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Human rights and bioethics updates

A blog dedicated to updating you upon legislation and ethical debates around human rights (principally under the angle of law-enforcement forces) and bioethics (under the angle of the protection of vulnerable persons). You are welcome to leave your comments on any of the posts!

Thursday, November 17, 2005

Mara’s fight (3) : A sad ending to a valiant fight

This is the third and final post which covers the final outcome of my mother’s fight for life. It is my great sadness to have to tell you that my mother, Mara, died in the night of the 4th to the 5th November 2005.

My father and I suffered a great loss when we saw she who had been the soul and the conscience of our family die in this tragic manner.


Medically speaking, she suffered a massive internal bleeding – especially from inferior viscera – and the resulting drop in blood pressure provoked her death, despite attempts to transfuse her and to resuscitate her in accordance with my instructions (see Mara’s fight (2)).

A few days before, a scanner had found evidence of cancer extensions to the lungs, the kidney glands, the bones and the intestines. It is hard to say, hard to admit for a loving son, but with such damages to her body, the final hour of my mother was coming soon or late.

Nevertheless, I had given instructions to the physicians to continue care, even if it meant to go into therapeutical relentlessness. I have to confess to a row with some Belgian priests who found that I had given wrong instructions, because the Catholic church refuses medical efforts when they are bound to fail.

I have maintained a great independence of mind from each and every influence to push my decision in one sense or another. I found, in fact, that as a son, I could never have given my mother death – as some priests were suggesting. The point, when refusing therapeutical relentlessness, is that nobody can absolutely say which is the point of non-return in medical matters; hence, in my view, the good point is in giving a loved one all the possible chances to survive.

Friday, November 04, 2005

Mara's fight (2): zig and zags on the path of hope

The past week has been a continuous zig and zag between hope and despair for my mother. As I recalled in my previous post, my mother suffered a second septic shock, and her situation was pretty downcast by Friday, 28 October.

I was saying in my previous post, that the illness of my mother was the occasion for me of doing practical bioethics. I did not imagine that it would come so early, though.

On Thursday 27 October, when perspectives seemed bleak for my mother, a female nurse (with an exquisite sensibility, more akin to a bulldozer) asked me what I envisaged for my mother, and whether I realized that she was not bettering. I answered positively. I said that everything had to be undertaken for my mother, as long as there were signs that her vital functions could continue. Unsatisfied by the answer, the nurse went on: « Thus even if your mother has to die of cancer in awful pain, with terrible sufferings, we have to do anything to keep her alive? » I answered yes, and added that a decision as to the treatment with regards to cancer would have to be taken after an evaluation of the degree of evolution of the cancer. If it was in terminal phase, then a palliative care issue might be considered. But until then, my mother had to be given all her chances.

The answer was probably unsatisfactory, because the nurse came back to attack: « And if your mother does thirty heart attacks, we have to keep reanimating her, by massaging the heart, if need be? » I answered again positively. She then told me that she knew my way of thinking, but that she reopened the subject simply because « people might change opinion from one week to another, you know ». Under those circumstances and with such a presentation, I am sure that people who are not trained in these fields or do not have the ressources of faith to support them, might well change opinion, indeed.

Since I am speaking of cancer, let me precise that there is indeed efficient pain-killing therapies for patients suffering of cancer or other painful pathologies. It might be through the use of morphine, or even through sedation. In an intensive care unit, sedation is present essentially because most patients cannot breathe autonomously. Thus, the machine which enables respiration (my mother is breathing an air enriched at 65 % in oxygen – whereas normal air which we breathe has only 21 % O2) is more easily regulated, since the patient does not have to make the effort of breathing.

A final word, which would like to be a word of encouragement for all those of you who have or may have a relative in hospital – and especially in an intensive care unit: you ought not to be impressed by all the machinery and the number of drugs that are administered to the patient.

Just to give an illustration: my mother is under treatment with cortisone, with Xigris (Human Recombining Human Protein C), two medicaments whose effect in septic shocks is just starting to be documented. Now, a precision as far as corticoids are concerned: they have as an effect of depleting the immunitary system, because they are powerful anti-inflamatories, and thus it is a mixed blessing: the patient may recover from a septic shock, only to be killed a few weeks later by an infection. And Xigris is a mixed blessing as well: it might cause bleedings or strokes in the patient. The US FDA accepted Xigris only for the most severely touched patients - that is a sign of how bad my mother is presently.

This being said, my mother is also being treated by dopamine and dobutamine (two neurotransmitting molecules which enhance blood pressure and heart rate). She is also treated – although it has been much downgraded – by noradrenaline (Levofed), a powerful drug supporting the heart. She is under dialysis (her blood is purified by a machine), and she takes powerful antibiotics.

Drugs and machines do not dehumanise the patient. It is your attitude, and your presence at the bedside of the patient that makes all the difference. For whoever believes in the communion of saints – and for the non-believers, in the “powers of the spirit” - being there even when the patient is incapable of reacting, has an importance. There is subconscious level at which events penetrate even sedation, and there is a belief that the other might be cured which has a therapeutical importance – remember the “placebo effect”?

Hence, speaking about the patient in negative terms, before him or her should be avoided. Encouragement can be given, even by simply holding the hand of the patient or speaking, caressing or kissing – if it is allowed.

I would like to conclude on the chapter of the “humanity” of the patients who are unconscious – there was a Belgian bill that purported to authorise their euthanasia. The dignity that is reserved to such patients is often a factor of human will. I will leave the Indian author Anita Desai conclude for me in one of her beautiful short stories “Royalty”:

“My dear, true souls do not turn away from humanity or, if they do, it is truly to meditate and pray, then come back, fortified, to embrace it – beggars and thieves, lepers, whoever – their sores, their rags. They do not flinch from them, for they know these are only the covering, the concealing robes of the soul, don't you know?”

Anita Desai, “Royalty”, Diamond dust and other stories, Chattee & Winidus, London, 2000, p. 13.
(Desai works at the MIT and was a visiting fellow at the University of Oxford).