A Letter From a Canadian Medical Doctor to Legislators
A Proposal for Drafting Legislation
A Report on the Dutch Experience
A Letter From an Ontario Medical Doctor
Concerning Euthanasia Legislation
*Define voluntary euthanasia / assisting suicide as the new activity for our society that it is, and emphasize that it is something other than health care
*In your preamble make it clear what you regard as federal versus provincial jurisdiction on the matter of euthanasia and why.
*Create a new class of professional euthanists, with their own training and their own governing body to oversee their work.
*Replace the entire Criminal Code provision that forbids assisting suicide, with a new Criminal Code provision that forbids assisting suicide that has not been authorized through the new protocol that you will create to govern assistance of suicide.
*Make sure that your new law will be enforceable.
*Appoint non-physicians to adjudicate applications for legal euthanasia.
*Consider a requirement that the last step in administration should be by the applicant. I.e., that the deed should be assisted suicide rather than passive though voluntary euthanasia.
THE FULL TEXT CONTAINS IN ITS LAST SECTION MY FIRST DRAFT PROPOSAL FOR THE NEW LEGISLATED PROTOCOL FOR PROCESSING APPLICATIONS FOR LEGAL EUTHANASIA.
Letter to Cabinet Ministers concerning revision of the Criminal Code to allow euthanasia
I am writing to you about the new euthanasia legislation that the Supreme Court has ordered you to prepare by June 6, 2016.
I sympathize with you in the complexity of addressing this challenge, and I want to help you if I can.
Why might you want to take the time to read yet one more letter on this subject (I'm sure you've received lots) and consider my suggestions? Because of my experience:
1) I'm an Ontario physician, who from time to time has to deal with requests from patients or their families for euthanasia. I've been in practice since 1977. I worked for four years in the 1980's on the cancer wards of Sunnybrook Hospital in Toronto. For the last eleven years since I closed my family practice, all my work has been with the institutionalized elderly, a group who society seems to think will be the most desirous of legal euthanasia. In my work I deal with people whose health is stable and who don't desire death, but also with people nearing the end of life and requiring terminal palliative care.
2) I know more than most in this country about the Dutch experience of legalized euthanasia. As with us, legal euthanasia got started there not by the decision of parliament but by a 1984 Supreme Court judgment overruling the criminal code prohibition of the practice. They thus have a 31 year head start on us: does it not behoove us therefore to look into their experience, to learn from it and perhaps avoid the mistakes that will inevitably occur in any brand new experiment? I've studied the issues around euthanasia over the years and involved myself politically during the 2009-2010 debate on BQ MP Francine Lalonde's bill to legalize physician-assisted suicide. (Parliament, including the great majority of Liberal MPs, wisely voted it down by a margin of almost 4:1). In the course of this I networked through my physician-contacts in the Netherlands to learn more about the Dutch experience of euthanasia, and helped a Dutch professor of biomedical ethics write an open letter to Canadians and especially our MPs on the challenges of containing the practice of euthanasia by legal regulations. (See attached "Jochemsen: his letter to the Globe".) Unfortunately the Canadian euthanasia lobby has consistently misrepresented the Dutch experience with inaccurate statistics, saying that legalization has resulted in only a small number of euthanasias and that the number is not increasing. Dutch statistics, some of them from government agencies, give a very different picture. See attached my summary "Netherlands euthanasia." In 2014 I traveled to Rotterdam and Utrecht to learn more, and among others I had an hour long interview with Prof. Theo Boer who served on one of the government-mandated euthanasia review committees. (I've attached his 2014 interview with the London Daily Mail on Dutch euthanasia. See "Boer July 14 Daily Mail.") He and I met again concerning euthanasia on Jan. 8 when he was in Toronto at a conference dealing with his discipline of Biomedical Ethics.
3) I've previously involved myself with the Liberal party on the issue of euthanasia. At the time of the Lalonde bill's debate, I had correspondence with my local Liberal MP Michelle Simson concerning the bill and Michelle's involvement with the subsequent parliamentary committee on palliative care.
QUESTIONS I'M GUESSING THAT YOU'RE ASKING YOURSELVES --
-- Shall we define the matter of euthanasia as health care (as did the governments of Belgium and Quebec) and thereby leave it up to the provinces?
