Bioethics Discussion Blog: Dying in Belgium: The Euthanasia Way

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Wednesday, April 22, 2009

Dying in Belgium: The Euthanasia Way

In Europe, the second country to legalize active euthanasia is Belgium. The Netherlands was first and more recently Luxembourg made the same political decision. Active euthanasia as legalized is for a physician to provide and carry out the means to end the life of a patient at the request of the patient who usually has an incurable condition, in great pain and discomfort which cannot otherwise be managed to the patient's relief. The details of the criteria and process may vary between countries. Philosopher and ethicist and Professor and Chair, University of Hull, Raphael Cohen-Almagor, D.Phil.has written an educational and insightful article in the Issues in Law & Medicine, Volume 24, Number 3, 2009 titled "Euthanasia Policy Practice in Belgium:Critical Observations and Suggestions for Improvement." It is available as a pdf file by going to this link.

The article is very readable and provides, as I said, insight into potential weaknesses or uncertainties in policy and law which is still pertinent to euthanasia in Belgium but also should be considered by other countries considering euthanasia.
After reading the article, come back and voice your opinions about the good and bad of euthanasia. ..Maurice.

10 Comments:

At Thursday, April 23, 2009 7:44:00 AM, Anonymous nurse line said...

Didn't know that this thing still exist nowadays... I did seen this on some movies but could not believe they do still apply this method. but i guess they do have better explanation for doing this.

 
At Friday, April 24, 2009 12:28:00 AM, Blogger Mandy said...

I started to read the document but am afraid it is too long for me.

My staying power isn't what it should be. However, my first concern was when I read about 'incompetent people'. Those who are deemed unable to make decisions for themselves.

If we are looking at a worst case scenario then mentally ill people (depending on the severity of their illness and another's (or clinical group's) judgement on their 'incompetence' that is very dangerous ground to be on in regards to looking at their quality of life.

I do believe that people should be able to choose when they die rather than lingering on in agony for the sake of others' (society's)sensitivies. I do also believe that if someone's mental illness is a continual agonising state for them to be in that, should they wish their life to be taken (via euthanasia,) that is as justifiable as it being an option for someone with terminal cancer.

The debate that should go on in regards to that is the quality and efficacy of treatment the individual has been receiving for their illness (along with their environment and existing family and support networks)...as in if there are ways to improve the quality of life that haven't been looked into and may help then they should be.... and I would expect counselling and support services to provide objectivity and compassion prior to euthanasia being seen as the only option.

I appreciate that the taking of a life, with the person's full and prior consent, is still seen as extreme but I think people being forced to carry on living what little is left of their life in intolerable pain is barbaric.

 
At Saturday, April 25, 2009 8:21:00 PM, Anonymous Anonymous said...

If someone wants to end their own life, fine , go jump off a cliff. If someone can't do it themselves, fine, the government comes and picks them up and pushes them off a cliff. But leave the doctors out of this, their job is to heal not kill.

 
At Sunday, April 26, 2009 1:53:00 PM, Blogger Payne Hertz said...

I haven't read through the entire article, but the author does identify some potential flaws and dangers of current euthanasia laws in countries that have legalized the practice. His solution, however, amounts to giving the medical profession veto power over a patient's request for euthanasia in an attempt to minimize or curtail potential abuses or those situations where perhaps a doctor has unwittingly failed to adequately inform the patient of all his alternatives or unconsciously promoted the choice of euthanasia over other options. While his proposals seem logical and reasonable at face value, giving the medical profession veto power over a person's right to decide their fate at the end of life in itself opens up the possibility for further abuses, and is a denial of the patient's right to autonomy.

It should be noted that in the Netherlands, over 2/3 of euthansia requests are rejected, and the various hoops that have to be jumped through to get an approval must be extremely difficult and nerve-wracking for patients who are already physically and emotionally stressed by their illnesses and the reality of impending death with its attendant suffering. This high veto rate seems inconsistent with the stated goal of minimizing patient suffering at the end of life and respecting patient's right to autonomy, though I am sure Dutch doctors trumpet this statistic as evidence that the safeguards are working...albeit for themselves.

