A Designed Death – Where & When The World Allows It

Medically assisted dying is hotly debated in an ever-expanding number of countries. Advocates and opponents proffer powerful and passionately held arguments for and against. From early-adopting Switzerland to latest-to-the-table Australia, more and more countries are legalising the practice. It is now available to over 280 million people in 11 countries around the world. It was on offer to my mother, who recently (and gratefully) used Canada’s legislation to orchestrate her own wise demise.

As a writer and researcher who studies the implications of longevity on life and careers, I have focused in these columns mostly on the 3rd Quarter, the years from 50 to 75. But because so many of us in this stage of life accompany our parents to their 4th Quarter ends, it is worth exploring how we can best support them. And learn from them how to (better) plan and prepare for our own ends. Having just gone through this personally, it seems an essential task of Q3. And a gift to our children in Q4. What have I learnt? If we don’t claim the design of our own deaths, it’s likely someone else will. Cede this space if you will, but read this first.

For Boomers used to planning and controlling many of life’s choices, from when to have children to what kind of milk in their coffee, defining a good death seems like something they may want to discuss with their families – and decide for themselves. Sooner rather than later. It is likely to become an integral part of planning a good life and legacy. Clear choices, clearly communicated, help families navigate today’s end of life smorgasbord of a multiplicity of medical options. For most, it isn’t an appetising meal. Read Atul Gawande’s Being Mortal for an urgent wake-up call on the painful, protracted, medicalised end that currently awaits so many of us.

This September, I witnessed my mother calmly and resolutely end her life with the help of Canada’s Medical Assistance In Dying (MAID) program. She was suffering from chronic spinal stenosis and, after an accident and months in hospital, had deteriorated to a state where she was wheelchair-bound, incontinent and dependent on 24/7 care. After decades of supporting Dying With Dignity in Canada, she decided it was time to use the legislation she had long hoped would be legal by the time she needed it. The law was six years old. She was 97.

The experience elicited a mass of mixed emotions among her loved ones and friends. Mostly relief at the serenity of a planned end, at home, surrounded by her family, with ample time to say goodbye, express love, and mindfully share newly-finite time. Yet it made both me and my husband Tim, who co-authored this piece, do much research and more soul searching to think more deeply about all sides of the ongoing debate. After my mother’s departure, we remain aligned in support of the practice, carefully regulated and monitored. Personally, we both harbor a wish to emulate my mother’s courageous role modelling and die in a country where we too will have exit options on call. Will we use it? Who knows, but we hope it will be available.

Yet we recognise the validity of many of the questions and concerns being raised. It needs debating. Anyone advocating assisted dying – or discussing options with family members – will want to think through them. What follows is what one might call a considered advocate’s assessment of the state of medically assisted dying around the world. A second, follow-up article, will explore – and consider – the many objections to its spread.

Denying, Desiring or Planning For Death?

During our lives, most of us don’t spend much time thinking about our own deaths, if not actively denying its indubitable inevitability. In our modern world, death has become a largely hidden affair. Only when someone close to us comes to their end do we get a glimpse of what dying really looks and feels like. Sadly, many of us see loved ones tread a particularly unpleasant pathway to death, usually involving a depressing cocktail of steady physical decline, loss of faculties, possible mental deterioration, the embarrassment of incontinence, and the loss of independence and control over their life. No more than 10-15% of us are lucky enough to just suddenly drop dead. For the vast majority, the Grim Reaper has cruelly learned to take his sweet time, empowered by medical prowess devoted, by oath, to keeping you alive. Days, weeks, months, even years in some cases.

We generally think western societies give primacy to individual wishes. That isn’t necessarily the case. Many countries have such powerful moral strictures against suicide – though legal – that if a person wishes to end their own life, they must find a solitary place to kill themselves in one of a number of painful, not always certain, and sometimes very bloody ways. Like the 95-year-old, chronically suffering neighbour of a friend of mine who recently climbed, with great difficulty, to the roof of his building and jumped to his ardently-desired death. Not an easy legacy for the wife who survived him. In this highly medicalised world, a combination of medical professionals and relatives, often unintentionally and lovingly, may also influence an individual to accept a higher level of medical intervention for longer than is actually helpful. Prioritise length over quality of life. Gawande’s book describes a series of graphic, and usually invisible, examples.

