By CHRIS GRAEME
IMAGINE being told you’ve got six months to live. Or imagine what it must be like to die.
Impossible to do, since no one who ever went through the dying process ever returned to tell the tale.
Psychologists say that when a person is confronting the ultimate unknown experience, there are several phases the dying person goes through. Initial shock and disbelief, anger, denial, fear of pain, abandonment and the unknown, and finally acceptance in some cases.
Dignity
Unlike Northern Europe and the United States, where there is a highly developed system of palliative care professionals operating out of hospices, until relatively recently such ideas didn’t exist in Portugal.
“Until the Revolution most people died at home and even today hospices simply don’t exist in Portugal,” says Helena Aitken, Director of Training for AMARA (Associação pela Dignidade na Vida e na Morte), a non-profit making organization of volunteers, medical professionals and counsellors who aim to simply be there for terminally ill patients.
With 200 trained volunteers throughout Portugal and 400 health professionals on board, AMARA, which is a non-religious organisation founded by a Portuguese Tibetan Buddhist nun in 2003, helps to bring dignity and a patient ear to listen to for those facing life’s ultimate test.
“In the beginning we had about 70 volunteers but no one was trained and we realized there was a need for this kind of service,” explains Helena Aitken.
“In Portugal it’s not so easy for the medical professions to talk about this – to be confronted with death, because death for them is a failure,” she adds.
Helena Aitken, a psychotherapist by profession, conceived a course 20 years ago when teaching French health professionals about how to treat people with terminal illness.
“If we don’t look at our own fears about suffering and death then we can’t be in a position to understand the fears of others. Very often these fears are about separation, abandonment, physical suffering, fear of the unknown, and this happens to people despite of their beliefs,” she said.
“People face impotence in the face of patients suffering with death and that is why the training is so important,” she adds.
On the one hand it is important that volunteers don’t go to the bedside full of their own beliefs, preconceptions or fears, because one shouldn’t impose their way of life, values of belief system on the patient.
And there’s one very good reason for this, apart from the obvious differences in spiritual beliefs: a dying person senses at least one thing that nobody knows – that all certainty is false and that when confronted with death everyone is in the dark no matter what they profess to believe.
“We train our volunteers to just be there, it’s what we call the inner silence. To go to the dying person with no intentions, preconceptions, not even to help, because we may not be able to help,” says Helena Aitken.
At present AMARA is based in Lisbon, although it has trained volunteers from all over Portugal. It would like to have more people from the Algarve, for example, and maybe open a branch there, but it isn’t always easy finding a coordinator and sufficient volunteers.
AMARA raises money from international events such as World Day of Palliative Care in early October as well as from publishing books, but it doesn’t have a great deal of support from private companies and organizations and likes to remain independent.
Regrets
There has been a lot of media interest over the years and even exhibitions and thanks to that health professionals, doctors and volunteers have come forward and spread the word.
“Sometimes it’s about letting people come to terms with their regrets. I remember a man of 41 who was dying, and his biggest regret was not setting aside the time to build a garden play house for his young son. Then, he was too sick and couldn’t do it. In the end he delegated the task to his brother and explained to his son that his uncle would do it in his name.”
That’s why the training aims to help people come to terms with their lives, the good and the bad, and concentrate on the good things, because dying people are often so full of regrets at not having done this or said that to loved ones, family and friends.
Further information (in Portuguese) about AMARA can be found by clicking on the web links located on the right.
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