-- Would a new Criminal Code provision such as the Supreme Court has demanded, permitting euthanasia in some cases while prohibiting it in others, turn out to be unenforceable? Will juries convict for violations of it? Will the Supreme Court uphold our new law in the face of the future human-rights challenges to it that will certainly occur supported by the very well-funded euthanasia advocacy groups? Will prosecution occur in Ontario and Quebec where investigation and prosecution depends on the provincial governments?
-- In what circumstances (if any) do we wish to prevent euthanasia?
-- Do we see public acceptance and widespread participation in euthanasia as potentially detrimental to the social fabric of Canada? If so, are there ways beyond the Criminal Code by which you can inhibit the spread of euthanasia? (E.g. universal access to specialist consultation and nursing for palliative care -- at present only about 30% of Canadians have access to this.)
-- Why do all participants in the debates on euthanasia seem to assume that physicians should be the ones to adjudicate applications and carry out the deed? Might it be both possible and better for others to fill these roles? (The noted 20th century apologist Margaret Mead said that if society ever chooses euthanasia, physicians should be the last ones doing it. I support her contention and give my reasons below.)
-- If we design a euthanasia system where the administrators of the lethal substance are a new class of professional euthanists rather than physicians, would that satisfy the SCC, whose judgement spoke only of physicians doing the deed? The SCC's February 6, 2015 decision addressed the complaint of a plaintiff who wanted to obtain help from a physician to end her life, so of course their judgement talked about physicians doing it. But wasn't their underlying concern that she should be able to obtain effective and painless euthanasia without impediment? If so, what objection would they have if your new legislation provided for this more effectively and enforceably by the agency of non-physicians?
IF YOU HAVE NOT ALREADY BEEN THINKING ABOUT THESE QUESTIONS, MAY I HUMBLY SUGGEST THAT YOU NEED TO.
Be that as it may, my suggestions for your new legislation are meant to help you with these questions and implement your answers to these questions.
*Define voluntary euthanasia / assisting suicide as the new activity for our society that it is, and emphasize that it is something other than health care
-- If there is no clarity on this point, whatever you do with the Criminal Code will be merely a fig leaf for whatever the provinces decide, and practically speaking will be enforceable only at their pleasure.
-- Moreover, a system wherein euthanasia is done by health care works compromises the trust of weak, conflicted, or unsophisticated patients who need to know beyond a shadow of a doubt that whatever their doctors and nurses propose or do to them is NOT for the purpose of killing them. Also, it tends to sap the morale of physicians and other health care workers who need to give their all to needy suffering patients, while having to entertain the countervailing idea of euthanasia whose implication is that rather than caring for their patient they should be party to killing them. It's like asking us to keep shifting gears between forward and reverse: very hard on the transmission. To illustrate from the Dutch experience, see attached "A Dutch euthanasia story."
*In your preamble make it clear what you regard as federal versus provincial jurisdiction on the matter of euthanasia and why.
Canada is unique in that it will be the first federal country to get into legal euthanasia. If you let the provincial governments into this activity I fear you'll open the door to confusion and bickering in and out of court between yourselves and provinces with differing agendas on the practice of euthanasia. This will enormously complicate enforcement of any criminal code restriction on euthanasia that you attempt to create in your new legislation. (Am I right in understanding that in Ontario and Quebec the enforcement of the Criminal Code depends on their Provincial Police Forces? This will already present a challenge for enforcement of your new Criminal Code provision; how much more so if it is provincial legislation that determines eligibility for euthanasia?)
=> Should the design, oversight, and execution of euthanasia be a federal or provincial responsibility? What might the Supreme Court of Canada say when you and the Quebec government present your arguments to them? If euthanasia were a kind of health care, then clearly this would be a provincial prerogative which is what the Quebec and perhaps other provincial governments want. However, if it is not health care, it's not immediately clear which level of government would have the prerogative. The BNA Act's division of powers won't tell us directly because its framers never imagined government would be getting into euthanasia. However, if euthanasia is a new activity other than health care, would you not have a strong case that it should be a federal responsibility as follows:
1) The BNA Act stipulates that residual (including unspecified) powers belong to the federal government.
2) Where the Act did countenance the legal killing of people, as in warfare or the execution of criminals, it was always the federal government's unique prerogative to define who should or should not be put to death.