Secondly, giving doctors veto power over euthanasia requests opens up the potential for severe abuses in the form of quid pro quo demands by the medical profession ("if you want to end your suffering, it will cost you"). A good example of this is the severe abuses that occur with the treatment of chronic pain in the US, where doctors are able to force their patients to sign coercive contracts essentially stripping them of their rights and autonomy, can compel patients to undergo costly, unproven or dangerous procedures where kickback arrangements have been made with other parties as a precondition for receiving pain relief, and can demand perfectly legal "retainer" fees of as much as $500 a month or more in exchange for writing scripts for pain medications. They can do all this while treating patients abusively and with contempt, and they get away with it, every day.

I can see a similar dynamic quickly developing as unscrupulous doctors realize the profit potential of euthanasia requests.

The author points out as one of the pitfalls of euthanasia the danger of doctors steering patients towards euthanasia and away from other options, whether consciously due to ideological reasons or to save the state money, or unconsciously when the doctor fails to adequately describe those other options. But the reverse is also true. Doctors may use undue influence to paint an overly rosy picture of the efficacy and benefits of palliative care (as many anti-euthanasia activists are wont to do), either due to ideological reasons or because end-of-life care is a major revenue stream for the medical industrial complex, with the average patient accruing the majority of his lifetime medical expenses at the end of life. Allowing patients to opt out of the system through euthanasia has the potential to remove an enormous amount of profit from the system, and I don't doubt for a minute that much of the supposedly "ethical" opposition to euthanasia stems from this very fact.

I don't pretend there is a simple solution to the problems the author identifies, but at the end of the day, patient autonomy must triumph over all other considerations and there should be no veto power whatsoever over a patient's decision to end his life, either through assisted suicide or euthanasia. Giving the medical profession veto power also opens the door for abuses to occur and hardly seems a just solution if the goal is to minimize patient suffering and respect patient autonomy, rather than milking the dying as cash cows. The only safeguard the medical profession should have the right to insist on is to insure that the patient has been fully and carefully informed of his or her options, in a timely manner, and let the patient make the decision from there.

 
At Tuesday, April 28, 2009 2:23:00 AM, Blogger sad mum said...

There is no simple solution, especially when most of the current forms of euthanasia is covert and inhumane. How do I know? I have experienced it first hand, watching my child die a long slow drawn out death, a mere baby born to die.

A simple injection would have ended her suffering, and mine. But no, medical intervention and all you chicken shit doctors just doing your job, preserving life, what a joke.

I dont suppose you'll publish this given my resentment and anger, but how would you feel if your child starved to death under the guise of palliative care. Who made doctors and politicians an extension of the socially constructed figure that we call god. How dare all you fake religous morons tell me that euthanasia is unethical, while you sit on your alters dictating, my baby was starved to death, right under my nose, you unethical pack of dictators. You will soon hear me; and of me because my anger at the brutal way that my child had to die because of your unethical ethics, and lack of empathy, to promote the sale of over priced drugs to prolong life has me bursting at the seams and my story will be told to anyone who will listen, and whether its too confronting, or whether they like it or not.

All of you right to lifers without this experience need to re think your position on this because the alternatives are not good and this happens every day every where.

Regards Kerry

P.S. I welcome debate

 
At Wednesday, April 29, 2009 4:10:00 PM, Anonymous Kayla said...

We can spend ages debating about euthanasia, whether it is right or wrong, or the best way to do it. But as far as I understand it the issue goes deeper, into the way that we value the individuals in our society.

People have come to be valued either by their performance and what they are able to do, or by their potential to perform at some time in the future (the hope parents have that their children will "be somebody" someday). Therefore, if someone is old or in pain and no longer able to contribute to society, because of the way that we as people have been taught to think, they no longer consider their lives to be of value.

