The New Death

In Swedish politics and administration, the economy is the highest priority and the benchmark for all activities. Everything that is done must be measurable; the qualitative reality falls away when budgeting. Values ??such as national defence capability, human rights, humanity and culture are placed lower on the scale, and subordinate to the economistic social ideology. When it comes to the important decisions, the ruling layer of society finds it safer to use manipulative methods. A classic example is when the Social Democratic leadership, before the vote on nuclear power in 1981, resorted to the deeply dishonest trick with Line 2 to split the No-vote. Another is the municipalisation of school, where Goran Persson played one teachers’ association off against the other, bribed with higher teacher salaries and leaned towards the Left Party; that the youth’s standard of education would suffer was of secondary importance, for economic considerations had priority. Similarly, national defence has been left to decay, so something as important as conscription for social coherence could be easily removed and replaced with a small mercenary force destined for overseas service. Sweden is vulnerable to attack, while the only state that could possibly attack us is gearing up at an accelerated pace. Posterity’s judgement may well be harsh. In 1988, a new concept of death was legislated. We went over to declarations of death for people on brain-related grounds and no longer only classified death as when the heart and lungs ceased to function. It was stubbornly denied that the purpose of the law was to access live organs from respirator patients, but the issue was too sensitive and once again the rulers saw fit to trick and manipulate. In the initial investigation, the term ‘technically dead’I’m pretty sure this is the equivlanet term in English, where the patient continues to breathe, but has no chance of regaining any form of consciousness.I’m pretty sure this is the equivlanet term in English, where the patient continues to breathe, but has no chance of regaining any form of consciousness. was first coined, which would open the way for transplant surgery without having to abandon the traditional concept of death. But the proposal was too grotesque and had to be abandoned. The following investigation, which led to the new law, was instructed to only define the brain-death concept, scientifically and legally, without going into the transplant issue where, it was feared, unwanted protests could occur. Those came just the same, both from the grass roots of No to Brain Death and from prominent brain specialists. A leading neurosurgeon, Professor Lars Leksell, had already in the early stages of the debate, written the following: “He was comatose, was on a ventilator and was ‘brain dead’. [—] The man’s pulse was normal, his body temperature 31 degrees, his skin felt warm and his excreta systems worked. The question was then: is this man really dead? Neither my younger colleague nor I could answer yes – the life signs were too obvious. In any case, he was not really dead, and a yes response to the question, we both felt was something wrong, absurd. The soul, I did not want to speak about, but the body that was also an important part of him was fighting on. The next day he died. A quick inquiry among those who cared for the brain-damaged convinced me that many people have the same idea: the patient cannot be declared dead while the body is still alive.” (Läkartidningen, 1983, page 3,986)

Leksell has therefore advanced the diagnosis of ‘brain death’ but refuses the declaration of death of the whole person on this ground, as the current law demands of doctors (conscience should not be relied upon). The law says that a person is dead ”when she has completely and irreversibly lost all ability to combine and coordinate the functions of the body”. This is contrary to physicians’ and lay people’s conception of a brain-dead patient on a ventilator: the skin is warm and rosy, his chest heaves, and even erections can occur. Particularly offensive is when a brain-dead pregnant woman is declared dead before she, with the respirator’s help, gives birth. She has apparently been able to coordinate her bodily functions so that the child survived in her body. Has the foetus fed on a corpse? No, it’s truly absurd; a concept of death related to respiration and circulation is the only reasonable and dignified one. Again from Leksell: ”A person is not dead until she can be buried.” But what of heart transplants? This problem could also be solved by the traditional criteria of death, provided that the donor has given written expression of their agreement if he or she is suffering from brain death. If a person wants to make this beautiful gesture when they cannot be saved, then it should be only their business. One reason why we got a new definition of death is of course that there is an international trend. In the Nordic countries, it was Finland that came first; Denmark resisted the longest. This kind of citizen-level, unsolicited reform speaks volumes about the degree of technocracy in a society. What do we have next to expect from our cost-saving politicians and their experts when it comes to life, death and dying? Was it not enough that the health sector was opened to the profiteers under the pretext of freedom of choice – something which only the professionally trained can use? No, there’s more. Responsible parties have already embarked on a path that may well lead to a draft law on euthanasia along the lines of the Dutch and Belgian examples. On this minefield you advance in stages. Already permitted is what is known as ‘palliative sedation’, i.e., deep sedation of the dying to relieve pain and anxiety, but just as much to shorten the final phase. This treatment requires patient consent and the right to be woken regularly for the patient to have the opportunity to change his or her mind.

