Illness causes death
Dying and death in the face of social change
Dying, death and mourning in modern societies are subject to profound social, professional and cultural-religious change. The normatively ritualized, collective dealings of people with death have given way to individual, subjectivised forms in the course of the secularization and differentiation of societies. In the late modern era, social ideas of a “successful” or “good” dying are diverse.
The article describes this change in the following seven theses: 1. We live longer and we die longer. 2. We tend not to die suddenly and unexpectedly, but slowly and predictably. 3. Although we live longer on earth and biologically, our life has become shorter for an eternity. 4. We no longer die on the stage of ritual, family-neighborly relationships, but behind the scenes of organizations. 5. We live and die in an organizational society and we have to organize how we deal with death. 6. Living and dying are not a large publicly owned company, but a small, privately owned company. 7. The hospice movement and palliative medicine have provided social thematic and communication services and changed the options for dying.
Care at the end of life requires new approaches in late modernity, which are supported by personal responsibility, shared responsibility and a mutual care of professional-institutional and civic-voluntary care. A paradigm shift towards communalized care is emerging. This makes “dying” a topic in the discussion about the future of public health and social solidarity.
Dying and death in modern societies are subject to profound social, professional and cultural-religious changes. Secularization and a stronger differentiation of societies have led to a change in the way humans handle the dying process. Normatively ritualized collective behavior has been replaced by an individual, subjectivized approach. In late modern societies there are many different views of what “successful” or “good” dying means.
In the article this change is described by the following seven theses: 1. We live longer and we die longer. 2. We no longer die suddenly and unexpectedly but slowly and foreseeably. 3. Even though our biological life on earth has become longer, our life has been shortened by the loss of eternity. 4. We no longer die on the stage of ritualized relationships with our family and neighbors but behind the curtains of organizations. 5. We live and die in a society of organizations and have to get organized for the final phase of our life. 6. Living and dying are no large, state-owned enterprises but small, private enterprises. 7. The hospice movement as well as palliative medicine have created public awareness, made dying a matter of discussion and offered a new set of options.
In late modernism end-of-life care requires new approaches based on individual and shared responsibility as well as cooperation between professional institutions and community-based voluntary care.
A change towards community care is visible. Thus “dying” is a topic in the discussion about the future of public health and societal solidarity.
Modern death has nothing that gives it transcendence or relates to other values. (...) In a world of facts, death is just one more fact. But since it is an unpleasant fact, (...) the 'philosophy of progress' (...) tries to conjure up its existence .
The Mexican world literary writer Octavio Paz paints the picture of a modern, enlightened and scientifically oriented world in which transcendent references - even when dying - and death, as a slowing down "industrial accident" of everyday life, no longer find a place. In response to the massive, collectively traumatic violence and everyday presence of death in the Middle Ages, the effort to fight disease and dying represents or overcoming is one of the central drivers of modern societies [2, 3, 20]. The social “shaping of death” is increasingly becoming the responsibility of professions and organizations. Dying today is therefore boldly described as institutionalization , “medicalization”  and “de-socialization” .
Normative Christian orientations are melting away in the course of differentiated, plural societies. The ideas of a “successful” or “good” dying are largely individualized . The woodcut-like assertion that death is taboo cannot be upheld. Rather, Nassehi and Saake see a “loquacity of death” , since the fire of the public discourse on dying and death is repeatedly fanned by parliamentary and multimedia means. The Thanatosociologist Tony Walter also points out that we cannot speak of a social death taboo, but that different motives and forms of “death repression” shape the way we deal with dying and death today: a) The Death denial as part of the human condition, in order to enable societal and social capacity to act at all. b) The Relocation of death into old age, as a result of which social awareness of death, coupled with the marginalization of the elderly and weak, decreases. c) That limited taboo of death in organizations of the health system, where in hospitals, for example, death is suppressed as a place of dying, structurally faded out, controlled and "administered" with medical technology. d) Im Framework approach the reference to the fact that dealing with dying and death is socially diverse and depends to a large extent on contextual and cultural framework conditions. And finally e) the finding of a Dissolution of the taboo through civil society movements that demand a more open, everyday integrated, solidarity approach to dying and death .
