SELECT (A PART OF) THE TEXT AND IT WILL BE READ OUT LOUD

From           : Foundation End-of-Life management www.levenseinderegie.nl

Contact       :W.F.M. van Dijk, chairman wimfmvandijk@gmail.com 0031651014410.

You can download the text HERE.

Concerns    : proposal to adapt the Dutch Euthanasia Law and the possible (partly) use of this proposal and her motivations in other countries by organizations like Right-to-die, Exit, Dignitas, End-of-life, Completed Life, Sterbehilfe, etc.

To the reader,

The current Dutch Euthanasia Act helps those who receive euthanasia, albeit after a sometimes long procedure (even up to more than 2 years). However, this law is a disaster for those whose euthanasia request is denied or is not performed in a timely manner (1 in 3) or for those who have to undergo terminal palliative sedation instead (approximately 40,000 per year). They are sentenced to a prolonged suffering. This is caused by the problematic content of a part of the Euthanasia legislation: the Act on the Assessment of Termination of Life on Request. I was confronted with this during the painful death of my wife who did not receive the euthanasia she desired. Since then, I have focused on optimizing the euthanasia legislation.

Unfortunately, the Dutch NVVE (a Right-to-die organization) accepts the status quo and has rejected my proposals in the past nearly two years, fearing the loss of the current Euthanasia Act. An unfounded fear: in 2022 87% of the Dutch agree with euthanasia (Central Bureau of Statistics). Due to the stagnation of the discussion, the current Dutch law will stay an inadequate instrument.

Our proposal, the Alternative Euthanasia Law (AEL), drawn up after a number of consultation rounds and with legal and ethical advice, offers solutions for End-of-Life Management, End-of-Life Aid, Euthanasia, Completed Life and palliative sedation. Not only my sympathizers but many Dutch citizens support this proposal. The independent research agency Motivaction has conducted a survey, financed by me, into the support of the AEL. Of the citizens, 71% opt for this AEL and 12% for the current Euthanasia Act; 17% are against euthanasia at all or want complete autonomy or have religious objections. That is why my sympathizers and I will establish the End-of-Life Management Foundation with the aim of amending the current Euthanasia legislation. This is also necessary, because of the growing criticism of the decisive role of the physician, the increasing aging population, and the sharp increase in fatal diseases and dementia.

With a citizens’ initiative, needing at least 40,000 signatures, our group wants to put the AEL on the agenda of the Dutch legislative assembly.

Prominent Dutch people support the AEL and want to sign the citizens’ initiative as co-initiators, such as Em. Prof. dr. H.M. Dupuis (Ethics, former long lasting member of the Legislative Assembly), Em. Prof. dr. R.F.W. Diekstra (Psychology), Dr. N. Rozemond (Criminal Law, assistant professor), Adriaan van Dis (author); Prof. Dr. J. Cramer (former Minister of Housing, Spatial Planning and  Environment); Hanneke Groenteman (Journalist and television presenter); Catherine Keyl (columnist De Telegraaf); Em. Prof. dr. Y. Poortinga, (Social and Behavioral Sciences), A.C. Heringa (Activist End-of-Life Management), Em. Prof. dr. E. Tellegen (Sociology and Environmental Sciences), A. de Jong (Psychotherapist), Mr. J. Pen (Criminal Law), em. Prof. dr. ir. H. van Tilborg (Mathematics, Computer Sciences, Coding Theory and Cryptology, previously chairman of the Alzheimer Foundation North Brabant), Mr. J.S.A. Uijen (Criminal Law), O.J. Bosma (author De jas met alle kleuren)  and Dr. mr. R.W. Holzhauer (Law, Philosophy); Wim van Dijk (Activist End-of-Life Management).

International organizations participate in the Support Committee such as DescLAB/Eutanasia y Muerte Digna Columbia, The Israel Society to Live and Die with Dignity, The Association Québécoise pour le Droit de Mourir dans la Dignité (AQDMD; Montréal Canada); Choice and Dignity End-of-Life Advocacy (USA); The Life Circle Association (New Zealand); Right to Die Society of Canada; DignitySA (South Africa); ALS Patient Association (The Netherlands); Foundation Invisible Ilness (The Netherlands).

The AEL is the starting point for further discussion about the euthanasia legislation. Presumably you will not agree with everything in the AEL, but after a careful assessment of the AEL we hope you will agree with the basic ideas and intention of the AEL. I have had legal and ethical advice and if the AEL will be put on the agenda of the legislative assembly, the AEL will be scrutinized under a magnifying glass, will be adjusted, some parts will be skipped and others added, etc. and then lawyers will have to dot the i’s and cross the t’s. Of course, the Dutch situation differs from yours, but certainly there are strong similarities in terms of the AEL’s motivations. I think the AEL can be useful to you or your organization.

Of course we hope to receive international support and we are looking for organizations willing to sign the manifesto for the Citizens’ Initiative as a sympathizer (member of the Support Committee AEL), and that’s all there is to it. Of course, after the manifesto has been drawn up we will first submit it to the members for their agreement. The Citizens’ Initiative itself can only be signed by Dutch citizens.

We hope to receive your response. Kind regards,

Wim van Dijk, psychologist and Dutch activist End-of-life Management.

A Dutch proposal for an alternative Euthanasia Legislation

Foundation End-of-Life Management chairman Wim van Dijk Eerste Hervendreef 17 5232 JJ Den Bosch The Netherlands 0031651014410 wimfmvandijk@gmail.com

Key Points Alternative Euthanasia Legislation

In the current Dutch euthanasia law, the euthanasia process is completely medicalized and self-determination is subordinated to it.

The WLR ends this medicalization. She divides the euthanasia process into two phases, both of which are strictly regulated.

Phase 1: Demedicalization and Self-determination. The applicant himself decides. The doctor only has an informative role when starting the euthanasia process. The doctor provides the medical file (after permission from the applicant) and provides the applicant and the end-of-life counselor with information about the (medical) situation. If applicable, the psychotherapist has the same role.

Phase 2: Medicalization. The doctor carries out the euthanasia with medical care on a voluntary basis.

