In the loving memory of Edith

Some days ago I had a discussion with an English speaking visitor.

During this conversation I attempted to share my experiences related to excesses both in therapy and in family interventions to extend life no matter what the implications on the person who is suffering.

It was difficult for me to find the appropriate translation in English of ‘acharnement thérapeutique’ in French. Via a link, I found different translations of the concept I tried to share : « Therapeutic obstinacy »… « Therapeutic relentlessness » ... « Therapeutic artificial prolongation of life »...   « Therapeutic overtreatment » ...
I tried to share my experiences about the insistence of some medical doctors on extending life at all costs, regardless of the hopelessness of the case and regardless of the physical and/or psychological suffering which must be endured by the patient.
This practice adds more anguish to an already unbearable illness - the feeling of being misunderstood, of not being acknowledged and of being excluded from any decision making - and only serves to increase the loneliness of the patient.
The patient yearns to be acknowledged and hopes to be heard, waiting for his suffering to be validated ; but often, when medical doctors are confronted by such suffering, they feel that their ethics compel them to pursue treatment- heavy medication, internment and deprivation of liberty.  Essentially the patient is ‘condemned to stay alive’
Some sensitive parallels can be drawn with parental and family interventions.
The concept I was trying to share is difficult to express in words.  My daughter asked me for help to end her years of intractable psychological suffering, but instead of helping her in her request for euthanasia, I sent her back to her psychiatrists.  Blinded by my love for my daughter and my selfish desire for her to stay alive, no matter what price she had to pay, I gave more value to what the doctors told me than to what my daughter had explained to me.
I'll spend the rest of my life regretting this.
Stranded between therapeutic and parental reluctance to acknowledge and validate her suffering, she felt alone, completely forsaken by everyone.

During the conversation I was asked whether it was too difficult to speak about what happened to Edith.

The answer is definitely yes. It is one of the most difficult and painful things I’ve ever done and whenever I do it I need some time to recover from this existential experience.
If I continue to act as a spokesperson about what my daughter taught me during her 18 long years of psychological suffering, testifying about the misunderstandings that exist between patients, doctors and families, it is with the hope that this can help people who are experiencing psychological suffering and that this can help their close family members to improve their understanding and their communications. Perhaps this can also help to improve understanding and communications in the clinical setting for patients experiencing intense psychological suffering.
And yes, it is important to continue testifying because it is an opportunity to keep my daughter’s memory alive and it helps me to address other aspects about the ‘Libera Me’ spirit.  

At the end of the discussion I said that I was not unreservedly for euthanasia as such.

For me, life is something fantastic, almost magical, something that must be experienced as long as possible, even if it is not always taking place according to our dreams.  Every age gives opportunities to open up and to learn, both individually and in our relationships.
What I tried to share in that discussion is the realization that grew in me after Edith’s painful, bloody and lonely death, of her being forced to carry out her own euthanasia in a room in a psychiatric institution after she had been abandoned by everyone.
Euthanasia is a possibility that must not always be pushed aside with all of the ‘good’ reasons expressed by the patient’s family, friends and medical providers- whether these reasons be personal, ethical, philosophical or religious.  Euthanasia, even of a beloved child, is a possibility if it is the will of the patient.
The Belgian law on euthanasia provides for the patient’s rights and guarantees protection against external interference when there is a repeatedly expressed will to die on the basis of suffering.  Edith knew this.
But when I asked advice from doctors they convinced me that the case of my daughter didn’t fit in this law.
I understood to late that this was a big lie.
Too late, I learned that some doctors don’t want patients to express themselves and they believe that they are the only ones who know what is best for the patient- at any cost for the patient and at any cost for the loved ones of the patient.
This is why I started becoming active as a witness and a spokesperson... to testify whenever I have the opportunity.
I wrote letters to the people in charge of medical ethics and to elected politicians, I followed debates at the Belgian parliament about the right to die with dignity, especially in cases of psychological suffering.  I testified to explain what happened to Edith, to tell everyone that Edith’s horrific suicide was not an isolated case.
It is time to listen to the people who are experiencing such intense psychological suffering.
Subsequently people began talking to me about experiences in their own families, experiences they never dared to speak about, young people who committed suicide by hanging, throwing themselves under trains, jumping from bridges...
There are 7 suicides every day in Belgium, 6 of them due to psychological suffering… a statistic I have seldom heard about.
Families are silent about this. They don’t speak about this. They don’t even know it is possible to speak about it.
Through testifying, I have discovered the loneliness of families left behind and realized I was not alone.
And I hope that these families understand that they are no longer alone.
I was invited for a talk show on Flemish television, was interviewed in the Flemish and French Belgian press and was invited by Belgian associations for the right to die in dignity. I contacted parents who had experienced the same tragedy in their families.
It’s only then that I fully realized what Edith went through, that Edith was prevented from dying with dignity, and was not allowed to say a final goodbye to her parents, close family, loved ones, colleagues and her many friends around the world.
Minutes before Edith’s own self-inflicted euthanasia, my wife’s phone rang and she saw the name of her daughter on the screen, but only silence on the other end, a silence that will now last forever.
My wife and I will live with this memory forever, and every day this memory convinces us to continue our fight to defend the rights of patients against the judgement of their doctors, even if the patients are young.  Even if the patient is a gifted young woman, a young woman like Edith who spoke multiple languages, played saxophone and piano, aspired to be a theater actor and was beloved by everyone who knew her.
I am now an unflagging defender for the right of the patient, I’m a defender of the most important right of the patient- to be heard, even if the request- a request for euthanasia- is difficult to accept, especially when it means the death of a young person.
If we listen carefully to the patient’s description of their suffering, if we give them time to fully describe what they desperately need to express, if we fully discuss with the patient and understand the request for euthanasia, especially if the patient has suicidal tendencies, and if the patient clearly confirms a decision for euthanasia, then we must not throw up obstacles.
Another statistic convinced me of this approach: more than 50% of patients experiencing psychological suffering who go through the procedure of requesting euthanasia, end up not wanting to die anymore.  Once they have the liberty to make decisions about their own lives, they chose to stay alive.
According to these Belgian statistics it means that an average of 3 persons per day could be saved only by listening to them and respecting their rights.
Remember this: appropriate listening and communication can help save lives.
Listening without judging gives them peace by acknowledging their suffering.
My only experience is the suicide of Edith.
When I discuss with family members of patients in psychical suffering who were euthanized, a word is shared by the near family and beloved who assisted this ultimate farewell: serenity.
It is difficult to attain this kind of serenity with a police report in mind about the violent suicide of a daughter.
I am at the opposite end of what is called serenity.

It took some years in Belgium to accept the principle of palliative care for patients at the end of their lives. An ultimate act in palliative care is called ‘palliative sedation’… the ultimate medical intervention …

This act of palliative sedation is decided not by the patient, but by the doctor and the near family and loved ones of the patient.
In the case of euthanasia, the request for the ultimate medical act comes from the patient.
For me this is the main difference.

Difference? Aren't they different words for the same medical act? Certainly a terrifying difference if understood in the meaning of the ultimate struggle for power and control between medical doctors, family members and the patient.

Is there a great difference between palliative sedation and a euthanasia?
The difference is that in the first case the decision is taken without the patient’s request… and in the second case the decision is made by the patient himself!

Writing down this morning what kept me awake last night, motivates me to do what is expected of me, to keep Edith’s memory alive.