In recent decades, civil society movements such as the hospice movement and the AIDS movement have contributed significantly to the removal of the taboo on death and a paradigmatic change in the care culture at the end of life .
Social dealings with dying and death are therefore subject to profound social, professional and cultural-religious change. Their (sub) cultural, heterogeneous manifestations naturally prohibit generally valid ascriptions and descriptions for “society”, which does not exist in this homogeneity. There are major differences between modern societies per se and between culturally, religiously, socio-economic and lifeworldly diverse social groups.
Our contribution does not represent an attempt to propose a “new” thanato-sociological “historiography” and systematization. In the German-speaking area there is already well-founded basic work on this [10, 11]. Rather, the aim of the following is to describe the dominant developments in Central European societies in a pointed, thesis-like form. Knowing about their limits and controversy, the theses should also encourage contradiction and discussion. Looking ahead, the promotion of a philosophy of communalized care is discussed.
We live longer and we die longer
Today the so-called "diseases of civilization" or "chronic degenerative vascular diseases" dominate in our latitudes; Over 70% of all deaths are due to cardiovascular diseases, cancer, lung diseases and skeletal changes . The course of the disease changes and brings with it specific needs for care . Today we are faced with the challenge of having to cope with old age and the long, slow, drawn out dying. It is not death as such and the fact of having to die that deal with the circumstances, the “how” of dying and the ascription of dying and death itself, of having to autonomously shape it.
We tend not to die suddenly and unexpectedly, but slowly and predictably
Our ancestors feared "sudden death". Her fear became concrete in standing prayers. "Keep us from sudden death, O Lord." The feeling of life and time in “Christian societies” was determined from the hereafter. To get there it took peace with God, reconciliation with mankind, and good immediate preparation for death in the hour of dying.
It was important, for example, to receive the viaticum, communion, as food for the journey, to be prepared for death through prayers, blessings, rituals and anointing (“last unction”). It was considered a bad sign when the dying could not receive the "means of grace", for example from the Roman Catholic Church, so they did not have a "good hour of death". The social staging of a good dying suggested that the dying had a certain calm and calm shortly before death. This attitude was seen as a sign of his faithful trust. This Christian ideal changed in the course of secularization towards the desire for a quick, pain and suffering-free death .
In earlier societies, average life expectancy was rather short for most, a few decades as a rule. At any moment one could be "overtaken" by death. In this respect, it was important to spend the threatened life profitably (“carpe diem”, “tempus fugit” - use the day, time rushes by). Everyday life was a tough struggle for survival. Illnesses were literally life threatening. In an archaic understanding, they were long considered a punishment from God. “Protect us from disease, hunger, plague and war, O Lord.” These scourges of humanity struck mercilessly. Death was natural, an everyday experience. One was not surprised when “Schnitter Tod” was on the doorstep . Today the rather long and slow death in societies of long life is not free of ambivalence. The key terms of dying correspond to the self-image of modernity: autonomous and self-determined, individual and worthy, short and painless.
Although we live longer on earth and biologically, our life has become shorter for an eternity
We live longer biologically, but our lifetime has become an eternity shorter . For our ancestors two or three hundred years ago, life usually consisted of a short life on this side and an eternal life on the other side. One had to prepare for the afterlife, the sky. The entire existence orientation resulted from a naturally assumed belief in a continued life in the sense of the Christian resurrection belief or the fear of eternal damnation. What did a few decades of earthly misery mean in the face of the prospect of God's heavenly glory? Wasn't it easier to endure burdens and sufferings, even the pains of life, with a view of the hereafter, the “heavenly view”? Death was not a final separation. The deceased lived on. After all, people believed in the “fellowship of the living and the dead”.
