People in the terminal phase of an illness are cumbersome, annoying, difficult and useless. Cumbersome with their technological bed, commode, armchair, walking frame, crutches, intravenous drips, catheters and drainage bag: there is no room for them at home. Annoying, with their coughing, wheezing, bad smells, bedsores, insomnia, continuous calls and countless needs. Difficult to manage with their repeated requests, obsessive complaining, and all the other evidence of our impotence. Useless to the economy because they no longer consume; useless to society, in which they have no role to play; and useless to the hospital industry since they do not help the wheels turn. To sum up, people in the final phase of a terminal illness are of no use whatsoever, so let’s get it over with as soon as possible.
If a request for euthanasia is the result of all this, then it would seem to respond more to the needs of the family, the health service and society than to the needs of the patients. On the other hand, when a request for euthanasia does come from a patient, in most cases it is prompted by fear of pain and loneliness, the loss of status in society and the family, or relationships with caregivers. Yet such a request becomes superfluous and fades when the last phases in life are not dependent on the effectiveness of machines, and when – excluding any futile life-sustaining treatment – physical pain is removed or relieved and the last days are passed in the realm of dignity, personal relationships, friendships and the love that has given life its meaning. In these circumstances, death is no longer a defeat but a challenge to discover the ultimate meaning of life.
Palliative care and a ‘good’ death
Palliative care is the alternative that the new medicine – a medicine that embraces scientific and technological progress, but which has also rediscovered the values and the oneness of the individual – proposes in order to counteract a law that legalises or decriminalises euthanasia. Beyond the clinical effectiveness of medical services, this new medicine focuses on caring for patients, their dear ones and securing the well-being of both.
In a world of productivity, efficiency and competitiveness, in a society based on economic activity and superfluous consumption, where possessions and outward appearance count more than existential values that answer to the problem of human existence, there is no room for reflecting on death. In this context, a ‘good death’ means a quick, painless and unconscious death; if possible, one that doesn’t disturb anyone, such as dying discreetly in one’s sleep.
But if we agree to reject the frenetic activity of modern life, the efficiency of high-tech medicine and instead propose palliative care; if we admit to our vulnerability and impotence and adopt a serene and accepting attitude, we can help the dying to experience death lucidly, assisting them in a context of relationships, respect, dignity and love in which they accept being loved and giving love, even though the ravages caused by their illness alter their appearance and cause them distress.
The greatest desire of the dying is to have their needs and fears listened to, to be acknowledged as people who have relationships and a role they can still play, and to be respected for their dignity as people, neither compromised nor conditioned by their illness.
They have so much to teach us
People afflicted by a terminal illness teach us to be aware of our weakness, our vulnerability and our impotence. They help us to discover something that subverts our schemes, and they become a resource that aids us in our search for the meaning of life. They offer us, at times in spite of themselves, an example and a model: the progressive separation from everything in life that was central to their activities and concerns. They gradually free themselves from all the conditioning that cluttered their existence during the frenzied business of living, and help us to discover that, in the end, all that remains viable and indelible are our experiences and expressions of love. This includes love we have abandoned or betrayed, or love that ended badly or we are ashamed of, because every sincere expression of love reveals the mysterious universal Love, which is the source of life.
A book on discovering the sense of life in the proximity of death
I am the author of a book first published in Italy in February 2013 (L’amore, sempre Il senso della vita nel racconto dei malati terminali, Lindau, Torino, 2013 ISBN 978-88-6708-045-8). A second edition is to be published by Lindau in January 2015. It was translated into French by Tiziana Stevanato and published in October 2014 by Carnets Nord under the title Prends mes mains dans les tiennes, with a preface by Marie de Hennezel ISBN 978-2-35536-148-7.
The book, in the form of a series of brief narratives, is based on the author’s experiences with suffering and death, both personal ones and those I have encountered in my role as a volunteer on the palliative care ward of a large Brussels hospital. What happens in the wards where patients spend the last days or the last weeks of their lives? What stories intertwine? What dialogues occur? What sentiments grow and find expression?
Suffering and the end of life can create the conditions for moments of deep insight and the development of solidarity, gratitude, friendship, dialogue and love. Patiently and sensitively listening to those who are leaving us can teach us a lot about the deeper meaning of life and death. Above all, it teaches us how best to live our own life to its very end.
The book’s preface by Marie de Hennezel, concludes with this statement:
‘Reading this book leads to the conviction that we should not miss this experience of assisting a loved one who is close to death. We should not be afraid. We should let our hearts speak; let our intuition guide our actions. We will discover unexpected resources in ourselves: a tenderness, a touch, a readiness to assist that, perhaps, we did not even believe ourselves capable of. In brief, we will emerge from this experience more generous and more human, because on the brink of death it is love that has the last word.’
About the author
Attilio Stajano is a volunteer in the palliative care unit of a hospital in Brussels and a board member of the Foundation for Palliative Care for the European Hospitals in Brussels. He was formerly an industrial researcher, a civil servant at the European Commission, and a professor at the University of Bologna, Italy, and at Georgia Tech in Atlanta, GA. You can reach him at http://stajano.org or write to him at firstname.lastname@example.org
Seeking an English language publishing house
The Italian version of the book contains 50,000 words. The English translation [Love, Always: Lessons from the Dying on the Meaning of Life (working title)] is close to completion. The author is exploring the possibility of having the book published by an English-language publishing house. Any suggestions would be more than welcome.