Departing at Ninety?

This is a summary of a talk which Michael Irwin (the co-ordinator of NINETY PLUS) gives on this subject:

Of everything that someone can ever experience, nothing is really more overwhelming than the thought of one’s death.  Most people try to keep this final event out of their minds for as long as possible, but, while we should not have a morbid preoccupation with death, I believe everybody, especially after they have retired, should plan ahead, carefully considering, in the hope that they will have a choice, how they might want to die.  And, equally important, they should be willing to talk about this subject (especially when they are relatively healthy) with their nearest relatives and close friends – after all, it is a collective destiny for all of us who live on this tiny planet, rushing through this vast Universe.

Society gives copious advice on how to bring a baby into this world.  Why do we not provide equal guidance, and perhaps even greater assistance, about how we can safely leave this existence? While we generally have a very good palliative care system throughout the UK – which can provide one form of “assisted dying” – which will be adequate for many people, there are many other individuals who do not want to live “to the bitter end”.  Surely most thoughtful people would prefer to die relatively comfortably of their final medical conditions rather than die from the often unpleasant side-effects or complications of their final treatments? From my own knowledge, very few retired doctors – like myself – cling to life against all the odds, undergoing unrealistic treatment.

I do not want my family and best friends remembering me as an increasingly decrepit person, especially if I become more and more dependent on others, even those who love me, for my basic needs.

In 1991, Huib Drion, a former Dutch Supreme Court judge, stated that he thought “many old people would find great reassurance if they could have a means to end their lives in an acceptable manner at a moment that to them appears suitable”, and he proposed that those who were 75 years and older should have access to such a suicide pill – and so the “Drion pill” became a popular concept at that time.  This talk will be developing the concept of the possibility of a legalized Old Age Rational Suicide from the age of ninety onwards (however, as it is reckoned that one in three people, in the UK today, will reach their 100th birthday, perhaps this figure will have to be raised later this century?).

Being born in 1931, and still alive, means that I am now past my sell-by date.  Like everyone else, I did not ask to be born.  Like everyone else, I have no idea why I am presently living on Earth (or should we not call it “Water” as this substance covers about seventy percent of the surface of our planet?).  There is no recovery from being very old.  When one is young, living to a ripe old age would always seem to be a cause for celebration.  But, many very elderly people live in fear of how they will endure it as the extra years will often become more of a curse than a blessing.  It is a harsh reality that, once someone reaches ninety today, their futures will be relatively short.  Dying soon after getting to ninety, still in fair control of my life and faculties, may mean sacrificing a very modest period of simple existence, but at least I will be spared the humiliation of a progressively deteriorating body.

Nowadays, many of us die slowly, with different parts of our bodies breaking down at varying rates.  My father died at ninety, and my mother at ninety-five – so, regarding longevity, I have good genes.  But, both of them, like many other elderly individuals, experienced several years of chronic ill-health before they finally died.  My main medical problems, at present, are increasingly difficulty in walking (due to a lower spine injury sustained in a major car accident in 2007), controlled hypertension (which, even when well treated, predisposes me to a heart attack or a stroke), gout, and a gradual dwindling energy.  Ageing is beginning to diminish me slowly.  In fact, when my death does come, it will take away only part of my original adult self (of course, the “original me” fortunately lives on in the genes existing in my three children and my eight grandchildren – my evolutionary legacy).

During the 1980s, when I was the Medical Director of the United Nations, in New York, I became aware of Living Wills (now, in the UK, known as Advance Decisions), and I have had such a document (regularly revised) for myself since those days.  Thus, if I lose my mental faculties, my relatives will know the degree of medical care that I would want to receive (essentially, none!).

Soon after I retired back to the UK in 1993, I became active in the Voluntary Euthanasia Society, becoming its Chairman in 1996 (until 1999) and again in 2001 (until 2003).  Then, I began campaigning to change the law in this country “to make it legal for a competent adult, who is suffering unbearably from an incurable illness, to receive medical help to die at their own considered and persistent request”.  Unfortunately, soon after the VES was reorganized as Dignity in Dying, in 2005, it was decided to limit its objective to only providing such assistance for those who are “terminally ill” (that is, expected to die within six months).  But, mainly because of strong opposition from religious organizations and, to a lesser extent, from the “medical establishment” and various disability groups, even this limited objective is unlikely to happen soon in the UK.

Fortunately, it is important to realize that competent, suffering British adults, especially when they become ninety, do have access to a doctor-assisted suicide – it just happens to be offshore at present, in Switzerland, where organizations such as Dignitas (in Zurich) and Lifecircle (near Basel) exist.  Some people are naturally concerned about the cost involved in travelling to Switzerland for a doctor-assisted suicide.  In general terms, the total expense (for the travel and hotel costs; the fees to the Swiss doctors and those handling the actual suicide; and the necessary cremation which happens in Switzerland) is about £10,000 – but, it must be remembered that a cremation, in the UK, can cost at least a third of this sum.  Since 2005, I have accompanied five determined individuals to this country to witness them end their lives there (only one was terminally-ill).