In a nutshell:

  1. The applicant is autonomous and decides HIMSELF about euthanasia.
  2. The doctor makes the medical file available (after permission from the applicant) and provides information about the current (medical) situation. The psychotherapist has the same role.
  3. The certified End-of-Life Counselor only checks (and does not assess) whether the applicant HIMSELF finds that his suffering is unbearable and/or hopeless, is well informed about medical options, sees no reasonable solution other than euthanasia, and what the applicant voluntarily and well-considered wishes.
  4. The doctor takes care of the euthanasia (which is a Dutch legal requirement in connection for reasons of due medical care, however the competent applicant may independently administer the euthanatic drug to him- or herself) on the basis of mercy (voluntarily, there is no obligation for the physician) and collects the euthanatic drug from the pharmacy. The doctor does not assess the End-of-Life wish.
  5. Instead of terminal palliative sedation, the applicant (or in the event of incapacity his legal representative) may opt for immediate euthanasia, regardless of whether or not the applicant has previously made an End-of-Life Statement.
  6. There will be an Institute End-of-Life Management to ensure everything runs smoothly.

Why this alternative Euthanasia Legislation (hereafter AEL)?

The prolongation of suffering in case of refused euthanasia or palliative sedation (the patient with a life expectancy of less than two weeks dies in a state of lowered consciousness without food and drink, but does feel hunger, thirst and pain, amongst other stimuli[1]) is traumatic for the person concerned[2], relatives, and the aid workers. The new AEL largely avoids these problems. Dutch disease prognoses for 2040 indicate that many people want control over their End-of-Life management and will opt for End-of-Life Assistance[3]. An adequate euthanasia law is necessary.

  1. The End-of-Life Counselor[4] or the person who has a basic interpersonal relationship[5] with the person concerned who has the End-of-Life Request, checks whether, according to the person concerned[6], the due care requirements in the AEL have been met. After the person concerned has been informed about his/her situation and about his/her prospects, the End-of-Life Counselor checks that the person concerned finds his suffering unbearable or is without any prospect of relief from suffering (physically or psychologically) or sees no reasonable solution other than End-of-Life Assistance. Each of these in itself is sufficient to receive End-of-Life Assistance. Only the person concerned decides (voluntarily and well considered) on his/her End-of-Life, not the End-of-Life Counselor nor the physician. This form of personal End-of-Life management is desired by at least 63% of the Dutch population (Explanatory Memorandum for the Completed Life Bill proposal).
  2. A physician is unable to determine whether the person concerned is suffering unbearably physically or psychologically/psychiatrically or whether the person concerned considers a (medical) solution other than euthanasia to be reasonable or not. There are no objective requirements. The requirement to determine the unbearable suffering and reasonableness is an impossible, and therefore unethical, assignment from the legislator to the physician. Only the person concerned can determine these. For reasons of due care (possible complications), the End-of-Life Counselor engages a physician (volunteer) with his medical expertise for the merciful practical implementation of euthanasia.
  3. If the attending physician advises palliative sedation at the end of the advanced care planning, the person concerned may opt for immediate euthanasia, regardless of whether or not an advance directive about the conditions in which euthanasia is desired was made beforehand.
  4. To regulate the implementation of the AEL, an Institute for End-of-Life Guidance will be established; a training course for End-of-Life Counselors will be designed; and requirements, criteria and further regulations will be established. The government will promote the drawing up of advance directives without making this mandatory.

Final proposal of the AEL, a merciful Euthanasia Law The need to adapt the legislation

a.    End-of-life management: Approximately 63% of the population wish to decide their own End-of-Life management (according to multiple surveys in the last 15 years). Excluding those opposed to euthanasia, support for the proposed AEL is 71% versus 12% for the current law (Motivaction survey May 2023).

b.    The Non-ethical Euthanasia legislation: No one can determine e.g. whether another person suffers unbearable physical or psychological pain, or determine whether a (medical) solution other than euthanasia is reasonable for someone else. For a physician or a counsellor that is an impossible, non-ethical demand of the legislator in the current Euthanasia law.

c.    The physician’s dilemma: On the one hand, the physician wants to heal and help palliatively, and on the other hand, the physician wants to help mercifully with a dignified death. If the physician only has an executive role, without having to make a decision about life or death, this dilemma may be greatly reduced. The vast majority of patients have great respect for their physicians who make an effort to maintain their health and are available in case of illness. Many patients will turn to their physician for their physical and psychological problems and find a listening ear. In the case of serious illnesses, physicians are generally experienced and offer great support. Many physicians do the right thing and want to do the right thing. However, unfortunately, physicians are often faced with this dilemma.

d.    Trauma caused by the current Dutch Euthanasia Law: The denial of an End-of-Life  Request prolongs the unwanted suffering with possible trauma for the person concerned, their relatives, loved ones, physicians, and other care providers.

e.    Trauma caused by palliative sedation: Palliative sedation prolongs the unwanted suffering of the person, with possible trauma for the relatives, loved ones, physicians, and other care providers.

f.     Suppression of euthanasia: The physician can apply palliative sedation with its often accompanying pain and distress, as a non-criminal medical act in order to avoid performing euthanasia and its complex handling[7].

g.    Provision of Last Will Drugs: Increasingly, this is happening illegally. The website www.nembutalscams.com/nl reports 368 scammers (2023).

h.   Increasing Number of End-of-Life Requests: Dutch disease prognosis for 2040 in the relevant websites: Alzheimer 500,000; Parkinson’s disease 91,000; Stroke: 670,000; Cancer 45,000 deaths/year; together with other terminal or life-threatening disorders may affect approximately 1,500,000 people (1 in 12 citizens). Many of them will want to keep the End-of-Life Management in their own hands and will request End-of-Life Assistance.

End-of-life Assistance and ethical principles

  1. Doing well: Taking a person’s wishes into account by ending unbearable suffering and/or with no prospect of recovery by complying to the request of a voluntary, well-considered and desired End-of-Life. This also includes preventing traumatic experiences to the applicant, loved ones, the family, carers and other care providers after the refusal of a request of a voluntary, well-considered euthanasia wish by facilitating the suffering as a result of an unwanted continuation of life.
  2. Autonomy: Respecting the right to self-determination in the event of a request of a voluntary, well-considered and desired End-of-Life.
  3. Justice: Providing End-of-Life Assistance based on a justified euthanasia
  4. Mercy: Performing the duty of mercy when providing euthanasia in cases of unbearable suffering or suffering with no prospect of recovery.

