tolerance and compromise. Although a predominantly Roman Catholic country, there is a tradition of liberalism and secular humanism manifest at all levels of society.
"It can be argued that both beneficence and respect for autonomy are manifestations of the virtue of compassion, especially understood as the ability to put oneself in another person's place. In other words, compassion encompasses respect for autonomy. Notwithstanding that autonomy is in high regard all over the spectrum of life choices in Belgium, I think that the emergent and main motive for developing the Belgian model was compassion".
FOURTH ANNUAL SOARS LECTURE (London - September 20, 2013)
This talk was given by Dr. Rob Jonquiere, a retired Dutch physician, who is a former CEO of NVVE (the main right-to-die society in The Netherlands, which has a membership of 130,000 individuals): now, he is the Communications Director of the World Federation of Right-to-Die Societies (a global organization of 52 right-to-die societies, including SOARS, in 26 countries).
The main points, made by Dr.Jonquiere, in his lecture on "Dying Assistance for the Elderly in The Netherlands - an historical and ideological analysis", were the following:
"When Huib Drion - a Professor of Law, and Vice-President of the Dutch Supreme Court - published his article 'The self-willed end of life of old people' in a major Dutch newspaper (NRC Handelsblad) in October 1991, he never could have imagined the impact his publication would have on the debate on end-of-life decisions in The Netherlands and abroad. It was the first time - as far as I know - that the emphasis was explicitly laid on the possible suffering of the elderly, in a period in which 'euthanasia' became more and more an issue of public attention and discussion in The Netherlands".
In this article, Professor Drion had written "It seems to me beyond any doubt that many old people would find great peace of mind in the knowledge of having access to a way in which to say goodbye to life in an acceptable manner at the moment that this - in view of what life might have in store for them - seems appropriate to them".
"Although pro-choice campaigners in The Netherlands, at the start of the public debate about assisted dying (in the 1960s), emphasized the right to self-determination to be the main foundation for having a 'good death' (in Greek, 'euthanasia'), soon the attitudes and principles focused more on the issue of mercy and on the medical perspectives.
"That medical perspective was not only essential - since a doctor was nearly always involved - but it also provided lawyers and legislators ample opportunity to connect medical and judicial arguments in such a way that a law would have to fit both the judicial and the medical practices. We see in the debates leading towards the implementation of the Dutch law ('The Termination of Life on Request and Assisted Suicide Act of 2002') that even lay campaigners emphasized the role of doctors, as doctors had in the past fulfilled the secret (as it was illegal) duty to comply with the cries for help from suffering patients and assisted them to die in a humane way. It is thus not surprising that the main reasons to think and talk about (let alone to perform) euthanasia could be found when the somatic suffering became unbearable and hopeless so that doctors provided relief with appropriate medications.
"But, Professor Drion's views on assisted dying and the broad public attention towards a right to die for everybody that considered their life no longer worth living caused some problems for pro-choice campaigners. Many doctors were not looking forward to assist in cases that did not fit within a medical domain. Politicians recognized immediately the importance that only a medical perspective would make legalization of assisted dying possible.
"Immediately after the triumph of finally having the law in place and assisted dying on request available for seriously-ill patients, the pro-euthanasia campaigners adapted their goals. The debate should now focus on three categories of people for whom a self-chosen end of life so far had in fact remained out of reach - demented human beings with an adequate advance directive; patients with a chronic psychiatric illness who had come to the end of meaningful treatment; and, elderly people who for a variety of reasons judged their lives completed.
"Now, it was decided to introduce the criterion of 'irreversible loss of personal dignity' in addition to the criterion of ' hopeless and unbearable suffering' (the latter being a key factor in the 2002 Act). Research found that, for the elderly person, the loss of personal dignity is often a more important reason for the self-chosen end of life than unbearable suffering in the narrower sense. While for the doctor the suffering is central, for the elderly patient the loss of dignity is paramount. Here the problem is not so much physical, but social and emotional, with a severe loss of self-reliance and any direction over personal life.
