Dr Nezamuddin Ahmed
"We all must die but that I can save a man from days of torture that is what I feel is my great and ever new privilege. Pain is an even more terrible lord of mankind than death itself" - Albert Schweitzer.
While the World Palliative Care Day is being observed throughout the globe on October 6, the concept and the service remain widely unknown to the majority of the healthcare providers and the community at large in Bangladesh. It needs to be appreciated that enough knowledge has been gained in the last fifty years in medical and social science regarding the sufferings and requirement of patients with incurable diseases. At the same time, examples of valid, simple and affordable approach to reduce these sufferings do exist. This is what is known as 'Palliative Care' to the much of the world. Yet its unavailability in the country results in majority of our patients, suffering from incurable diseases, passing their final days in much physical, mental and spiritual pain and agony.
The global slogan this year is, (care) 'across the ages: from children to elderly.'
Palliative Care is the active total care of patients with life limiting disease and their families, by a multi professional team when the disease is no longer responsive to curative or life prolonging treatments. The term 'Palliative' is derived from the Latin word 'Pallium' meaning a cloak. In palliative care, the symptoms are cloaked with treatment whose primary aim is to promote comfort. However, palliative care extends far beyond the physical symptom relief. It seeks to integrate physical, psychological, social and spiritual aspect of care so that the patients may come to terms with their impending death as fully and constructively as they can.
Palliative care has much to offer in easing the passage at the end of life and it has the potential to do this for many million people around the world. An aging population, a growing incidence and prevalence of cancer, an exploding HIV/AIDS epidemic all have drawn increased attention to PC globally. Each year, worldwide, 10 million people are diagnosed with cancer and six million die from the disease. Global cancer rates will increase by 50 per cent and there will be 15 million new cases in 2020. The estimated number of people living with HIV ranged from 33.4 million to 6.0 million in 2006. During 2005, an estimated 4.1 million became newly infected with HIV and 2.8 million lost their lives to AIDS. Fifty percent of world's new cancer cases are now occurring in developing countries and 80 per cent of these individuals are already incurable at the time of diagnosis. Understandably, PC remains the realistic therapy or care to offer to these huge numbers of patients. Tragically, two-thirds of those in need of PC live in developing countries that have less than 10 per cent of the world's resources for health care personnel, drugs and equipments.
Though the concept of providing organised, compassionate care to the terminally ill patients with life limiting disease can be traced back to hundred years, involvement of medical science in this issue is relatively new. It is widely recognised that modern hospice movement, now popularly known as Palliative Care, began with the establishment of St. Christopher hospice in London in 1967 as the first research and teaching hospice by Dame Cecily Saunders. The service offered by it also included home care, family support throughout illness and bereavement follow-up. This began to be termed the Hospice movement, where patterns other than free standing in-patient units were first developed. A number of teams in different parts of the world began offering home care with medical and professional teams leading many volunteers. In one survey, till 2005, there have been more than 8,000 individual palliative care services being offered worldwide. In more than 13 countries, Palliative Medicine has been accorded a specialist status. Understandably, most of these services have been in the developed part of the world; nevertheless, increasing numbers of services are being developed even in the developing part where the need is more.
Over two-thirds of the estimated 100 million people who would benefit from pain relief and palliative care globally live in developing communities. Tragically only a fraction of these patients now receive adequate care, so the need is enormous. Future demand will be even greater due to rapid aging of the population and dramatically increasing prevalence of HIV/AIDS.
Many institutionalised hospice and palliative care programme effectively deliver such care and demonstrate the value of symptom control for patients with advanced disease. However, institutionalised hospice and palliative care programme can only reach very few patients. To succeed in marginalised populations, palliative care programmes must address socio-economic, cultural and ethical needs of the people the programme serves.
Bangladesh: Prevailing health care approach in Bangladesh is cure-oriented in accordance with the global trend. As a result, patients having been diagnosed as suffering from an incurable disease do not get knowledge-based appropriate attention from health care providers. Concept of palliative medicine, the medical component of the total approach of Palliative Care is not known amongst the medical community. Official palliative care services and educational programmes do not exist here. Primary concerns related to palliative care are cultural, socio-economic and educational. Poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug unavailability and cost and insufficient knowledge of health care providers are obstacles to palliative care. It needs to be demonstrated that humane and compassionate care is very much improved and truly realistic when accompanied by good science and technology. To further national efforts for the benefit of incurable patients, education and training at the highest level possible is needed. This will develop and apply models of care that are consistent with the cultural and social characteristics of specific populations. Discussions about death and dying and options and providing care at the end of life are seldom addressed in either health professional curricula or in the media in Bangladesh. There are increasing numbers of patients who die with unrelieved suffering. Palliative care in Bangladesh will undoubtedly face barriers and challenges. The paternalistic orientation of many health professionals and administrators impedes informing patients about cancer diagnosis and prognosis.
As health care systems evolve here, palliative medicine and care present an opportunity for policy makers, clinicians, medical teachers and community organisations to immediately provide cost-effective care that will have a significant effect on the lives of patients and families living with advanced illness. While they improve their country's capacity for prevention, early detection and treatment for those diseases, Palliative Care must get its priority. Official palliative care services and educational programmes do not exist here. People of Bangladesh do need humanistic compassionate care for its incurable cases.
The writer is Associate Professor
and Project Coordinator of the Palliative Care Service at BSMMU
E-mail:
[email protected]
