Monday, November 29, 2021

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 The fear of the next dialysis was gradually superseded by a longing for it, due to the mounting fluid pressure, with shortness of breath and strain on the heart.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.

1 comment:

Stephen said...

The personal experience of the dialysis patient reminded me that suffering can be alleviated by medical procedure and therapy not death. There is a device called the Amia Machine that allows the patient to perform dIalysis at home four times a day. That would reduce or eliminate the pain of waiting too long between sessions and save the patient travel and wait time in the hospital. The patient would achieve a reasonable quality of life and hopefully relieve the disparity.