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Resisting

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Abstract

Trained in France, I have been practising in Belgium since 2015. As general practitioner, I also hold a diploma in palliative care, a degree requiring 2 years of training and placements. Before coming to Belgium, I practised in France in a mobile hospital and community palliative care team, and in a palliative care unit.

Early significant dealings with practises in Belgium happened during my studies when a physician in a Belgian community palliative care team came to give a lecture in Lille, where he told us about his practise of euthanasia. We were confounded by this ‘medical capacity to take away a life’!

Keywords

  • Euthanasia
  • Family pressure
  • Palliative care
  • Sedation

To accept the concept of ‘unappeasable suffering’ as a legal condition of euthanasia is to disguise a wolf in sheep’s clothing.

Nicole B. (volunteer in bioethics)

Trained in France, I have been practising in Belgium since 2015. As general practitioner, I also hold a diploma in palliative care, a degree requiring 2 years of training and placements. Before coming to Belgium, I practised in France in a mobile hospital and community palliative care team, and in a palliative care unit.Footnote 1

When in Belgium, I elected to work in a setting where I would be spared quandaries of conscience. As early as the employment interview, I made clear that I would not perform euthanasia and wished to work with people who shared my views; even my head of unit does not perform euthanasia. When the question is raised by a patient, it is a matter for discussion and I can express my opinion. That is why the workplace suits me. Besides, we never admit patients specifically for euthanasia.

My rule of thumb is not to take part in it in any way. When a patient expresses a wish to be euthanised, I report it in the staff meeting, making very clear that the information I share can in no way be considered medical advice on my part about the euthanasia request. I simply report that I have heard the patient’s question. Luckily, I am not ostracised because of my convictions and can see all patients. On the other hand, some members of staff who are in favour of euthanasia will help patients fill in their request form if they cannot do it themselves. But even they accept my refusal to be involved in euthanasia and I experience genuine respect; when a euthanasia is planned on the ward, the team makes sure that those of us who are against it are not present at the time of the lethal injection.

8.1 The Request for Euthanasia

Organisations that advocate the right to euthanasia campaign to incite people to write down Advance Directives requesting euthanasia. This mainly serves to belittle the act in people’s minds, who see it more and more as a merely civil act. But the Advance Directives form—which needs to be updated every 5 years—only applies to situations where the patient is unconscious, which represents a very small percentage of the actual cases of euthanasia… at least so far. Furthermore, a number of patients who have registered Advance Directives with the local authority wrongly believe that this covers all possible end of life situations, which can lead to painful misunderstandings.

Another issue worth mentioning is that of the ‘trusted person’Footnote 2 whose role is not very clear, and the chosen person is not always aware of what their designation entails. Some organisations have started to provide ‘trusted persons’ for people who do not know who to ask in their immediate circle of family and friends. Thus, a ‘trusted person’ is reduced to paperwork, devoid of emotional connection.

According to the law, the euthanasia request needs to be handwritten by the patient, or, if they cannot do it, by a third person in the presence of two witnesses. What bewilders me is that as soon as a patient says ‘I want to die!’ certain health workers take this literally. What we consider a cry for help and an expression of suffering in palliative care, becomes for some an outright request for euthanasia! Some carers will not even take the time to reformulate the patient’s request and verify that they have understood what the patient is really saying. Does the patient actually mean: ‘I want you to make sure I die’? So often, a lot depends on the carer’s attitude towards the patient. In palliative care, we are used to hear patients speak along those lines. That is normal! We know that death is part of life, that it is natural to die, that it is a challenging time one has to go through, and that we can talk about it without it being understood that the patient wants to be euthanised!

8.2 Family Pressure

It happened to me once or twice, in Belgium and in France,Footnote 3 that a family asked for euthanasia for their loved one. The main challenge for the people around a patient is time: the time illness takes to bring life to a close, and the duration of the final phase. Patrick Baudry says it very well: ‘Terminal restlessness is not only a sequence of physiological reactions leading to death; it is a psychological and spiritual process which eludes us to a large extent. Speaking only about symptoms would mean reducing it to a last illness. Yet, we stand facing a mystery’. [1].