"Another consideration being discussed now is the possible introduction of 'counsellors in dying'. Starting end-of-life discussions, when severe suffering is caused only by illnesses, Dutch doctors occupy the central position with the present euthanasia law. When such suffering is no longer the only criterion, it is advisable that perhaps a new category of non-medical professionals could be entitled to give assistance - such as 'counsellors in dying'.
"In our present Dutch euthanasia law, the person who wishes to end their life is really not in the strongest of positions. Of course, that person's voluntary and well-considered request for assistance to die is important, but, in the end, it is the doctor who decides.
"Professor Drion always said (in spite of some contrary views by those opposed to him) that he thought doctors would have to be involved in the assisted suicide of elderly people because they own the key to the medicine cabinet, because only they - and no one else - are capable of determining the dosage and application of the medication needed, and, speaking from a Dutch point-of-view, the family doctor, who knows the elderly person well in our country, is the best positioned professional to assess the seriousness of the request and the (non) availability of alternatives.
"'Completed life' is not in all respects a satisfactory term. It can sound as if life is a manufactured product, detached from nature and the social environment. Other possible terms used are 'tired of life', 'finished with life', or 'suffering from life'. Each of these terms has its drawbacks, but, in the end, 'completed life' has generally been chosen as the best to use, in these discussions, in The Netherlands.
"The conclusion that life is completed is reserved exclusively for the concerned elderly persons themselves. . Never for the state, society or any social system. Only the elderly themselves experience their own lives. They alone can reach the consideration whether or not the quality and value of their lives are diminished to such an extent that they prefer death over life. The reasons to do so are varied. Usually there is a combination of reasons that can lead them to the conclusion that their lives are now complete.
"The elderly have feelings of detachment and stillness. They experience a strong decline of involvement in life - life does not mean quite so much anymore. The elderly have feelings of isolation and loss of meaning. The elderly are tired of life - they are no longer able to do things that are meaningful to them. Their days are experienced as useless repetitions. The elderly become largely dependent on the help of others, they have no control over their personal situation and the direction of their own lives. The elderly struggle with physical, social and mental decay. The loss of functions and increasing physical problems cause feelings of degradation and shame. Loss of personal dignity appears in many instances to be the deciding factor for the conclusion that their lives are complete.
"The decision to end one's own life is naturally very far-reaching. The ties to life are very strong. This makes deliberations between continuing a life which is felt as unliveable, and the ending of it, so difficult. However, when it becomes clear that in this life nothing substantial can be changed into liveable conditions any longer, the elderly person can reach the conclusion that this life has to be considered as completed. This elderly person then may prefer death over life and wish to die in dignity and peace.
"During the debates in our Parliament, at the beginning of this century, about the euthanasia law, the problem of a completed life was discussed, and the Government decided that the law should not apply to this situation. This was necessary then, because, without this exclusion, the law would never have obtained the required majority. However, in fact, there is nothing in the actual text of the 2002 Act which excludes dying assistance in situations of a completed life.
"Then, the 2004 report of the Dijkhuis Commission advised the Royal Dutch Medical Association (KNMG) that, in certain situations, euthanasia legislation could be appropriate for some elderly individuals. And, the KNMG has now decided that, as most elderly persons who say that their lives are now completed will have many minor, age-related ailments and problems, these may jointly constitute sufficient basis to call this a degree of suffering which can be considered as unbearable and hopeless, and so fulfil one of the most important criteria of the present law. This is now seen by a majority of Dutch doctors as an important step forward. And, the Regional Review Committees, supervising the implementation of the 2002 Act, have agreed that the necessary requirements of the euthanasia law are being met.
"The decision to end one's own life requires courage and mental capacity. It is a decision that nobody takes easily. But, the availability of assistance with a dignified suicide is a great reassurance for many elderly individuals. Often, this reassurance, on its own, gives them the strength to continue living. In many ways, The Netherlands can be considered as a country that can be a guide to the world in this important subject, providing better and real choices at the end of somebody's life.
"Regarding those with existing advanced dementia, who have adequate advance directives, the present Minister of Health, Edith Schippers, in close cooperation with the KNMG, has invited a group of experts to examine the subject, and to possibly produce a protocol for doctors to follow so that such assisted dying requests can become legal. The report of this expert group is expected in the coming months.
