Call to care for people with life-threatening illnesses
Thousands of people with life-threatening illnesses should receive care as part of the mainstream health care system of the country so they can face the normal process of death with dignity, doctors say. The Palliative Care Association of Sri Lanka has produced a national health strategic master plan 2016-2025 in which it recommends that a national palliative care programme be integrated into the mainstream of the health system.
The association says that the Ministry of Health should ensure all patients in need of palliative care should be registered in the health system and that care teams should tend to dying patients.
The group suggests that the ministry maintain a record of the number of patients who need palliative care and also hold palliative care courses and training programmes for care givers.
The College of General Practitioners of Sri Lanka appointed a sub committee to form the Palliative Care Association, which started in April 2015.
It is estimated that out of 112,500 deaths a year in a population of 21.2 million, about 68,000 (60%) need care at their bedside as they fight the battle to live.
Most die of a terminal illness including cancer, respiratory disease, Alzheimer’s, stroke, cardiac failure, and kidney problems, among others.
Of this, 90% endure long, lingering deaths requiring the services of general practitioners and care givers.
Palliative care was a relatively unknown discipline in Sri Lanka until the sub committee of palliative care signed an MOU with the Institute of Palliative Medicine in Calcutta, a collaborating centre of the World Health Organization, in 2015.
The president of the Palliative Care Association, Dr Darrel Mathews said that an ageing population of over 12% (over 60 years) and a forecast of 25% in 2040 has pushed the physicians to develop a system of care.
The association has begun basic training programmes for health professionals through short certificate courses. These will help create a pool of trained doctors and nurses capable of educating families and the community on the basics of palliative care.
The association believes that training volunteers and families under the supervision of medical and para- medical personnel in the community can have an immediate impact in improving the standard of care.
Already the association and the Institute of Palliative Medicine has trained 120 doctors and 40 nurses in the government and private sector. Further, 301 doctors have been trained before the launch of the association.
The association believes that family physicians who give palliative care, need guidance from specialists of respective fields. Training GPs, it is believed, will have an immediate positive impact since they are already managing such patients. Around 51% of the GPs are involved in caring for dying patients.
The association, under the theme, “living and dying in pain: it does not have to happen’’, is planning to establish branches in various parts of the island.
With only a few institutions available for care, family doctors are often called on to provide palliative care for the sick and dying at home.
This includes patients with cardiovascular problems, malignancies, stroke victims, final stages of dementia, end stage renal disease, terminal chronic obstructive pulmonary disease, HIV/AIDS and cerebral palsy.
Palliative care not being an established medical or nursing specialty in Sri Lanka, care extended by health professionals has been deficient. Training facilities for health care professionals or community volunteers have not yet been formalised by the Health Ministry.
The association is lobbying to establish facilities to train doctors and nurses to take care of patients with life-threatening illnesses.
In homes, such patients are taken care of by people who have no formal medical or para medical training. Having a terminally ill patient without proper care can be traumatic to the patient and to the family.
As a first step, last year, the Piliyandala branch in the Kesbewa Divisional Secretariat was opened as a model project which has been developed, owned, and sustained by the community. This branch, has supported eight patients and their families in the past year enabling two cancer patients to have a dignified death.
The branch also conducted awareness programmes for the nursing staff of the Divisional Hospital at Piliyandala and the Ministry of Health staff in Piliyandala. A continuous professional development programme on pain management in palliative care in general practice was held for the doctors in the area.
Awareness programmes were held for retired people and community leaders in the area to understand the importance of palliative care. The association’s staff are also visiting homes in Vavuniya.
Two-day certificate courses for family doctors in state and private sectors have been held in Colombo, Galle, Jaffna, Kandy, Batticaloa and Anuradhapura on caring for the dying.
Around 421 doctors participated in the programmes in the last two years. Consultant phy- sicians, anaesthetists and doctors of the cancer control programme of the Ministry of Health participated.
Plans are being drawn to run community projects to look after the poor in need of palliative care. A multi-disciplinary team is to be set up closer to homes to ensure coordinated and continuous care. The care includes handling patients, pain management, bowel care, changing catheters, counselling, among others, while ensuring they continue to attend the state-run clinics for regular treatments.
Meetings are being planned to improve awareness of the importance of palliative care among the community, and solicit their participation in community programmes so that these can be run sustainably.
Many philanthropists and caring people have been coming forward to participate in the programme. There have been several inquiries and donors from overseas for the project. Also civic-conscious people are coming forward to help form branches in their own community.
This has prompted the association to draw up plans to run community projects that would look after the poor patients who need palliative care, in the community.
Dr Darrel said under this project, multi-disciplinary teams will be set up to look after patients in their homes, a practical solution to ensure quality palliative care.
“This will ease the burden of the state-run free medical care system in the country,'' he said.
Awareness is also being raised by involving school students. Workshops have been held in Colombo, Galle, Jaffna, Kandy, Anuradhapura and Batticaloa.