Human nature is better at tolerating an ordeal when one knows how long it will last. But End of Life essentially changes our perception of time. This is not easy. There can be a huge disparity between what people imagine and what is really happening. Often too, family members who notice physical decline, immediately think ahead about the end of life.

I remember a patient who had written Advance Directives for euthanasia ‘in the event’. Day by day, he was becoming frailer but, fully accepting his physical condition, he took it in his stride and enjoyed all the ‘good’ that he was offered. As days went by, it was his family who raised the question of his euthanasia request…

Patients can be very frail in these moments. They walk a tightrope and it does not take much to sway them to one side or the other.

Working in a mobile palliative care team within a hospital,Footnote 4 one can find oneself at odds with a ward team. Thus, I remember advising against prescribing around-the-clock morphine to a 90-year-old patient. His daughter pleaded: ‘But Doctor, he is nearing the end of life, you cannot leave him like this!’ I replied: ‘I understand that it is hard for you to watch your dad dying. We do all we can to relieve his pain during his care, but there is no medical reason to increase morphine in between those times’. As it happened, the ward doctor had prescribed around-the-clock morphine to hasten the patient’s death; there were conflicting medical opinions. Such moments of tension are difficult; they happen a lot with mobile teams.

8.3 Explaining Euthanasia

I once heard a colleague say lightly: ‘There’s no problem with killing someone who is dying!’ This gruesome pun tragically points towards a reality where many illegal requests for euthanasia are thus conceded: when a patient says they long to die, morphine doses are progressively increased until death ensues. This reflects a tendency to impatience in the society which puts pressure on everyone: carers, family and patient; people are no longer permitted to take time to die.

The purpose of the law, however, is to help the patient who is nearing the end of life and to inform them about alternative options. Unfortunately, not all professionals have a sound knowledge neither of the law nor of the framework regulating a euthanasia request. So, in practise, procedures can be rather messy, and medical reports are not always registered according to the law.

When a patient asks me about euthanasia, I explain clearly what it is about: a request for death by appointment. I remind them that the euthanasia request is not irrevocable and that they can change their mind at any time. I try to comprehend the reasoning behind their request and reassure them that, nowadays, nearly all physical pain can be controlled, and that we will support them all along. It is extremely important that the doctor is available to discuss their concerns with a patient.

I remember an elderly woman with all her children around her. They wanted ‘something that happened gradually and peacefully’. (The gradual process of euthanasia is a contradiction in terms!). We met with the children who told us about their idea of ‘gradual peaceful death’, and we explained that euthanasia, consisting of a lethal injection after which the person dies very quickly, is all but gradual and peaceful. Appalled at such horror, the children changed their mind but, in any case, the request could not have been endorsed because the patient had not written her request down; she had only talked about it. The request came from the children who wanted to speed up the process. It is likely that, had we not been able to explain so clearly what euthanasia was, the ambiguous situation would have rendered their mother’s end of life very distressing for all involved.

Sometimes it does not take much… I am reminded of a patient who could not stand any more pain nor being a burden to everyone. I said to her: ‘I am convinced that you can think of at least three sunbeams in your day and when I come back tonight, I will expect you to tell me what has been beautiful in your life today’. She replied that I was her sunshine… And when adequate pain relief had set in, she did not ask for euthanasia again.

8.4 The Trap of ‘Integrated’ Palliative Care

Euthanasia brings an end to all support.

In France, I looked after a patient who had a deep impact on me. He was a self-made businessman, brilliant and handsome with a gorgeous wife… and had been living with cancer for 6 months. He was exceedingly angry. But feeling listened to and respected, he gradually settled down and even thanked me. This man needed to feel heard in his suffering as he experienced it. I had told him from the start that I was against euthanasia, and that boundary was very clear between us. He taught me a lesson which was very obvious with him and helps me to this day: that boundaries facilitate support.