I have worked in nursing homes and have seen this to be true in many cases. But does that justify their having the right to take their own lives? Does it not fall upon me to respect them as individuals and help them to see that they are of value so that they no longer desire euthanasia?

In the reading that I have done about euthanasia the thing that has struck me the most is that there IS a demand for it. And I have only ever heard people speaking about how to respond to that demand, not about how to remove it.

The thought of legalized euthanasia makes me very uncomfortable because I feel like from that point it is just a small step towards killing handicapped children, perhaps even having the government or scientists determine who can have children and who cannot. I recognize that these are not exactly the same issues, but they are a natural result of the thinking that has led to the desire for euthanasia - the value of the individual based upon performance.

I would agree that technology has created a dilemma in that people can be kept alive indefinitely when even decades ago they would have died naturally. It has already been stated, however, and I would also agree on this point, that there is a difference between choosing to die and choosing how you would like to spend the rest of your life (being at home instead of on life support, for example, which I would probably prefer as well).

As a 20 year-old I have not had the experience of seeing any of my close friends and family going through intense pain as they die, and my heart breaks as I read the testimonies of the many people who are calling for euthanasia because they have had those experiences. However, when that time comes, I hope that I will be able to stand with them in their pain, valuing them and encouraging them. One thing that I have learned in my 20 years is that pain does not diminish the ability to love. And it only enhances it's beauty.

 
At Thursday, April 30, 2009 8:55:00 PM, Blogger Maurice Bernstein, M.D. said...

Here is a lengthy but interesting discussion of euthanasia and plan for its implementation by a visitor from France who writes by the name of John The Seeker and has given me permission to also post his e-mail address: johnseeker@ymail.com

..Maurice. To position myself for what follows, I am not in the medical field, nor of academic level. It is hopefully common sense, often lost, so I am told, in expert discussions confronting the abyss of technicalities. Please bear with some preamble waffle as a kind of spiralling in on.

It would seem that untill there is a large consensus on the purpose of life, then deciding if and when it should be terminated is based on something that may have nothing to do with that purpose - essentially on moral perceptions related to suffering and the impossibility of stopping that suffering by other than Euthanasia in one form or another.

I cite part of the WHO definition of palliative care - ".... that control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount". I find it pretty astounding that this is considered a special form of treatment that is only slowly making inroads into medical practice. If we rephrase it a little, then I would define Healing as dealing with symptoms, including psychological, social, and spiritual problems. In that sense, I would call myself a Healer, as I try to deal with such problems in a non medical way, when a person feels that the medical world cannot seem to resolve them satisfactorily for him/her and so seeks alternatives. It follows that such persons are not in a hospital or other specialized treatment places, but may be having medical treatment, such as radiotherapy.

It would seem that such 'healing' is considered special, ie palliative, when, in my view, it should be the norm! A patient seen in need is sent to shrinks, social workers, or the local 'priest', if the 'system' allows that, and so no one person is handling his entire problem range and they are probably not all pulling him/her in the same direction. I am not trying to suggest that the full palliative measures be applied from the word go (obviously there would have to be different levels of it) but that early in the treatment cycle it should be established if some of the roots of the patients problem(s) are not to be found in his/her life attitude/situation. For instance, existential crises are not that uncommon and quite often have medical consequences, or a health problem may provoke one!

In France, where I live, the system does not allow it. Doctors are not allowed to recommend osteopaths or anything outside the 'established' medical professions. The result is that when I had a problem of atypical pain from my backbone to my right hip, which rendered walking impossible without a crutch and beyond 50 metres in any case, I got sent for all sorts of tests, including xrays and a scanner, with no indication of the cause of the problem as a result. Finally my doctor said, you are too young at 68 to walk with a crutch like that, and sent me for physical re-education(shades of Pilate). As luck would have it, the Therapist that I visited was also an Osteopath. He diagnosed and fixed my problem straight away. So I did not get cured at great public expense for all the tests that I had undergone when, for 40$ of my own money, I was fixed in 5 minutes!