Dying and dealing with the dying was primarily a religious task, not a social one. An ars moriendi (the art of dying), the ability and willingness of people to deal with certain imminent and imminent death, have their justification here. After all, they arise at the time of the massive deaths of plague sufferers. The people fled from a panic of being infected themselves. The social relationships broke up. The soil of all social reliability had been broken open like an earthquake. In a cycle of short stories, "Il Decamerone", the Italian poet and humanist Boccacio (1313–1375) describes the reactions to the plague in Florence in 1348:
We want to keep quiet about the fact that one fellow citizen avoided the other, that the neighbor almost never looks after the neighbor and the relatives rarely or never visit one another; but this misery had filled the breasts of men and women with such horror that one brother abandoned the other, the uncle the nephew, the sister the brother and often the woman the man, yes, which is the most terrible and hardly seems credible: father and mother refused to visit and care for their children as if they were not theirs .
The genre of the dances of death made reality and the horror of death public in sequences of scenes. The messages on the walls of the monasteries and ossuary of the Middle Ages were easy to read. Death does not invite you to dance, it does not politely or politely invite you to do so. Death forcibly compels all members of the society of that time into its dance; all classes, all genders, no age is safe from him. Death takes them all: the Pope and the Emperor, the knights, merchants, craftsmen, the money changers, thieves and beggars, yes, even the children. Such image sequences of the dance of death are reminiscent of the terrible, painful years of the plague disasters in Europe. A traumatization that has engraved itself deeply in the collective memory. Even today, expressions like “air pollution”, “it stinks like the plague”, “hate something or fear someone like the plague”, or “someone's misfortune resp. wish the plague on your neck ”, pointed out.
Above all, the plague epidemics promoted two fundamental experiences in our ancestors' understanding of life and the world: social life collapsed, and with it the important rituals of dying and burial also dissolved. They marked the boundary between the living and the dead. In a very short time, the rituals that create confidence and open the hereafter could no longer be practiced. Too many people died too quickly. In the 14th century, mass burials and mass graves became necessary, as Giovanni Boccaccio reports.
Since the consecrated ground was not enough for the large number of corpses (...), (...) instead of the church sacred fields, (...) very deep pits were made and the newcomers threw hundreds into them. Here the corpses were piled up like goods in a ship .
The profound collective dissolution of social relationships, the disturbance and paralysis of people in the face of massive epidemic deaths, is understandable. Just imagine that in a city hit by the plague, as a rule, every second resident died of the plague, that in this period around 30% of the European population fell victim to the plague [18, 19]. Severe plague outbreaks with a mortality rate of over 40% were repeated up to the 18th century and affected many generations even after the 14th century . These collective existential experiences of loss and death helped to prepare the ground for modernity:
Seen in this way, the emergence of modernity can be interpreted as a collective psychological reaction to traumatic death experiences, as an attempt to get to the bottom of the origin of illness, death and natural disasters beyond metaphysics and religion .
The idea that life in a form of existence that is oriented towards the hereafter is presented and organized differently, has stability and substance, has characterized the attitude towards life of our ancestors and their abilities to deal with borderline experiences for centuries. Life here and now is relative. Eternity is absolute.
This belief in a continuity of life in the presence of God in the “choir of saints” is no longer shared by the majority in Europe today. The ideas of what will happen afterwards and whether there is “something” at all have changed, differentiated and pluralized. Different images, ideas about the hereafter, and reincarnation philosophies exist and each have a different influence on the individual way of life and the view of dying and death .
We no longer die on the stage of ritual, family-neighborly relationships, but behind the scenes of organizations
Up until the middle of the last century, dying was more of a public-social event . The livelihood and future of all people in the house and yard were affected. Ritual stabilization was the order of the day. You knew what to do. Tasks and roles were assigned and performed.
In the childhood experiences of a Tiziano Terzani this calm, safety-giving, ritual approach to death and the dead is considered:
(...) not as something incomprehensible, but sacred, mysterious, awe inspiring, in the face of which one stood on tiptoe, lowered one's voice. I remembered the dying man in bed, the whispering relatives in the living room, and then the wake around the deceased. There lay the corpse, and everyone looked at it with amazement and approval. Death was present. (...) Today exactly the opposite is happening. Death unsettles and should be hidden.And so you send the terminally ill to the hospital to die there behind a curtain, tied motionless to the bed by all the hoses and devices to which he is connected, surrounded by aggressive noises and smells, strange faces - already in the afterlife while he is is actually still in this world .