"In situations where patients fully meet the requirements of our euthanasia law, but where their doctors refuse to comply with their requests, the NVVE has established 'Life End Clinics' (SLK), with the hope that this arrangement will be temporary. These are not clinics in the literal sense of the word - they are a team of a doctor and a nurse who will visit the suffering patient at their home. The team will always try to involve the patient's doctor and often they do eventually convince this doctor to perform the necessary euthanasia with the support of the SLK team. In the first year of this NVVE-sponsored programme (March 2012 to March 2013), 104 persons received euthanasia.
"In this lecture, I will also tell you about the work of a group known as Uit Vrije Wil ('One's Own Free Will'), which started a citizens' initiative - for a 'Completed Life' - in 2010. It published a manifesto which advocated the legalization of dying assistance for the elderly, who considered their lives completed, by non-medical professionals. Within one week, this initiative received the required number of 40,000 declarations of support to put this subject on the Parliamentary agenda. And, when the citizens' initiative was finally submitted to the Dutch Parliament, in May 2010, there were over 120,000 declarations of support, including a number of well-known individuals in our country - naturally, this matter received massive media attention. In time, this proposal will be discussed in our Parliament.
"One's Own Free Will designed concrete proposals on how such assistance could be provided in its draft Bill called 'Dying Assistance for the Elderly' which included - The elderly person being assisted to die must have Dutch nationality or be a national of a European Union member state with a minimum two years as a resident of The Netherlands; two 'counsellors in dying', working closely together, must be convinced that the elderly individual's desire to die is voluntary, well considered and that nobody (a relative or friend) is applying any pressure; the prescription for a lethal medication is only provided by a doctor; and each assisted death is reported to, and carefully reviewed by, a Regional Review Committee.
"In conclusion, I give you a final quote from Professor Huib Drion, stated in 1991 - 'The realization to prevent (in the future) an unacceptable existence, will give many old people great peace of mind'"
Third Annual SOARS Lecture (London - October 26, 2012)
This lecture was given by Silvan Luley, from Dignitas, and focused on this non-profit-organization's activities since it was founded on May 17, 1998 in Forch, near Zurich, by Ludwig Minelli, a human rights lawyer. The main points which he made in his extensive talk, which broadly relate to the concept of old age rational suicide, were the following:
"We all want to live. However, we don't just want to barely live. We have personal views which determine whether our life still holds some value for us.
"The healthy cannot judge over someone who is suffering what that individual's life is worth, whether or not it's worth carrying on.
"It is Dignitas' first and most important task to look for solutions which lead towards re-installing quality of life so that the person in question can carry on living. At the same time, if solutions towards life are not possible, the option of a dignified death must also be looked at.
"Today, Dignitas, with its sister association Dignitas-Germany in Hanover, which was founded on September 26, 2005, has some 6,500 members in 70 different countries around the world. As of today, 899 of our members live in England, Wales and Scotland. We have an office in Forch and we have a house in Pfaffikon-Zurich where accompanied suicides for members from abroad may take place. There are 20 people working for Dignitas, most of them part-time, comprising board members, an office team and a team of companions who visit patients and assist with accompanied suicides.
"Most important, Dignitas does not restrict its services to Swiss residents. The Good Samaritan did not request to see a passport before he helped the injured man on the road. Dignitas ignores borders as far as possible.
"The core goal of Dignitas is to disappear, to vanish, to close down.....However, as long as most countries' governments and legal systems disgracefully disrespect their citizens' basic human right to a dignified end in life and force them either to turn to risky suicide attempts or to travel abroad instead, Dignitas will serve as an 'emergency exit'.
"People are not the property of the state. They are the bearers of human dignity, and this is characterized most strongly when a person decides his or her own fate.....The freedom to shape one's life includes the freedom to shape the end of one's life. However, departing on such a 'long journey' entails responsibility. All individuals are part of society. Therefore, one should not set out on this journey without careful preparation, nor without having said appropriate goodbye to loved ones.
