Tuesday, December 7, 2021

What is a “Death Doula” and Why is the assisted suicide lobby so Interested?

This article was published by Nancy Valko on her blog on December 7, 2021.

By Nancy Valko

Most people have heard of doulas, specially trained people who help pregnant women during pregnancy, labor, birth, and immediate postpartum by providing “emotional, physical, and informational support”.

My daughter used a doula for both of her children and was so happy with the results that she is considering taking the training to become a doula in the future.

But now, there are “death doulas” that have nothing to do with birthing.

As Wesley Smith wrote about in a 2014 article titled “Good Grief: Now It’s “Death Doulas”, there was an op-ed in the LA Times about the Hippocratic oath and the terminally ill by a journalist and medical professor who wrote:

“If we allow medicine to prolong life, should we also allow it to shorten life for the terminally ill?

We could, however, skirt the controversy entirely: What if we created another class of medical professionals known as death doulas, who could fill a gap between treatment doctors and hospice workers?” (All emphasis added)
But “death doula” idea continued and in 2017, the “National End-of-Life Doula Alliance (NRDA) was formed and even more importantly in 2018:
“a special council within The National Hospice and Palliative Care Organization (NHPCO), the leading hospice and palliative care membership organization in the US, was held. The purpose of the special Council is to provide information and resources to its members, affiliated organizations, and the public regarding the role of end-of-life doulas.” (Emphasis added)

“Unfortunately, while the NHPCO "opposes MAID (medical aid in dying) as "a societal option to alleviate suffering", the American Academy of Hospice and Palliative Medicine (AAHPM) has had a position of "studied neutrality" on the issue of medically assisted suicide since 2007.”

According to a New York Times June 2021 article “Death Doulas’ Provide Aid at the End of Life” , there are nearly 800 members in the National End-of-Life Doula Alliance with membership nearly doubling in the past year and increasing interest in training programs such as the International End-of-Life Doula Association, Doulagivers, and the Doula Program to Accompany and Comfort.

Death doulas do not have to be medically trained and death doula training and certification programs can cost as little as the $189.00 holiday special online course at the International Association of Professions Career College for 6 weeks part-time

According to the New York Times, death doulas “don’t get involved in medical issues” but rather, “they support clients emotionally, physically, spiritually and practically.” Prices for these services “range from $25 an hour on up, although many do it voluntarily.”

WHY IS COMPASSION & CHOICES INTERESTED IN DEATH DOULAS?

Last month, Compassion & Choices (the largest organization attempting to pass assisted suicide laws in every U.S. state) filed an amicus brief in the federal court case Full Circle of Living & Dying v. Sanchez in support of a lawsuit to protect “to protect the First Amendment free speech rights of death doulas in California.”

The plaintiff Full Circle of Living & Dying is described by Compassion & Choices “as a non-profit organization that provides death doula services and home funerals”.

The defendant in the Full Circle of Lining & Dying lawsuit is the California Cemetery and Funeral Bureau which issued a 2019 order to the death doula plaintiffs to:

“immediately discontinue advertising and operating as a funeral establishment until a license is issued by the Bureau” and “threatened fines of up to $5,000 if Full Circle continued to operate without a license.”
Compassion & Choices’ chief legal advocacy officer Kevin Diaz argues in the amicus brief that:

Full Circle “has a disclaimer on its website that they are not funeral directors, do not offer funeral home services, and do not operate out of a funeral home”; that:
“Full Circle does not need a physical location for its services and the cost of obtaining such a location far exceeds the non-profit’s small budget.”

and added that

“a ruling in favor of the California Cemetery and Funeral Bureau “will force most, if not all, death doulas out of practice.” (Emphasis added)
As Kim Callinan, the President and CEO of Compassion & Choices explains in her 2021 article “Medical Aid in Dying: The Role of Death Doulas” for the National End-of-Life Doula Alliance newsletter:
“Death doulas can play a key role in shifting end-of-life care from a paternalistic to patient-directed system by bringing non-judgmental support to patients and serving as their advocate. This is particularly needed for patients who would like the option of medical aid in dying. All too often, interested and eligible patients are unable to navigate the complicated, multi-step process to access medical aid in dying (aka medically assisted suicide); too many unfortunately die suffering. (All emphasis added)
CONCLUSION

Over more than 52 years, I have cared for many dying people, both personally with friends, my mother and daughter and professionally in cancer units, critical care and home hospice. The people I have cared for range from babies to the very elderly.

My interest in people with terminal or life-threatening illnesses started when I first became an RN in the late 1960s and saw people with terminal cancer routinely secluded in in a private room at the end of a hall.

I asked the more experienced nurses how I should approach these patients and if I should be cheerful or solemn.

These nurses said they didn’t know the answer either so I had an idea. I decided to go visit these patients after I finished my shift and just ask to sit down and speak with them. Many of these wonderful people told me how isolated and lonely they felt when friends and family members treated them differently and we would talk about what they wanted both before and after their expected deaths.

