A different way of dying
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A different way of dying

How do you prepare for a death that's planned?

Conny van Hoogstraten’s countdown: collecting memories of her life story.

Conny van Hoogstraten’s countdown: collecting memories of her life story.

Vanessa Macdonald was deeply disturbed as she watched her partner’s Dutch mother prepare for death and undergo palliative sedation to hasten the moment. In a blow-by-blow account of the intense, emotional and uncomfortable experience, she tries to come to terms with it.

 

As a teenager, I remember an acquaintance trying to impress the girls at a party by telling them that he was a psychic who could see how you would die, merely by clutching your hand with his eyes closed. There were no takers.

There is something inherently unnatural about knowing how you are going to die: would you not spend your life trying to outrun fate by avoiding zebra crossings, or carcinogenic foods – instead of living life to the full?

Perhaps, though, there is something just as unnatural about knowing when you are going to die.

When my partner Maarten told his 89-year-old mother, Conny, that the oncologist had just given her a death sentence, her response took me by surprise: the death sentence, she said, had been given to her by the doctor who delivered her as a baby.

This reaction to news that she had a mere six months to live said a lot about this extraordinary woman. But it was also the introduction to a typically Dutch approach to death, which made those six months an emotional roller coaster for me.

Here in Malta, we do not willingly talk about death, even when it is clear that there are mere days to go. We spout platitudes, grasp at faint signs of improvement, and then go home and diligently check where the black ties and funeral outfits are.

So the journey with Conny was different from day one. Over the course of those six months, we visited the Netherlands every few weeks – and set about preparing for her death. We cleared cupboards of accumulated stationery, sorted out the psychology books she wanted to give to a past colleague and put her expensive jewellery to one side.

As we went through photo albums, Maarten realised it was a golden opportunity to fill in the blanks about the times and places, and we came up with the idea of putting together her life story, with a timeline of the main events, and four or five stories from her past that really captured her indomitable spirit. For me, it was a wonderful way to learn about her past – and Maarten’s – and it turned out to be therapeutic for her too. She spoke about the love of her life, who she had met in her 40s, and through the marvels of Google, we were able to piece together the decades of his life after they reluctantly split up.

She spoke about her happy childhood in the sand dunes at Zoutelande – and lamented that we would not be able to take her there for her 90th birthday as planned. And slowly, her death began to take shape. I interviewed her for her ‘life story’, and she was thrilled by the idea that we planned to sprinkle her ashes at Zoutelande.

We drew up the list of people to inform of her death – no euphemisms like ‘passing’ – with so many entries in her address book crossed out as she had outlived them. And we talked about what music she wanted to have at the cremation; what colours the flowers should be.

She called many of her friends around the world and told them quite openly that her days were numbered – a chance to say her goodbyes, without tears and certainly without regrets. She was calm, and the only time she got vaguely agitated at all was when she was afraid she would not have the time and energy to sort out her life before the end.


It was organised, unemotional, serene. And yet, would we all have been so pragmatic if we also had to deal with the dying as well as with the death? Cancer is a cruel killer, and lung cancer, they say, is one of the worst. But Conny was clear in her mind that she would call the end at the time of her choosing.

She had a choice: euthanasia, which you can invoke at your desire, or palliative sedation, which the doctor invokes when certain criteria are met. They are different not only in terms of legislation and ethics, but also in practice. In the latter case, you are put into a medical coma and all food is withheld at the patient’s request, which makes the doctor’s role passive rather than active.

Conny toyed with the first option and even got all the forms signed by Maarten, but as the weeks went by, she was overwhelmed by the attention from friends and family, who got in touch, sent messages, crossed the country to visit her. Was that why she decided there was no hurry; that she would wait until there were medical grounds on which to say ‘enough’?

For me, the whole issue was deeply disturbing. There was no moral judgment about ending her life, or about the role of the doctors. Yet it seemed to me to be so cold-blooded, so practical, so alien to the Roman Catholic idea of leaving it in God’s hands.

Conny would shrug. After all, do we not do the same when we plan a Caesarian birth? If we could choose our arrival, could we not also choose our departure?
But the thought of it made me supremely uncomfortable. At some basic level, the thought niggled: what was the difference between this and taking a dog to be put down by the vet?