"On January 9, 2002, the Swiss government explained that according to scientific research, for each committed suicide there are as many as twenty to fifty attempted suicides.....Dignitas' experience, derived from 14 years of taking care of people who wish to end their life for all sorts of reasons, is that society should focus on the prevention of suicide attempts.....One-third of our daily counselling work by telephone is with non-members. Additionally, we have a free-of-charge internet forum with some 2,500 registered members, set up like a self-help group, cared for by a professional mediator.....First and foremost, we are a suicide-attempt-prevention organization and therefore a help-to-live organization.
"Over its 14 years of existence, Dignitas has led or been involved in dozens of legal cases.....(in particular) this led, on January 20, 2011, to the European Court of Human Rights' decision in the case of Haas vs. Switzerland - 'In the light of this jurisdiction, the Court finds that the right of an individual how and when to end his life, provided that said individual was in a position to make up his own mind in that respect and to take the appropriate action, was one aspect of the right to respect for private life under Article 8 of the Convention'. Many opponents of the 'freedom of choice in last issues' will claim that there is no right to die. They are wrong; certainly within the jurisdiction of the European Convention on Human Rights.
"Another line of our legal work is engaging in legislative proceedings. As to the UK, we had a visit from the House of Lords Select Committee on Assisted Dying for the Terminally Ill Bill, led by Lord Joffe, in 2005. There was also the investigation of the (Falconer) Commission on Assisted Dying.....they also visited Dignitas.....In Scotland, Member of Parliament Margo MacDonald drafted the Assisted Suicide (Scotland) Bill. To all these projects, Dignitas submitted in-depth responses addressing facts, figures and legal aspects.
"In the case of medically-diagnosed severe or terminal illnesses, unbearable pain or unendurable disabilities, Dignitas can arrange the option of an accompanied suicide upon the request of an individual member. There are many prerequisites linked to the arrangement of such an assisted suicide: the person has to be a member of Dignitas...the person must be mentally competent...the person has to be able to carry out the final action which brings about death by him or herself...the person must send a written request to Dignitas (with) comprehensive historical and up-to-date medical reports showing diagnosis, treatments tried, medication, development of the illness, etc...a Swiss physician (independent of Dignitas) assesses the request and hopefully grants a 'provisional green light' (without this doctor's consent, there will not be an accompanied suicide)...the person has to have at least two face-to-face consultations with the Swiss physician who initially provided the 'provisional green light'...the person has to be able to stay several nights in Switzerland...(and) the person has to provide several official documents such as a birth certificate, etc.....it all takes time. Therefore, one has to allow for about 3 to 4 months for the whole procedure.
"Only if all the requirements are fulfilled can a Swiss physician write the prescription which allows Dignitas to procure the necessary medication for the accompanied suicide. It's a lethal overdose of a fast-acting barbiturate which is dissolved in ordinary drinking water. After taking it, the patient falls asleep within a few minutes and drifts into a deep coma which passes peacefully and painlessly into death. Naturally, each permitted use of a fatally effective medication requires a Swiss doctor's prescription, for only by this means can the drug be legally obtained.
"Our experience shows that only very few people who enrol as a member take advantage of the option of assistance with suicide after all.
"On October 25, 2002, the first UK resident made use of the option of a self-determined end in life at Dignitas, accompanied by his son and daughter; he was from Wales, had been born in 1925 and was suffering from an invasive adenocarcinoma of the oesophagus with metastases.
"There are three groups of suffering, of medical situations, which can generally be identified as eligible for an accompaniment at Dignitas, based on the present legal and factual situation in Switzerland -
(a) There are those who are suffering from a terminal condition, like the man from Wales.
(b) There are people who are suffering due to a severe disability, such as, for example, young rugby-player Daniel James who was almost entirely paralysed after an accident.
(c) And there are elderly people whose life has become too arduous as the result of a multitude of ailments related to old age: a typical example of this was the conductor Sir Edward Downes: at the age of 84, he suffered from heart and blood pressure problems, arthritis in the back and the knees, prostrate problems, and was almost entirely deaf and blind.
"From 2002 until October 2012, 217 Britons - 130 women and 87 men - chose to end their days at Dignitas. (In total, Dignitas has assisted in the deaths of 1,471 individuals from around the world: 866 being female and 605 being male)
"Nowadays, people are living longer, much longer. Of the many reasons for this development, one is the progress in medical science which leads to a significant prolonging of life expectancy.....Obviously, this progress is a blessing for the majority of people. However, it can also lead to a situation in which death as a natural result of illness can be postponed to a point much further in the future than some patients would want to bear an ailment. More and more people wish to add life to their years - not years to their life.