The amendment of the laws concerning Euthanasia

Below is a proposal for the amendment of the Dutch Penal Code with regard to ending someone’s life or to End-of-Life Assistance, followed by an explanatory memorandum. Subsequently, a proposal for the amendment of the Dutch Act on the Assessment of Termination of Life on Request (Dutch abbreviation: WTL) regarding the conditions under which End-of-Life Assistance is permitted, followed by an explanatory memorandum.

AMENDMENT OF THE DUTCH PENAL CODE ARTICLE 293

Paragraph 1 He who deliberately ends the life of another at his explicit and serious request shall be punished with a term of imprisonment not exceeding twelve years or a fine of the fifth category.

Paragraph 2 The act referred to in paragraph 1 is not punishable if it is performed  by a physician who has established that, according to the certified End-of-Life Counselor or the person who has a basic interpersonal relationship with the person with the End-of-Life Request, the End-of-Life Counselor has complied with the due care requirements referred to in the Termination of Life on Request and Assisted Suicide Review Law (hereafter WTL), and if the physician notifies the Municipal Coroner of this in accordance with Article 7, Paragraph 2, of the Funeral Services Law.

Paragraph 3 The act referred to in paragraph 1 is not punishable if it was performed by the attending physician to the person for whom the physician has advised palliative care or palliative sedation, and where the mentally competent person has indicated that this person does not want palliative care or palliative sedation, but has instead opted for euthanasia, after this has been confirmed by the certified End-of-Life Counselor or by the person who has a basic interpersonal relationship with the person with the End-of-Life Request, supervised by a certified End-of-Life Counselor, and regardless of whether or not the person had an advance directive, and if the physician informs the Municipal Coroner of this in accordance with Article 7, Paragraph 2, of the Funeral Services Law.

Paragraph 4 The certified End-of-Life Counselor or the person who has a basic interpersonal relationship with the person with the End-of-Life Request, supervised by a certified End-of-Life Counselor, who has provided End-of-Life Assistance by establishing that the due care requirements referred to in the WTL have been met, cannot be held legally responsible.

Explanatory Memorandum Dutch Penal Code

  1. The physician. The physician does not judge any of the due care requirements in the amended WTL. For reasons of due care, the physician with his medical expertise, acting voluntarily, provides for the merciful practical implementation of the euthanatic. Only the physician is authorized to collect the euthanatic from the pharmacy.
  2. Necessity of an End-of-Life Counselor. The completely free provision of a Last Will Means (a drug or toxic agent to end life, an euthanatic) does justice to the right to self-determination, but not to what can be called the “duty of social determination” of both the individual and the government. From a moral point of view the individual should not cause deliberate harm to another person and has to accept legislation that prevents it. Through legislation the government has a duty to prevent harm being done to another person, such as with the criminal use of a released euthanatic, and through legislation the government must fulfill its duty with regard to the general protection of life. It is everyone’s duty to help protect the life of another person against evil intentions and what we do and don’t do must not infringe on the rights of others. This means that a certified End-of-Life Counselor has to monitor the due care of the End-of-Life Process and has to check the due care requirements of the amended WTL (see below).
  3. The End-of-Life Counselor. The amended Dutch Penal Code Article 293 paragraph 2 means that the due care requirements from the amended WTL have to be checked by the End-of-Life Counselor or the person who has a basic interpersonal relationship with the person with the End-of-Life Request under the supervision of the End-of-Life Counselor. The End-of-Life Counselor then calls in the physician for the practical implementation of the End-of-Life Assistance. Only the person concerned decides on their own End-of-Life Request. The End-of-Life Counselor can be: a physician (GP, psychiatrist or medical specialist), psychologist, nursing specialist, philosophical-theological professional (advise in the context of the meaning of life), et cetera. They have to complete a necessary additional training depending on the competences they have previously acquired.
  4. Position End-of-Life Counselor. The End-of-Life Counselor is on principle prepared to assist with End-of-Life Assistance. Nevertheless, it may happen that the End-of-Life Counselor does not consider it morally responsible for himself or herself to assist with a certain End-of-Life In that case, this End-of-Life Counselor will inform the Institute for End-of-Life Guidance, which will urgently appoint another End-of-Life Counselor
  5. Institute for End-of-Life Guidance. A central institute for End-of-Life Guidance is necessary. This institute designs the curriculum for the training to become a certified End-of-Life Counselor, innovates and provides this training, takes into account previously acquired competencies, provides for further training and registration of the End-of-Life Counselor; sets up an advisory committee that the End-of-Life Counselor can consult; is the organization where the person concerned can request End-of-Life Assistance; provides information to the person concerned about the procedure for End-of-Life Assistance; appoints the End-of-Life Counselor; evaluates the reports of the End-of-Life Counselors; sets up a complaints committee; has a reporting obligation to the Public Prosecution Service in the case of misconduct; registers the physicians who want to provide End-of-Life Assistance; et cetera.
  6. Basic interpersonal relationship. The person who has a basic interpersonal relationship with the person with the End-of-Life Request includes those with a long-term confidential relationship with the person with the End-of-Life Request, such as the partner, a child, family member, close friend, et cetera. Criteria need to be further defined.
  7. Palliative sedation.  During sedation, the patient is put asleep (often called a coma) and the patient is in a state of reduced consciousness with pain relief and anxiety medication. The patient does feel hunger, thirst, pain and other stimuli. With intermittent palliative sedation, the patient is sedated, will regain consciousness after some time to see whether sedation is still necessary and, if so, the patient is sedated again, et cetera. This form of sedation to solve healing problems and promote healing is of course a blessing despite the reception of stimuli. This also applies, for example, to sedation during operations.With terminal palliative sedation, the patient with a life expectancy of less than two weeks is permanently sedated. The patient dies in a state of reduced consciousness without food and drink and feels external and internal stimuli. Relatives who have experienced the increasingly severe suffering of their loved one, consider the decreased pain behaviour due to terminal palliative sedation a relief. Unfortunately, their loved one is still suffering and, although suppressed by anti-anxiety medication, shows that suffering to a greater or lesser extent and sometimes very strongly. Terminal palliative sedation is therefore a life-prolonging ordeal and is traumatic for the patient, loved ones, caregivers and other care providers. The idea of ​​’quiet’ sleep during terminal palliative sedation without internal or external sensory experiences and therefore without pain is incorrect. This is evident from the following.The KNMG (Royal Dutch Society for the Promotion of Medicine) wrote a Guide to Care for people who consciously refrain from eating and drinking to hasten the end of life which also applies to terminal palliative sedation. The guideline states that not eating and not drinking has serious consequences, such as: pain, nausea and vomiting, constipation, urinary complaints, restlessness and confusion, sleep and anxiety problems. The terminal palliative patient feels those stimuli.The Motivaction research from May 2023 shows that a large proportion of Dutch people (82%) have experienced the death of a loved one up close. If terminal palliative sedation was applied, the respondents were asked to indicate how they experienced the process of this sedation of their loved one. They could do this by pointing on a scale from restless to calm and on a scale from uncomfortable to comfortable. Terminal palliative sedation was experienced by 18% of the relatives as uncomfortable and 17% as restless. With approximately 40,000 terminal palliative sedations per year, this equates to approximately 7,000 patients.The Phd Continuous Palliative Sedation of the physician Rogier van Deijck (Radboud UMC 2017) states about terminal palliative sedation: ‘Less suffering within an acceptable period of time’ (less…, so there is suffering) and ‘…although higher scores of suffering were also present in some patients in the last hours’.The 2019 Dutch Patient Federation Report includes quotes about intense suffering during terminal palliative sedation.