I shared what I learned with the other nurses and family members who were relieved to know how they could help.

Whether or not these people were in hospitals, institutions or at home, the goal was always to help them live as well as possible until death. It was imperative that these people felt loved, respected and cared for even when they seemed to be unconscious. I also saw that the person’s relatives and friends also needed understanding and support. It helped that I personally knew how hard it can be to lose a loved one.

I feel privileged to have cared for my loved ones, friends, patients and their families and I never witnessed an excruciatingly painful death or was tempted to help end a life because I knew how to help.

It will be interesting to see what happens in the Full Circle of Living & Dying v. Sanchez case but I know that no matter whether a person is physically healthy or terminally ill, assisting a suicide is never good healthcare!

Monday, December 6, 2021

Death capsule is designed to undermine societal resistance to suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

I have avoided writing about Philip Nitschke's (Dr Death) Sarco Death capsule that is designed to promote his death business while undermining resistance to suicide.

An article written by Clare O'Dea for Swissinfo.ch says that Switzerland has approved the Sarco death machine. Essentially this article is propaganda to popularize suicide and provide fame for Nitschke.

O'Dea reports:
Some 1,300 people died by assisted suicide in Switzerland in 2020 using the services of the country’s two largest assisted suicide organisations, Exit (no connection to Exit International) and Dignitas. The method currently in use is ingestion of liquid sodium pentobarbital.

...Sarco offers a different approach for a peaceful death, without the need for controlled substances.
Sarco is a deadly lucrative stunt for Nitschke, O'Dea confirms my thoughts:
The first Sarco is being displayed at the Museum for Sepulchral Culture in Kassel, Germany from September 2021 to August 2022. The second turned out not to be aesthetically pleasing. For that and various other reasons it’s not the best one to use.

In other words, the purpose of Sarco is to enable suicide in an aesthetically pleasing way.

Sarco fulfills Nitschke's philosophy that suicide should be available to anyone at any time. Nitschke tells O'Dea:

P.N.: Currently a doctor or doctors need to be involved to prescribe the sodium pentobarbital and to confirm the person’s mental capacity. We want to remove any kind of psychiatric review from the process and allow the individual to control the method themselves.

Nitschke has been promoting suicide for years. Many years ago, when he was trying to create the "peaceful suicide pill" he was he stated that the suicide pill is for anyone, including troubled teens. This is what he told Kathryn Lopez in 2001:

I do not believe that telling people they have a right to life while denying them the means, manner, or information necessary for them to give this life away has any ethical consistency. So all people qualify, not just those with the training, knowledge, or resources to find out how to 'give away' their life. And someone needs to provide this knowledge, training, or resource necessary to anyone who wants it, including the depressed, the elderly bereaved, the troubled teen. If we are to remain consistent and we believe that the individual has the right to dispose of their life, we should not erect artificial barriers in the way of subgroups that don't meet our criteria.

Nitschke is a death salesman and the Sarco is his latest deadly device to create attention to his deadly business, while killing people along the way.

More articles on Nitschke:

  • The economist swoons over death doctor and his suicide machine (Link).
  • Suicide promotion websites linked to euthanasia activist (Link).
  • Schadenberg comments on suicide activist, Philip Nitschke (Link).

Scotland assisted suicide consultation (Guide)


Your responses are invited to a consultation document on assisted suicide for Scotland ahead of a 22 December deadline

"A proposal for a Bill to enable competent adults who are terminally ill to be provided at their request with assistance to end their life" has been lodged with the Scottish Parliament by Liam McArthur MSP, and a public consultation on the terms of the proposal is underway. A report based on the responses will then be compiled and published, and will inform the final bill.

The proposal envisages assisted suicide for persons:
  • Aged 16 or over (the age of majority in Scotland) 
  • Resident in Scotland for at least 12 months  
  • Deemed to be "terminally ill", which McArthur understands to mean "a registered medical practitioner has diagnosed them as having a progressive disease, which can reasonably be expected to cause their death."

The consultation document includes detail on what McArthur expects a bill to include by way of eligibility and procedure, as well as background to the proposals, and runs to some thirty pages. The more substantial your response to the consultation, the more effective it will be in pushing back against the proposals - especially if supported by your own personal experiences - but you're not required to answer all of the questions.

Respond to the consultation at: www.smartsurvey.co.uk/s/AssistedDyingProposal 

The essential questions

There are five mostly tick-box questions in the first section, "about you".

Regarding "your views on the proposal", your submission will be the stronger for every answer you give, but of the ten questions in the second section, the first is essential:

1. Which of the following best expresses your view of the proposed Bill?
We strongly recommend ticking Fully opposed

Please explain the reasons for your response.

We suggest making clear your objection to both the proposal and the principle. Principled objections can be summarised as noting that euthanasia and assisted suicide laws are:

Uncontrollable - once the principle is accepted into law, it is subject to abuse and extension as arbitrary lines are redrawn as seen in Oregon, Canada, Belgium and beyond.