The social changes take place in a peculiar simultaneity of the non-simultaneous, at home differently than in the hospital or rehabilitation organizations. In his novel Der Zauberberg, which takes place in a Swiss sanatorium and was completed in 1924, Thomas Mann described this discrete displacement of the dead behind the scenes from a healing-oriented sanatorium mood:
"What I wanted to ask you (...) have there been many deaths since you got up here?" "Several for sure," replied Joachim. “But they are treated discreetly, you understand, one does not find out about them or only occasionally, later, it happens in the strictest secret when someone dies (...) If someone dies next to you, you do not even notice. And the coffin is brought early in the morning when you are still sleeping, and the person in question is only picked up at such times, for example during dinner. (...) So something like this is going on behind the scenes ”.
The metaphor “behind the scenes” of organizations takes on a reality of dealing with dying and the dead. Where is the way going? How should one react to the confrontation with the dying, the dead? How can the right words be found after death that go beyond a stuttered "heartfelt condolences"? How do you even get in touch with the mourners, how with the dead? The sociologist Nobert Elias attributes this increased uncertainty to it, that many socially prescribed formulas carry the aura of past systems of rule with them.
(...) they can no longer be used mechanically. (...) at the same time, the change in civilization (...) creates a considerable shyness in many people and often enough an inability to express strong emotions, be it in public or in private life. (...) In the presence of the dying - including those in mourning - a dilemma that is characteristic of the current stage of the civilization process is revealed with particular sharpness. A surge in informalizationFootnote 1 In the course of this process, a whole series of conventional behavioral routines, including the use of ritual phrases, has become suspicious and in some cases embarrassing for many people in the great crisis situations of human life. The task of finding the right word and the right gesture falls so (…)back to the individual .
We live and die in an organizational society and we have to organize how we deal with death.
In just a few decades, deep rifts and shifts in dealing with dying have opened up. The individual ability, security and readiness to deal with the fractures and crises of human life are required to a greater extent. Organizations determine life and death. Our society today is an organized society, an organizing society. We are born and raised in organizations and we spend our work and leisure time in them. Many of us will die in organizations .
Important processes and all of social life take place in and through organizations. In modern societies we are dependent on the efficiency, functionality and self-development of organizations. The high organizational character of social life helps to take up and work on upcoming questions and problems. The majority of us die in organizations, in hospitals and nursing homes. International comparisons show that the degree of institutionalization of dying continues to increase, and thus dying at home continues to decrease [28, 29].
In terms of organizational history, “the hospice” is a remarkable innovation; a form of organization in which dying does not have to be fought, is seen as an industrial accident or mishap, but rather as part of human life. Only through this organizational goal is it possible to enable conditions for a good, humane, individualized death. It becomes understandable that today's hospital, with the organizational goals of recovery, rehabilitation and maximum life extension, has difficulties as an organization with dying. It is a result of modern medicine and the social expectations of it that we are no longer allowed to die, or that we are dying more and more harder. The possibilities of intervention in medicine have expanded the spectrum of action pharmacologically and technologically, surgically and in intensive medicine. Death is postponed, life is apparently extended at will. Rainer Maria Rilke anticipated this development in his Notes by Malte Laurids Brigge, first published in Leipzig in 1910. One dies “factory-like” the death who is “employed at the institution” .
This observation anticipates modern hospital and organizational history in an almost breathtaking way. This connection between logic, organizational dynamics, the “ticking of an organization” and the way in which people “die” in it remains the big issue of the 21st century. In terms of social history, Günther Anders described this cultural change from the individual idea of one's own dying and the collective production of death:
In the age of making, there mustn't be any unmade events, at least none that are unusable or at least not integrated into a production event. (...) But it is no exaggeration to claim that fewer and fewer of us simply die of tiredness or old age. Simple deaths are already an ancient rarity. Mostly death is made. Is dying .
To put it in a nutshell: It is not death that takes us, but we take death.