"In the light of this development, limited access to accompanied self-deliverance to certain people, such as those in the group (a) that I mentioned before, cannot be justified. The current projects for legislation on assisted dying in the UK, focusing on the terminally ill, are a step in the right direction. At the same time, they discriminate against people like Tony Nicklinson, and also against those few of the approximately 1.3 million over-85 years old in the UK who, due to their ailments, might rationally wish to end their long life in a self-determined, peaceful manner.
"Most of the difficulties that Dignitas deals with have their origin in the fact that we have always been convinced that the right to die is in fact the very last human right, and thus there should not be any discrimination just because of the place of residence of a person.
"On May 15, 2011, the voters of the Canton of Zurich strongly rejected two initiatives (by 84.5% to 15.5%, and by 78.4% to 21.6%) by religious political parties aimed at prohibiting access to assisted dying. The next political statement followed on June 29th of the same year, when the Swiss Federal Government decided to refrain from legislating on assisted suicide, meaning that the existing law was sufficient. The Standerat - our small parliamentary chamber - followed this opinion unanimously on December 21, 2011, and the Nationalrat - the large parliamentary chamber - confirmed this on September 26, 2012 by 163 against 11 votes.
"Incompetent and biased media - 'The world's foremost euthanasia clinic'...'800 Britons on waiting list for Swiss suicide clinic' - these words are not only found in UK tabloids but also in Swiss newspapers.....a large part of the media uses any opportunity to create hype.....Whilst we could dismiss false information as typical tabloid rubbish or the bad day of a journalist incapable of reading the facts published on Dignitas' website, the misleading words in fact cause a lot of suffering for which the media ignorantly denies responsibility.
"We - groups like Dignitas, FATE, SOARS and many more - are actually the real pro-life people because our work is about options and choices, about respect for humans."
During the general discussion that followed Silvan Luley's lecture, there was universal agreement that we, in the UK, are very fortunate to have the possibility of travelling to Switzerland when we become terminally ill, severely disabled, or for an old age rational suicide - for many of us, membership in a Swiss organization like Dignitas is essentially a good insurance policy.
Second Annual SOARS Lecture (London - October 14, 2011)
The second Annual SOARS Lecture was given by Virginia Ironside, the author (her two recent books are "No! I Don't Want to Join a Bookclub", and "The Virginia Monologues - Why Growing Old is Great") and journalist (she is a regular columnist for The Independent newspaper and The Oldie magazine).
Her talk, and the subsequent discussion with the audience, focused on "Personal Views on Life, Old Age, Death and other Mysteries". While this is a subject which is not usually considered by right-to-die societies, this event produced numerous comments regarding some of the reasons why many individuals want various choices at the end of their lives.
Among the observations made by Virginia Ironside were the following:
"A discussion of death is perhaps the most important topic in the world - which makes it so odd that so many people avoid it.....The only reason I can think of, for this, is that so many are afraid of it. Why? - when from the moment we are born, we know we are going to die.....I think this fear of death comes from the religious idea that life is a gift from God and that it would be rude to throw it away. But, life is only worth living if it is worth living: and, for many people, life is not worth living, particularly if they become so ill that they are unable to function at all.
"If I ever say, while chatting to someone, 'I must do this before I die...' they usually butt in and say 'Oh don't say that...you've got lots of time left!' Total rubbish. I've got far less future than I have a past, and I'm delighted. It means I have fewer options open to me, and I can cut out all the rubbish, refuse unwelcome invitations, walk out of boring films. Being young is like being in a huge supermarket, mind bamboozled by all that choice. Being old is like going to the village shop.
"I see death as something rather wonderful to look forward to. I see it like coming home. I see it as a merciful relief from all life's anxieties and troubles.....It is going to happen to all of us. So why not welcome it and accept it rather than dread it?
