- The Kerala Experience in Palliative Care:An Ethical Exploration from the Public Health Perspective†
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.— Dame Cicely Saunders
Palliative care which deals mainly with incurable illnesses, most often in the end stages of life, is a virtual minefield of ethical issues. According to the World Health Organization (WHO), "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems: physical, psychosocial and spiritual."1 The goal of palliative care can be summarised as providing relief from needless suffering due to pain and other distressing symptoms, giving psychological, emotional and spiritual care and the creation of a support system that helps the individual whose disease is not responsive to curative treatment to live as actively as possible and helping the patient and family to cope with the illness.2, 3 The aim of any palliative care programme is to maximise the quality of life of patients and their families.4 It affirms life and regards dying as a [End Page 14] normal process, and hence does not attempt either to hasten or postpone death. Palliative care is often misunderstood as care during terminal illness, but in its true sense, it relieves suffering and improves quality of life for both patients and families throughout an illness experience, not just at the end of life.5
Models of Palliative Care Delivery
Several models of palliative care delivery have been tried in different parts of the world, with varying results. Each model has its own view on equitable distribution, universal coverage, quality of care provided and cultural appropriateness. Palliative care initiatives which have been documented6, 7 to contribute to improvement in the quality of life of patients in high-income countries may not readily be transferrable to situations of low- and middle-income countries where human, technical and financial resources are in short supply.
The origins of the concept of palliative care dates back to medieval times, when shelters run by philanthropists and religious orders scattered along the trade and crusading routes of Europe offered sustenance and care to the weary, sick, wounded or dying travellers.8 The term "hospice", as defined by the Cambridge Advanced Learner's Dictionary, refers to "a hospital for people who are dying, especially from cancer".9 The concept of a hospice as it is understood today began developing with the establishment of the world's first modern hospice by Dame Cicely Saunders and her colleagues in 1967 in London.10 The St. Christopher's Hospice was based on the concept of "total pain" proposed by Dame Saunders, which encompassed not only physical pain but also social, emotional and even spiritual dimensions of suffering.11 The extraordinary success of St. Christopher's Hospice, based on the three principles10, 11 of excellent clinical care, education and research, differentiated it from the earlier hospices, and paved the way for the development of the hospice movement, where an expert multidisciplinary team in an institution works to address the medical, social, emotional and spiritual needs of a patient with limited prognosis and their families. The interdisciplinary team consists of trained professionals and includes doctors, nurses, social workers, psychologists, spiritual counsellors and other paramedical staff.
Over a period of time, it was realised that palliative care must be made available to patients in the setting of their choice. The principles of care provided through a hospice could be applied in many settings such as home care and day care services and not just in specialist inpatient units. This realisation led to the gradual shifting of hospices in its original form as institutions to [End Page 15] hospice care which is defined not only by the type of services and care provided, but also by the setting in which these services are delivered.12