Living and dying are not a large publicly owned company, but a small, privately owned company
In today's pluralistic societies, the how to live and die is no longer prescribed. You have to write the story of your life and death yourself. Citizens are expected to make their own decisions, to choose how to live, love, work, travel, die and be buried. Not only the life story has to be developed, “written” and recorded. We are forced to “dispose” of the dramaturgy of our growing old and dying, to choose the place and how to die and ultimately to take precautionary measures via the mode of care (maximum therapy versus minimum therapy, curative versus palliative, etc.).
Modern man not only has possibilities as freedoms, he is forced to choose . He can not only choose, he must shape his life and death, see it as a project . How can I die in peace? What are the options? In the nursing home? In the hospital? Then in the hospice? At home? Elsewhere? With the help of others? By your own hand? Slow or Accelerated?
In this “multi-option dilemma of dying” there is a compulsion to shape. At least in its wake the expectation arises to "make" a good death.
Tony Walter sees this “subjectification of death” as one of the characteristics of neo- or late-modern death. From this problematizing diagnosis he at the same time derives the hope of promoting or rediscovering a changed, relationship and community-oriented approach to dying .
The hospice movement and palliative medicine have provided social thematic and communication services and changed the options for dying
The hospice movement in Germany has been advocating individual and dignified dying for more than 30 years . Through their thematization work it was possible to put dying, death and mourning as topics on the agendas of society and to initiate and enable a qualitatively different public discourse. “Hospice” as a kind of human rights movement stands up for the dignity and appreciation of vulnerable people in the last phase of life and forms a counter-movement against the inhumanity of dying and its acceleration (euthanasia). It stands up against the humiliation of the dying and their caregivers in society and its organizations . The aim of hospice work, not to release the dying from the solidarity of society, is a social mandate. The hospice and palliative care facilities are also nodes in supportive, caring local and regional care networks.
Cicely Saunders' “discovery” of comprehensive suffering and pain (“total pain”) has meanwhile established itself and in the WHO definition of palliative care has developed practically worldwide normative character. Accordingly, people are to be treated in their bio-psychosocial and spiritual entirety and accompanied to the end. This multidimensionality of anthropology requires an interdisciplinary and multi-professionalism in practice and theory (teamwork, mutual cooperation of professional and civil society engagements).
Conclusion and outlook
The way society deals with dying, death and mourning has changed significantly in the last few centuries. From normatively ritualized, collective interactions to individual, subjectivized forms of planning one's own death, of having to shape it in a multi-optional, differentiated society. Dying is socially organized in organizations of the social and health system. Hospice work and palliative medicine are becoming increasingly important to enable people to die in dignity.
Internationally, a discussion about a “new care culture at the end of life” [37–39, 45], a communalized care, has begun in the last decade. This makes it clear that the individual at the end of their life must be seen in their social context (“care unit”). It also focuses on the social and political framework and living conditions of dying . On the one hand, this poses the question of the social distribution and assumption of custody responsibility , and on the other hand, the question of the societal possibilities to trust in one's own socially supported dealings with illness, dying, death and grief in a subsidiary worries network stabilize . The public health and health promotion perspective in palliative care is thus becoming more and more important .
The need for care at the end of life requires these new approaches, which are characterized by self-responsibility, shared responsibility and a coexistence of professional-institutional and civic-voluntary care. Internationally, the images of the future condense in terms such as “caring communities” , “compassionate cities” , caring or compassionate communities .
This philosophy of communalized care is based on the endeavor to see the dying and their caregivers in the context of a comprehensive care. This makes “dying” a topic in the discussion about the future of public health and social solidarity.
conclusion for practice
The professions and organizations involved in end-of-life care have to meet new requirements. The good design and coordination of local and regional worry networks will be central for nursing homes, hospitals, hospice and palliative services and the resident sector. The interaction with professional partners is just as important as that with caregivers and civic volunteers. In addition to the acute and / or palliative care of those affected, preventive, health-promoting aspects come much more to the fore, even when they are dying. Openness of the institutions and the “building” of diverse bridges into the communities, the quarters and the neighborhoods will be necessary for this. The political framework that enables and promotes such developments is only just being crafted. Ultimately, this requires fundamental changes in the social and health policy architecture, cross-sectoral and social space-oriented organization and financing of care.
Informalization = dissolution of strict rules of conduct, with the result of greater freedom, but also greater insecurity.
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