Call For Palliative Care
Prof. Dr. Shyam P Lohani
The universal truth is that death is unavoidable. Most of us will not die suddenly, and we might die sooner and sometime much later than we hope. The journey to the end of life should be smooth and comfortable; however millions of people every year die in discomfort and unbearable pain at the end of their life. Families do not like to see an illness cause pain or discomfort to their loved ones. They are often in dilemma with what can be done to lessen the pain and do not always know how to get help and where is the help available.
Palliative care includes symptomatic management during both acute and chronic illness and end of life (terminal) care. Every year about 40 million terminally ill people and millions other who are not terminally ill are in need of palliative care, of which 78 per cent live in low and middle income countries (LMICs). Among children, 98 per cent of those needing palliative care live in LMICs with almost half of them living in African region (WHO, 2018). Despite the fact of such a great number of people are in need, 86 per cent of them do not receive any palliative care services.
Palliative care focuses on relieving the discomfort and distress of serious illness and often mistaken as synonym of hospice which it is not as hospice care is a health service delivery system that provides palliative care/medicine when life expectancy is six months or less to live if the illness runs its natural course and when curative or life-prolonging therapy is no longer indicated. In hospice care, attempts to cure the person’s illness are stopped.
In palliative care, we do not have to stop treatment that might cure a serious illness. Palliative care can be provided along with curative treatment and may begin as soon as a diagnosis of life limiting disease is made. Palliative care is focused on helping people function with a serious illness and live as best they can and cope as best they can despite the stage of their illness. People may need palliative care at one point in time and then improve and not need it, and then they may need it again later.
Many non-communicable diseases and few communicable diseases need palliative care which include but not limited to chronic diseases such as cardiovascular diseases, cancer, chronic respiratory diseases, AIDS and diabetes, kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia and drug-resistant tuberculosis. However, children in need of such care have different conditions or diseases. Children may need palliative care for cancer, cardiovascular diseases, and cirrhosis of the liver, congenital anomalies, blood and immune disorders, HIV/AIDS, meningitis, kidney diseases, neurological disorders and neonatal conditions. The primary scope of palliative care include wide range of issues from the management of pain to depression, anxiety, fatigue, shortness of breath, constipation, nausea, loss of appetite and difficulty sleeping.
Palliative Care in Nepal has not developed as yet to cover all the people who need it, however beginning of 21st century there has been improvements in the field of palliative care for cancer patients. In 2017, Nepal adopted a National Strategy for Palliative Care recognising the need for providing palliative care throughout the country. Few private organisations with the help of international donors and government run cancer hospitals have started the services of palliative care for the terminally ill cancer patients. Palliative care for children is still not available in the country and much of the life threatening patients with non-communicable diseases are not yet covered by palliative care in Nepal. Universal health coverage includes the entire spectrum of essential and quality health services, ranging from health promotion to prevention, treatment, rehabilitation, and palliative care (WHO, 2019). Hence, palliative care is a much needed and essential health service within the definition of Universal Health Coverage. Universal Health Coverage is directed at ensuring the development of a universally accessible health system for all citizens that meet health needs of the people and priorities.
Palliative care development follows same principles of public health model including policy, education, medication availability and implementation. First and most important is to have policies for palliative care which can be based on individual countries need. They need to be incorporated into the existing health care system. Second is to develop appropriately trained manpower to provide the service. Initially, palliative care component may be introduced into the existing curriculum for medical, nursing, psychology, and social work and continuous education for already qualified health professionals who work with people living with life threatening illnesses. Third is the availability of essential palliative care medication, such as opioids. It has been estimated that 80 per cent of the world population lacks adequate access to opioid medication for effective pain control. Appropriate legislation need to be developed for the availability of palliative care medicine at all level of health care. Lastly, all three principles are incorporated into existing health care delivery system and start specialised palliative care services at different levels of health care facilities.
(Prof. Lohani is the Clinical Director of Nepal Drug and Poison Information Centre.)