Surely the decision to decide, say, from the age of ninety onwards, that enough is enough, and avoiding further suffering, to have a dignified death is the ultimate human right for all very elderly, mentally competent individuals.  They have satisfactorily completed their lives.

Unfortunately, nowadays, death for the very elderly is rarely dignified, especially for those who die in hospitals or care homes where their lives are often depersonalized, shaped by rules and regulations.  Therefore, on December 10, 2009 (a date annually observed globally as Human Rights Day), assisted by Angela Farmer, Nan Maitland, and Liz Nichols, I founded the Society for Old Age Rational Suicide (SOARS).  Our logo was the derelict West Pier in Brighton and Hove, once a place of great excitement and pleasure (like so many elderly people!).

Supporting the rationale for SOARS was an April 29, 2002 statement from the European Court of Human Rights which noted that, “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”.

On February 28, 2011, I travelled to Switzerland with Nan Maitland and Liz Nichols.  Nan, in her late eighties, was increasingly suffering from extensive osteoarthritis.  It was amazing to see how someone, determined to die, can be so relaxed.  For example, about twenty minutes before she drank the lethal nembutal solution, Nan asked Liz for a nail file as the edge of one of her fingernails was “rather sharp” (fortunately, Liz had a file).  Then, I sat next to Nan prepared to offer her some sweet chocolate to take, if required, when she had drunk the rather bitter nembutal – but, she did not want this (“it is not too bad” were her final words).

Public opinion, in the UK, generally agrees with the possibility of old age rational suicide.  In July 2010, an ICM Direct national poll, commissioned by SOARS, showed that 67%, of the 1,009 adults surveyed, supported this.  In March 2011, another national ICM Direct poll, of 1,008 individuals, revealed that 66% were in agreement.  And, in March 2013, a further national poll, of 1,002 adults, showed that 70% of those interviewed agreed with the idea of old age rational suicide.

In April 2016, following an extensive consultation among its members, it was decided that there should be a broadening of its objectives, and so SOARS was renamed as My Death My Decision – with its main objective being “To campaign for a change in the law in the UK to allow medical assistance to die to be given to mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent request (most of the people who the proposed change in law will apply to will be relatively elderly, feeling that their life is complete)”.

Today, doctor-assisted suicide and/or voluntary euthanasia is legally possible in Belgium, Luxembourg, the Netherlands and Switzerland for the terminally-ill, the severely disabled and the very elderly with medical problems (elsewhere, such as in several US States, only those who are terminally-ill can be helped this way).  Are we so different to the Dutch or the Swiss? Of course, we are not.  But, unfortunately, I do not see the UK legalizing assisted dying (apart from good palliative care) for the very old for several decades.

For old age rational suicide to become legalized, for those who have reached ninety, it will be essential to have very strict safeguards.  For this option to be possible, these will include:

• Two doctors (one being a consultant geriatrician) agreeing that the individual is mentally competent, and has carefully considered all the possible other options.
• An interview with an independent legal expert, experienced in family matters, to ensure that they are acting on their own free will, and not being pressured by relatives, or others, to seek this medical solution.
• A waiting period of at least two months between a written request being made and the necessary medication being provided (which must be taken in the presence of an experienced healthcare professional).
• Finally, a report must be provided to a central government office which is signed by all those involved.

Because I have been so impressed from my own very personal experiences, by what is possible today in Switzerland, this is where I will go when I have passed the ninety threshold, and I am burdened with various medical problems – if I have not already died suddenly, or had need to rely upon my Advance Decision, before that age.

I have been a member of Dignitas since November 7, 2003 when I first met Ludwig Minelli, its founder, at his home in Forch, a suburb of Zurich.  In addition, I also joined Lifecircle soon after it was established in early 2012.  When a friend heard that I was now a member of these two Swiss organizations, willing to help foreigners with a doctor-assisted suicide, he joked that I was like a man who wears both braces and a belt to hold up his trousers – a form of double insurance!

In recent years, especially in right-to-die organizations, the expression “A Completed Life” has been developed.  During 2015, following an extensive discussion among several members of SOARS, there was agreement on the following definition of a “Completed Life” – “Elderly, mentally competent individuals may consider that their lives are complete when they have a chronic health problem (or a combination of more than one condition) which is causing them increasingly unbearable, irreversible suffering, with the additional loss of independance, purpose and meaning in their lives, so that they would now prefer to die rather than stay alive, especially as they dread what the future will soon bring”.