The next step is probably the legalisation of ‘physician-assisted suicide’, which the Swedish National Council on Medical Ethics (SMER) advocates and, to this end, asked the government to set up an investigation. Rather than following the Benelux nations, SMER should have embraced a few words from a British study in which euthanasia and physician-assisted suicide was rejected: ”Society’s ban on intentionally killing is the cornerstone of social relations. It is a fair protection for each of us.” Instead SMER operates through devious wordings like assistance can be given ”on the patient’s and/or medic’s initiative” or based on the patient’s ”hypothetical will” where the ability to self-determination does not exist. The proposal leaves room for abuse, to put it mildly, of the type that has already occurred in Belgium, according to a survey in 2010. Here it is clear that economic motives come into play: if hopeless cases can be quickly removed, it saves on staff and beds and palliative care and research becomes less resource intensive. Overall, an irresistible temptation for politicians and administrators, as well as not a few relatives. The terminally ill patient is exposed to social pressure to ask to die, even against their will. That SMER’s thoughts have spread can be seen in the increased number of parliamentary bills on the euthanasia issue, most certainly negative and instead focused on the expansion of palliative care; it is missing in nearly half of the country’s municipalities. And how has it gone in Holland, when in 2002 it became the first country in the world to legalise euthanasia? Els Borst, the health minister who pushed through the law, said in an interview in the Daily Mail in 2009 that the hospital care of terminal patients has strongly deteriorated since the law was introduced and therefore also the number of euthanasia cases has steadily risen. Borst’s conclusion was that the law was introduced too soon and that she regretted this. In the metropolis of Amsterdam, there are only two small hospitals available for these patients, and the euthanasia total for the whole country is around 3,000-4,000 per year, of which about 10 percent never asked to be killed. I hope that Swedish euthanasia supporters closely follow developments in their model countries, where ‘grey areas’ and hidden statistics are expected to be extensive.

