CAREGIVER AND TRANS-CULTURAL ILLNESS

Antea Worldwide "Palliative Care Conference"
Roma, 12-14 Novembre 2008

In preceding ages sufferance was a daily experience and ill persons were cared for within their family or the community the belonged to. With the present development of the technique the patient, and above all the person who is near to dying, is taken away from the family and entrusted to the ‘expert’, a doctor, a nurse, a social worker, a family caregiver. Death, managed by technique, is hidden from usual life. Post-modernity has socialized death, or rather, de-socialized dying.In regard to terminal patients, an amount of marginalization is observed which tends to become more and more extended with time, both from the social and from the human point of view. This kind of marginalization, to which the experience of a terminal illness is added, dwells in the beds of our hospices: it is the immigrant patient, the non-EU national, the product of press sensationalism, the object of social stigma and discrimination. Redefinition of medicine, and in particular medicine of migration, consists in meeting and coping with the need of assisting persons whose socio-sanitary conditions are socially and culturally changing. Foreign patients have a verydifferent attitude towards the experience of disease, sorrow, sufferance and death. A different perception of symptoms depending on different cultures of origin is valid for all populations. Immigrants use somatic metaphors as a shortest and easiest way of expressing emotions and feelings not otherwise communicable. They often complain of a number of vague symptoms (headache, digestive disorders, indefinite and diffuse pains, itching, smarting urination) without somatic evidence.The change process the migrant person is confronted with calls for a continuous crisis of his/her own historical and cultural identity and s/he will be asked in advance for an endless adjustment to completely different situations at a high price. But anticipation of a sufferance is not sufficient for eliminating it. In contact with patients from different cultures doctors risk to linger on the mere consideration of somatic metaphors, unable to get from the whole picture the deep meaning of their attempts to recover a new identity.Unable to share the history of the persons with whom we share daily life, even less will we be able to share living and dying. Death and dying are two different things and the challenge we face is to be there in living otherness in daily life and to increase our potential for sharing a different vision of dying and the presence of the other.When the soothing power of medicine and technology fade away for a person who has lost the value of sufferance and dying, nothing but the abyss of void and inequality is left. It’s up to us the great challenge not to let this happen.On this very issue should the terms of care and assistance be redefined. Death and illness point out to an ever more precise and severe discrimination, within a same community, between the rich and the poor, the natives and the immigrants. Quite often, beside immigrant patients, there are no families who could assist them to their last breath. Nor are there cultural codes to allow interpretation of the event, no traditional supportive practices in the last moment of life. Dismantled in their bodies and souls the immigrants die with the burden of social invisibility.Who can help assist a terminal patient, unable to communicate in any official language, not cared for by his family of origin, alone, abandoned, stigmatized, and who is going to die? Who can safeguard and provide recognition of one’s own traditions, understand and codify them in order to give dignity to one’s life course? Who can help give voice to the last wishes of a person in a foreign country? Definitely essential in the socio-sanitary context today is the training of ‘intercultural mediators specialized in dealing with terminal patients’, caregivers of transcultural assistance, expert in ‘reception’, in ‘taking care’, in assisting them through the knowledge of ethnical, cultural, linguistic and personal differences. The caregiver can acquire specific ethical competence for the delicate ‘last moment of life’, in order to offer to the immigrants in Italy the dignity that too often they have been stripped of in our country.