A national strategy is needed to give patients with life-limiting illnesses access to palliative care, as currently more than 90% of Malaysians who require such medical services are unable to get it, says Chief Executive Officer of Hospis Malaysia, Dr Ednin Hamzah.
The Hospis Malaysia chief executive officer says there should be a collective move by the government, civil society groups and even the public to work towards enabling better access to palliative care.
According to the World Health Organisation, palliative care improves the quality of life of patients who suffer from life-limiting illnesses, as well as their families.
Dr Ednin says most of what has been done in the early years for palliative care was “very much a community-led initiative”, but in recent years, with a policy to train more palliative care specialists, a number of public hospitals now have such units.
“You are either going to wait until something happens or you get up and do something about it. The hospices and the community services that are available in this country at the moment, in many of the towns, are because people in the community decided that this is important.
“You have citizens trying to do their best in setting up organisations and societies to deal with this, but they can only do so much.
“Funding, a government with constructive and friendly policies, and greater resources are required to support the initiatives of these fledgling organisations,” he says.
Hospis Malaysia is a charitable organisation that provides free community palliative care services to patients with life-limiting illnesses, such as those suffering from cancer, organ failure or progressive neurological conditions.
The organisation is based in the Klang Valley and serves patients in the community it is located in.
According to Hospis Malaysia, about 2,000 patients are referred to its organisation every year. There are 25 other hospice non-governmental organisations that provide free-of-charge palliative care services throughout Malaysia.
However, for private palliative care, a specialist charges from RM250 to RM300 per home-care visit.
Dr Ednin says there are a multitude of issues preventing patients from getting palliative care.
“Most palliative care services need a referral from a doctor to enable the palliative care team to understand the underlying medical condition of the patient.
“So, the doctor first needs to recognise that a patient has a palliative care need, and then there needs to be a palliative care service in that location where the patient is,” he says.
However, he says the main barrier preventing patients from getting access to palliative care is one where there are no palliative care services offered or one where the patient has a palliative care need but the need was not identified by a doctor.
“The ones who are lucky are those whose doctors identify the need early and refers patients to a palliative care organisation to meet the needs of patients and their families.
“But this number is very small, thus it requires a whole framework of having adequate policies and guidelines so that resources, training and public education are organised into one system which is realistic and ‘implementable’.
“At the moment, it is all piecemeal. Those who shout the loudest may get it. Those who are less vocal or are not aware of what palliative care is, may not get it,” he says.
Dr Ednin adds that many of those who have heard about palliative care, including healthcare professionals, think that it is only for cancer patients.
“In a needs assessment done by us in 2016, we found that more than 65% of the palliative care needs of Malaysians are from patients not suffering from cancer – patients with cardiovascular diseases being the largest group,” he says.
Dr Ednin also laments the fact that many patients are not referred to palliative care at the onset of a life-threatening disease.
He points out that palliative care should not be introduced at the “end of a disease”.
He adds that the American Society of Clinical Oncology suggests that patients with cancer should be referred to palliative care within eight weeks of diagnosis.
“There is a huge amount of evidence of the benefits of palliative care. We try very hard to educate others, but there are those who are still not aware of or choose not to follow these clinical guidelines.
“In the end they refer patients very late, and the patients then do not benefit from the extra layer of support that palliative care can give them,” he says.
Dr Ednin also notes that countries such as Taiwan have laws that guarantee their citizens access to palliative care, while Singapore has a framework for a seamless partnership between the private and public sector.
Dr Ghauri Aggarwal, the head of the Palliative Care Department at Concord Hospital in Sydney, Australia who works works closely with Hospis Malaysia, believes that Malaysia does not have adequate palliative care clinicians, specialists, and nurses to serve the nation comprehensively.
“There is currently really no comprehensive training structure or consistent and well framed national strategies to ensure that the care offered includes patients in the hospital as well as when they go home – to make it as seamless as possible for the patient,” she says.
Dr Ghauri adds that it is not just rural areas that do not have access but also areas within metropolitan Kuala Lumpur itself.
“So I don’t think it is just rural – I think it might even be in your big cities where there isn’t adequate coverage. There is definitely inadequate palliative care services in the community, so when people are discharged from hospital and return home, they and their families are left very much on their own,” she says.
Dr Ghauri says there needs to be a more comprehensive national strategy that understands what the gaps are in palliative care.
“It is not good enough to just say ‘let’s just build’. We need to understand where the gaps are, the resource limitations, and what standards of care we want to achieve and how we get there.
“By doing that, you can plan for the future, so I think it is actually getting people together – people who are already running very good services working with the Health Ministry, universities, and non-governmental organisations.
“(They can) all come together to scope, look at gaps, and develop a national strategy for palliative care that is patient-centred and which has really good evidence-based practice as well,” she says.