My reaction was, undoubtedly, also self-centred: how to handle getting on a plane for the goodbye, saying your farewells, squeezing the hand, kissing the forehead, stroking the snowy white hair. Did I have the courage to do that?

I would wake up at night, tortured by the idea of it, raging against the idea that we might be wrong about heaven, that she might be cheating herself of one more friend turning up unexpectedly, one more message landing in her letter box, one more bite of her favourite food.

And there was a sense of guilt permeating those early-morning panic attacks: was she opting for this because she was worried about us; about the dark shadows under Maarten’s eyes; the extra shifts worked to get more leave at the end of the year to spend with her; the dreary drives through the snow; the delays at the airport?

Over the months, we lived in denial. She was eating well, sleeping well, walking well… Until she wasn’t. Her deterioration could not have been overnight, but that is how it seemed to us. We would plan a treat for each visit and suddenly realised they were our indulgence; our attempts to squeeze out one more memory before she died.

By January, she seemed to have withered away, her vibrant lifeforce faded. She applied to move to a hospice nearer to Maarten’s sons and her friends. A room had been vacated and she had just two days in which to pack a few bags into the ambulance that came to collect her. All of a sudden, the work we had done clearing up seemed woefully inadequate, with a flat still full of the accumulated proof of a well-lived, well-travelled life.

The stories from our little interviews filled three pages, and as we scoured boxes of old photos, they prompted even more stories. The pages were finally ready to be printed and sent as her obituary announcement.

Each time we went to see her, we would sort through yet another of the few boxes she had brought to the hospice, and each time she handed over something physical for charity, for a friend, or for us, we could see also her intangible life shrinking, as though she was getting less clear around the edges.

And the day came when she found swallowing too hard, when she could no longer go to the bathroom unaided. There were no laments, no nostalgia, no anger. Quite the contrary. Concerned that the doctor might not assess her as being ready to be put into a coma, she decided to stop eating.

It was all so clear in her mind, and knowing how it would unfold gave her solace. We would fly over, say our goodbyes at the weekend, and on Monday, she would ask the doctor to start the procedure. Then it would be just a matter of days, the number already reduced considerably by the fact that she had stopped eating before.

We tend to lay so much importance on being there at the actual time of death of our loved ones. We want to be the memory imprinted on their eyes before they close. For Conny, there was not going to be a call in the middle of the night to get there soon, a frantic drive, a tormented reminder of all the things still unsaid.

We sat at the airport nursing a coffee, feeling that we were prepared, that she was prepared, and yet dreading meeting someone we knew who would ask why we were on our way to Holland. What would we say? Random thoughts chased each other: do you start to grieve when you say goodbye, when they administer the coma, when she stops breathing?

Conny was asleep for hours at a time, and as Sunday loomed, the burden of saying goodbye seemed impossible to bear. Maarten and I clung to each other outside her door, the silences long and heavy.

How did the volunteers at the hospice keep on giving so much care? How did the constant rotation of those six rooms, changing the names outside each door, not wear them out? “When they only have weeks to go, we can make those weeks comfortable, serene, pleasant…” one of them told me as tears poured down my face in the little kitchenette, steeling myself to smile before I went back to her room.

Soon it was time. Her cremation outfit was ready in the wardrobe, and there were her favourite flowers by her bed. All the papers, toiletries, jewellery had been sorted. She was not in any pain – the morphine patches enabled her to cope with that – but the lack of food had made her weak.

We talked about her journey to whatever lay beyond; about her favourite memory that she would summon on Monday to carry with her to the other side. In the end, she used every last bit of energy she had to pull herself up in the bed and give us a smile. In the end, she had the chance to make sure that the memory we took away with us would comfort us when she was no longer there.

How many days, or weeks, or months had she given up to die before the pain became unbearable; before she had to go to a hospital where her life would be measured by monitors with their beeps and pale blue light; before she was hardly recognisable; before our hearts broke with helplessness?

Her death was inevitable. All I can say is that the way she died was defiantly her own.

The law

Article 213 of the Maltese Criminal Code says: “Whosoever shall prevail on any person to commit suicide or shall give him any assistance, shall, if the suicide takes place, be liable, on conviction, to imprisonment for a term not exceeding 12 years.”

The Catholic Church

The Catholic Church strongly believes in the respect of the dignity of human life that everyone has the right to enjoy from conception to natural death.