*Create a new class of professional euthanists, with their own training and their own governing body to oversee their work. Individual physicians may apply, if they wish, to become licensed euthanists, but should be prohibited from assisting the suicide of their own patients. Euthanists may facilitate applications for legally authorized suicide assistance, but will not be the adjudicators of these applications. I think it would be best if this whole activity were directly administered nationwide by the federal government. (Their activity is not health care, after all.) This will ensure equality of access to euthanasia nation-wide. It will also prevent the complications of the so-called suicide tourism such as has developed in Switzerland and which the Quebec euthanasia legislation seeks to prevent. (Having looked at their legislation, however, I think their attempt to prevent interprovincial suicide tourism will prove unenforceable if and when their legislation comes into force).
*Replace the entire Criminal Code provision that forbids assisting suicide, with a new Criminal Code provision that forbids assisting suicide that has not been authorized through the new protocol that you will create to govern assistance of suicide. You will be creating this protocol only to prevent those situations of suicide assistance that you've decided to prevent. To be effective, you will need to establish appropriate criminal penalties for violation of the protocol, and you'll need to consider how these violations will be prosecuted, judged and punished. After establishing what are the situations in which you want suicide assistance to be prevented, you need to make a sober estimate of which violations juries will be willing to convict for, and which prohibitions of your law the appeal courts will uphold when the euthanasia activists challenge them (as will likely happen from time to time).
*Make sure that your new law will be enforceable.
To make a law that can't effectively be enforced will prove counterproductive to your goal. Better no law at all than an unenforceable one. Recall how juries refused to convict Dr. Henry Morgenthaler for violating the abortion law, and how the Supreme Court finally threw the law out on the grounds that it created unequal access across the country to legal abortion. The result is that alone among developed countries we Canadians have no law restricting abortion at all.
Very few, I think. If you follow the Dutch route, we're likely to share their result of which Prof. Jochemsen warned us: "The more the practice spreads the less political motivation there seems to be to contain it. Prosecutors are reluctant to prosecute and the courts are reluctant to convict."
However, I do think there still are some circumstances where the courts would uphold your new law against human rights challenges, and in which juries would be willing to convict:
1) -- Cases where the adjudicator might have a reasonable concern that if the applicants were refused euthanasia, they might later change their minds about life, and be glad that they had not died. In such cases, your protocol might be seen as actually saving lives that should be saved.
--The depressed person who has just suffered a major loss -- lost their job, spouse filed for divorce, etc. Awful as their quality of life is at the moment, people can and do get over these crises with help.
--immaturity: the youth who wants to die because her boyfriend has left him for someone else while all her acquaintances laugh at her.
-- the depressed person who has not received all the help his family and society can offer for his despair, either being unaware of the help's availability or having been deprived by his illness of the mental energy to reach out for help. As a physician, society has accorded me the power to send a depressed suicidal patient into police custody to be taken to a hospital for immediate psychiatric care in the hope that having recovered they'll be glad we intervened. (I recall one such patient after whom I had to send the police, and a long time afterward came back to thank me for it with a big bouquet of flowers.)
-- the ambivalent or conflicted person in whom a desire to die and a desire to live co-exist. Later on, they may settle into a clear decision one way or the other. If that decision is to die, they will still be able to obtain legal assistance at that time and get their final clear wish.
If on the other hand, that final decision is to live, they will be able live if the application had been refused. However if the application had been granted, they would be dead, and have no opportunity to make that final choice to live.
2) -- Other cases where undue outside influence on the applicant's request for suicide assistance might be at work.
-- E.g. a family over-eager to get their inheritance was found to be persuading mother to ask for euthanasia.
-- E.g. cases of a mentally incompetent applicant whose application was facilitated by others "for their own good" and there is no particular reason to assume they'd want euthanasia under the present circumstances (e.g. an advance directive for euthanasia signed when they were competent).
3) -- Cases where others would suffer from the applicant's death.
-- E.g. children of the applicant. The loss of a parent by whatever means is suffering for the bereaved at any age. It tends to be worse and with longer term consequences the younger the ones are who are bereft. It's even worse if the cause of death is suicide. Suicide is a choice and any choice gives a message when made in the context of a relationship. Those who counsel bereft children will testify that a common is the child's sense that Mummy or Daddy has abandoned them. The counselors response is to say, No, Mummy was taken from you against her will by her illness; she loved you and really wanted to stay with you. It's much harder to reassure the child when the parent chose suicide, which is necessarily a choice involving abandonment of the child.