What this leads to is that a Euthanasia decision is not entirely a medical establishment problem, they don't necessarily have all the required competences, even if the medical view is the essential keystone and medical personnel are the ones confronted with the problem. For example, a patient with incurable terminal cancer in medical terms may actually be curable by non-medical means that initiate what I think is called a spontaneous remission. Admittedly, possessing the capacity to do that sort of thing is very rare and its actual use even rarer.

So should incurable pain and/or terminal disease be the only criteria for Euthanasia? It would seem not - the level of the Quality of life /Human Dignity should also be taken into account. I suppose it could be argued that the two are basically synonymous/interchangeable, but I consider them separate. On French Television, two or three people in recent years have been waging campaigns for permission to be euthanized because their life was unbearable. One woman had an ex orbited eye and a very distorted face on her left side, worse than a horror film, because a tumour was growing behind the eye and they could not operate without killing her - I ignore the technical details. If she had been an animal she would have been put down straight away and because she wasn't, she was obliged to suffer for three additional years until she eventually went to Switzerland to be put out of her agony. It seems clear that in some cases we make people suffer more than animals would, and in the name of what I ask, some law without compassion? I find that most unacceptable!

If you are bedridden, you have lost autonomy and Quality of Life. If you have to be toiletted and fed and/or evacuated via tubes, you have lost more dignity and Quality of Life. If there is no possibility that it will ever change then you have no Quality of Life and also no hope and thus will become depressed to boot, alive only in technical terms. With provisos, that in itself should be grounds for Euthanasia because one would otherwise be preserving a life with no meaning or sustance. How can one know the depths of mental suffering that such a situation has for the person concerned, if they cannot express it and when even words are quite inadequate to truly express feelings and require the same shared experience to be really meaningful? If they are in a coma then how can one know how much they are suffering mentally?

If you practice the right kind of meditation, you can succeed in stopping all thought. Decartes was wrong, as "I think, therefore I am", also means that if you don't think then you are not and that is untrue. If you do not think, you are free to become aware of the more subtle aspects of your Being, such as your Soul. You perceive things at a different level, one which is normally entirely masked by the tempests of the thought processes, though 'intuitions' may break through on occasion. That level may also endure great suffering because of what is happening at the lower ones! This means that all discussions concerning the patient should be outside their hearing range, something that appears not to always be observed when the patient is deemed unconscious.

It is clear that terms such as terminal medication, with-holding treatment, etc, exist because they are attempts to do what is really required outside a legal framework, either because one does not exist or, if it does, it does not cover that case. We are now faced with additional problems that were not too apparent before.

For example, my mother was a midwife for many years. When I was old enough to understand, I asked her what happens to babies who are encephalitic (if that's how you spell it, as I was looking at a picture of one in her medical dictionary)? Her reply was "the scissors slip and the parents never see the baby". Seemed perfectly just and simple to me at the time. In other words, Euthanasia was undoubtedly practised, even quite widely for specific cases, in a kind of open secret. Nowadays that's not possible because of advances in technology and the fear of lawsuits for incompetence or worse.

Alzeihmers, with doubtless other things that have yet to manifest themselves, are becoming much more of a problem as more people grow even older than before.

It seems a Law on Euthanasia needs to achieve several things:-
1 Ensure that there is no abuse
2 Ensure that those concerned are not obliged to do anything against their beliefs, deontology, or ethics
3 Ensure that those who really need and want Euthanasia get it, and quite rapidly
4 Ensure that those who cannot pronounce for themselves do receive it, if it is justified
5 Protect the patients and their families from excessive zeal for deciding one way or another
Doubtless there are other technicalities as well

The problem with a standard Law is that it is always open to interpretation, and often has specified exactitudes, such as 18 being the age of an adult and anybody less is a minor, which cause problems - you dont start being an adult on your 18th birthday, except legally!