This belief is the foundation of every civilisation, built on the protection of the rights of every human being, among which is the fundamental right to life. The objective of the law is to provide protection to every human life, in particular when this is disadvantaged and vulnerable, rather than to facilitate and promote its termination.

“Every society that weakens the legal prohibition of intentional killing of a human being would be eroding its moral and social fibre,” Archbishop Charles J. Scicluna and Bishop of Gozo Mario Grech wrote in an open letter to MPs on medically-assisted dying in 2016, where their concerns and ethical and moral considerations were highlighted in view of the discussions that were being held.

When a citizen becomes dependent, weak, or vulnerable due to sickness, disability, or severe suffering, a modern society is expected to respond with solid and sensitive structures that provide solace and encouragement so that no one is marginalised, falls behind, or is considered a burden on others, they said.

“A society shows its merciful countenance … when it does not introduce legal protection for medical assistance with the aim to accelerate the process of death. On the contrary, we should consolidate the medical service of palliative care and continue to broaden the net of social solidarity… High quality and efficient services in this area of medical expertise offer not only comfort and great support to the patients and their relatives, but they also instil peace of mind in society.”

The patient reserves the legal and moral right to refuse disproportionate medical treatment, that is, treatment that does not offer any hope of benefit, involves exorbitant costs, or inconvenience, and incurs severe pain and suffering. The decision to withhold or withdraw medical treatment because of these reasons, while at the same time maintaining palliative care, is ethically different from a patient’s request to medical assistance to accelerate the process of death, they explained.

While in the first instance, the intention is to refrain from any medical intervention out of respect for the natural process of death, in the second instance, the intention behind the medical intervention is to kill the patient, they continued.

“Nowadays, everyone appreciates the strong sense of autonomy that a person enjoys. Everyone desires to take control of their life in order to fashion it responsibly according to their wishes and plans. This is a big step forward in today’s civilisation. However, this autonomy does not mean the right to unilaterally decide to end life because of severe suffering, disability, or for other inconvenient reasons…

“The protection of life exceeds the right to liberty. The request of the patient to be given medical assistance that directly causes death, even when death is imminent, is not a question of freedom of choice. The autonomy enjoyed by every human being is not absolute, or unlimited.”

If in this context, the principle of autonomy is understood in the absolute sense, then this impoverishes the medical vocation by reducing it to a mere ‘technical’ function whereby the doctor performs whatever the patient wishes, the bishops said.

They pointed out that a change in the law regarding the protection of human life would be “a change in the culture and mentality of our country in how we would start perceiving our elderly, people with chronic illness, people with disability or other conditions”.

The Church understands the psychological and physical suffering that the patient and relatives would be going through and stands shoulder-to-shoulder with each person undergoing these bitter experiences of suffering. This said, however, “we believe that the value of human life does not depend on sickness, or health. We believe that medical assistance given to the patients for the abrupt termination of life could never be in their best interest”.

The medical profession

90.2 per cent of doctors registered in Malta are against the introduction of euthanasia.

The patients

Only 11.9 per cent of physicians in Malta had terminally ill patients who asked to be euthanised, compared to between 34 and 71 per cent in mainland Europe.

The options

Euthanasia: the physician administers the means of death, usually a lethal drug.
Assisted suicide [often called physician-assisted suicide]: a doctor intentionally provides a person with the knowledge or means or both required to commit suicide, including counselling about lethal doses of drugs, prescribing such lethal doses, or supplying the drugs.

Palliative sedation: relieving distress in a terminally ill person in the last hours, or days, usually by means of a sedative drug. Although not widely considered a form of euthanasia, as the goal is to control symptoms, rather than to shorten the patient’s life, it is often termed “slow euthanasia” if nutrition and hydration are withheld, because under such circumstances, the intent of hastening death is obvious.

Other parts of the world

Voluntary euthanasia was legalised in Colombia [in 1997], the Netherlands [in 2002], Belgium [in 2002], Luxembourg [in 2008], and Canada [in 2016].

Assisted suicide is legal in Canada, the Netherlands, Luxembourg, Switzerland and parts of the US.

This article first appeared in Pink magazine. Get your copy of Malta's top women's magazine with The Sunday Times of Malta.

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