    The Third Evaluation Dutch Euthanasia Bill (May 2017 p 130) and the Fourth Evaluation Dutch Euthanasia Bill (June 2023 p 126) show that too many patients suffer for a long time with terminal palliative sedation. Assuming approximately 40,000 sedations per year, the duration of terminal palliative sedation was: 0-24 hours 47%, 17,800; 1-7 days 47%, 17,800; 1-2 weeks 4%, 1,600; longer than 2 weeks 2%, 800. Even those who die within 24 hours have suffered too long. They apparently suffered for so long prior to terminal palliative sedation and were so exhausted that the administration of the medication was the final push to let them die.

    The outcome of this process of terminal palliative sedation is the irrevocable death in one or more days to weeks. In fact, this terminal palliative sedation is pointless and even all due care requirements from the current Dutch Euthanasia Bill have been met in order to allow euthanasia. In the End of Life Management Bill, terminal palliative sedation can therefore be replaced by euthanasia at the wish of the competent patient or, in the event of incompetency, at the wish of the legal representative (if an advance directive has been made in a timely manner). At an appropriate time during the palliative care (in the Advanced Care Planning; e.g. by a Palliative Team) that will irrevocably result in euthanasia or terminal palliative sedation, the treating physician informs the competent patient or, in the event of incompetency, the legal representative about the options for euthanasia and terminal palliative sedation (it is desirable that the patient has made a decision about this in advance in an End-of-Life declaration). If the patient wishes terminal palliative sedation, this wish will be respected. If the patient does not wish palliative guidance or palliative sedation at any time during the treatment process, the patient or his legal representative may request an End-of-Life Counselor from the Institute for End-of-Life Guidance in a timely manner to administer euthanasia. If the treating physician is willing to do so, he or she can perform euthanasia. If the treating physician is not willing to do so, another doctor will be called in in a timely manner via the Institute for End-of-Life Guidance. .

  8. Palliative Sedation and End-of-Life Assistance. Palliative sedation is considered a natural death and is nowadays more and more used to avoid End-of-Life Assistance. This may also be motivated by the fear that the Public Prosecution Office may proceed to prosecution. With the AEW this fear is unnecessary.
  9. Palliative Care and End-of-Life Assistance. If the person concerned wishes End-of-Life Assistance at the start or during palliative care (which is in fact any pain and complaint relief) leading to palliative sedation, the regular procedure of the End-of-Life Request will be followed.
  10. Palliative care and palliative sedation. When advising the transitioning from palliative care to palliative sedation, the physician must estimate that the person concerned will die within a maximum of two weeks. That is often virtually impossible. The result may be that the physician continues treatment for too long out of fear for a complaint that the palliative sedation process will take too long. An unnecessary extension of palliative care is traumatic for everyone involved.
  11. Consciously stopping eating and drinking (STED). To maintain end-of-life control STED has recently received more attention, but STED is problematic. A quarter of those surveyed in a newspaper poll (Trouw, April 13, 2023) can imagine dying with STED. Undergoing STED without medical assistance appears to be an inhumane process. With medical-nursing care, STED is just as much of an ordeal. This is evident from the Guide to Care for people who consciously refrain from eating and drinking to hasten the End-of-Life of the KNMG (the Royal Dutch Society of Medicine. The guidance underlines the great importance of providing alternative routes of administration and, if necessary, adequate non-medicinal and medicinal treatment of pain, nausea and vomiting, constipation, micturition complaints, agitation and confusion, sleep and anxiety problems, and delirium. The agony of STED can be long: 36% 1-7 days; 44% between 7-15 days; 20% longer than 12 days. In 29%, palliative sedation is used. Why not immediate compassionate euthanasia instead of STED (unless the patient expressly wants STED?).
  12. “(Dutch) Government response and vision of a completed life” 12 October 2016 The ministers believed: “…that, when people with a completed life ask for assisted suicide, this is based on their right to autonomy. We value that people can exercise that right, even if it happens in the context of suicide…” and “…that this autonomy threatens to become an empty concept if an individual with a completed life cannot end this life without the assistance from others while at the same time preventing others from being able to provide assistance”.