Unethical - legalisation would make assisted suicide a treatment option to be offered alongside others, forcing the choice upon all eligible patients and making it a budgetary consideration when the great expense of end-of-life care is under review. To say in law that some suicides are to prevented, and others assisted, necessarily devalues people's lives.

Unnecessary - repeated studies have found that end of life suffering is often rooted in a lack of access to palliative care, including access to specialist palliative care, and also to constraints on living with dignity with proper financial and community support.

The detail
2. Do you think legislation is required, or are there are other ways in which the Bill's aims could be achieved more effectively? Please explain the reasons for your response.
We strongly recommend answering "no". You might point to the need to ensure equitable access to fully-funded palliative care and adequate financial support for dignity in living for those with terminal and chronic illnesses, and disabilities.
3. Which of the following best expresses your view of the proposed process for assisted dying as set out at section 3.1 (Step 1 - Declaration, Step 2 - Reflection period, Step 3 - Prescribing/delivering)?
We strongly recommend ticking Fully opposed
Please explain the reasons for your response, including if you think there should be any additional measures, or if any of the existing proposed measures should be removed. In particular, we are keen to hear views on Step 2 - Reflection period, and the length of time that is most appropriate.

You might point to the phenomenon of doctor-shopping in places like Oregon, where physicians who often have no prior knowledge of patients and who are predisposed to agree to assisted suicide sign an alarming number of requests and prescriptions.

4. Which of the following best expresses your views of the safeguards proposed in section 1.1 of the consultation document?
We strongly recommend ticking Fully opposed
Please explain the reasons for your response.

The proposal is being sold as a limited offering because it is based on a terminal diagnosis - "the choice to live has already been taken away", McArthur claims. You might point out that while life expectancy predictions are notoriously unreliable, the choice not to include a time-frame in the proposal's definition of "terminal" means including people who could live for many years.

5. Which of the following best expresses your view of a body being responsible for reporting and collecting data?
We strongly recommend ticking Fully opposed
Please explain the reasons for your response, including whether you think this should be a new or existing body (and if so, which body) and what data you think should be collected.
The proposal would require that deaths by assisted suicide be listed on death certificates as in fact caused by the underlying illness. You might say that any system of oversight which requires dishonesty from the outset cannot serve transparency or justice.
6. Please provide comment on how a conscientious objection (or other avenue to ensure voluntary participation by healthcare professionals) might best be facilitated.
The requirement that doctors with conscientious objections make effective referrals to colleagues open to assisted suicide requests is deeply concerning, requiring meaningful participation in the process despite claims to the contrary.
Financial implications

7. Taking into account all those likely to be affected (including public sector bodies, businesses and individuals etc), is the proposed Bill likely to lead to:
We strongly recommend ticking a significant reduction in costs
Please indicate where you would expect the impact identified to fall (including public sector bodies, businesses and individuals etc). You may also wish to suggest ways in which the aims of the Bill could be delivered more cost-effectively.
You might point to a report issued when Canada was in the process of widening its euthanasia law, calculating multi-million dollar savings if more people could take up euthanasia, and a paper from the University of Strathclyde suggesting that "the economic costs of denying assisted dying should not be ignored; they should not be the key driver of any legal change, but it would be irresponsible not to consider them." The cheaper option would cheapen human lives.
Equalities

8. What overall impact is the proposed Bill likely to have on equality, taking account of the following protected characteristics (under the Equality Act 2010): age, disability, gender re-assignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, sexual orientation?
We strongly recommend ticking Negative

Please explain the reasons for your response. Where any negative impacts are identified, you may also wish to suggest ways in which these could be minimised or avoided.

You might note that barriers to euthanasia for children have been challenged in Canada and overturned in Belgium; and substantial concerns from within the disabled community that "if assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that."

Sustainability

9. In terms of assessing the proposed Bill's potential impact on sustainable development, you may wish to consider how it relates to the following principles:
living within environmental limits
ensuring a strong, healthy and just society
achieving a sustainable economy
promoting effective, participative systems of governance
ensuring policy is developed on the basis of strong scientific evidence.

With these principles in mind, do you consider that the Bill can be delivered sustainably?
We strongly recommend ticking No
Please explain the reasons for your response.
You might point to the proposal's attempt to justify legalising assisted suicide before ensuring equitable access to fully-funded palliative care, and adequate financial support for dignity in living. Such mis-prioritisation is an affront to a "healthy and just society."
General

10. Do you have any other additional comments or suggestions on the proposed Bill (which have not already been covered in any of your responses to earlier questions)?
If you have a pertinent personal perspective - especially experiences as patients, healthcare professionals and carers - this could be the moment to share something that showed up the threat of legalising assisted suicide or the difference made by accessing meaningful care and support.

