Euthanasia: Searching for the Full Story: Experiences and Insights of Belgian Doctors and Nurses would be a bargain at any price, but it is free to download from the website of Springer, the publisher of many medical journals.
Euthanasia, though legal in Belgium, is opposed by some healthcare professionals. This collection of essays contains insights and thought-provoking stories from the authors’ professional experience.
The authors are ten Belgian health care professionals, nurses, university professors and doctors specializing in palliative care and ethicists who fear that euthanasia has become normalised and trivial.
Far from being polemical, the perspectives in this book present another side to the narrative of patient autonomy. As Margaret Somerville, an Australian bioethicist and Wes Ely, an American critical care specialist, observe in their forward, there is a dearth of literature about the societal ramifications of legalising euthanasia. They write that: “The case against euthanasia is much more difficult to promote, not because it is weak—it is not—but because it is much more complex. This case requires looking not just to the present but also to our ‘collective human memory’—that is, history—for lessons from the past and to our ‘collective human imagination’ to try to anticipate the full and wider consequences of legalizing euthanasia.”
The following is a selection of reminiscences by François Trufin, a hospital emergency nurse in Belgium.
Euthanasia, a stage in accepting one’s illness
A request for euthanasia is not the end of the road. We need to look at it as a new phase, among the other stages of grief, on the way to acceptance. At the end of this process, we hope that the person, with the help of the palliative care team, will be able to die a natural death, having lived their life to the full till the end. A patient who requests euthanasia is usually in the thralls of dread: fear of suffering, of dying, of being a burden… Euthanising them in that distress deprives them of the time to ease their worries and find answers to their questions. Furthermore, it confirms a failure and denies them the hope to overcome it.
The health professional who is aware of this possible care pathway will no longer feel apprehensive around a patient requesting euthanasia; they will take them by the hand and walk alongside them to the end of the road.
[Once] a patient arrived in our department accompanied by her husband. She was about 50 and had so far been living at home, taking 32 medications a day. Convinced that she was a burden to her husband and her two children, she repeated day in day out: ‘Let me go, I want to die, please don’t give me any more medication’.
She attempted suicide four times. On the fourth attempt, she pushed herself down the staircase in her wheelchair. Her husband, who loved her deeply, was totally overcome. He was devastated at the thought that he could not prevent her throwing herself down the staircase. To the GP it was clear that she wanted to die and he referred her to the hospital for euthanasia.
When she came in her husband shouted: ‘Don’t let anyone get in our way, she is to be euthanised’. The team started to panic. I went to see the patient and we had a 4-hour conversation with husband and wife. We argued and as I was not agreeing to go ahead with euthanasia, he wanted to take his wife back home and have her referred elsewhere.
I told him: ‘The choice is up to you, but right now, your wife cannot be transported; any movement is extremely painful and we need to take care of her pain first. I guarantee you we will do all we can to make her comfortable. When she is, you can still decide whether you want her to be transferred in order to be euthanised’. Thus, the situation calmed down, the husband decided to leave his wife in our department and we worked together.
Seeing how, with the combined use of painkillers and controlled sedation, his wife rested peacefully in bed, he became convinced that palliative care was effective. A very tactile man, he appreciated the massages with essential oils we gave his wife. We encouraged him to bring the CDs they listened to together.
The two children, both young adults, followed suit, even though they were ill at ease at the start. They feared they might betray their mother’s resolve who had been adamant from the start that she wanted euthanasia. We reassured them saying that she was receiving no more medical treatment and we did nothing to prolong her life, only to make her comfortable.
This lady died peacefully in her husband’s arms, listening to the music they had played at their wedding. After a week, her husband came back, asking to see me. He thanked me with a box of chocolates… and asked whether I could keep a place for him in our palliative care ward when his time came!
The sad thing is that it took 32 medications and four suicide attempts for this woman to be heard and cared for, rather than be the object of therapeutic obstinacy.