-- E.g., Although the choice of the parent to leave the relationship by suicide has less potential to devastate adult offspring, it still wounds, and has great potential to raise guilt feelings: "If only we had visited Dad more often." "We loved him; did he not know that?" "If only we had known that he was feeling this badly." Such issues can haunt a person for years after.
Who the new adjudicators will be:
The adjudicators of applications for suicide assistance under the new protocol should be appointed by the federal government, as follows:
The adjudicators need to be people with no direct interest in the case and who have some training and experience in legal decision-making (which is quite different from clinical decision-making). They could be magistrates, or they could be other people with the aforesaid qualifications. If they are not already members of a body of such people (e.g., magistrates) then they should be vetted and appointed specifically to the role of euthanasia-adjudicator through the appropriate Federal ministry (of the Attorney General? -- NOT the Ministry of Health).
Physicians and psychiatrists would not be good choices: This is legal decision-making. We're only trained for clinical decision-making which its quite different.
* Here for your consideration is a first draft for the new protocol for processing applications for legal euthanasia:
The process should not be unnecessarily lengthy or cumbersome. Its purpose is not to impede euthanasia per se, but rather to protect from euthanasia those people whom you've decided you don't want to see euthanized.
I would suggest it follow these lines:
A person desiring legal assistance for suicide would contact a licensed euthanist for an interview. The euthanist must invite the applicant to consider including in the interview any first-order family members as specified below, and the Executor of their estate. Such attendance at this interview is not however compulsory. During the interview, the euthanist explains the technique of the contemplated euthanasia, informs the applicant that they can invite to the euthanasia event any others they wish, and reviews with them the form that they will have to sign for the adjudicator (See below.) After the interview, the euthanist will sign a government form stating that they have explained the actual procedure of the contemplated euthanasia, that they have confirmed with the applicant that the applicant has no further questions for the euthanist, and that the applicant understood their explanations and particularly that the applicant understood that the euthanasia would cause their death immediately and irreversibly. (Some patients I've known desiring euthanasia are fixated on the idea of not waking up from sleep, to the extent that they haven't squarely contemplated the reality of the ensuing death.) The form must be countersigned by the applicant.
The applicant contacts the office of the local government-appointed euthanasia adjudicator to apply for euthanasia. The office will require a copy of the euthanist's certificate (see above) and give the applicant a government form to read, consider, and sign which certifies the following:
--that they are of sound mind.
--that they want to die now (not just wanting the option of euthanasia at some unspecified time the future), and that they understand that euthanasia is irreversible.
--that they have made a last will and testament and appointed an executor of their will.
--that the executor is aware of this application
--that in the past five years they have had no personal physician. Otherwise they will supply to the adjudicator the names and contact information for all personal physicians whom they've seen more than once in the past five years. They also undertake to inform these physicians that they are applying for euthanasia, and to give these physicians consent to communicate freely with the adjudicator concerning any substance abuse or illness, including depression and mental illness, or mental competence which might have influenced their application for euthanasia.
--that in the past five years they have not been under the care of a psychiatrist or psychologist, or participated in any professional rehabilitation program for abuse of mind-altering drugs or alcohol. Otherwise they will supply to the Adjudicator the names and contact information for any such professionals or program directors whom they have seen in the past five years. They also undertake to inform these people that they are applying for euthanasia, and to give them such consent as they require to communicate freely with the adjudicator concerning any substance abuse or illness, including depression and mental illness, or mental competence which might have influenced their application for euthanasia.
-- that they understand that they must inform the adjudicator if in the past five years they have participated in lay programs dealing with abuse of mind altering drugs (e.g., Alcoholics Anonymous).
-- that they understand they must inform the adjudicator if in the past five years they have been convicted of any offence where abuse of alcohol or mind altering drugs was involved.
-- that they will assist the adjudicator to notify all their mentally competent first-order relatives (i.e., parents, siblings, and children) whether by blood or adoption, as well as their legally married or common-law spouse if they have one, that application for euthanasia is being made. (Separated spouses would also be informed, but not divorced spouses). Children would be informed if eight years of age or older; in the case of children less than eighteen years of age this would be done through a legal guardian, parent or adult sibling.)
