Palliative Care is the active total care of patients with incurable diseases. Palliative care responds to physical, psychological, social and spiritual needs of the patients and their families and extends if necessary to support the family in bereavement. It is patient centred, and not disease-focused.
According to the World Health Organisation, “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. Palliative care provides relief from pain and other distressing symptoms and offers a support system to help patients live as actively as possible until death. Palliative care also offers support to help the family cope during the patient’s illness and in their own bereavement.
India is estimated to have more than one million people diagnosed to have cancer every year. More than 80% of them are incurable at the time of diagnosis. The country is estimated to have an equal number of patients with other incurable diseases like progressive neurological, cardiac, respiratory, AIDS and other diseases. With the rapid ageing of the Indian population the highest number of patients needing palliative care in the future will be from among the elderly terminally ill.
Care of the dying patient (Terminal Care) is an important part of palliative care however palliative care is not terminal care alone. It starts as supportive care when the diagnosis of a life threatening illness is made, continues as terminal care if the illness progresses and provides bereavement support for the family after the death of the patient. Palliative Care is not in conflict with curative care. The principles of symptom control and psychosocial support used in palliative care are beneficial to the patient even when the disease is curable.
No. Palliative care is not disease specific. In addition to advanced cancer, stroke, patients with end stage respiratory, cardiovascular, renal and other diseases such as AIDS benefit from palliative care. Availability of palliative care services will also help to reduce suffering in the majority of the elderly in their last phase of life. It has also been observed that patients with life threatening diseases can benefit from the additional psycho social support and symptom relief offered by palliative care services when the disease is curable.
The medicines used for symptom relief are the same drugs used in the practice of modern medicine. However their use in combination with other supportive treatment modalities using a holistic approach is what makes the difference.
Morphine is one of the medicines used by palliative care physicians. About 20% of the patients in pain with advanced diseases will need strong opioid drugs like morphine. The World Health Organisation has suggested a simple three step protocol (WHO analgesic ladder) for the management of pain in advanced diseases. Oral morphine is one of the drugs used in this protocol.
Palliative care is not in conflict with treatment to control or slow down the underlying incurable disease. This treatment is continued in the most appropriate form depending on the stage of the disease and the benefit that the patient can get and it will be stopped only when it can cause more harm than good to the patient.
Palliative care can be delivered in the institutional or community setting. Most patients with progressive incurable diseases prefer to be at home if services to keep them comfortable are available. The methods used are simple and low technology. Hence most of the patients in need of palliative care can be looked after in the primary health care setting in the community.
A patient with advanced incurable disease will have a lot of physical, emotional, social and spiritual problems. Such patients will need appropriate care for the rest of their lives. It is not possible for doctor or nurse or hospital to address these complex problems alone. What is ideally needed is a team of trained doctors and other health care workers supported by trained volunteers in the community.
Since most of the patients prefer to be at home in the last phase of their life, it will be ideal if palliative care services are available to them in the community. Community Based Palliative Care is the term commonly used to refer to palliative care services organised by the local community, with home based care as its corner stone. Community based palliative care services also has good participation from the members of the local community. Palliative care institutions should be available to support these community based home care programs.
The term ‘Hospice’ was originally used to denote a standalone inpatient palliative care service. In many cultures, the term later became synonymous with palliative care. A lot of people use the terms hospice care, palliative care and end of life care interchangeably.
Delivery of proper care to a bed ridden, incurably ill or dying person involves a lot of skills and knowledge which is not yet part of the main stream education and training programs in our country. So the health care professionals and community volunteers involved in palliative care need to undergo education and training programs to improve their knowledge and skills.
Training programs are offered by various institutions and organisations involved in palliative care in the country. Specific training programs for doctors, nurses and community volunteers are available at different palliative care centres in the country.More information available at www.palliativecare.in
The state of Kerala has managed to develop an integrated health service delivery model with community participation in palliative care. Institute of Palliative Medicine has been playing a major role in shaping up this model. The evolving palliative care system in Kerala tries to address the problems of the incurably ill, bedridden and dying patients irrespective of the diagnosis, age or social class. The program in Kerala is also expanding to areas like community psychiatry and social rehabilitation of the chronically ill. Palliative care has been declared by Government of Kerala as part of primary health care. Combined efforts by Civil Society Organisations, Local Self Government and Government of Kerala have resulted in the best coverage anywhere in Low and Middle Countries for palliative care in Kerala. The ‘Quality of Death’ study by Economist Intelligence Unit (2010) states that “Amid the lamentably poor access to palliative care across India, the southern state of Kerala stands out as a beacon of hope. While India ranks at the bottom of the Index in overall score, and performs badly on many indicators, Kerala, if measured on the same points, would buck the trend. With only 3% of India’s population, the tiny state provides two-thirds of India’s palliative care services.