Wednesday, September 23, 2015

Belgium euthanasia: Dateline special report: Allow me to die

This article was published on the HOPE Australia website on September 16.

Paul Russell
By Paul Russell


The documentary filmed by the Australian Special Broadcasting Service (SBS) and made by their highly regarded European Correspondent, Brett Mason looked at the Belgian euthanasia regime through the lens of personal stories.

As the documentary unfolds we hear clearly from Mason, a voice of concern. To his credit, both in the documentary and in his blog story, he doesn’t put his own views nor conclusions. Clearly, however, the reality of euthanasia is very different from his initial conceptual thoughts as evidenced in these comments from the blog:

“I was taken aback - not for the first time in recent weeks - by just how mundane and unremarkable euthanasia is to those who perform it.” 
“I’m unable to bury a burning sense of anguish in the pit of my stomach. While I fully accept and respect that this decision was the patient’s and the patient’s alone, over these last nine months I’ve been filming in Belgium questions have repeatedly been asked about how this nation’s euthanasia laws are safeguarded.”
Tom Mortier
Reflection during the program came in the testimonies of Belgian, Tom Mortier, whose mother was euthanased without his knowledge and Dutch Professor, Theo Boer, who had formerly been a member of one of the Dutch euthanasia review committees. Both had formerly supported their countries laws. It would be wrong to suggest that Professor Boer is now totally opposed, but Tom Mortier most certainly is so. Both raised concerns that the Belgian and Dutch laws had moved far beyond any initial sense and remit as being only for terminally ill people and only at the end of life when all else had failed.

The documentary then follows two people contemplating euthanasia. Neither, it should be said, are terminally ill. From the SBS online profiles:


“Peter Ketelslegers is a 33-year-old father of two boys, Alex and Thomas, and suffers from a rare condition called cluster headaches. 
The intense headaches can last up to three hours, several times a day. He’s tried many different treatments, but nothing has worked. 
He used to run a farm with 300 cattle near Brussels alongside his wife Conny, but now the animals are gone as he’s no longer able to work. 
The headaches won’t kill him, but there’s no known cause or cure. He tells Dateline that the suffering is now so unbearable that he wants to be euthanised.” 
“Simona de Moor is a physically healthy 85-year-old. She lives in a care home in Antwerp, but is still active and on no medication. 
However, she’s been unable to accept the death of her daughter Vivian from a heart attack three months earlier, and sees no reason to go on.”
Peter Ketelslegers’ situation is intensely difficult and will draw appropriately compassionate thoughts and sentiments from every viewer without doubt. As the documentary went to air, according to the end credits, he is scheduled for an operation in October. We will all wish him well.

Simona de Moor suicides after being handed a lethal potion by well-known euthanasia doctor, Marc Van Hoey. Strictly speaking, an act of assisted suicide, Mason’s voice over makes it perfectly clear, as any thinking viewer will realise, that de Moor’s trigger for her desire for death is the recent death of her favourite daughter from a heart attack only a few short months earlier. She is grieving. We are told that she has another daughter who is estranged. As was the case with Tom Mortier’s mother, it was not deemed necessary that de Moor try to re-establish her relationship with this daughter and, like Tom’s situation, that daughter will only have learned about her mother’s death afterwards.

At this, I found myself raging inside. During a time of grieving it is never sound practice to make life-changing let alone life-ending decisions. Where is the simple, natural and normal thought to provide comfort, support and encouragement for this dear lady through the grieving process? Gone! Evaporated on the altar of autonomy and the Belgian love affair with personal choice.

Indeed, that is precisely how van Hoey puts it. After taking part in more than a hundred euthanasia deaths it would seem that this obviously caring doctor has perhaps become cold to other less drastic and more truly compassionate alternatives. A truly shocking counsel of despair: doctors as little more than dispensing machines for people’s darkest choices.

Peter Ketelslegers’ situation is tragic in the here-and-now. During the telecast last night I had contact from two people who wanted to provide help for this man and his family; including one who had found successful relief from the very same ailment. As with all these matters, things are never as black-and-white as they might seem and there is always hope.

As Ketelslegers’ story unfolds, we see the poignant interaction with his wife and his two children. His wife Conny, understandably seems wearied by Peter’s difficulties. He talks about being a burden on them. She is clearly loving and dedicated to Peter and the family. She tells Mason:

“At some point you would be enormously selfish to keep your husband with you when he knows that he’s in so much pain, so I stand behind him.” 
Mason: “You’ll let him have his wish?” 
Conny: “Yeah. With pain in my heart, but yeah.”
How incredibly difficult. There’s no sense of anything other than standing with Peter as she clearly has done so well and for a long time. But for Conny, there are no apparent choices.

A tweet came to me from a genuine inquirer: “if you had power to decline his request, what would you say to him (Peter). How would you justify he should continue to suffer?” A very good question and one I think that everyone who opposes euthanasia and assisted suicide needs to grapple with.

We cannot stand firm in opposing any changes in the law without doing whatever we can to pressure those in power to provide better care. As Mason and others observed, ‘unbearable suffering’ is entirely subjective; but that should not stop nor hamper progress nor the drive, from a compassionate disposition, to do everything possible to ease such distress.

But black-letter-law can never adequately describe nor restrict such laws to a particular cohort nor to a particular understanding about for whom the law is intended and under what circumstances. Nor can it ever account adequately for the necessary protections for vulnerable persons. Currently, absent euthanasia laws, Simona de Moor would hopefully had her real issues of grief addressed. She was indisputably vulnerable.

Congratulations to Brett Mason and SBS for this fine work.

View the documentary HERE
Read Brett Mason’s blog HERE
View ancillary footage and information HERE


1 comment:

Jule Koch said...

Reading about Mr. Ketelslegers's headaches - my mother suffered from cluster headaches for 40+ years, from about age 48 on - they were terrible. Cluster headaches obviously vary in intensity - my mothers' did not last as long as his, but I can say that once she was no longer able to hide her suffering and we saw exactly how horrible the headaches were, we thought they were unbearable and didn't know how she coped with them (still don't know). When they were at their worst they came and went every hour round the clock, day and night, no letup. That intense period could last for about 2 weeks, then they would gradually taper off over the next few months before intensifying again.
In any case, my mother before us and we, once we assumed her care, tried everything from diets to supplements to oxygen, nothing worked.
However, when Mom was 83 years old, the doctors found that giving her Indomethacin prophylactically took the headaches away completely. All she needed was three pills a day, every day - I don't remember the dosage, and the headaches disappeared.
However again, after 5 years headache-free, Mom developed other health problems, which the doctors thought might be from the Indomethacin, though no one was sure, and after that we had to figure out something better. Eventually we realized that the Indomethacin would kick in right away and that its effects would last for a few weeks, so we were able to keep Mom pain free with about 12 pills a month, which was fantastic.
Mr. Ketelslegers certainly has my sympathy - I hope he is helped by the surgery or is able to find a medication that works for him, and I pray that he somehow finds a reason to continue to live.
My mother, during all her suffering, never once asked us to kill her and would have been horrified by the thought.
I hope this might help someone else with cluster headaches because doctors don't really know what to do for the condition.