We have a right to palliative care
TOMORROW is World Hospice Palliative Care Day. The day was initiated in 2005 by the World Hospice and Palliative Care Alliance (WHPCA) as a global day to recognise the need for better care of people with life limiting illness and urging countries worldwide to take appropriate action.
The World Health Organisation defines palliative care as whole person care of patients with life threatening illnesses along with support for their families. The aim is to reduce needless suffering be it physical, psychosocial or spiritual, thus improving quality of life. Such care can be given in patient’s homes, health centres, hospitals and hospices. Basically, palliative care is just good medical care so it can be delivered by any health professional, with specialists available for difficult or unusual problems.
A significant achievement of the WHPCA was to get the 67th World Health Assembly in 2014 to give due recognition to “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”.
How is Malaysia faring? Palliative care in Malaysia was started from the ground up in 1992 in Penang and Kuala Lumpur by NGOs as professional medical care in the homes of people who had advanced illnesses; the care was offered as a free service. This model is now available in about 20 towns around Malaysia while since 1998 some government hospitals have inpatient palliative care services.
How many people need and are getting palliative care? In Malaysia the estimate is 100,000 persons annually. Of these, currently, only about 10,000 get care either in their homes or in palliative care units of government hospitals. Can this huge gap be redressed?
The answer is yes if there is recognition of the need for palliative care by all health providers in the country and that the thrust of care should be in the homes of patients. Thus palliative care should be structured as part of a primary care-led healthcare delivery system, as it is in all developed countries. Primary care as point of first contact with the healthcare system will be comprehensive, continuous and coordinated. This is yet to be implemented in Malaysia.
Another reason why we should really embark on primary care is the growing need for long term care due to the rise in noncommunicable diseases resulting from unhealthy lifestyles that are, sadly, almost a norm in the country; there is also an ageing population to factor in. It will obviously take decades before a change to healthy lifestyles will reverse the situation to lead to a reduction of diseases.
Simply put, this means that most of us living now will live to our 80s but at the same time very few of us will be in good health. Hence, as individuals and families we have to learn to look after ourselves while the state chips in by extending professional health support to homes. Most people when ill want to be at home. The family in turn wants to care for their loved ones at home and can be taught basic nursing care to do so. There is ample evidence that this is the more efficient way to use whatever resources we can muster for healthcare in the country.
The theme for this year, “My right. My care”, is appropriate for it is time for the public to call again for good care especially when a person is seriously ill. All of us, when ill, will have similar expectations – of a cure, or to get better, and that whatever happens, we will get good care. Good care is indeed a human right.
The other side of the coin is the acceptance by all that every right comes with a corresponding responsibility. Hence all of us must strive to be healthy, thus helping to reduce diseases. Doing so will be the bonus as we achieve what we are wired for, a long and healthy life.
DATUK SERI DR T. DEVARAJ Vice Chairman, Penang Hospice Society