The Ultimate Fear

Being Mortal emphasises what most of us really fear. More than decline and death, what terrifies many is a loss of control over our own lives. This loss has multiple faces: Physical and/or mental decline. Hospital or care homes where we become haplessly subject to a medical and institutional regime characterising itself as ‘in our interests’ but understandably designed for efficient mass throughput of patients – from entry to final exit. Emotionally difficult, confusing, or frightening moments in our lives, where we find ourselves ceding to the opinions, wishes and projected fears of family members.

Of course, other people’s opinions and needs count. But in death there is only one lead actor. Everyone else has a supporting role – and should acknowledge it. Until the day, sometime in the future, when – for one performance only – they get to take centre stage. A key challenge for how societies address death and dying is to give individuals directorial control – right to the end.

Many people, Gawande included, argue that the solution lies in carefully structured and honest conversations as people move into the hands of healthcare professionals, combined with high quality palliative care. These are wise and sensible approaches which can reduce pain and give people a sense of calm as control and life inexorably slip away. But even the best palliative care can only do so much. Many dying or chronically ill people may still prefer to limit their pain and hasten their ending – for themselves and those who love them. Doesn’t someone in constant pain, having lost many of their bodily functions, largely dependent on others and who fears still worse to come, have the very human right to say ‘Enough’?

Definitions: Medical Assistance in Dying

There are many, often loaded, terms used for medically assisted dying. It helps to define them and understand the difference, and why people may choose to use one over another.

• Assisted Suicide: an individual is provided with a fatal drug and has to be capable of administering it themselves.
• PAD: Physician or clinician assisted death involves a trained professional administering the drug for the patient.
• Euthanasia: encompasses both of the above but sometimes has subliminal echoes and references, including what we usually do with our dying pets.
• Dying with Dignity: which rather pejoratively implies other deaths are not dignified.
• Medical Assistance in Dying (MAID): The term, adopted in Canadian legislation, can include self- or physician-administered situations and simply describes what it is.

Words matter. Those who favour the practice tend to refer to ‘assisted dying.’ Those who oppose it are more likely to use terms that include ‘suicide’ or ‘euthanasia’. ‘Suicide’, while legal in most countries, undoubtedly carries negative connotations, while ‘euthanasia’ haunts us with memories of Nazi programmes that killed tens of thousands of mentally and physically disabled people alongside the Jewish genocide. In this debate, as in so many others, the words we use become weapons in our cause.

The Global Rise of Assisted Dying

The status of medically assisted dying has changed dramatically in the last 25 years. Before 1997, only Switzerland permitted it. As of October 2022, it is legal in 10 countries and parts of the USA: Switzerland (since 1942, but mostly from the 1980s), the Netherlands and Belgium (2002), Luxembourg (2009), Colombia (2014), Canada (2016), Austria, New Zealand and Spain in 2021 and Australia (2022).

In the US, assisted dying is legal 11 states or districts: California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon (the earliest, from 1997), Vermont and Washington. Apart from Oregon and Montana, most legislation in these states has been in the last 5 or 6 years.

Legislation to allow assisted suicide for terminal conditions is currently before Germany’s parliament. Portugal’s parliament voted (three times) to approve it, but the legislation has been vetoed by the country’s President de Sousa. In Britain, a House of Lords’ Bill is under consideration, but seems unlikely to progress, while Scotland may further assert its independence by voting it in first. President Macron in France has promised a debate and possible legislation in 2023. Passive euthanasia, where a patient simply requests critical life support to be withdrawn, is permitted in at least 9 countries (the Czech Republic, Denmark, France, Germany, Hungary, Italy, Norway, Sweden and the UK), and probably quietly practiced in rather more.

