Quality of life in paediatric palliative care: caring relationship or relationship that takes care

Abstract

The contemporary medicine relegates to the background everything that cannot combat the cause of a diseas. The experience of palliative care instead puts care and caring back at the very heart of medicine. The authors set out an ethical pathway leading to a new concept in quality of life, driven by virtues and ethical values: a palliative approach, compassion, hope and time. Where the incurable nature of a condition opens the door to treating without healing, the human dimension of the person, in its fundamental relationships, can be seen as the most important consideration. The idea of palliative care represents a desire to focus primarily on the patient and that individual’s entire relational life, guaranteeing respect for his or her dignity. Palliative care addresses that patient’s essential suffering in the last phase of life. Compassion is now ‘feeling’ and recognising the other person’s pain. This also applies in situations where there is a need for the relationship to go beyond the ‘verbal’. Even the idea of hope becomes clearer, providing protection from the risk of disappointments that can arise from a culture where medicine has always been viewed as having an illusory omnipotence. There is no risk, therefore, of trespassing into a situation where treatment is abandoned, but rather a new perspective of life and time: no longer an inexorable taking-away of life (chronos), but instead a perfect opportunity to enhance life through relationships (kairos).Ultimately, the authors are proposing a redefinition of the quality-of-life criterion based on the idea of relationships: it’s opposed to individual isolation and the consequent loneliness of the patient, guides therapeutic choices towards a holistic way of providing care for the person and not merely the illness.