-- that they understand that once the above information can be assembled by the adjudicator, the adjudicator will need to arrange for a personal interview with them. If disability prevents this, an interview by electronic means such as Skype or telephone must be arranged. The executor should be present at the interview, as well as anyone else that the applicant may wish to attend.
--that they will disclose to the Adjudicator in confidence the contents of their will, particularly the names and relationships of the beneficiaries and the benefits accruing to each.
-- that they understand that if the adjudicator declines to approve their application, it is for their potential future benefit, and /or the benefit of their family.
-- that they understand that if the adjudicator approves their application, there will follow a fourteen-day waiting period to allow them an opportunity to reconsider their application, following which there will be a second interview with the adjudicator to ensure that they have not changed their mind. If this is so, euthanasia may then proceed forthwith.
-- An officer of the Adjudicator's office trained for the task reviews the two forms (the euthanist's certificate and the application form) line by line with the applicant to ensure that the applicant understands and will comply with the commitments they've undersigned. Ideally this should be done in person. If disability prevents this, the officer can go to the applicant.
-- An adjudicator is then appointed to the case.
--The applicant contacts all the pertinent (if any) above-stated professional people, and gives them the name of their Adjudicator, as well as such consent as they require in order to communicate freely with the Adjudicator.
--The applicant supplies the Adjudicator's office with the names and contact information for the Executor and family members as specified in the application form.
--The applicant supplies the Adjudicator's office with a copy of their will.
--The Adjudicator's office and applicant work together to make all reasonable effort to contact the family members specified above.
The Adjudicator then confirms that all reasonable efforts have been made to notify family members of the application, and makes note of any whom it has not been possible to reach.
--The Adjudicator personally contacts all the pertinent professionals to enquire about the applicant's health and competence as described above.
--The Adjudicator personally reviews the applicant's will to establish who are the beneficiaries and their respective benefices.
The Adjucator arranges a date and time for his/her first interview with the applicant and the Executor of their estate. The family members are notified of the time and date, but may participate only with the applicant's consent. Family members are invited to notify the Adjudicator if they have concerns that the applicant is not mentally competent to decide on euthanasia or if they believe the applicant suffers from inadequately treated depression or other mental illness or substance abuse.
During the interview, the adjudicator does all the following:
-- shows all present the euthanist's certificate and the signed application form, assuring all present that these forms have been reviewed with the applicant by the adjudicator's assistant, who is satisfied that the applicant understands and agrees to all the provisions of these documents.
-- asks who, if any, of the specified family members the applicant has discussed the application with.
-- discusses with all present any concerns in his/her mind that have arisen concerning the applicant's mental capacity to make an informed decision on euthanasia
-- discusses with all present any concerns in his/her mind that have arisen from communication with the applicant's health care providers
-- discusses with all present any concerns in his/her mind that have arisen concerning possible undue influence or pressure to choose early death that may have been at work to impair the full freedom of the applicant's decision.
-- discusses any concerns in the minds of those present about the application
-- satisfies him/herself that there is no obvious reason to doubt the applicant's mental competence
-- satisfies him/herself that the applicant does not appear obviously depressed or mentally ill, or that if depressed they have sought treatment and their psychiatrist certifies that no further treatment is likely to relieve the depression
--satisfies him/herself that there is no reason to suspect undue outside influence on the application.
--satisfies him/herself that there is no reasonable possibility that the applicant's quality of life might significantly improve in future such that they would then be glad they had been refused euthanasia.
-- satisfies him/herself that the applicant is not ambivalent in his/her request for euthanasia
-- satisfies him/herself that there are no first-order relatives whose own mental health might be adversely effected by the applicant's choice of suicide instead of natural death.
At the conclusion of the interview, if the Adjudicator is not satisfied with all the last six provisions in the Fifth step above, he/she will so inform the applicant. In this case,-- He/she may choose to require either or both of a competency assessment by those expert in such assessments, and a psychiatric assessment (if the applicant does not already have a psychiatrist) to rule out treatable mental illness as significantly affecting the application. The guidelines for psychiatrists in making this assessment would be the same as those governing the use of Ontario Forms One and Fourteen for involuntary psychiatric assessment and admission to a psychiatric hospital ward.
--If the Adjudicator does not feel such referral is necessary, the euthanasia application is refused.