Respond to the consultation at
: www.smartsurvey.co.uk/s/AssistedDyingProposal

You can read the full consultation document here here

Remember to respond before Wednesday 22 December.

Thursday, December 2, 2021

Dutch doctors group approves euthanasia for incompetent people.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

As the slippery slope in the Netherlands euthanasia experiment is greased, other nations may follow.

The DutchNews.nl reported that the latest Netherlands euthanasia development is the change by the Dutch Medical Association (KNMG) allowing doctors to euthanize patients with advanced dementia who made an advanced request while competent but who cannot consent to their death.

According to the DutchNews.nl:
The change in position follows a ruling by the Supreme Court in April 2020, in which judges said a doctor who ended the life of a patient with severe dementia had not committed a criminal offence. The patient was no longer in a position to confirm her written euthanasia request.
The Netherlands Supreme Court decision referred to in the article concerned a woman with dementia who had resisted dying by euthanasia, so the doctor first put a sedative in her coffee, but then the woman continued to resist so the doctor had the family hold her down as the woman was lethally injected.

Canada is considering similar changes to its euthanasia. Sadly, the KNMG acceptance of euthanaisa for incompetent people will make it easier for Canada to accept the same protocols.

Euthanasia is sold to the culture based on full consent and the freedom of choice. These protocols clearly undermine the requirement of consent.

Tuesday, November 30, 2021

Portugal's President de Sousa vetoes euthanasia bill.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

President Marcelo Rebelo de Sousa
The Associated Press reported that Portugal's President, Marcelo Rebelo de Sousa, has vetoed the second euthanasia bill this year, a bill that was passed by Portugal's parliament in early November.

President de Sousa reportedly vetoed the second euthanasia bill because of contradictions in the language of the bill. According to the Associated Press article:
This time, the president is returning the reworded law to the national assembly, according to a statement posted on the Portuguese presidency’s website late on Monday, arguing that further clarification is needed in “what appear to be contradictions” regarding the causes that justify resorting to death with medical assistance.

Whereas the original bill required “fatal disease” as a pre-requisite, the president’s argument followed, the renewed version mentions “incurable” or “serious” disease in some of its formulation. No longer considering that patients need to be terminally ill means, in De Sousa’s opinion, “a considerable change of weighing the values ​​of life and free self-determination in the context of Portuguese society.”
My reading of the euthanasia bill was that it was oriented to euthanasia of people with disabilities.

On January 29, Portugal's parliament passed a first euthanasia bill. On February 19, President de Sousa did not to sign the bill into law but instead he referred the bill to Portugal's Constitutional court for evaluation. President de Sousa stated that he thought that the bill was: 

"excessively imprecise," potentially creating a situation of "legal uncertainty."
On March 15, Portugal's Constitutional court rejected the euthanasia bill. The Portuguese American Journal reported that the Constitutional court decided that:
“the law is imprecise in identifying the circumstances under which those procedures can occur.” The court stated the law must be “clear, precise, clearly envisioned and controllable.” The law lacks the “indispensable rigor.
In July, 2020 I reported that the Portuguese Medical Association informed the government that they will not permit doctors to participate on the euthanasia commission (the commission to approve euthanasia). At the same time, a group of 15 law professors, including Professor Jorge Miranda, known as the father of Portugal's Constitution, stated that the euthanasia bills are unconstitutional.
 
Parliament is dissolving on December 5. A new bill cannot be debated until after the January 30, 2022 election.
 
More information about this topic:

Monday, November 29, 2021

Belgian euthanasia doctor accused of unlawful euthanasia.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Belgian euthanasia protest
The veneer of Belgian euthanasia has been peeling off with the publicity of the trials in the Tine Nys euthanasia death and the case launched by Tom Mortier to gain justice in the death of his healthy but depressed mother.

A court decision to determine if the doctor made a mistake in the death of Tine Nys was expected last month but has not yet been promulgated.

Recently a doctor was arrested after a complaint stated that the doctor had unlawfully euthanised a 91-year-old man in the Jan Palfijn hospital in Ghent. The hospital first suspended the doctor from his duties and then withdrew the suspension.

According to Amelie Outters reporting for VRT.BE:
On Saturday 20 November, after the death of an elderly patient, a "possibly unlawful euthanasia" was reported to the police, according to the East Flanders prosecutor's office. An investigating judge was requested to investigate the exact circumstances of the termination of life and the doctor was arrested and brought to trial. He was released under strict conditions after extensive questioning by the investigating judge.
Doctors at the Jan Palfijn hospital recently protested that the hospital managers contacted the public prosecutor without first discussing the accusation with the doctor.

A study published in the New England Journal of Medicine (NEJM) on March 19, 2015 stated in the Flanders region of Belgium (2013), more than 1000 assisted deaths were done without explicit request and almost half of the assisted deaths were not reported.

It looks like a “cover-up” when an independent study produces hard data concerning the lack of oversight with the Belgian euthanasia law while the government evaluation committee claims that there are no problems with the euthanasia law.