What I propose is a different kind of Law, a Law that authorises a Process, and if that Process is correctly carried out, then those carrying it out have legal immunity for their actions. What that Process should be should be not defined by politicians, they usually have no competence in such a matter and it is not a subject for ideological views. What they should define is whom is responsible for defining the Process, monitoring it, executing it, and reporting on it.

What that Process should be, others will know better than I, but it would seem to include the following as a basis:-
A The establishment of a National Advisory Committee(NAC) that determines Guidelines on what should constitute grounds for Euthanasia. Obviously it will consist of medical experts in various disciplines, but it should also include religious, social, philosophy, and other pertinent representatives.

In addition, they determine the constitution of Local Committees on some geographical basis, say one per large city that also handles the surrounding countryside. These Local Committees apply the Guidelines to the individual local cases and may ensure rapid action when that seems necessary. The NAC provides statistics to the appropriate authority, presumably the Health Minister. The Guidelines and statistics should be available publicly in the interest of transparency.

B A Local Committee may be formed of:-
1 A representative, at some level, of the state, basically an Administrator /Committee President in charge of ensuring the Guidelines are all applied and keeping order in discussions.
2 Two Physicians, not known to that of the patient's or any involved treating team members, with one an expert in the pathology concerned
3 A representative of the patients religion, if they have one, or an ethics advisor if not
4 A medico-legal advisor on the technicalities/considerations
5 A Social Worker
6 Any other persons deemed necessary by the nature of the case
7 Written/audio/video testimony of
a) the patients desires from the patient, where that is possible
b) those of all the medical personnel attending them, including Physicians
c) those of the family members, expressing their circumstances, their own desires and any they believe the patient has

This local committee has a certain small leeway in interpretation of the guidelines in accordance with the customs and traditions of that locality, allowing its particularities to be somewhat taken into account (Salt Lake City comes to mind). If the case seems very borderline, then it would seem the NAC may be consulted. The actual identity of the patient is not known to the committee. It seems likely that the committee meetings should be filmed for more than one reason.

C Where possible and circumstances permit, then the patient should already be in the palliative system and I've previously commented on that. This means that palliative treatment has been applied before reaching the point of Euthanasia, thus defusing the contentions between the two subjects. On a personal note, I am particularly keen on the palliative system, because my own mother benefited from one 4 years ago when she had cancer at the age of 91.

There was one unit of 20 beds for a city of nearly a million people and it was financed entirely by donations. The care she received seemed really excellent and she was very pleased to be there and I also saw how other families were equally pleased by the care and, even if sad, none seeming to really suffer. It would seem the reduction in family suffering, because a loved one is particularly well cared for, is an important consideration and this should appear in the Guidelines, as it is not just an individual's suffering that needs to be taken into account, even if that is paramount!

D If the required majority of the Local Committee reach an acceptance decision that the Administrator endorses, it is then referred to E, otherwise direct to F

E An action group, whose purpose is to carry out the required act, using the method indicated by the Local Committee. Personally, I believe the members of this group should not be medical staff. It does not require great competence to inject the contents of a syringe into a drip tube or give someone something to drink. The action should be carried out by one member and witnessed by another, who also films the procedure. Presumably a doctor needs to be on hand to sign the death certificate and deal with whatever follows.

Consideration should be given that, after one act, those two persons are not used again, but that may depend upon the number and suitability of volunteers available.

F A report to be sent to the NAC, signed by all members of the Local Committee, expressing their acceptance or not of the committee decision and their reasons. Also an outline of any significant difficulties they thought the guidelines caused in this individual case. With this report should be sent a copy of the film and the testimonies used

It would seem there are some good advantages to this system, for example:-
1 The people who make the Guidelines have no other involvement. The people who decide individual cases have no other involvement and neither do the action group.

Nor do those medical personnel actually dealing with the patient. The Physician(s) know what the Guidelines are and can see if their patient has a chance of being accepted or not and it would seem there is no reason why he/she could not consult informally with one or more members of the Local Committee. They simply submit the appropriate testimonials if they believe there is a chance of approval. It would seem this would greatly reduces the pressure on them, as they have no individual power of decision, and that seems to be as it should be.