UNCHANGED DUTCH PENAL CODE ARTICLE 294 

Paragraph 1: He who incites a person to commit suicide, shall, if suicide ensues, be punished by a term of imprisonment not exceeding three years or a fine of the fourth category.

Paragraph 2: He who assists another person in the act of suicide or provides that person  with the means to end his life, shall, if suicide follows, be punished by a term of imprisonment not exceeding three years or a fine of the fourth category. Article 293, paragraphs 2, 3 and 4 shall apply in the same way. 

AMENDMENT OF THE DUTCH ACT ON THE ASSESSMENT OF TERMINATION OF LIFE ON REQUEST (WTL)

The WLT regulates the End-of-Life Assistance with due care requirements and is applied to different age groups. An End-of-Life Statement (written and/or video) states the circumstances in which the person concerned requests End-of-Life Assistance. For the purpose of complying with the WTL this End-of-Life Statement has to be deposited with the attending physician and has to be discussed with the physician. The End-of-Life Statement of the person concerned states that the End-of-Life Counselor has permission to view the End-of-Life Statement and may inquire with the physician about the information provided and the medical file of the person concerned. Paragraph 1: the due care requirementsParagraph 2: 18 years or older, mentally competent persons.Paragraph 3: 18 years or older, mentally incompetent persons.paragraph 4: 16 or 17 years, mentally competent persons; parents’ advice.paragraph 5: 16 or 17 years old, mentally incompetent persons; parents’ advice.paragraph 6: 12 to 15 years, mentally competent persons; parents’ permission.paragraph 7: 12 to 15 years, mentally incompetent persons; parents’ permission.paragraph 8: under the age of twelve.Paragraph 9: End-of-life Assistance instead of palliative sedation.

Paragraph 1 The due care requirements, referred to in Article 293, paragraph 2, of the Penal Code, mean that the certified End-of-Life Counselor or the person who has a basic interpersonal relationship with the person with the End-of-Life Request under the supervision of a certified End-of-Life Counselor: a.    Mandatory: Has checked that there is a voluntary and well-considered End-of-Life  Request from the person concerned, as evidenced by a mentally competent drafted End-of-Life Statement or with a verbal statement;b.    If applicable: Has checked that, according to the person concerned, the person is suffering unbearably, as evidenced by a mentally competent drafted End-of-Life Statement or with a verbal statement;c.    If applicable: Has checked that, according to the person concerned, the person is suffering medically or non-medically with no prospect of recovery other than euthanasia, as evidenced by a mentally competent drafted End-of-Life Statement or with a verbal statement;d.    If applicable: Has checked that, according to the person concerned, there is in the opinion of the person concerned no reasonable other solution for the situation in which the person finds themself, as evidenced by a mentally competent drafted End-of-Life Statement or with a verbal statement;e.    Mandatory: Has checked that the person concerned has been fully informed about the diagnosis and prognosis, whereby, in the event of a disorder, the person concerned has been informed by the physician about possible treatments, pain relief and possible future developments;f.     Mandatory: Has consulted in case of doubt about points a. – e., one other independent certified End-of-Life Counselor who has seen the person concerned and has given his opinion, in writing, about the due care requirements referred to in subparagraphs a. – e., and about the doubts of the End-of-Life Counselor;g.    Mandatory: Has carried out the End-of-Life Assistance with due care;h.   Mandatory: Writes a report on the End-of-Life Assistance for the purpose of an evaluation of the End-of-Life Assistance provided.

Paragraph 2 In order to be able to check the due care requirements in paragraph 1 a. – d., it is required that the person concerned, aged eighteen years or older, has made a mentally competent End-of-Life Statement.

Paragraph 3 If the person concerned, aged eighteen years or older, is no longer able to express his will, but was considered mentally competent of a reasonable assessment of the interests in this matter before he reached the state of mentally incompetence, and has made mentally competent an End-of-Life Statement, then the certified End-of-Life Counselor or under the supervision of a certified End-of-Life Counselor the person who has a basic interpersonal relationship with the person with the End-of-Life Request will comply with this request. The due care requirements, referred to in the first paragraph, apply mutatis mutandis. 

Paragraph 4 If the person concerned is sixteen or seventeen years old and is considered mentally competent of a reasonable assessment of the interests in this matter, and has made a mentally competent End-of-Life Statement, then a certified End-of-Life Counselor or under the supervision of a certified End-of-Life Counselor the person who has a basic interpersonal relationship with the person with the End-of-Life Request, will comply with this request, after the parent(s) or guardian who exercise authority over the person concerned has been involved in the decision-making process. The due care requirements, referred to in the first paragraph, apply mutatis mutandis.

Paragraph 5 If the person is sixteen or seventeen years old, and is no longer mentally competent, but was considered mentally competent of a reasonable assessment of the interests in this matter before the person concerned reached the state of mentally incompetence, and has made mentally competent an End-of-Life Statement, then the certified End-of-Life Counselor or under the supervision of a certified End-of-Life Counselor, a person who has a basic interpersonal relationship with the person with the End-of-Life Request will comply with this request, after the parent(s) or guardian exercising authority over the person concerned has been involved in the decision-making process. The due care requirements, referred to in the first paragraph, apply mutatis mutandis.

Paragraph 6 If the person is aged between twelve and fifteen, and is mentally competent of a reasonable assessment of the interests in this matter, and has made mentally competent an End-of-Life Statement, then the certified End-of-Life Counselor or under the supervision of a certified End-of-Life Counselor, a person who has a basic interpersonal relationship with the person with the End-of-Life Request will comply with this request, after the parent(s) or guardian exercising authority over the person concerned has agreed with the request. The due care requirements, referred to in the first paragraph, apply mutatis mutandis.

Paragraph 7 If the person is aged between twelve and fifteen, and is no longer mentally competent, but was considered mentally competent of a reasonable assessment of the interests in this matter before the person concerned reached the state of mentally incompetence, and has made mentally competent an End-of-Life Statement, then the certified End-of-Life Counselor or under the supervision of a certified End-of-Life Counselor, a person who has a basic interpersonal relationship with the person with the End-of-Life Request will comply with this request, after the parent(s) or guardian exercising authority over the person concerned has agreed with the request. The due care requirements, referred to in the first paragraph, apply mutatis mutandis.