There is an increasing pressure to integrate euthanasia within palliative care. There is a trend in hospitals to transfer patients to palliative care units when nothing more can be done to cure them, in the understanding that euthanasia is part of palliative care…. To me, euthanasia and palliative care are each other’s opposite!

The hospital’s Communication Department once sent me an invitation to a palliative care training course in which euthanasia was considered to be the ultimate care. I declined, stressing how important it was not to confuse palliative care with euthanasia.

Pressure comes from the medical staff too. In an insidious way, staff in favour of euthanasia can portray those who are against it as unkind; insinuating that leaving a patient like this without agreeing to their request for euthanasia lacks humanity. One sometimes wonders whether doctors who refuse to practise euthanasia are deemed cowards, by colleagues who have ‘the courage to perform it!’ In my book, it is not a matter of courage but of my conviction that we can support the patient in other ways, without having to kill them. The tragedy is the speed with which people become upset in these discussions. If one is looking for proof that something is unhealthy about euthanasia, the fact that people cannot discuss it calmly fits the bill!

There is a difference between causing death and letting someone die naturally. After euthanasia, there is a chilling silence in the ward, nothing like the reflective silence following a natural death, even when it has been difficult, like the death of a young person whom we have looked after for a while. The atmosphere following a natural death is different from that following euthanasia. People are upset too, but it is not the same. There is not a deliberate act to cause death.

Often carers hide behind the ‘patient’s choice’ which they consider their duty to carry out. Saying so is a way to protect themselves: ‘I am only the executor, I have no part in the decision making’.

Once I overheard: ‘Has Mrs. So and So’s treatment arrived?’ Can one consider euthanasia to be a treatment…? Worse, on the death certificate, euthanasia is recorded by ticking ‘natural death’. Is it impossible to declare euthanasia?... What a confession!

8.5 Sedation: Misunderstandings and Confusion

The Foundation against Cancer explains ‘palliative sedation is a deliberately chosen medical treatment. It consists in administering medication to reduce consciousness. If pain and discomfort in the palliative phase can no longer be controlled, it is possible—after discussion with patient and family, and only with the patient’s informed consent—to resort to palliative sedation. Palliative sedation is in no way a means to “hasten death”, its sole purpose is to relieve pain’.Footnote 5

However, a number of patients ask for terminal sedation because they see it as a gentler and more compassionate form of euthanasia! The fact that some colleagues speak about euthanasia and palliative sedation within one and the same conversation with a patient—something I choose not to do—may add to the confusion. Sedation is a way of relieving uncontrollable symptoms such as respiratory or psychological distress which do not respond to any medication. Sedation can also offer temporary respite and allow a patient to review their situation when waking up. It is imperative to use the minimal effective dose.

I have prescribed temporary sedation for a patient whose wound care was excruciating despite appropriate pain and anxiety medication.

Sedation can eventually become permanent, but only in the patient’s very last days, when all else has indeed been tried.

8.6 Palliative Care: A Hospital Paradigm

Palliative care can serve as an example. On the oncology ward, for instance, the doctor would call upon our mobile specialist palliative care team for an interdisciplinary meeting about a patient’s care: how to alleviate their pain, nausea and vomiting, etc. Even when a family asks for our advice, the ward doctor’s approval is required, which is logical.

The mobile specialist palliative care team has an advisory role: the doctor who is in charge of the patient has the last word regarding their treatment. This way of working is very encouraging as it allows us onto the wards where we can promote palliative care. The advice we give may or may not be followed, but our visit will have enabled a discussion with the doctors on the ward; a dialogue has begun. I may still be young, but whatever the ward doctor’s experience, when asked what to put in the syringe driver I say ‘It is your decision doctor, and depends on what you are aiming for. I don’t believe increasing the doses is warranted unless the patient’s condition requires it’.

