Four out of 10 Malaysians need palliative care each year — Hospis Malaysia

APRIL 22 — Four out of 10 Malaysians will require palliative care at the end of their lives. This translates to an estimated 56,000 patients each year and this number is growing as the population ages.

More than 60 per cent of the needs arise from patients suffering from non-cancer illnesses. And even more worrisome, less than 10 per cent of them have access to this essential aspect of medical care.

When palliative care first started, it was out of a sense that patients with life-threatening illnesses were being abandoned when cure was no longer possible. These patients were suffering and palliative care was a humane response to their suffering.

This continues to be the backbone to the practice of palliative care, which aims to manage pain and other physical symptoms and addressing psychological needs of the patient in the context of caring for the “whole person.”

As a leading palliative care service provider in the country, and a strong advocate for better access and improved standards in this medical specialty, Hospis Malaysia produced a report Palliative Care Needs Assessment: Malaysia.

The report attempts to estimate the need for palliative care in the country using a World Health Organisation framework and compares it to the current availability in the community as a gauge of level of accessibility.

“We have found that, nearly every Malaysian believes that palliative care is important and should be available to everyone in need, but most do not know what services are available. Just knowing what palliative care is, is not enough.

“The people deserve to be assured that their pain and suffering will be relieved, when they are affected by a life-threatening illness. They need to be assured that their psychological, social and spiritual needs are addressed, and that help is at hand wherever they may be,” says Dr Ednin Hamzah, CEO of Hospis Malaysia, who is also a member of the Board of Trustees of the World Hospice and Palliative Care Alliance, and co-author of the report.

While reviewing the report, Dr Sylvia McCarthy, Medical Director of Hospis Malaysia and a co-author of the report, comments that “The emphasis of palliative care on cancer needs to shift and services should be looking to plan their development to include patients with other life-threatening illnesses.”

This was in response to the findings in the report that almost 70 per cent of the palliative care burden is on non-cancer illnesses such as cardiovascular diseases, chronic obstructive airway disease (COPD), HIV/AIDS, diabetes mellitus, kidney diseases, liver cirrhosis, Parkinson’s and Alzheimer’s.

“We also need to recognise that children also need palliative care, and their needs tend to arise from congenital anomalies, hereditary disorders and neonatal conditions,” she adds.

Dr McCarthy continues: “The practice of palliative care begins with determining patient-centred goals of care”. A public survey conducted to support the report revealed that majority of Malaysians prefer to be cared for at home if they had a life-limiting illness, and have indicated a preference to die at home. But sadly, a large percentage still are not able to have their wishes met.”

Among the key reasons given for this are — the perception that pain management is better handled in hospitals, caregivers panic and transfers the patient to hospital when the patient is suffering, and when the illness worsens and death is imminent, caregivers perceive the patient’s condition requires treatment in hospital.

Hospis Malaysia believes that the report reflects the want of the people. People want to talk about end of life care (90 per cent of those surveyed), and want their care to be in the community. However services available in the community are uneven with most concentrated in the major cities and are of variable standards.

In 2014 Malaysia was a co-sponsor to a World Health Assembly resolution calling for member states “to develop, strengthen and implement, where appropriate, palliative care policies to support the comprehensive strengthening of health systems to integrate evidence-based, cost-effective and equitable palliative care services in the continuum of care, across all levels, with emphasis on primary care, community and home-based care, and universal coverage schemes.”

“What steps have we taken to support our adoption of the resolution? Can we be assured that if we need palliative care today or in years to come, we will have access to it?” Dr Ednin asks.

Perhaps it is time to recognise that if palliative care is to be accessible to all in need, there needs to be the formation of a National Strategic Plan for palliative care which should be part of a plan for universal healthcare.

This plan should include a detailed strategy for implementation of access to care, funding, standards and guidelines, and training and education. This should be both transparent and accessible to all that may require palliative care.

* This is the personal opinion of the writer or publication and does not necessarily represent the views of Malay Mail Online.