"When old people ring up and say, tearfully: 'Oh crikey, I've been told I've only got a few months to live,' I tend to think, 'Well, what do you expect at your age, dearie? I don't imagine you were expecting to live for ever.'
"Us oldies have had years and years to get used to the idea of death. We shouldn't be so weedy about it, we shouldn't dread it. We should set a good example to the young, and teach them, too, to welcome death, when life gets too wretched or, even, when it's clear that we've spent quite enough time at the party and our hosts are starting to yawn and look at the clock. We've got to move on - otherwise we'll be parents of children who are bent and bald.
"Even Freud said, in a letter he wrote to a friend in 1936: 'I still cannot get used to the grief and afflictions of old age, and I look forward with longing to the journey into the void.'
"They say that old age isn't too bad when you consider the alternative. But what is the alternative? Everlasting life? No thanks. Nowhere is the desire to live long seen so clearly as in Miami, a city also known as 'God's Waiting Room.' It's rather like Hove, with gangsters.....Certainly many in Miami look fantastically old. You see alarmingly pulled-backed face-lifty faces atop crinkled bent old figures, all out of kilter.....In my hotel lobby, there was a book for sale called 'Secrets of Longevity: 100 tips on how to live to 100'. Heaven preserve me.
"To be fair, most people I know do say they're not frightened of death so much as frightened of dying. And, none of us wants to enter a strange half-life of pain, blindness, deafness, the loss of our faculties and, often, a complete change of personality.....That is no life for anyone.
"So when some argue about keeping people alive, come what may, I feel like saying: 'For heaven's sake, what's the big deal?' I've already lived far longer than most people were expected to live a hundred years ago. Now, I feel I live on borrowed time.
"It's not good for our children if we hang around too long. I certainly didn't even begin to feel like a grown-up until both my parents had popped off.....I have friends of 75 who are still looking after a bonkers old parent, still staggering off to the nursing home to sit by the bedside of a wheezing semi-corpse which doesn't even recognize them...I have friends whose lives are dominated by their elderly parents.....How will young people ever have a chance to develop if they're forever shadowed by our ailing, brooding presences?.....Baroness Warnock said that she would far rather die than be put into a nursing home and spend large sums of money which could be better used by her children. My thoughts exactly.
"And, if you think that I'm being creepy, apparently 70% of us welcome the idea of assisted suicide when we get too old, or too ill to enjoy life any more.
"And, finally - famous last words. Yes, you can start dreaming them up right now. Here are some hints - 'Another sunny day! Thank God I don't have to go out and enjoy it!' Or - 'I long to be nothing and nowhere, and that will be such a relief: to be something and somewhere is very tiring."
During the subsequent discussion - with SOARS supporters, FATE members, and their guests - the following points were made:
"Death" should be openly discussed, in honest terms: expressions such as "passed away" should never be used. And, worst of all, it should never be said that someone has "lost" his wife or her husband!
In many ways, "Life" is a rather ridiculous situation - homo sapiens is apparently alone in this universe, based on Earth, which is a tiny speck in a vast cosmos, travelling through outer space at nineteen miles a second.
Furthermore, homo sapiens is a recent (accidental?) arrival on Earth - if one's arm represents the age of Earth (about 4.5 billion years), then the presence of homo sapiens is equivalent to one shaving off a fingernail.
How someone copes with death may be largely influenced by what that person actually thinks survives when death occurs. A poll of the audience revealed that 8% believed that a "soul" continued to exist; 12% felt that there is a non-specific "life force" which energizes all living creatures; 65% felt that nothing survives death (except one's descendants, writings, photographs, and friends' memories); and, finally, 15% (perhaps the most honest?) were uncertain what survives when someone dies.
Finally, everyone was reminded of the basic rationale for the existence of SOARS when a 2002 statement from the European Court of Human Rights was quoted - "In an era of growing medical sophistication, combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity".
First Annual SOARS Lecture (London - September 17, 2010)
While the Pope was talking to parliamentarians, in Westminster Hall in London, on September 17th, Lady Mary Warnock, the distinguished educator and moral philosopher, was giving the first Annual SOARS Lecture on “Easeful Death for the Very Elderly”, at the Draycott Education Centre only five miles away.