Palliative care is not a new medical speciality. It is a way of thinking about patient care and it would probably be more appropriate to speak about ‘palliative culture’. Some oncologists gladly admit to an increasing need to resort to palliative care because of the advances in cancer treatment which lead to unheard-of developmental stages.

I remember a doctor who frequently called upon us to talk about a patient, aware of the need to start with palliative care as early as possible in the course of treatment. Starting in the curative phase of treatment helps with building a therapeutic alliance, and eases the transition into palliative care when curative care is no longer an option.

Another interesting aspect of working in the mobile palliative care team is that we often deal with registrars whom we can support with complex treatments. When something mentioned on a prescription surprises me, I take it upon me to challenge the registrar about their aim: ‘Why did you prescribe this? What is your goal?’ Sometimes, they reply: ‘My boss told me to do so’. This is when I remind them that it is their prerogative to take responsibility for what they write on the prescription. Often, they will comment: ‘You are right, I cannot do that…’ and change the prescription. I think this is a tremendous awakening of their conscience! Some registrars even told their boss to write their own prescription… they would not do it, and I fully endorse them! Of course, there are the others too who say it happens everywhere… I then advise to do what feels right to them. I believe it is easier for them not to think and simply do as they are told. And sometimes, I need to dot the ‘i’s and cross the ‘t’s: ‘Are you aware that we are a palliative care team, not a euthanasia team?’

8.7 Contradiction and Ambiguity

Sometimes disguised forms of euthanasia take place which bring us to a halt as powerless witnesses. There are situations which do not fall under the legal framework when morphine doses are increased until death ensues. When one looks through a patient’s medical prescriptions, their history is revealing. In situations like that, when treatments are given that are not in accordance with the principles of palliative care, I may decide to withdraw from a patient’s care.

One of the weirdest situations we can be confronted with is when a doctor asks for the palliative care team to intervene, while, at the same time, increasing the doses and inducing disguised euthanasia…

Patients’ self-determination and fear of medical paternalism are the two pillars of euthanasia, which have justified lifting the essential ban on killing. But what are we to make of a doctor who increases morphine doses without anyone asking them? Is that not an even greater form of paternalism? And why are not even the legal prescriptions applied? Some blame the long-drawn-out paperwork, but I believe it is more an unease of doing something which does not really feel right. A shifty expression I have heard a number of times to name euthanasia echoes this: ‘On to morphine-champagne!’

Thus, my advice to registrars is to look for training schools and placements where they can be taught real palliative care, where euthanasia is not on offer.

Notes

  1. 1.

    Palliative Care Units (PCU) in France are comparable to British hospice wards. Patients stay for a limited time in beds set aside for specialist palliative care and support. Priority is given to more complex and difficult situations. PCUs, like hospices, engage in a triple mission of caring, education and research. (www.sfap.org/rubrique/definition-et-organisation-des-soins-palliatifs-en-france).

  2. 2.

    In Belgium, unlike in France, naming a ‘trusted person’, i.e. a person who can speak or decide on the patient’s behalf, is not included in the hospital admission form.

  3. 3.

    In Belgium, euthanasia will not be penalised under certain conditions, in France it is still totally illegal.

  4. 4.

    Mobile palliative care teams within a hospital can be called to any of the hospital wards to advise the ward team on end of life care of a terminal patient on the ward.

  5. 5.

    www.cancer.be/aide-aux-patients/soins-palliatifs-et-fin-de-vie/la-s-dation-palliative.

Reference

  1. Baudry P, Jeudy HP. Le deuil impossible. Paris: Eshel; 2001.

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Blanchard, J. (2021). Resisting. In: Devos, T. (eds) Euthanasia: Searching for the Full Story. Springer, Cham. https://doi.org/10.1007/978-3-030-56795-8_8

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