The recently observed Palliative Care Day brought global focus on an issue which will become increasingly relevant to Sri Lanka due to its fast aging population and the multiple diseases, mostly chronic Non Communicable Diseases which will challenge our health officials.
Here Geriatric specialist and Consultant Kalubowila Hospital Dr Dilhar Samaraweera draws on his many years of experience in Palliative Care to share his views on this subject which is still unfamiliar to most people.
Excerpts…
Q. Palliative Care Day was observed recently in over 90 countries across the world. Countries like Australia extended this day to a week of awareness raising, while the Sri Lanka Medical Association ( SLMA) pledged its support to the Palliative & End of life Care Task Force. What is Palliative Care ? Why is it so important to Sri Lanka? Is it because we are a fast aging country?
A. Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life threatening illnesses. It neither prolongs nor postpones death; it prevents and relieves suffering through early detection, correct assessment and treatment for pain and other problems encountered in life threatening illnesses. Palliative care leads to a dignified good death and care beyond death addressing the bereavement of the family. It provides a holistic approach by relief of physical, mental, social suffering and spiritual relief by a multidisciplinary team.
Q. Sri Lanka has the most rapidly ageing population in South East Asia, one in four will be elderly in 2041 in the country. Ageing is associated with increased prevalence of non- communicable diseases such as cardiovascular diseases comprising mainly stroke and heart attacks and heart failure, Diabetes Mellitus and chronic respiratory diseases, chronic renal failure and cancers. Thus deaths due to the above diseases will be more prevalent in the future.
A. Management of these diseases with a curative intent will continue until such time a shift of focus from curative to palliative care would need to occur when such diseases reach a stage when they are no longer curable and result in limitation of the life span. It is not only the old who need palliative care even children with congenital anomalies, cancer and other disabling diseases who have life limiting illnesses require palliative care. The theme of the world hospice and Palliative Care Day this year ‘My Care, My Right’ aims to communicate that palliative care can be demanded by the public - and that, together, every person impacted by a life limiting illness can influence their policy makers to prioritize palliative care financing under universal health coverage.
The policy makers, public as well as the medical fraternity in Sri Lanka need awareness programs on palliative care as it is a right of every citizen in this country regardless of race, creed or age.
Q. Disease conditions which need palliative care in the global context, have been listed according to Diseases among Adults, among Children, Cardiovascular diseases, Congenital anomalies, Cancer Neonatal conditions, Chronic respiratory diseases, Protein energy malnutrition, Meningitis, Diabetes HIV/AIDS, Chronic kidney disease, Cirrhosis of the liver, etc. Cause of death according to data in 2014 in Sri Lanka is said to be due to Non Communicable Diseases ( 75%) . Do you agree?
A. According to statistics on morbidity mortality data in 2014, 40% of deaths were due to cardiovascular diseases, 14%, injuries, 8%, chronic respiratory diseases, 7%, diabetes, 11%, cancers and 10%, other non communicable diseases. Thus 75% of deaths were due to non- communicable diseases of which cancers were only 11%.
While a very large proportion of these patients require palliative care a fact that is not recognized is that it is evident from these statistics that a major proportion of these patients are non- cancer patients - contrary to traditional belief that palliative care was for cancer patients. Globally, it is estimated that palliative care is needed in 40%-60% of all deaths. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases,(10.3%), AIDS,(5.7%), and Diabetes (4.6%).
Q. What are the reasons for this surge?
A. The development of health infrastructure and improvement in vaccination and primary care resulting in the reduction of communicable diseases and increase in the life expectancy of people in the country resulting in people living longer has been the main reason for the surge of non- communicable diseases.
Q. With the number of terminally ill patients suffering from non communicable diseases( NCD) rising, caring for their complex illnesses requires a more holistic approach. Do you plan to introduce a fresh approach to Palliative Care?
A. Palliative care is aimed at improving the quality of life of the patient and the family. The holistic approach can be best provided by a team of professionals dedicated to palliative care. Team building with the aim of providing palliative care has already begun.
The Palliative Task Force of the SLMA already has conducted a program with teams comprising doctors, nurses, and allied health staff from different hospitals in the island with the blessing and presence of administrators from the Health Ministry. Many such programs are being conducted with the Ministry of Health and National Cancer Control Program with the Lien Collaborative for Palliative Care.
The Lien Collaborative for Palliative care led by Prof Cynthia Goh of Singapore which has nurtured palliative care in this country for the last 4 – 5 years is a regional initiative co-developed with the Asia Pacific Hospice Palliative Care Network (APHN) to enhance capacity for palliative care services provision in selected Asian countries with little or no such services.
Q. How different will it be from the present approach?
A. At present we have formal palliative care services for cancer patients, such palliative care services for non- cancer patients are being developed. Furthermore palliative care services delivered by a multidisciplinary team will be the way forward.
Q. Does Palliative Care require a multi disciplinary team of specialists in different fields? Why?
A. Palliative care needs a multidomain multidisciplinary approach. The physical, psychological, social, spiritual domains need to be addressed to relieve the suffering of the patient and the family. A comprehensive assessment and follow up with regular review of the status of the patient and family can best be done by a multidisciplinary team with expertise in the above mentioned four domains.
Q. Who comprises this team?
A. The multi-professional multidisciplinary team mainly comprises a specialist doctor/Palliative care physician, medical officer specialized in palliative care, palliative care nursing officer, physiotherapist, occupational therapist, speech pathologist, social worker, counselor, pharmacist, nutritionist, bereavement officer, spiritual care giver and volunteers. The Primary care doctors/General practitioners play a major role in primary care setting in the community in identifying patients needing palliative care and directing them towards the centers.
Q. How will it benefit those terminally ill?
A. The terminally ill patients suffer from pain and other symptoms. The symptoms are actually a result of interaction of the body, mind and spirit. Symptoms can be physical, psychological, social or spiritual. The relief of these multiple symptoms of terminally ill patients and support to the families concerned can be provided by this multidomain approach by a multidisciplinary team.
Q. Is there an age limit to what you consider as patients requiring palliative care?
A. There is no age limit to Palliative care.
Q. Does this extend to children with terminal illnesses as well?
A. Yes it extends to palliative care of the children who are deprived of the fortune of reaching adulthood.
Q. Do state hospitals offer End of Life care for terminally ill patients at present?
A. All state hospitals offer end of life care for terminally ill patients. The efforts are to improve the quality of care and achieve uniformity of practice and implementing dedicated teams to manage palliative care.