Learning to live and die. By Stephan Sigrist & Hlin Helga Gudlaugsdóttir

Beyond Finite

Up to now, however, those of us in the Western world have rarely considered the matter of dying. The focus of our attention and that of the health market has been on life and ways to prolong it. To a large extent, death is marginalised and tabooed. Sick people, let alone the dying, are not part of public or private life in a society that targets vitality. Modern medicine focuses its investments on improving health and creating an even longer, more active and enjoy- able life. No place remains for reflections on death.

As a consequence, finiteness is not examined in pub- lic debate but in fiction: in films or books we confront our- selves daily, in some cases almost excessively, with dying. No detective film is complete without a corpse, Hollywood produces box-office hits that prophesy the end of humanity. We simulate all kinds of merely conceivable death, but experience it only fictionally and very rarely in reality.

The dehumanisation of dying

This alienation of dying is also reflected in practice: not only is death excluded from everyday life and public de- bate, the seriously ill and dying are generally cared for outside the social centres: in nursing homes and hospices, away from relatives, kept alive by technical equipment in often anonymous rooms. Many patients are confronted with difficult medical and ethical questions that they can- not answer alone due to the ever increasing complexity. There are exceptions such as the Maggie’s Centres in the UK where the central focus is on providing holistic care and giving cancer patients and their relatives clear information, or some private hospitals in France, which use light installations by designer Matthew LeHanneur in their palliative centres to create an atmosphere of dignity. However, these are exceptions.

This opens up a central paradox in the affluent society, where health and individual well-being are considered to be the highest good, but the patient fades into the back- ground. While it seems acceptable to exclude the “human factor” when performing surgery or taking X-rays, an increasing disparity yawns for the health system and society in the way they handle in the future. Because quality of care in the final stage of life does not primarily mean technical support, but above all humaneness and personalised emotional care. This “dehumanisation” of the care struc- tures is likely to become more extreme in the future in view of the aging society, increasing shortage of resources and the dominant focus on a mechanistic, biomedical healthcare model. On top of this, as religions decline in importance for large sections of society, we are left with no cultural rituals to accompany a person into death. The Bible is virtually powerless to supply answers and give comfort. So far, there are no new guidelines to help us handle dying and death better. We fight against death with all our might; passing away is then regarded as a fail- ure and takes place in a vacuum.   

Digital Immortality

While we have been trying for centuries to escape death in the physical world, humanity’s perhaps oldest dream has already become reality in the digital world: immortality. There is no transience in the binary world of the Internet. Information, bits and bytes have no half-life, show no signs of aging. The Internet doesn’t forget and is well known for not surrendering posted messages, to the end of our lives and beyond.   

However appealing this digital immortality may appear at first sight, the ensuing challenges are highly demanding. Most of today’s Internet fans are unaware that casually posted messages or images will become part of our virtual legacy. It is also unclear how we should handle social net- works. Their profiles are becoming more and more intelli- gent and in the future they will act as a kind of “digital dop- pelgänger”, making friend requests and posting messages independently. Against this background we need to be clear about what will happen to our posts and user profiles when we die. Will the profile remain alive? Will it become a memorial? Or should it be deleted? And who will decide?

If these questions are not answered, profiles will re- main active and automatically sends requests for status up- dates even if the owner is deceased. Macabre, but already reality. In 40 or 50 years, we may face the problem of mil- lions of orphaned profiles, still online – and searching for friends or updates. When you perform a search, it will not be apparent whether the person on the web is still alive or long dead.

Against this background, groups and NGOs are currently forming in the USA and campaigning for fami- lies to have control of digital profiles when a relative dies. Facebook has so far even successfully warded off initia- tives intended to help users to quit the digital world. A program by Dutch designers, “Web 2.0 Digital Suicide Machine”, which deleted all entries on Facebook, Twit- ter, LinkedIn etc. at the request of the profile’s owner, was ultimately brought to its knees1. By 2010, the pro- gram had assisted at more than 1000 virtual suicides, ter- minating 80,500 friendships and eliminating 276,000 Twitter feeds in the process.

1 suicidemachine.org/download/Web_2.0_Suicide_Machine.pdf  

So while we want to fend off death in real life, avoid con- frontation with it, and are often unable to experience the end of life as we want to, in digital life we are faced with the problem of immortality and of having to decide what part of us should remain alive and what we should actively kill off.

Rethinking the end

In the light of the dual challenge of death, it looks as though we would need to re-learn dying in both the real and the digital world. To do so, we have to encourage de- bate on the handling of death and determine collectively what quality of life means to us and when we are ready to take our leave. At the same time, ways have to be found to deal with the intransience of our digital history and de- cide more easily what part of us should remain and what should not.