Euthanasia as a wake-up call from indifference
During the Christmas holiday, a 75-year-old lady, whose convalescence after hip surgery was difficult, suffered several falls at home. Feeling relatively well but no longer able to live alone, she was placed in a nursing home—which happened to be cruelly understaffed—by her overworked children.
In the home for a whole month, she witnessed people being left in bed—even for meals—three or four days running during long weekends, for instance, when the staff was reduced. Sometimes residents’ cry for help to go to the bathroom would go unnoticed, and the like.
Fearing she might end up in a similar situation, she preferred to end her life right away. She stated her wish to the GP, completed the documents in due form, and was given the all clear to be euthanised. The nursing home sent her to the hospital.
Since she was not imminently dying, there needed to be, by law, a month’s delay between acceptance of the request and the actual euthanasia. During this time, she was cared for by our palliative care team, even though her condition did not warrant it. The psychologist saw her regularly.
When I overheard the following sentence, it rang like thunder to my ears: ‘Did you notice? I had to request euthanasia for people to start taking an interest in me’. Indeed, she had several visits a day, received proper care, saw the psychologist, some people would bring chocolates… Even people from the nursing home came to visit the star she had become. And this all came about after she had volunteered for ‘death’s corridor’. It was a very unhealthy situation where it appeared that requesting euthanasia became an ‘open sesame’ to receiving proper care and support.
That patient caused a professional electroshock for me! She made me realise how important those moments at a patient’s bedside are, when we give them our time to talk or even play cards, and simply to be human. Her experience spurred me to call together a group of volunteers who give of their time to go and sit at a patient’s bedside. It also taught me that, whether a euthanasia request comes from the patient or a family member, it is worth checking whether they want to test the medical world. I have been positively surprised to realise that when we say calmly: ‘No, we do not practise euthanasia, but we have something better to offer you’, people are willing to listen. And when we explain that pain will be relieved and that their quality of life is our main concern, the euthanasia request quickly fades away. Relief from pain and being treated as a human being is what most patients and families long for.
When trust meets professional integrity
But I do not despair. Even if today many are trained for euthanasia, believing it to be a part of patient care, I am convinced that there will always be enough people to look reality in the eye and not run away from life’s tragedy. And I hope that they may discover by themselves what I was brought to understand.
One day I was travelling home after having dealt with a particularly difficult situation. I was in total turmoil, at the end of my tether . Driving home from the hospital takes me about half an hour, across beautiful scenery. That evening, the sun was highlighting the autumnal colours, and suddenly it dawned on me: ‘Fortunately nature does not react like us humans… What if the leaves said at the end of the summer: “I want to die. Soon, there will be no more tree sap, so better end my life right away”. If this were the case, we would miss out on the autumnal beauty. As early as July many still green leaves would litter the ground and there would be none left to display their colours in fall.
The richness of autumn lies in the time leaves take to let the vital juice dry out and die. In spring and even more in summer, all the leaves are green, but in fall an extraordinary variety of colours is displayed.
Similarly, a human being in the twilight of life lets go of their masks and reveals their true self. In everyday life, running after time, we all have green leaves and, sometimes, it is not until the end of our lives that we realise that, beneath the green, there is a wide array of warm and exquisite colours.
Palliative care is the autumn of our life; it is the time the leaf takes to gradually detach from the tree. Even though the sun is not always shining and there are difficult times of heavy showers and wind storms, the leaf holds on to the tree with all the colours it has left. Could we imagine a year with three seasons only? Could we go from 35 °C in summer to -10 °C winter without any period of transition? No!… However, that is what happens with euthanasia’.
I have met all sorts of people during my career, from the humblest to those who are used to being in the limelight. For each and all of them, masks come down at the end of life. No doubt this is very difficult for the person, but it is also very beautiful to watch. They reveal their deep inner self and remind us that they are unique and irreplaceable. We see a person readying themselves to leave this life. For sure, their body is often falling to pieces, and their mind is slowed down, but what is being said, what is being experienced, is of a beauty and intensity that remind me of the autumn leaves…