Paragraph 8 If the person concerned is under the age of twelve, for whom, as a result of an incurable illness or disorder, or of having a serious defect that will probably cause the child to die within the foreseeable future, and if according to the physician the only reasonable alternative is to dispel the endless suffering with no prospect of recovery, the physician may proceed to the active ending of life after the parent(s) or guardian has agreed with the ending of life. Paragraph 9 If the physician advises the implementation of palliative sedation or palliative care that will lead to palliative sedation, the mentally competent person or the legal representative(s) of the person who is mentally incompetent, has the right to choose euthanasia instead of palliative care or palliative sedation. This wish will be fulfilled in the shortest possible time.

Explanatory Memorandum WTL

  1. Legally permitted Euthanasia. Compliance with the due care requirements a, e and f is in itself sufficient to legally allow the physician to provide for End-of-Life Assistance. On principle, it is not necessary to comply with one of the due care requirements b, c and d. The mentally competent person concerned or his legal representative decides on this.
  2. Voluntary and deliberate. A person can have a lasting and consistent death wish and want to die voluntarily and deliberately. This death wish can also apply to a person who considers his life complete, meaning that the person concerned suffers unbearably from life itself. In itself, this means that the due care requirements a. and e. have been met and that End-of-Life Assistance is legally allowed.
  3. The Legislator’s Assignment[8] (in the current Dutch WTL). The legislator orders the physician to determine unbearable and hopeless suffering and that there is no reasonable other solution outside End-of-Life Assistance and by doing so the legislator pronounces on the person concerned. This means that the legislator sets the condition that the person concerned must suffer unbearably and without prospect of improvement and that the physician is convinced that there is no reasonable other solution outside of End-of-Life Assistance to legally allow the person concerned to wish for End-of-Life Assistance. However, according to the law, the person concerned is free to end his life. The WTL should focus on the implementation of the End-of-Life Assistance itself and not on imposing conditions on the person concerned with an End-of-Life After all, the person concerned may freely dispose of his death.
  4. The physician’s judgment. The due care requirements of the current WTL are a major problem. The physician cannot judge unbearable, hopeless (with the exception of medically hopeless) suffering and a reasonableness of a medical solution other than End-of-Life Assistance. Only the person concerned can judge these. By law, the legislator entrusts physicians with these assessments which they are not capable of. It is only possible to check that the person concerned considers his suffering to be unbearable and/or hopeless and/or that the person concerned does not see any reasonable other solution outside of End-of-Life Assistance. This has led to the wording “The End-of-Life Counselor has checked…”, which stipulates that the own judgment of the End-of-Life Counselor or the physician regarding the End-of-Life Request of the person concerned may not influence the implementation of End-of-Life Assistance.
  5. Psychiatric patient. If the patient suffers from a psychiatric disorder, it could be mandatory that in the case of certain disorders, yet to be determined (such as those with psychotic features), the End-of-Life Counselor by definition should be a psychiatrist.
  6. Sustainability of the End-of-Life Request. The current WTL has no requirement of the sustainability of the End-of-Life Request. Once an End-of-Life Statement has been drawn up, it remains valid and does not need to be discussed regularly with the physician or the general practitioner. With the introduction of “sustainable” by the KNMG (Royal Dutch Medical Society), the KNMG pronounces on the person concerned. The KNMG requires the person concerned to wish for End-of-Life Assistance with a lasting and repeated request. In its euthanasia guideline, the KNMG should focus on the implementation of End-of-Life Assistance as such and not on imposing conditions on the person concerned with an End-of-Life After all, the person concerned may freely dispose of his death.
  7. Information to the person concerned. The person concerned has to receive information from the treating physician or general practitioner about possible treatments and future developments, from the Institute of End-of-Life Guidance (see Explanatory Memorandum Dutch Penal Code 5) about the End-of-Life Assistance procedure and, if desired, about issues concerning the meaning of life of an expert professional. The person concerned understands this information sufficiently to be able to independently decide on the content of his End-of-Life Statement and on his End-of-Life Request.
  8. Careful dying process. The End-of-Life is carefully provided for by the End-of-Life Counselor or the person who has a basic interpersonal relationship with the person with the End-of-Life Request supervised by the End-of-Life Counselor, together with the executing physician in accordance with a (then drawn up) directive.
  9. Under the age of 12. An example could be a person with such a serious somatic disorder that the legal representative(s) decide, in consultation with the attending physician, that to live any further is not in the interest of the person concerned. In April 2023, the concerning Dutch Minister announced to develop such a directive that will probably come into effect at the end of 2023.
  10. SCEN Physician[9]. The current deliberations of the physician or GP and the SCEN physician are contrary to the right of self-determination of the person concerned. They may not decide together whether or not the End-of-Life Request is acceptable. That is the prerogative of the person concerned. In the AEL, there is no need for a SCEN physician.
  11. Acquiring to the conviction. The current Dutch WTL states that the physician “has acquired the conviction that there was a voluntary and well-considered request from the patient resp. of the patient’s hopeless and unbearable suffering” resp. “has acquired the conviction with the patient that there was no reasonable alternative solution for the situation in which the patient found himself”. If the person concerned requests End-of-Life Assistance, then it is absurd that the person concerned has not come to the conclusion that End-of-Life Assistance is necessary on the basis of these points. In fact, the person concerned has to convince the physician to suffer unbearably, et cetera. One in three persons concerned experience that convincing their physician and/or SCEN physician is not successful and that they refuse End-of-Life Assistance. De facto, the physician decides whether or not to provide for End-of-Life Assistance, which goes against the person’s right to self-determination.
  12. From a moral point of view, it is necessary to respect the autonomy or self-determination of the person concerned. Only his judgment should be decisive. There is no unconditional duty to life, so asking the person concerned for “good” reasons to get End-of-Life Assistance is morally unacceptable. The physician should not be required by law to “acquire the conviction that…”. The personal reasons given by the person concerned must be accepted without further ado.
  13. Under Dutch law, suicide is not an offence. However, the right to suicide is not a right if you are not legally allowed to ask for help and if that help is not legally allowed to be given. The consequence is that End-of-Life Assistance should not be made a punishable offence. The European Court of Human Rights agrees, but it gives each country the space to set rules (the margin of appreciation) and in the Netherlands they are restrictive.
  14. Dying Well. A long life seems to be more and more important. People try to hold onto forever what they will lose in eternity. Medical care and health care is mainly focused on combating death, on life extension, on the quantity of life, not conclusively on the quality of life. Most physicians oppose death: “We can’t stand by and do nothing”. Also for fear of being accused of negligence, physicians tend to continue treatment for too long. Many physicians regard the death of “their” patient wrongly as their failure. For the patients involved, suffering predominates in the extra survival time, with the fear of what is yet to come. In other words: the (e.g. terminally ill) person concerned no longer lives, he dies longer. In that process, the patient receives too little help to be able timely to accept dying. This guidance needs to be improved.