Obviously what I have just outlined in the last paragraph is 'blurred'. I have no competence in those kinds of real life situations, I am just expressing ideas/thoughts.

2 Because of the detailed feedback the NAC receives, it would be in a position to modify the Guidelines to rectify problems of scope and clarity quite rapidly

3 It is not a 'dinosaur' with multiple layers and therefore cheap and flexible by comparison.

4 There is hardly any possibility of abuse because so many people are involved who are not dealing with the patient themselves

5 Individual acts, even those that would qualify by the Guidelines, are thus clearly illegal and so everyone knows where they stand.

Possibly the only disadvantage would be the difficulty in getting political backing for it, smile

One final thought, in the form of a prediction, which implicates an economic factor that should not be a consideration, but has to be. Within 20 years, the increasing economic pressure on the (medical) system, because of the greatly increased number of aged people who are 'far down the hill', will either cause Euthansia to be used on a much wider scale, or many of those persons will be left without any (reasonable) treatment.

A planned progression for the acceptance of Euthanasia using a Process that is refined over the intervening period seems much preferable to ill-considered last minute decisions when there is no longer any alternative.

John The Seeker

PS apologies for any weird/french turns of phrase - I have not used english much in the last 20 years and I have no one to review this.

 
At Sunday, May 03, 2009 6:15:00 PM, Anonymous Anonymous said...

ok....so how soon will I be able to make an appointment with my pcp to get euthanised..like we make and do for physicals now?
While John the Seeker make a lot of sense....I suspect someone will always be wanting/taking a shortcut..and how are we to determine what doctor gives the shot(s)/ pills? I certainly think it would be wrong to force a doctor to assist in suicide if it is against his own beliefs. One can only imagine what taking a class of med students to observe one would be like..
leemac

 
At Wednesday, May 13, 2009 7:57:00 PM, Blogger Fran said...

For introductory purposes: I'm a freelance writer who writes often on end-of-life issues for print & online media & has a (still in print) book "Dying Unafraid." I have long been a volunteer, working with clients and as a member of the board, for Compassion & Choices of N.CA. (Is it OK also to invite readers to my just-for-fun blog I hope? fran-johns-on-celebrations.blogspot)

I'm coming late to this thread, having just discovered your good blog (which is now listed on my own blog) I would urge all those interested in this topic to visit compassionandchoices.org. And/or our local chapter's good site, compassionandchoicesnca.org.

Compassion & Choices does NOT endorse euthanasia. But we advocate for improved care and expanded choice at life's end. We offer counsel and support to those terminally ill, mentally competent adults who seek a humane and compassionate death; and we believe the right to physician aid in dying should be extended.

So many tragic stories, including some among these comments, could be avoided if we in the U.S. would amend our laws so that physician aid in dying, under carefully controlled circumstances, could be available. Oregon has proved this law works, and additionally leads to better medical care. Elsewhere the death with dignity movement is slowly taking hold. This is a discussion that needs to be held, and careful, thoughtful change needs to be made. Thanks, Maurice, for adding to the public discourse.

 
At Sunday, September 22, 2013 3:44:00 PM, Blogger Maurice Bernstein, M.D. said...

Furthering the topic of euthanasia, what follows is an e-mail sent to me today on the subject providing a supporting view. ..Maurice.


Yes, I believe that the physician has a right to refuse, and with the legality issues he/she is completely in their scope to do so. With that being said I am for physician assisted suicide. I, as a health care professional, have seen many wonderful people fight the good fight and die a slow and agonizing death. What quality is that? Some people view suicide as cowardly and the easy way out, but it seems that it would take a lot of courage to take one’s on life in their hands and ask for a way out. I personally feel if I were in that situation and had exhausted all means of treatment then I am not above asking for some one to assist me cross the great divide.

 

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