The following list identifies the factors that someone should consider when making their own personal decision regarding, whether or not, their life may have reached the stage of being “complete”.  Of course, everybody’s situation is different.  This is not a “tick list”, but, hopefully, it does provide some guidance when an individual wants to evaluate their own position.

1. Elderly – It is difficult to decide how old is “elderly”.  An individual’s health and mental and physical ability can be separate to a specific number of years.  But, in general terms, one is thinking of someone eighty-five to ninety.
2. Mentally Competent – An individual must be able to properly comprehend the nature of their medical conditions, and the expected progress of these.
3. Loss of Energy – As one ages, it often becomes increasingly difficult to overcome a tendency to want to be physically less active.
4. Chronic Health Problems – These can be mental as well as physical
5. Increasingly Unbearable, Irreversible Suffering – Naturally, this is for an individual to determine as it is a very personal matter, and can be both physical as well as mental.
6. Loss of Independence – This is a very variable factor, with some people not wanting to be “looked after” by others on anything other than a temporary basis (when perhaps they are recovering from a treatable illness).
7. Loss of Purpose and Meaning – This is also a very personal matter and, of course, changes as someone ages with different responsibilities (a job, being a parent, and then a grandparent, etc).  When chronic health problems result in activities, which previously kept an individual busy and enjoying life, being no longer possible, and other pleasures cannot be found, then it is natural to feel something very important has been lost.
8. Dreading what the Future will bring – Deteriorating gradually can be a very unpleasant and undignified experience (and, when someone’s partner dies, there can be an increased feeling of isolation).

This concept of a “Completed Life” can be useful when someone is elderly and wants to discuss their own end-of-life plans (ranging from the completion of an Advance Decision to considering a possible doctor-assisted suicide in Switzerland) with their family and close friends.

GPs can assist in a suicide

In August 2014, a very good friend of mine decided to end her life by refusing all food and fluids. Jean Davies was not terminally ill, but she was increasingly concerned about the fainting episodes that she was experiencing, which were occurring for no obvious reason. One attack had happened when she was at the opera. And, on another occasion, she had collapsed in her bedroom and had found herself wedged between a radiator and her bed.

Jean had been an active campaigner for changing the law to legalize doctor-assisted suicide. She and I were both members of the Executive Committee of the Voluntary Euthanasia Society (now, renamed as Dignity in Dying) in the 1990s.

Jean openly discussed her plans with her family and her many friends, including myself. She spoke to her GP and, in the report of her death in The Sunday Times on October 18, 2014 (“Right-to-die granny, 86, starves herself to death”), it was stated that he, “a Christian, who does not believe in assisted dying, helped treat her symptoms throughout her five weeks of starvation after consulting his defence union”. This GP was quoted as saying, “The defence union said that if someone has capacity then it it is their choice. You cannot force someone to eat if they have capacity”.

Thinking about Jean’s death, in October 2018, I wondered if someone, such as a carer or a GP, provides symptomatic treatment for the associated unpleasant symptoms, which can occur when someone stops all food and fluids (such as extreme thirst, hunger pains, even delirium), does this amount to assisting in a suicide? To my knowledge, no legal authority, in the UK, has even raised this question.

Therefore, on October 10, 2018, on my behalf, Leigh Day (a law firm in London) wrote to the General Medical Council. The key paragraph, in this letter, was “At paragraph 6 of the ‘Patients Seeking Advice or Information about Assistance to Die’, the Council advises doctors that none of the advice contained in the document ‘prevents a doctor from agreeing in advance to palliate the pain and discomfort involved for such a patient should the need arise for such symptom management’. Please confirm ‘symptom management’ includes the symptoms which arise from a mentally competent patient stopping eating and/or drinking which progresses to that individual’s death”.

In its reply, of October 30, 2018, the General Medical Council stated, inter alia, “You ask for confirmation on a point in paragraph 6 – specifically whether symptoms arising from a mentally competent patient’s decision to stop eating and drinking would be encompassed by the term ‘symptom management’. We think our advice is as clear as it can be in that it states that doctors may agree with their patients in advance to provide medicines or treatment to alleviate pain or other distressing symptoms, should the need arise. The assessment of clinical need for any patient falls to the clinician and/or healthcare team involved in their care. Where doctors are unsure about a patient’s particular circumstances, our expectations are that they will seek advice from, for example, a professional body or medical royal college or legal adviser. They will then take account of such advice in applying their professional judgement in the context of the various situations they face in practise”.

Jean Davies’ GP, in 2014, helpfully assisted her when she stopped eating and drinking. Essentially, Jean’s death was a suicide. So, in my view, it is very reassuring that GPs can act compassionately – in the best interests of their patients when they are suffering unbearably – when they wish to end their lives in this way.