  15. Death phobia. Dying people, those who love them and their caregivers have been indoctrinated to see dying as a physical challenge. Many people involved fight dying with all means in an effort to get out of death. As if that were possible. A terminally ill person clings to the outcome of one patient with a similar illness who did not die in, say, six months, as predicted by the physician, but lived in sorrow and pain for another two years, and does not want to hear the fate of the 999 others who did die within the predicted time. In those cases, second opinions, operations, increasing (more exotic) drug use and the application of alternative medicine (sometimes financed through crowdfunding) increase both the physical-psychological suffering and the medical-pharmacological consumption (just as palliative sedation takes up many resources). Focus is mainly the collection of physical symptoms of the disease, such as pain, with the (im)possibilities of therapies and, often only to a small extent parallel to this, the mental well-being. The side effects of fear, anger and despair are controlled pharmacologically. Take, for example, the care providers for people with dementia, when talking about their work, it is about preventing or limiting suffering; fulfill the wishes of the patient; listen, be positive, give hope, encourage. Almost none of them talk about dying. The consequence of this approach is that a growing death phobia pervades our present times. This fear prolongs life with a greater chance of dying “badly and sorrowfully” and that reinforces the death phobia. It is a circular, self-reinforcing mechanism, which increasingly makes the dying process a traumatic experience. At a certain point it dawns that the end is really approaching and that in many cases a potentially miserable dying process begins. Only then the person concerned will accept dying and will want a dignified End-of-Life. This prolonged suffering is a pity (see 18).
  16. Controlling your own life and death. In the Netherlands in 2021, 87% of the adult population believes that euthanasia should be possible under certain circumstances and 80% percent also for people with advanced dementia if they requested euthanasia when they were still competent. Eight percent indicate that they are against euthanasia in all circumstances. About three-quarters endorse the option of euthanasia for terminally ill children and for people with serious mental illnesses (CBS, Central Bureau of Statistics[10]). From 2011 to 2019, an average of 63% of citizens in 10 surveys want to take control of their own dignified End-of-Life. In September 2021 the figure was 67%. An independent survey in May 2023 revealed: 63% wish to be in control of their own death; when the Dutch are asked to choose between the Alternative Euthanasia Law and the current euthanasia law, 60% opt for the alternative law and 21% for the current law, and among proponents of euthanasia even 71% opt for the alternative law and 12% for the current law; according to most people, the physician may have a role in euthanasia, but should have no decision-making power about euthanasia; 74% are in favor of the “free” provision of an End-of-Life drug, of which 2/3 under conditions and only 14% are against. Self-chosen and self-controlled dying, in the presence of your loved ones, with their support and with their help, is both sad and beautiful. Let’s strive for a change in thinking: from lifespan to quality of dying; from the sorrowful life extension to a humane dignified death; from days or weeks of palliative sedation to immediate deliverance. After accepting your mortality, you can face the coming death and the lived life with its meaning. Have you been sincere, righteous? Is there suffering, a mistake or damage that you have to set straight? Looking back, this hopefully leads to being able to be satisfied with your life and to end your existence with a dignified death. I can’t think of any moral reason that can prevent anyone to help you with your dignified death.
  17. Physician’s Oath. The reluctance to End-of-Life Assistance did not exist in the ancient world. It was a courageous act to commit suicide when there was no prospect of a meaningful future. It was no moral problem for the physician to assist in this. The Hippocratic Oath required not to commit murder at the behest of a third party. It was an honor to help. Directly opposite to this is the current Dutch Euthanasia Law and the view of many Western physicians who want to pull out the entire medical collection of therapies and drugs to “help” a patient, possibly against his will. That amounts to being temporarily dragged away before the gates of death. This mindset follows from the unconditional principle of the Dutch Euthanasia Law of 1886, the sanctity of life: “Human life in general has an intrinsic value that the physician must protect at all times”. Since 1950 there is a social shift towards the quality of life[11]: an individual can evaluate the quality of his life. Only the person concerned can judge for himself whether his life has been completed due to suffering, hopelessness, meaninglessness or any other motivating reason. No one else can judge that. A physician should discontinue unwanted life-prolonging therapies.
  18. The Physician’s Dilemma in End-of-Life Assistance. Medicine has developed at lightning speed without the development of the associated wisdom or adequate legislation for its use in all cases. The medical-pharmacological attitude apparently endorses the patient-centered care of a holistic human being (one coherent whole), but at the same time it undermines this by focusing too much on physical therapies and ignoring the right to self-determination. Physicians have learned a healing reflex. Instead of accepting the inevitability of death the attitude is: “How can we prevent dying?”. Their training is too focused on making people well, compared to helping people live meaningfully and die meaningfully; on the functioning of the human machine compared to the human mind; and on life extension as an end in itself. This raises the question of whether this is morally correct. In addition to “curing”, the physician should fulfill the duty of mercy by helping to die. The physician therefore experiences a dilemma and finds himself in the thankless and impossible position between the hammer of mercifully helping an individual to die and the anvil of unwanted life extension due to the general protection of life. The AEW relieves the physician from this dilemma.
  19. The Euthanasia guideline of the KNMG. The KNMG’s euthanasia guideline is: “A physician will not help patients die who cannot ask for this dying themselves”. Is that true? In general, physicians do not help with the final stage of dementia, but with a prolonged coma, physicians do help. Is there any essential difference between the two at all? Could that difference be that a person with dementia still reacts in certain situations and is not completely silenced (although there is often non-communication), while a comatose patient remains unresponsive and silent? Roughly speaking: that first is half alive and the second is half dead?
  20. End-of-Life Statement (including a Non-treatment Statement). The government must encourage every adult to draw up an End-of-Life Statement. At some point in life every person can get into a position due to illness or an accident in which the person concerned may find End-of-Life Assistance desirable. In that case, it is wise to have arranged the desired End-of-Life Assistance in an End-of-Life Statement (written or in a video message). It goes without saying that drawing up an End-of-Life Statement is not an obligation. However, it is important that the person concerned draws up an unambiguous End-of-Life declaration to prevent possible misunderstandings later on the part of the End-of-Life Counselor, the physician and other parties involved and to discuss this End-of-Life declaration in a timely manner with an End-of-Life Counselor or the general practitioner.
  21. Free availability of an euthanatic to certain target groups. The following suggestion is not part of this AEL-proposal. It should be considered whether it may be possible to provide an euthanatic without conditions to mentally competent people from a certain age (age limit to be determined further, based on what is socio-politically and legally feasible). This means that no vulnerable group is endangered. The free availability of a euthanatic might also be possible for patients for which no therapy is available anymore (like in Oregon, USA) or for certain patient groups with an incurable disorder who want to take control of their End-of-Life management, especially in the last phase of life (e.g. cancer, Parkinson’s disease, dementia, the miserable consequences of a stroke, ALS, etc.) or people with an End-of-Life Request due to a permanent incurable psychological or psychiatric disorder.
  22. Important reasons for the physician to voluntarily take on the task of performing euthanasia in the WLR.