Germany: You Must Be Fully Vaxxed before dying by Assisted Suicide

This article was published by National Review online on November 28, 2021.

Wesley Smith
By Wesley J Smith

The ironies of assisted suicide never end. Germany allows suicide on demand — including assistance — as a fundamental constitutional right. But now, you must be vaccinated against COVID before a euthanasia group will help you kill yourself. From the Spectator story:
As European countries battle to limit the spread of the virus, Verein Sterbehilfe – the German Euthanasia Association – has issued a new directive, declaring it will now only help those who have been vaccinated or recovered from the disease. In a statement, the association said:

“Euthanasia and the preparatory examination of the voluntary responsibility of our members willing to die require human closeness. Human closeness, however, is a prerequisite and breeding ground for coronavirus transmission. As of today, the 2G rule applies in our association, supplemented by situation-related measures, such as quick tests before encounters in closed rooms.”

‘Close encounters in closed rooms’ – what a fabulous German euphemism for assisted suicide.
Sometimes words even escape me!


Rethinking ‘dying with dignity’

This interview was published by MercatorNet on November 29, 2021.

Dr Ole Hartling
Dr Ole Hartling is a Danish nuclear medicine specialist. For five years he was the chair of Denmark’s Council of Ethics. Recently he wrote a book (in Danish and English) on euthanasia, “Euthanasia and the Ethics of a Doctor’s Decisions”. MercatorNet asked him to comment on the autonomy argument for ”assisted dying”.

If I could begin with a personal question… You relate in your book the lingering and painful death of your wife Katrine from renal failure. What did you learn from living with her illness?

I learned an aspect of the patient-doctor relationship in connection with assisted dying, and it is one that I had not been thoroughly aware of. But it was so lucidly taught to me by Katrine.

In 2008 Katrine was put on dialysis due to a kidney disorder.

The dialysis sessions were gruelling, but vital, and by the end of 2011 had become necessary every other day. Four or five hours’ dialysis, a break the following day, then again. As the time for dialysis approached, the accumulation of fluids started to torment her. Her breathing became laboured, and she had pressure across the chest.

There was the transport to the ward. The waiting time. The many hours tied to the couch. She was capable of reading a little but interruptions were frequent. For many hours immediately after dialysis, she was extremely tired owing to the body’s reaction to the volumes of fluid that were being “moved” and cleaned, and to the rapid reduction in the body’s volume of fluid.

After that there were a few hours of being more or less comfortable, unless she felt queasy or had a headache. You might call it an oasis of comfort between dialyses. The fear of the next dialysis was gradually superseded by a longing for it, due to the mounting fluid pressure, with shortness of breath and strain on the heart.

She yearned so badly for normal days without pain and nausea but they were few and far between. And there was an overwhelming certainty that there was no prospect of recovery. She cried at night in her hospital bed – out of loneliness, exhaustion and privation.

“I know what I can do,” she said one day. “I’ve been thinking it over. Want to hear?” I nod cautiously. Her eyes come to rest on me. She is serious. “Well, one night I’m going to open up my dialysis catheter. It’s quite possible; they don’t watch me so much at night-time. The blood will slowly drip out. Because of the anti-coagulation therapy, it won’t stop. I’ll slowly fall asleep …”

And then hardly pausing, she went on. “No, no – when you look at me like that, I won’t do it.”

Katrine was thinking of taking her own life for her own sake and refrained from it for mine — or perhaps for her own sake too. Did she tell me about it to find the courage to carry on living? Because I believe it gave her strength that, despite pain and misery, there was something to live for. Somewhere she needed my dismay, making her utter the words: “No, when you look at me like that, I won’t do it!”

My conversation with Katrine emphasizes that no serious decisions are taken “regardless” — that is, no decisions can be divorced from the relationships we have. In particular, though, she also taught me that a desperate person – it may be one of those closest to us but can also be a less familiar person, a patient for example … a desperate person may need to be met with more than just a logical understanding that it is best to go to one’s rest now.

Why do opinion polls so often show that about 70-80 percent of the public want euthanasia?

Yes, this finding is quite constant, but I believe there is a great risk that many of these results have been flawed. One reason could be that the questions in surveys are leading because they must at the same time explain what the question is about, and naturally this explanation does not contain obtrusive terms such as “killing”. On the contrary, the wording is usually chosen to be acceptable.

I have seen polls that simply contain the two main arguments for legalization that invariably appear in this debate: avoiding unbearable suffering and respecting the right to self-determination. In the accompanying explanation words like “voluntary” and “advisedly” often appear because that is how legalization is thought to be established, and these terms appeal to the fine and widely acknowledged concepts of individual autonomy and free will.

Another reason may be even more important. The majority of people who are surveyed are healthy. They cannot imagine themselves being crippled, blind, deaf, suffering, on dialysis, demented and dependent on care. They would rather die than experience this – or so they think.

