Palliative care is a human right

Every living being aspires to end their journey of life with less suffering and more dignity. In fact everybody deserves to have a dignified death. But during the latter stages of life, once terminally ill, the majority of people are neglected and they feel they are a burden to those around them. Sometimes they may give up on life but in reality, a proper care-based approach could give them some hope to live longer. This is why palliative care is important. 
 Palliative care is an approach that improves the quality of life of patients and their families who are facing problems associated with life-threatening illnesses. It prevents and relieves suffering through early identification, correct assessment, treatment of pain and other problems irrespective of whether they are physical, psychosocial or spiritual. 

 “The main idea of providing palliative care is to look after another person’s life in a dignified manner,” opined Dr. Samadhi Rajapaksa, founder of the Cancer Care Association of Sri Lanka who pioneered the setting up of Cancer Care Hospice Network and Home Based Palliative Care Service in Sri Lanka. “Around 60% of patients who need this type of approach are diagnosed with cancer. This is the link between cancer and palliative care. But non-malignant patients also need palliative care and therefore I would say that it is not only a doctor’s business.

Everybody from physiotherapists to counselors and volunteers in other sub-specialties need to be involved in giving a proper kind of care to the patient. Therefore it is everybody’s business,” said Dr. Rajapaksa. 
Dr. Rajapaksa says that when referring to the disease trajectory, only 10% of people would have a sudden death. “The remaining 90% of people will experience fluctuations in their lives during the latter stages. Some will die of an incurable disease and it could be anything from Chronic Obstructive Pulmonary Disease, nephrological diseases, some may be paralaysed and conditions such as Parkinson’s or even other non-communicable diseases such as diabetes and hypertension could affect them,” the doctor said. 

However, Dr. Rajapaksa believes that palliative care is still at a primitive level in Sri Lanka when compared to facilities in other developed countries despite many developments over the past few years. From the Shantha Sewana Hospice Care facility that was setup in 1996 to the Cane Hospice care Centre, Jaffna, the cancer care hospice Centre in Kurundankulama, Anuradhapura, Sathya Sai Suwasevana, Hanwella, Institute of Palliative Medicine in Nupe, Matara, setting up of the Cancer Early Detection Centre at the Matara premises in collaboration with Ministry of Health, Eastern Cancer Hospice Centre, Eravur, Batticaloa, Palliative Care Association initiated by the College of General Practitioners, Sahana Sewana Hospice Care facility that also train caregivers to look after patients who come from outstation and the state-run Palliative Care Centre at Teaching Hospital, Karapitiya.

But given Sri Lanka’s cultural context, home-based palliative care of terminally ill patients is the most appropriate method. “In 2011 we started this approach from Galle and so far we visited 1683 patients at home. As such, a group of volunteers including physiotherapists, counselors etc., visited terminally ill patients and provided holistic care. We need to encourage home-based palliative care as there are many difficulties to maintain hospices. Here, you only need to manage the human resources. In fact most people want to die at home in the vicinity of their loved ones,” Dr. Rajapaksa added. 

The College of Palliative Medicine was initiated last year and the main objective of this body is to train doctors in various specialties to be more familiar with this approach. “We already have international collaborations and we are also starting our journal on palliative medicine,” added Dr. Rajapaksa. 

But many challenges persist including the lack of trained personnel and a dedicated consultancy of palliative medicine. “The Free availability of drugs is another challenge. Pain management and symptom control are essential components in this approach and patients are usually prescribed with morphine and other opioids for the pain management. But some doctors are still reluctant to prescribe morphine for palliative patients for their pain management. Lack of a national policy on Palliative Care is another disappointing fact. Palliative care is a human right and it’s for everyone’s future.

“Usually a doctor’s duty ends once the patient is no more. But if you’re a palliative physician you can continue bereavement therapy with the family of the deceased. Hence the connection doesn’t end once the patient dies. Everybody should therefore engage with providing palliative and on this World Cancer Day I believe that we all can work together and provide better facilities for patients,” he said in conclusion.