The result will be a higher quality of life, perhaps even contentment to the end of our days. But not just that. Ac- tive reflection on death would also lead to more efficient use of resources in the healthcare system and as a result stem the high costs of our final months. In addition, cater- ing for our final life phase may be one of the biggest growth markets, very underdeveloped at present com- pared to therapies and health promotion, with offerings that could range from holistic medical care to such tech- nologies as intelligent homes and robot nurses. To this ex- tent, there are a number of reasons why we should rethink dying, and therefore living as well, and adjust structures and values accordingly. Here are five areas for action:   

1. create awareness – recognise the things that really count. At the heart of the issues relating to the future of dying is an analysis of ourselves – of the fact of our finite nature. This is about deciding early on what is important to us in life, identifying what is worth the expenditure of time, money and energy. Thinking about our digital selves may help us to make real-life decisions, because it strengthens our awareness that we will leave something behind and that ultimately it is up to us to decide what it will be. Knowing what we want in the last phase of life also ulti- mately facilitates an end of life care that suits us and those around us.

2. reshape the environment for the final life phase – think beyond medicine. Redesigning dying demands an environment that focuses on man and not medicine – from the design of rooms to the manner of care. Creating a human-centred environ- ment requires a different logic from that of an efficiency- oriented hospital. The things that improve quality when surgical intervention is optimised do not automatically apply to the provision of end-of-life care. The prerequi- site for such an environment is to enable a personal struc- ture, and shift the focus of nursing from physical to emo- tional care, building on the hospice philosophy of holistic care. On the one hand this takes time, and on the other it demands service offerings that encourage social and intel- lectual interaction – both at the patient’s bed and on the Internet. Reshaping the environment may also be about rethinking the place of death. When asked, most people would prefer to die at home, whilst most people today die in institutions. 2 Making dying more humane does not mean reinventing existing structures from scratch, but it does mean aligning them with the needs and well-being of the individual against a background of scant resources.

2 www.ncpc.org.uk/sites/default/files/NCPC_Future_Forum_ Evidence_May_2011.pdf   

The specific implications have to be adapted on a case-by- case basis and demand learning structures that will devel- op on an ongoing basis.

3. carry the end of life into the everyday – promote an exchange between the living and the dying. To a large extent, the exclusion of age, sickness and death is a consequence of the design of our everyday lives, in which old people rarely meet the active working genera- tion or children. One prerequisite for creating more awareness and understanding is concepts that promote encounters between different generations. This includes the construction of housing developments intended for both young and old people to live in, possibly also share the infrastructure and offer mutual support: old people will help young families with child care, in return they will help their elders with their household management. Business will also play a key role in promoting the interac- tion of the generations. By employing older people – pos- sibly on a part-time basis and at reduced salaries – compa- nies could go on benefiting from highly experienced staff and at the same time contribute towards a sustainable ag- ing culture.

4. develop a new culture of leave-taking – communicate security. In the individualistic society, we have opened up infinite possibilities for shaping our lives – and also our deaths. For example, reports on trends in the market for death of- ten feature amusing coffins in Harley Davidson style or blazoned with soccer club logos. However, this freedom also entails insecurity because more and more people no longer have rules to abide by. As a consequence, solidari- ty in society is lost. The religious rites that performed this function for many years and also created a social category have lost their validity for most people. Accordingly, we have to think about new rituals, values or protocols that enable individuality on the one hand and are tailored to to- day’s society, but at the same time create security in the broader context and help both the dying and those who are left behind, provide comfort and supply answers.

5. Take responsibility – saying goodbye is not a one-way process. Essentially, however, the end of life is not about process- es, structures or design, but about people. The responsi- bility for ensuring that a person receives the care he or she needs and wants when facing death cannot be delegated to institutions, it rests with relatives and friends. That means that we all have to accept a readiness to think about our own fate even in the active part of our lives. Ultimate- ly, personal care can only be undertaken by a person. The individualisation of products and services and the design of agile processes are mandatory for more humane dying. At the heart of it, however, is the connection between people and structures that make this possible for relatives and carers. And above all, the will and the readiness to ac- cept responsibility.

Hlin Helga Gudlaugsdóttir is an experience designer, curator and educator at Konstfack, University College of Arts, Crafts and Design in Stock- holm, where she has been, since 2010 designing and running various transdisci- plinary collaborations exploring end of life care, related existential questions and future challenges along with her colleagues and students of the Master Program of Experience Design (EDG). The collaborators through the years include palli- ative care researchers at Ersta Hospice in Stockholm and Karolinska Institutet in Stockholm, experts in elderly care from ACCESS Health International, as well as contributing medical staff, care givers, patients, clients and family members. www.konstfack.se

Stephan Sigrist is the founder and head of W.I.R.E. and has focused for many years on developments in the life sciences and long-term trends in industry and society. He has also authored many books and publications, advises compa- nies and political institutions on strategic issues and is a regular speaker at inter- national conferences.