Health workers say palliative care is about healing and adding life to days instead of days to life
A few years ago, a 44-year-old monk was diagnosed with advanced lung cancer that had spread to the bone.
Unaware about his illness, he was in severe pain that was inadequately managed. He had few family members including his old mother around him.
A few days later, he died in a state of physical, psychological, emotional and spiritual distress.
Associate lecturer with the Faculty of Nursing and Public Health, Tara Devi, shared this case at a pre-conference programme of the third international conference on medical and health sciences earlier this month.
Palliative care, which focuses on relieving the discomfort and distress of terminal illness, might have helped him go through a less painful death.
However, palliative care is a new concept in Bhutan and has no palliative care professionals today.
Tara Devi said it is important to consider what healthcare professionals can do in terms of care when the disease is no longer responsive to available therapy.
She said modern medicine has progressed rapidly in the country and has introduced sophisticated technology making health professionals more competent in handling acute medical problems.
“Doctors and nurses are more into analytical research and intense study of the cause of disease or abnormal conditions and therapeutic factors,” she said. “Most the health services are disease centered, specifically designed for acute episodic treatment with curative intent.”
For patients who have long-term, progressive or incurable diseases, she said that the need for ongoing care is not met by the existing healthcare system. “It is palliative care that is designed to meet various needs for such patients and their families.”
She said that palliative care is providing care beyond cure and adding life to days rather than days to life. It is accepting death but also enhancing life and a partnership between the patient and the carers. “It is concerned with healing rather than curing.”
Chairman of Pallium India who is also the director with Trivandrum Institute of Palliative Sciences, Dr M R Rajagopal, said that care starts from the beginning of suffering and stops not with the death of the patient but a restoration of the family health. “It is the holistic approach of care that distinguished palliative care from the conventional medical care.”
Dr Rajagopal said doctors are trained to diagnose and treat diseases and nothing beyond. “When it is found that a person’s disease is incurable then he or she is ignored, which should not be the case. If a patient is confined to four walls and have repeated urinary incontinence and bedsores, that is more life-threatening than the diagnoses.”
He said that health by definition is not just an absence of disease but about physical, social and mental wellbeing. Whether a disease is curable or not, whether it is physical, psychological, social or spiritual, he said that, suffering needs to be treated.
Palliative care is not just restricted to cancer patients. Patients with chronic renal disease, a baby with retinoblastoma, patients with diabetic foot ulcer and old people with dementia also need palliative care.
“Palliative care has to be an essential part of healthcare. We can’t achieve everything but if we try, the difference we make to the human life is immense,” he said.
Besides healthcare professionals, family members and volunteers play an important role in palliative care depending upon the need of the situation.
With the shift in global disease burden towards non-communicable diseases, more people are diagnosed with chronic diseases and living longer with poor quality of life, Tara Devi said. “Chronic diseases are increasing and rising trend in the aging population in Bhutan calls for palliative care in regular clinical practice.”
Two faculty members attended six weeks training on palliative care in Trivandrum, Kerela last year while six oncology nurses attended the same training this year.
A palliative care module is being developed for inclusion in the curriculum of both Bachelor of Sciences nursing and midwifery (BScNM) and general nursing and midwifery (GNM) at the medical university.
The three-day workshop was conducted to create awareness and educate healthcare professionals on palliative care and components associated with the care.