There are many differences between what each country allows. But in all, criteria require at least two independent doctors – in some cases plus an expert panel – to review eligibility. There is also a period of time – generally from 10 days to 12 weeks – between someone being approved and the actual procedure, to allow for changes of mind or heart.

Some countries only allow medically assisted death for patients who are diagnosed as ‘terminally ill,’ or as likely to die within 6 months (Australia, New Zealand and all 11 US states). In others, people who are not dying, but living with chronic, debilitating, and incurable physical conditions causing unbearable pain or making a dignified life impossible, can seek medical assistance in dying (Austria, Belgium, Canada, Colombia, Luxembourg, the Netherlands, Switzerland and Spain).

In a few countries, this has been extended to people with chronic, long-standing mental illness, though as yet there have been relatively few cases (Belgium, Canada, the Netherlands, Luxembourg, Spain and Switzerland).

In Belgium, the Netherlands and Austria, people can make advance directives so that assisted dying can be administered in accordance with their wishes – even if they are not conscious to confirm those wishes. Significantly, in The Netherlands, a person can make an advance directive which specifies assisted dying if they fall into dementia leading to a miserable existence. This is a significant step which is also under consideration in Canada (Canada already permits what is called a Waiver of Final Consent, for use in very limited circumstances).

In terms of the procedure, some countries require the fatal dose to be self-administered (Austria, Switzerland, the 11 US states and Quebec in Canada). Others allow doctors or nurse practitioners to carry it out, unless the individual wishes to self-administer (Australia, Belgium, Canada apart from Quebec, Colombia, Luxembourg, the Netherlands, New Zealand and Spain).

In Memoriam – On Grieving & Loss

What of the impact of a planned death on those left behind? Undoubtedly the experience is very different. When someone dies naturally, you watch them keep going until they simply can’t. They go once they are unable to survive a moment longer. My husband Tim watched both his parents die this way. With medically assisted dying, you know they could still have been there, for at least a little while longer. Some may find it hard to accept death was preferable to the life that remained. And yet.

A natural death is unpredictable in its timing. This often makes final conversations difficult. Many people die with important things left unsaid – without expressions of understanding, forgiveness, love and thanks. For someone in protracted decline, their family simply must carry on with their own lives, go to work, deal with the everyday, supporting the person who is suffering, but not quite knowing when the final conversation may happen. Or, having it at all if the final crisis comes first.

Our experience was that a planned, medically assisted death made space for conversations and farewells, allowing us to prepare and say what was important – before it was too late. The end colours one’s memory. The nature of a death can have a disproportionate impact on how we remember someone. Tim’s memory of both his parents in the moment of their death – gaunt, struggling for breath and then hollow-cheeked and silent – remains a vivid part of his visualization of them years and decades later. My mother’s death gifted me a sense of her calm serenity and gentle drift into sleep, deeply emotional though the experience remained. Assisted death allows a person to die as they have lived, leaving a memory of an essentially whole person, brave, realistic, facing the truth of life and inevitable death, loving to themselves and to you right to the end – a goodbye filled with love, pride and lessons.

Some people describe medically assisted dying as the next big shift in social attitudes and that, just like the abolition of slavery, the emancipation of women and the legalisation of gay marriage, the voices raised against it will at a certain point be overwhelmed by the tide of opinion in its favour, and it will come to be seen as a further step along the path of individual human rights. Yet medically assisted dying raises real questions and concerns that nobody who supports it should dismiss. In the second part of this article we will look at the objections, concerns and genuine fears expressed and ask whether they can be addressed responsibly, ethically and empathetically. Meanwhile many questions are being answered in the experience of countries where medically assisted dying is now being practiced.

Whether or not this is where our human future lies, sometimes the rightness or wrongness of a thing can only be tested by trying it out. Our deaths are an integral part of our lives. What end will we write?

Part II of this article will explore more deeply the Canadian case, as well as the many arguments against medically assisted dying – religious, ethical and practical.