-- If such referral is made, a second interview is scheduled to occur after the assessments are completed and the Adjudicator has had a chance to review them. At that time the Adjudicator will render a decision as to whether the application for euthanasia is approved.
If the application for euthanasia is approved, the Adjudicator will schedule a follow-up visit at least two weeks later but without further delay. The purpose of the follow-up visit will simply be for the Adjudicator to satisfy him/herself that the applicant has not changed their mind and shows no evidence of ambivalence in their decision. Being so satisfied, the Adjudicator will convey promptly to the Euthanist in writing authorization to proceed with euthanasia.
ONE MORE IDEA IF YOU WISH TO LIMIT THE SPREAD OF EUTHANASIA:
Consider a requirement that the last step in administration should be by the applicant. I.e., that the deed should be assisted suicide rather than passive though voluntary euthanasia. Some have noted that proportional to population, the extent of euthanasia and the speed of its spread has been less in Oregon than has been the case in the Netherlands. The Oregon legislation, unlike the Dutch, requires that euthanasia be restricted to suicide. Practically speaking that means for example, that the euthanist hands the applicant the deadly pills plus a glass of water, but it's up to the latter to actually put these in the mouth and swallow them. If the lethal substance is to be injected intravenously, the euthanist sets everything up, but the applicant turns on the stopcock that allows the substance to flow in and put them to death.
If the applicant is physically unable to do this, the euthanist must wait for the applicant to say, "I want to die; go ahead." The thought is that this requirement brings home to the applicant the reality of what is about to happen in way that had not hitherto fully sunk into their thinking, and they therefore delay or reverse their previously stated request.
I was at the hockey arena visiting with some of the parents while the kids were playing fun hockey. I started visiting with one of the moms, the conversation turned to jobs and we found out that we were both nurses. She proceeded to tell me that she and her family had moved here to Canada from the Netherlands. She continued to tell me of the nightmare unfolding there and how she wanted no part in it. She told of rounds that happened every Thursday where they would go around with the Doctor and euthanize specific residents in the hospital. As a result she quit her job and they have moved to Canada.
being so horrified that this was happening and prayed fervently that it
would never come to Canada. Now at work I see we in Canada are also
treading on this very slippery slope, with a growing acceptance of
euthanasia among staff and clients.
Interpreting the statistics
by Terence McQuiston M.D.
This document is basically an excerpt from a letter I sent to Dr. Jeff Blackmer of the Canadian Medical Association in June 2015, in response to the CMA's request for members' input into the report they will prepare for the government re: the new euthanasia legislation ordered by the Supreme Court of Canada in February 2015.
I subsequently got it proof-read by Prof. Theo Boer who made a couple of corrections to the statistics showing that the spread of euthanasia in recent years has in fact been more rapid than I had understood.
These corrections are incorporated into this edition.
Let's learn from 20+ years of Dutch experience in legal euthanasia, but let's learn from the totality of the experience, not just the rosy version that the euthanasia advocates present us with.
When Parliament debated the issue of physician-assisted suicide in the form of BQ MP Francine Lalonde's bill in 2010, I was concerned that the euthanasia advocates repeatedly pointed to the Netherlands as the enlightened, forward-thinking country whose example we should follow. It seemed to me that our media had already been won over to their cause and that such information as got published in this country about euthanasia in the Netherlands was selected through this filter and sourced from euthanasia advocates within that country. (The same seemed to be true of the information we were getting about Belgium.) I'd heard and read enough anecdotally to suggest that the situation over there was not as stable and safe as we were being led to believe, so I networked through medical contacts to find out more.
I was directed to a professor of biomedical ethics at the Free University of Amsterdam, Dr. Henk Jochemsen, and reviewed his published literature on the subject. With my help, he wrote an open letter to Canadians concerning the practice of euthanasia in the Netherlands. (I've copied it at the end of this article; see below.)
The main part of his letter was meant to demonstrate that planning and controlling the practice of euthanasia in a democratic country where much of the populace likes the idea is very difficult.
That said, there was one line near the end of his letter that concerned me very much, and I wanted to explore it further:
"Space does not permit a proper description in this letter of the ways that the practice of euthanasia in the Netherlands is changing the doctor-patient relationship and the attitudes of society toward the severely disabled, elderly, and terminally ill."