Lady Warnock’s statement was so clear and direct that the essence of it can be easily given by quoting the following main points:
“The older we get the more realistic we usually become about approaching death, and the more we hope for a good death. Euthanasia in the strict sense is what we all want, whether we will need medical intervention to achieve it or not. This afternoon, I shall speak boldly about euthanasia, and assisted suicide, not hedging it about or sanitising it with the euphemisms of ‘assisted dying’. “Like many people of my age, I have recently witnessed the death of a close relative, my eldest sister, who died this Summer at the age of 101. She did not have a good death; and though its badness lasted only two months, it was avoidable badness, and too long-drawn out…..She got pneumonia and was taken to hospital where she was given masses of different antibiotics…..It was plain that she was dying, but no one admitted this: they spoke as though their one aim was to help her recover, and get her back to where she had been before…..She became unable to swallow and was doubly incontinent, and increasingly distressed and agitated…..her last few days were spent, mercifully, in unconsciousness. “This sad story makes me even more convinced than I was before that everyone must make an Advance Decision and if possible appoint someone to make decisions on their behalf…..Universal understanding of Advance Decisions, and access to proper forms on which they can be made are essential now that we are all living much longer, and it is the responsibility of GPs to bring it about. There should be explanatory notices and copies of the proforma in every surgery, and, at least in the case of everyone over eighty, or with particular health problems, doctors should steel themselves to talk about how their patients whould like to die, and what would constitute a good death. And especially they should talk about how to avoid a bad death, and how the doctor is committed to helping in this avoidance.
“Doctors appear to be hard-wired not to mention death, even though they know quite well, as we all do, that all men are mortal. And it is to be hoped that they know that their duty is as much to make death bearable as it is to fend it off, for this is what we all trustingly believe that they will do, until we witness the contrary. The fact is that most doctors are not much interested in death. A dying patient is not their concern, but the concern of relatives and nurses. Once the doctor believes that he has done all he can to cure his patient, that is to prolong life, and has failed, then his interest wanes…..If doctors seem incapable of mentioning death to their patients, how much more incapable are they of bringing it about?…..Instead they could try to embrace the idea that to bring about a good death for one of their patients is simply to continue the duty of caring for that patient, of acting in the best interests of that patient.
“Dying in hospital, though it may be long postponed by advances in treatment and in technology, may also be lonely and horrible, because there are not enough nurses to care for the old in the most basic ways, by spending time with them, by helping them to eat or drink and talking to them. All such neglect contributes to a bad death, even, or perhaps especially, for those who remain mentally competent, and able to recognise with horror what is happening to them.
“Nothing I have said so far bears on what is the most intractable problem of all those we must face when considering the death of the old, and that is, of course, the problem of dementia. We all know the increasing numbers of those old people suffering from some form of dementia; and we all know that the annual rate of increase is rising fast…..There is certainly a strong argument for enabling patients with dementia to have an Advance Decision they may have made fully and properly respected…..This, once again, points to the absolute need for the public to be educated about Advance Decisions. Specifically, it shows the need for early diagnosis of dementia. For in its early stages, dementia does not render its victims mentally incompetent; they are well able to make decisions with regard to their future (witness the admirable pronouncements of Terry Pratchett), and they are still able to retain the sense of who they are and who they have been, which is lost in the final, most bewildering and frightening stages.
“I simply do not want to be remembered as someone wholly dependent on others especially for the most personally private aspects of my life, nor can I tolerate the thought of outstaying my welcome, an increasing burden to my family, so that no one can be truly sorry when I die and they are free…..Our life, for us, is a narrative, with a beginning, a middle, and an end. We want it to have an end that is fitting, not an end that trails pitifully on into chaos and darkness…..Euthanasia ought to mean death that is good, in the sense that it is timely.
“We must hope that Society can get used to the idea of a good death being in the interest of the very old, when they have, one way or another, ceased to enjoy their life. I believe that this change is perhaps not so far off, if only we can persuade the priests and the doctors to listen to those people”.
For the sixty-five individuals present on September 17th, at this lecture, it was a great pleasure to hear Lady Warnock, now aged 86, speaking so eloquently for so many who are nearing the end of their lives.