The other day I had a talk with a colleague who is a neurologist. He explained that his (healthy) friends favoured legalization whereas his sick patients did not.

In fact, some years ago I found a survey on the issue of assisted dying among oncology patients. Their support for legalization of euthanasia was considerably lower than among healthy people. At the time of writing I cannot find this study, but a few of this kind have been made.

There is another group of people which usually does not favour legalization, and that is physicians. They know who will be expected to be in the front line, if it comes to taking the lives of patients.

If I understand you correctly, autonomy at the brink of death is different from the autonomy we exercise when we decide whether to buy a car or a motorcycle. Could you explain that?

This is an important question in as much as referral to autonomy is a core argument in the supporting of legalization of assisted dying. However, exercising autonomy can to some extent be illusionary – and for more than one reason.

With a law on euthanasia or assisted dying this possibility would inhabit everyone’s consciousness – the patient’s, the doctor’s, the relatives’, and the care staff’s – even if not formulated as an out-and-out offer. How autonomously can the weakest people act when the world around them deems their ill, dependent, and pained quality of life as beyond recovery?

Patients can find themselves directly or indirectly under duress to choose the option of dying if they consider themselves sufficiently pained and their quality of life sufficiently low. Patients must be at liberty to choose assisted dying freely, of course – that is how it is presented – but the point is that the patient cannot get out of having to choose. It has been called the “prison of freedom.”

Pressure on the patient does not have to be direct or articulated. It may exist as an “internalized external pressure”. The French bioethicist Emmanuel Hirsch expressed this in the following way:

“A patient may truly want to die, but this desire is not the fruit of his freedom alone, it may be – and most often is – the translation of the attitude of those around him, if not of society as a whole which no longer believes in the value of his life and signals this to him in all sorts of ways. Here we have a supreme paradox: someone is cast out of the land of the living and then thinks that he, personally, wants to die.”

An inherent problem of autonomy in connection with assisted dying is that a person who uses his or her presumed right to self-determination to choose death definitively precludes him or herself from deciding or choosing anything. Where death is concerned, your right to self-determination can only be exerted by disposing of it for good. By your autonomy, in other words, you opt to no longer have autonomy.

At any rate, autonomy is not the only factor or even always the key factor when deciding whether assisted dying or euthanasia can be granted. It is not enough to refer to the fact that the patient requested it. In other words, it is not only the patient’s own evaluation that is crucial. The value of the patient’s life must also be assessed as sufficiently low. That the patient’s right to self-determination will always be relative is not fully acknowledged in the debate.

A competent and legally capable person must have the option of voluntarily choosing assisted dying in the event of unbearable suffering, but why does suffering have to be a requirement?

The answer is straightforward: our concepts of assisted dying imply that compassion must form a decisive element of the decision – mercy killing and compassionate killing are synonyms for euthanasia. But this leads instantly to the question of why we should not also perform assisted dying on people who are not in a position to ask for it themselves but are also suffering.

Some people find the reasoning unproblematic: after all, relieving suffering is a duty. But in this particular context it is not unproblematic, because it effectively shifts the focus from the autonomy claimed. According to prevailing ideas about autonomy, patients initially evaluate their quality of life themselves, but ultimately it is those around them who end up gauging that quality and the value of their life.

That is to say, the justification for so called assisted dying is based on the premise that certain lives are not worth living rather than the presence of a request. The whole point is that in the process, respect for the patient’s autonomy is not independent of other things.

There is an intriguing paradox in this debate. You wrote in your book that “A ‘dignified death’ is not to give life because it is worth a lot, but to want to dispose of it because it is not worth anything.” Do we need to rethink the idea of “dying with dignity”?

Yes, I do think rethinking is necessary. I cannot imagine a single person who would not wish death to take place with dignity for both themselves and others. The words “dignity” and “dignified” are persuasive, because they are associated only with positive thoughts, and that makes it difficult to disagree. A suicide clinic in Switzerland is run by an association bearing the name “Dignitas” – the Latin word for dignity. In the US state of Oregon, the law on physician assisted suicide is called the Death with Dignity Act.

But to many people’s ears dying with dignity has become a paraphrase – and almost a synonym – for euthanasia and assisted dying. In my book, I quote the medical ethicist David Albert Jones, who said: “The principles of autonomy and the alleviation of suffering have often been expressed in terms of human dignity: The dignity of a chosen death and the indignity of suffering and dependence.”

By equating “a dignified death” with euthanasia, this not being in control over the time of death becomes undignified in its own right. The fact that a person can determine and make his or her own choice is regarded as dignified. That dignity ties in with the ideology of self-determination and autonomy.

It is alarming if autonomy is made the benchmark for human dignity. For if we link dignity with autonomy, with being in control over things, control of our life and our functions, we will ineluctably end up linking indignity with not having control of our capacity for reasoning, walking, passing water and so on.