Last July I attended a conference in Rotterdam (not about euthanasia) and took a few extra days to explore and learn more about euthanasia there. I met with Prof. Jochemsen and also his colleague Prof. Theo Boer who last year addressed the British House of Lords in the context of their debate on Lord Falconer's bill to legalize Physician Administered Death in the UK. (Up until last September, Prof. Boer served on one of the government-mandated committees whose job it is to review every reported case of legal euthanasia after the fact to ensure that the particulars of the law had been complied with. When I asked Dutch physicians where to go to learn more, as soon as I said I'd be meeting Dr. Boer they said I'd already got what I need -- that he knows the statistics better than anyone else they could suggest.)
What I learned in those few days about euthanasia's effects on the doctor-patient relationship and societal attitudes to toward the severely disabled, elderly, and terminally ill is unfortunately limited and largely anecdotal. I was dismayed that no one there, on either side of the issue, seems to be studying or monitoring the social and clinical effects of the practice. All I feel confident to say at this point is that the practice of euthanasia in the Netherlands continues to grow to an extent and in ways beyond the foresight of the legislators and that no one there could give me any reason to suppose that the numbers will plateau in the foreseeable future.
Whether this is a good or a bad prospect depends of course on one's view of whether or not euthanasia is a good thing for individuals and society.
I suppose euthanasia advocates would say that the rising numbers mean that as society gradually frees itself from its outdated taboos on the subject, more and more of its citizens are availing themselves of this solution to a hitherto unmet need.
A caution on interpreting the statistics:
They come in three categories --
1) Reported euthanasia (an intervention intended to cause immediate death) performed in compliance with the law.
These statistics are easy to obtain and because of what they reflect they will be accurate.
The annual death rate in the Netherlands from all causes is about 138,000. In 2008, 2,331 of these were by legal euthanasia. The number had been growing steadily each year and Prof. Boer projected that this would continue. (Later I learned that the final figure for 2013 had come out at 4,829, an increase of 107% in five years.)
2) Euthanasia outside the law.
Of its nature the frequency of this is much more difficult to determine, as any pollster or statistician can attest. It depends on anonymous and voluntary responses to surveys which will always receive only partial returns.
The actual number will therefore always be higher than the number reported, but how much higher can only be speculative. The numbers are at least 500 per year, and these figures don't seem to be climbing. I'm not clear what that means. Is there still as much surveying being done as before? Are recipients of the surveys getting bored with the issue?
Who is being put to death in this category? One physician suggested to me that it may represent those not mentally capable of giving informed consent to euthanasia on themselves, such as the severely demented. (Consent of a substitute decision maker is still not grounds for legal euthanasia in the Netherlands.)
3) Deep Terminal Sedation (DTS)
This is the most remarkable statistic to me. As you may know, DTS is the last ditch in palliative care when all else has failed to keep physical suffering down to a mild level. I've never done it myself, but can imagine situations where I would (e.g. untreatable brain cancer with intractable seizuring suppressable only by rendering the person unconscious). Here our intent is still not to kill, but to make the best of such time as our patient is still with us.
I don't know what the corresponding yearly statistic for DTS in Canada would be, but it would certainly be less than a tenth of one per cent of all deaths.
In the Netherlands, however, in 2008 DTS accounted for 8.2% of all deaths from all causes, i.e., about 11,300 per year. The numbers had been rising and were projected to continue to rise. Dr. Boer said that DTS was becoming virtually routine in terminal cancer. He more recently informed me that the yearly number has risen to about 20,000 per year, about 14.5% of all deaths from all causes in the Netherlands.
Both he and Dr. Jochemsen said that everyone over there realizes that the intent propelling this enormous expansion of the practice of DTS is euthanasia by another means.
I afterward asked myself, Why is this DTS rate so high when legal euthanasia is available? Why, if I were a physician open to euthanasia, might I prefer to use DTS to end my patient's life, rather than simply kill them painlessly and immediately, as is done in legal euthanasia? Two possibilities occurred to me that I didn't have a chance to run by the two professors (they are Ph.D's, not physicians):
A) Since DTS is recognized as a form of palliative care, I wouldn't have to report it as euthanasia, and so I'm saved from all the workload of the government paper work, and obtaining consents and a second opinion to comply with the euthanasia law.
