Interview with Prof. Dr Franco Rest, one of the pioneers of the hospice movement in Germany

Questions to Prof. Dr Franco Rest

How would you assess the hospice work that has been carried out in Germany for more than 30 years now?

The hospice movement and its many facets have made an undeniable contribution to the rehumanisation of our society. Dying patients now have the chance to win back the personhood that they had previously lost, and social care and healthcare institutions now have the chance to reach the weakest of the weak, at least in some areas (outpatient care, networks); life and death have returned to our collective conscience from their exile, with rituals and symbols that have either been suppressed or placed in the hands of specialists returning to people’s control; places where people die are no longer secretive; and the completion of life is more about embracing one’s individuality rather than a problem of disposal. But these gains are fragile and delicate, as destructive trends are forcing their way through: medicalisation / medicinisation through the absolute power claimed by palliative care; the associated re-institutionalisation and suppression of the skills and competences of lay people and volunteers; the associated professionalisation even of spiritual care; economisation at a time when affordability dominates; legalisation through patient decrees, authorised representation, rules and regulations. All of these points would need a more detailed treatment.

 

When the first hospices and palliative care institutions were opened in Germany, there were no specially trained personnel at all. What was the situation like back then? What kind of pioneering work had to be done in educating and training the different groups of professionals?

When we began looking into the process of dying from a scientific and academic perspective around 50 years ago and then tried to develop levels of decision-making, there were no criteria, items, or anything else in place. That’s why we had to take a descriptive approach (participatory observations) initially. There was no link whatsoever between medicine and associated healthcare training and dying patients; they were often left to either fend for themselves or handed over to pastoral care. Only the “guilty conscience” of those providing care (relatives and healthcare professionals) opened the eyes of the medical profession. The influence of ethics, the removal of taboos and the added confidence of the terminally ill and their friends, families and communities pushed forward professional development in this area. “Pioneering work” first and foremost involved deriving applied and practical ethics (see also the importance of Christian impulses), which led to palliative medicine and corresponding care. One further pioneering area was drawing on the “natural skills” of terminally ill patients themselves, their social support systems and awakening the “inner side” of healthcare professionals to find their own mortality, limitations and accepted culpability. Hospices really were citizens’ movements in the best sense of the term, forcing healthcare professionals to embrace their responsibilities.

 

If, as one of the founding fathers of the movement, you think about the relevance of being a pioneer in hospice work, what qualities do you consider necessary now to further the hospice idea today? Is it just about supporting inpatient elderly care facilities?

Which qualities? The most important aspect here would be first and foremost to look into oneself, in a sense. Who am I if I look back at my life, in other words from the perspective of death? Have I accepted that my life will end in death? – My work in the hospice movement (since 1985) began over 50 years ago in inpatient elderly care, because we were not allowed to conduct research in intensive care units or other clinical areas as social scientists. Nonetheless, inpatient and outpatient elderly care remains a stepchild of hospice and palliative care. “Specialist” palliative care has largely neglected “general” and “integrative” care. We should continue to remember: there should be nowhere where it is better or worse to die than anywhere else. Anyone working in this area should start with themselves.

 

Hospices are sometimes described as a place to learn how to die. Do you think that it is possible to “learn how to die”, a kind of Ars moriendi if you will, as practised in ancient philosophy and later also as part of Christian traditions?

When Seneca wrote “Those who have learned how to die have stopped living life as slaves” or Plato summarised his life’s work as “learning how to die”, it was not understood in the same way as it would later be in the Christian Ars moriendi or in Johann Amos Comenius’ “school of death” as cleansing of one’s conscience in good time before making a safe passage into a great beyond free of hell or purgatory. It was Xaver Schmid from Schwarzenberg (1819-1883), a largely forgotten figure, who first understood education about death as a process of transfiguration and described it in line with the other transformations that take place in our lives. One of our tasks moving forward could be integrating the hospice idea into the process of transfiguration from before birth right through to after death, provided we avoid the learning process from the “hospitals for the dying” in Aldous Huxley’s Brave New World. Learning to die is not about ultimately accepting death as a joyful experience, as was suggested at the beginning of the hospice movement – including by Kübler-Ross – it’s about a final development of one’s personhood in order to win back one’s character as an individual, the indivisible nature of being human, that is repeatedly disrupted throughout life.

 

Philosopher Friedrich Schelling once said that artwork presents the infinite in finite form. Does art have the capacity to offer salvation – in life and death?

That’s a very open question, not least because the term “art” is not defined. Art is often defined in a way that derives from the skill, but it also has something to do with knowledge, in the sense of something being discovered and those who are prepared to proclaim the discovery. This is the only way that the arts can be of assistance (as salvation) in the process of dying or grief. I would love to see music, the visual arts, poetry and dance find their way into accompanying the process of death. I myself (together with my late wife, who introduced art into hospice work) have laid that “finite” ground with self-written poetry and verse; many dying and grieving people unable to voice their experiences have been able to find the right words with this poetry and verse. To quote the Book of Wisdom (Chapter 18): “For when peaceful stillness encompassed everything and the night in its swift course was half spent, Your all-powerful word from heaven’s royal throne leapt into the doomed land.”

 

 

Picture above: Franco Rest with Managing Director Ludger Prinz (left) and Andreas Stähli (right)

Picture below left: Franco Rest during his lecture at the district government in Münster on the occasion of the 20th anniversary of the Johannes Hospice

Picture below right: Franco Rest during a press conference