Where we “earn” our dignity ourselves, we become vulnerable, for that dignity can be threatened by guilt and shame. That dignity is fragile, for it depends on our own abilities and depends on whether we are in control of our functions and our life. But in that case indignity is involuntarily linked to not being in control.

Dignity here becomes almost synonymous with self-esteem or self-regard, and it can be dismantled in a person who feels unwanted. Those who surround a person – the relatives and hospital staff, for instance – can therefore have a powerful influence on the way a person perceives himself and his life.

A person can lose his self-respect. If a person feels rejected and redundant, for that reason he or she may feel unworthy and disowned, having a fractured sense of dignity and perhaps even wish to be dead

We see dignity in the choice made by members of society in bygone ages when, enfeebled and burdensome to the community, they placed themselves outside of it and sought death of their own accord. This was to enable the others to survive and live to fight another day. Was it not dignified, too, almost transcending comprehension, when four young chaplains during the Second World War handed their life jackets and seats in the lifeboat over to others and drowned? A stamp was published to commemorate their heroic deed.

The dignity in these examples comprises the existence of something that is worth more than life, and they show that one’s life can be given for someone else.

In my book, I quote the theologian Rudolph Arendt, who said: “Life is too good to throw away, but not too good to give away. On the contrary, it is best, if given away, that it happens either in an instant, or that all of life go with it. The paradoxical thing about life is that it can only be given away when it is held in high esteem. Where life is disdained, it cannot be given away, though certainly thrown away perhaps, which is something altogether different. Only because life is great is it great to sacrifice life …”.

In the campaign to legalize assisted dying the concept of dignity has been displaced – imperceptibly but displaced quite decisively conceptually – so as to make the meaning almost the opposite. “A dignified death” is not to give life because it is worth a lot, but to want to dispose of it because it is not worth anything.

We speak perhaps of it being undignified for the patient not to be able to fend for him or herself but to need care. Is it conceivable that a person’s dignity is another word for a person’s worth here? A euphemistic paraphrase of the word value? If dignity is interlinked with or in reality means value, it is an objectification, and that is a violation of a golden rule of ethics. It is offensive and painful for a person to become an object. And moreover, not to be valued, but evaluated. And if it takes place under cover of referring to dignity or of the patient’s situation now being unworthy, it is hypocritical, and a far cry from the dignity there should be in human relations. Can the actual assessment of a person’s quality of life and the evaluation of a person’s life-value play a part in devaluing it?

The Belgian oncologist Benoit Beuselinck whom I quote in my book said: “The pressure on doctors also increases due to communication with slogans. If euthanasia is defined as ‘dying with dignity’, doctors who do not perform euthanasia are implicitly labelled as inhumane.”

He also stated that, ”Some Belgian palliative care units, that have opened their doors to patients requesting euthanasia, have seen nurses and social workers leaving the unit because they were disappointed that they could no longer offer palliative care to their patients in an appropriate way. They were upset that their function was reduced to preparing patients and their families for lethal injections.”

To summarize, we do need to rethink the idea of “dying with dignity”? There is a difference between bringing about death as a form of care and giving care for the dying. Those working in palliative therapy have been involved in ensuring that “a dignified death” is not merely a beautifying turn of phrase for euthanasia and therefore that advocates of legalizing euthanasia or assisted dying do not have a monopoly on the concept of dignity.

The introduction of assisted dying will not give dependent people a free choice. The choice will only be free once we start seriously telling a new story – a narrative that informs why it is worth living as a sufferer and dependent, not just why it is worth dying. 

I was intrigued by your analysis of a request for “assisted dying”. You point out that the decision is never fully autonomous because a doctor is still a gatekeeper. Can a patient ever be fully autonomous?

No, it may be a fundamental illusion that we are autonomous as if we were living in a vacuum. No serious decisions we take can be divorced from the relationships we have.

But there is more to it: the doctor also has autonomy, so to speak. Although patient autonomy is a consistent principle running through the care and management of patients, it must be remembered that autonomy means that he or she has the right to decline any treatment. It does not entail a right to have any treatment the patient might wish for. In other words, patients do not have the right to demand treatment that signifies another’s duty to fulfil that right.

Thus, if with “fully autonomous” you mean that any choice that the patient makes is to be respected the answer is No. If that were the case, autonomy would be the same as “autocracy”– rule of the self over others. As a consequence, rejecting any claim that the person might make is not a violation of a patient’s self-determination – for example, there may be sound medical reasons for not complying with a demand. To be precise, refusing to kill a person cannot be a violation of that person’s autonomy.   

You make a very telling observation – that when a patient makes a rational request for euthanasia, a “Yes” validates their own feeling of redundancy and lack of self-worth. In your experience, how does euthanasia affect the doctor-patient relationship?

It is my conviction that if the doctor who is the one to alleviate suffering is also the one to take life and/or help with dying, it invariably will influence the patient-doctor relationship.