B) It could make discussions with the patient and family easier: We could avoid having to confront the often subtle, complex and conflicted matter of our intent in what we're doing. It's easy to portray DTS as keeping mother comfortable even if all of us just want the whole thing to be over with as soon as possible.
Here follows a letter written in March 2010 by a Dutch professor of Medical Ethics
to Canadians before the vote on MP Lalonde's bill on euthanasia:
LESSONS FROM THE DUTCH EXPERIENCE
In response to a 1984 Supreme Court decision that exonerated a physician who performed euthanasia on a consenting patient, the Dutch parliament in 1994 passed legislation to legalise VE/PAS in certain restricted circumstances, along with mechanisms to oversee and regulate the practice. The newly legal circumstance was that of a person of sound mind suffering unbearably from a terminal illness, and requesting a physician to cause his/her death. The physician was required to obtain a formal second opinion from a colleague before proceeding with the euthanasia. Afterward the act was to be reported to the coroner, who was to make a formal report to the Public Prosecutor, who was to certify that the Penal Code had not been violated. As you can see, to be effective, this mechanism depended on the physicians engaged in euthanasia voluntarily reporting to the authorities what they were doing. However, follow-up studies such as those of P.J. van der Maas and G. van der Wal et al in 1995 and again in 2001 and 2005 showed that the regulatory mechanism was not working properly. One problem was that in years around 1995 only about half the number of cases of VE/PAS were being reported in compliance with the legislation. Furthermore, the researchers were able to identify between 500 - 1000 cases per year of people being euthanized without evidence of their immediate consent. In several hundred additional cases, the physicians had increased pain medication for the purpose of hastening death without the clear consent of the patient.
For these and other reasons, in 2002 the government made a second attempt at legislation to regulate the practice of euthanasia. This time Regional Euthanasia Review Committees were established, each one consisting of a physician, a lawyer, and an ethicist, to assess each reported case. However, the result was that these committees approved virtually every case that came before them. One may wonder whether this is because the physicians only reported the ‘nicely performed’ cases, while the extent of the real practice of euthanasia remains unclear.
In recent years the use of Deep Terminal Sedation (DTS) has expanded significantly. DTS is drug treatment that relieves patients of pain by causing them to sleep; since they don't eat or drink while asleep, they die painlessly of dehydration if the terminal disease doesn't cause death first. This is occasionally needed in palliative care of the terminally ill in their last days if normal pain control is unsuccessful. However, DTS is now used in the Netherlands to a much larger extent (8.2% of all deaths in the country), and it's common knowledge that at least some of this is de facto euthanasia which is not being reported as such. This is probably the result of the increasing reluctance among many physicians to perform euthanasia whereas patients tend to see VE/Pas as a legal right (which it is not). It demonstrates that the practice has become uncontrollable.
Meanwhile the practice of euthanasia and PAS has continued to expand into other areas not foreseen by the legislators. In 2003 a Supreme Court ruling indicated that VE/PAS is permissible for a person suffering from a psychiatric disorder. This creates a difficult situation for physicians treating depressed people since suicidality is a common symptom of their disorder. New ministerial regulations permit the killing of severely deformed or ill babies; research indicates this happens 10 -20 times a year. PAS is now allowed in cases of early, mild dementia when the patient is still mentally competent and certainly not dying. The more the practice spreads the less political motivation there seems to be to contain it. Prosecutors are reluctant to prosecute and the courts are reluctant to convict. Meanwhile, the euthanasia movement is pressing for acceptance of VE/Pas in cases of ‘loss of dignity’.
Space does not permit a proper description in this letter of the ways that the practice of euthanasia in the Netherlands is changing the doctor-patient relationship and the attitudes of society toward the severely disabled, elderly, and terminally ill.
In 2009 the Human Rights Committee of the United Nations
Covenant on Civil and Political Rights investigated Dutch euthanasia
practice and expressed concern "at the extent of euthanasia and assisted
suicides.......a physician can terminate a patient's life without any
independent review by a judge or magistrate to guarantee that this
decision was not the subject of undue influence or misapprehension."
Henk Jochemsen, MSc, PhD
Director of the Prof.dr .G.A. Lindeboom Institute (until 2009),
Lindeboom chair for medical ethics (until 2010) VU University, Amsterdam
Present chair of reformational philosophy, Wageningen University
Dutch Ethicist: “Assisted Suicide: Don’t Go There”