I wrote in the 1970s a dystopian vision on the topic of euthanasia in an increasingly dehumanised society: The Modern Death. As already mentioned, it has gained an increasing relevance, and unfortunately it looks set to persist for the foreseeable future. The book is about how the deteriorating demographic and economic crises lead a number of urban planners and their experts to gather for a conference where, under strict secrecy, they discuss ways of dealing with the growing age pyramid. They agree that this can only be done with soft propaganda, as an appeal to solidarity and equality, in the name of democracy, so to speak. Generally, the age bar is at 75 or 80 years, no exceptions allowed. The severely disabled and others who ‘burden society’ are also included. A participant Christian priest considers it a Christian sacrifice and blesses the project, as the ‘priests’ of SMER give their support to physician-assisted suicide. Commenting on the book, Claudio Magris writes that it heralds ”death’s democracy” which means ”the death of democracy”. We are not there yet, but a utilitarian, moral, non-humanistic approach to care ethics is constantly gaining ground, driven by a social morality that subordinates human dignity to the economy. Some examples: the hospital bureaucracy in Malmö requires cuts in the quality of health care in order to stay within budget. And in Stockholm’s sick and elderly care, I have been told that the budget no longer allows a member of staff to watch the dying where relatives cannot do it; people are, then, at risk of dying alone in our health care institutions. It is pure barbarism, and I was deeply shocked. Fifty or a hundred years ago, these kinds of cuts would hardly be tolerated. The economy had not yet seized a monopoly on reality. Concern about endangered humanity is a dark thread also in the novel, The Coming Night, which I wrote some thirty years later. But it is a totally different kind of book, not documentary- or essay-like in form, but a fictional story of three men in the final stages of life, and the two nurses who care for them in a professional and, above all, warm and caring manner. In Room 5, they lie and wait, in the ”base camp” as they call it; the big adventure or extinction is near. Borje, a civil servant with a passion for gambling; the tramp, Harry; and my narrator and main protagonist, Hasse, an old operetta singer. Borje has faith, and takes Pascal’s wager on eternal life; Harry, in the next bed, pushes away his own grief and joins in his friend Borje’s pain over his cold family and wasted life. Hasse has a strategy for death that somewhat alienates him from the group. It is not so much that he does not want to talk about his illness, or be an expert in it; neither do the others. No, he isolates himself by immersion in study, which the others regard as a kind of escape; it’s that too, but an escape forwards, one might say; he confronts the enemy by reading everything he comes across on death, fiction, art books, philosophy, theology. In this way, he at once gets closeness and distance to the inevitable, making death into an object, pushing it out of his mind and placing it at a manageable distance. He gets to feel, at least for short periods, that he is stronger than the diseased body: it is the body that is sick, not him. When the pain sets in he gets morphine, which hijacks him; it is worse with the anxiety attacks, with which no reading can cope, but as the old saying goes: one can but for a moment in time glimpse the sun and death. By resisting the longest, Hasse celebrates his fleeting life, and brings light and beauty into its last days. He may also experience a last love, which is answered by an act of charitable warmth, until finally everything is over. It is obvious that I, in the story of Hasse, wanted to express a kind of reconciliation that I hope for myself. But everyone has their version of the proper farewell and follows it; so it is in Room 5. At one point, they all agree: they do not want to be coached to the end by well-meaning experts, not get their dying scheduled according to Elisabeth Kübler-Ross’ widely held doctrine, where denial and anger are followed by bargaining and depression, whereupon maturity follows in the form of acceptance and even a glimpse of hope. Kübler-Ross is an experienced psychiatrist and has plenty of fine observations that have surely helped many but, to me, it feels like her schedule is too rigid, confining rather than liberating. My experience of relatives’ dying is that they freely oscillate between these stages – and many more, for example happiness – and I think the surgeon, Sherwin Nuland, is right when he, contrary to Kübler-Ross, disagrees that many terminally ill people stubbornly deny to the last what is happening to them. Then it may not be the ‘dignified’ death that it so often talked about that one becomes suspicious. The patient may just want to live a little longer, preferably without pain, and forget dignity. Concern here seems primarily geared to protect the environment. ”Death is going on here,” they seem to say, ”It’s the law of nature, why mess with it and defy?” Another dubious phrase is: ”Death’s a part of life.” Poor consolation, when the reality is non-life and end of the world for a unique creature that will never be born again. It is the end of the story for us who do not have access to ‘cosmic consciousness’ and ‘metaphysical wholeness’, and other old-school spiritualities to which Kübler-Ross refers in her lectures. Bishop Lennart Koskinen recommends her warmly to anyone who works in terminal care.

Finally, a small comment on Annina Rabe’s interesting chronicle recently (SvD 6/11), in which she argues that there is a standard view that we repress death, that we do not want to talk about it. ”It makes me feel so tired every time I hear it. [—] I have no recollection of ever meeting someone who has shied away from talking about death.” I think she is right that the taboo has begun to fade, but surely one usually has to bring up the subject oneself if there is to be a conversation about it. But that does not help, as far as I can tell through my experience of lectures and readings from my two books with death in the centre (the latter of which is also largely about life). The audience has always been attentive and interested, but there have not been many questions and opinions and rarely any discussion. Faced with people you do not know, the taboo is probably still quite prevalent. And why not, the reason is more natural than conventional. On a deeply personal and existential subject, it feels easier to go into deep, confidential conversation in a small circle of friends and relatives.