Regarding the patient:

  1. Respect for the patient’s autonomy.
  2. Possibility to fulfill the duty of mercy.
  3. No suffering from (possibly too long) terminal palliative sedation.
  4. No overtreatment.
  5. The patient’s and the immediate family’s own control over the final phase of dying.
  6. Medically careful execution of the euthanasia.

Regarding the physician’s own positioning:

  1. Abolition of the unethical requirements for the physician to have to assess the unbearable, hopeless and reasonableness of a solution other than euthanasia.
  2. Abolition of all Regional Euthanasia Review Committee involvement (the End-of-Life Counselor must justify his actions by means of a report to the Institute for End-of-Life Guidance. The Institute will report malpractice to the Public Prosecution Service).
  3. Elimination of the fear of prosecution of the physician by the Public Prosecution Service (the End-of-Life Counselor has the final responsibility).

Curriculum W.F.M. van Dijk

Studies (fact checking by journalists of the newspaper Volkskrant; mentioned to show that I think carefully about Euthanasia and palliative sedation)

  1. Bachelor chemistry and physics.
  2. Master Biology after Candidate Biology (cum laude).
  3. Master Chemistry (cum laude) after Candidate Chemistry (cum laude).
  4. Master Pharmacy (except for 6 exams).
  5. Master Work and Organizational Psychology (cum laude).
  6. Master Health Psychology.
  7. Master Clinical Psychology (with distinction).
  8. Master Psychogerontology (except the thesis).
  9. Master Neuro- and Rehabilitation Psychology (except the thesis).
  • Psychologist of Work and Organization NIP (Dutch Institute Psychology; until July 2015)
  • Psychologist of Work and Health NIP (until March 2018).
  • EFPA Registered EuroPsy Psychologist.
  • Various courses.
  • Articles in Medisch Contact (medical journal), De Psycholoog (psychologist journal) and several newspapers.

 

[1] Coma – Neurochirurgisch Centrum Zwolle (neurochirurgie-zwolle.nl) Coma – Neurosurgical Center Zwolle.

Coma | Jeroen Bosch Ziekenhuis Coma/ Jeroen Bosch Hospital.

Coma / Lichamelijke gevolgen / Gevolgen | Hersenletsel-uitleg.nl Coma/physical consquenses/brain injury-explanation

Sederen en coma | IC Connect Sedation and coma/Intensive Care Connect.

Coma: medisch mysterie | UZ Leuven Coma, a medical mysterie.

Het meten van pijn met de REPOS bij de non-communicatieve patiënt. | CATdatabank.nl Measuring pain with the REPOS in a non-communicative patient/ CATdatabank

[2] The person concerned refers to a patient, client or person requesting end-of-life assistance.

[3] End-of-life assistance: Euthanasia (administration of thiopental) or End-of-life assistance (providing a solution containing pentobarbital), as indicated in the KNMG’s Euthanasia Guideline (KNMG: Royal Dutch Medical Association).

[4] ‘Government response and vision of completed life’ 12 Oct 2016 The Ministers believed that the existing Euthanasia Act and the practice based on it offer insufficient scope for people who suffer not so much from an illness but from life itself and the prospect that it will continue for a long time to come. And proposed a head study for end-of-life counselors (medical training, but for nurses, psychologists and physicians).

[5] This is a long-term confidential relationship with the person who has the End-of-Life Request, such as the partner, a child, family member, a close friend, et cetera. Criteria need to be further defined.

[6] The person concerned refers to a patient, client or person requesting End-of-Life Assistance.

[7] Medisch Contact 14-14 april 2023 Hans van der Linde. medical journal, affiliated with the Royal Dutch Society of Medicine (KNMG).

[8] In the Netherlands, the legal assignment of the End of Life Management to physicians in 1886 converted the personal constitutional right of self-determination into the right of decision of the medical profession and the person concerned was deprived of his or her own End of Life Management.

[9] In the current Dutch WTL, the attending physician is obliged to have a second physician (the SCEN physician) give an opinion on the unbearable and hopeless nature of the suffering and on the reasonableness of a solution other than euthanasia. They have to concur.

[10] Opvattingen over euthanasie (cbs.nl) (Views about euthanasia; CBS).

[11] WHOQOL Group (World Health Organization Quality of Life), Soc. Sci. Med., 41(10), 1403-1409, 1995.