It is an often-heard statement that the opening of an assisted dying option makes possible a better discussion of the approaching end. But when the patient and the doctor speak openly about the wishes of the patient, the doctor is left with a choice: should he improve hope and life or should he support the patient in the patient’s giving up?

If it is accepted as a normal part of the doctor’s job to help the patient give up, it can influence that relationship. The patient may well falter between suicide and hope and will lose the doctor as an unambiguous ally with life and hope.

If assisted dying is legalized it may also influence the patients’ own participation in the relationship. Should a doctor not be willing to assist a patient’s suicide, the patient can still get it elsewhere (if it were legalized), and the patient is suddenly gone – dead. The certainty of this possibility can influence the doctor’s unconscious investment in the relationship, or even be seen as a type of competition, where the doctor who remains on “the side of life” has to outdo the “assisted dying colleague” as the one who is the best helper of the patient.

I – as a doctor – want to remain the one who stands for hope, mitigation, relief of suffering and not being overcome by the patient’s feeling of hopelessness. It may be a help for both doctor and patient that the law still establishes a barrier. 

A patient may already feel redundant when he or she makes a rational request for assisted dying, but this feeling of redundancy can be reinforced when he or she is met with a rational understanding that this would be the best option. Would the rational approach include a form of abandonment or even repudiation?

In the communication between the doctor and the patient we make use of both rational and irrational languages. This happens more or less unwittingly but it is absolutely defined by the circumstances under which we think, act and live.

This is a forgotten aspect of the debate, and the one to which Katrine opened my eyes. In a country with legalized euthanasia, the message is: “You are requesting your own death. That is understandable; you have an unbearable condition, and we cannot do that much more. But you must consider your request carefully. I will return to hear whether you still mean it. (According to the rules the request must be sustained.) I also need to run it past a colleague before we can proceed with such action. (An impartial colleague must be consulted in order to be involved in establishing that the situation is hopeless and that the patient means what he or she says.)”

The reply, therefore, is based on a well-intentioned and rational evaluation of what best serves the patient. But at the same time – and less intentionally – the reply will include: “We can help you from here on out, because you are altogether dispensable, and disposable, paltry as you are.” Barely anyone speaks with such outright callousness, but the point is what the patient hears in that resolute offer of assisted dying in the midst of his or her wretchedness?

In a country with a sustained ban on euthanasia the message might read: “You are requesting your own death. That is understandable, because you find yourself in a terrible predicament. We will do whatever we can for you, and we will also be with you now that things are so bad.”

The patient will repeat his or her wish to die perhaps, but the final barrier in law need not, as is sometimes claimed by rational minds, be merciless; rather, it can be an undertaking that we dare to be with the patient in there and our powerlessness, and that they must remain part of the community – that is this life.

I recently read a paper by a palliative care doctor, AJ Donkin, who said: “… an expression of a wish to die may be more a question than a statement: ‘Am I of any worth?’ ‘Am I in the way?’ Patients are looking for a picture of themselves in the eyes of their beholders. If the answer is returned that they should be helped to die, it is an affirmation of what they suspected – that others now see them as worthless.”

The Belgian oncologist Beuselinck said something in the same vein: “When patients no longer believe that their lives are worth living, this compels doctors to become judge of autonomy questions and of existential/mental suffering while seeking to resolve these problems through the administration of death. […] [Then] the doctor is acting outside his or her proper role and competence, both in relation to the indications, and in relation to the proposed solution.”

I seriously believe that it is important for the doctor to remain on the side of life when asked to help. It may sound a little pompous, but to bring things back down to earth, the doctor dares to be with the patient when things really take a turn for the worse without having some other agenda in the mix. 

Most people seem to oppose euthanasia on religious grounds. But your position is that there are more than enough “secular” reasons. Could you explain that?

I agree that religious “arguments” have played a part in the discussion of the issue of assisted dying and euthanasia. I do, however, not adhere to numinous arguments resting on, for example, the sanctity of life, that life is inviolate or that life is a gift. These lines of thought are metaphysical and easily become dogmatic and hence unconvincing. I expand upon this in my book.

Indeed, I believe that religious arguments can be detrimental to sober-minded thinking, because they are dogmatic rather than evidence based. If life is to be preserved at any price, for example, even futile treatment must be given and continued to absurdity.

There is a perception that the Catholic Church is always opposed to discontinuing treatment and this might even have prompted secular politicians to promote legalization of assisted dying in a wish to curb the influence of the church on citizens’ self-determination.

Together with a general confusion in distinguishing treatment cessation from taking life this may pave the way for drafting laws on euthanasia. Indeed, that mechanism may have been active in the recent plans for legalization in Spain and Portugal.

In my eyes the crucial arguments against a law on euthanasia are secular in nature and are specifically based on demonstrating that the customary arguments in favour of euthanasia (avoidance of unbearable suffering and respect for the right to self-determination) are untenable.