What can we do to change this situation? To shed some light on this, Hospis Malaysia is at the forefront of raising public awareness on palliative care across the country.
This year, in conjunction with the organisations 25th year anniversary, Hospis Malaysia launched the first ‘National Palliative Care Awareness Week’ themed ‘Palliative care is everybody’s business – Why?’
The week ran from 20-24 April 2016, and included a public exhibition aimed at raising awareness of palliative care.
As a leading palliative care service provider in the country, and a strong advocate for better access and improved standards in this medical speciality, Hospis Malaysia produced a report: ‘Palliative Care Needs Assessment: Malaysia’.
The report reveals that four out of ten 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.
Addressing a gap of publicly available information, the report attempts to estimate the need for palliative care in the country using a WHO framework. Key findings of the study were shared with the public at the exhibition. The full report can be downloaded from hospismalaysia.org.
Dr Ednin Hamzah, CEO of Hospis Malaysia and co-author of the report, said: “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-limiting 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.”
The awareness campaign further aimed to exhibit how quality palliative care could improve the quality of life of patients and families of those living with life-limiting illnesses to both the general public and healthcare providers.
“If you were seriously ill, what’s important to you?” asked an eight foot high chalkboard demanding the attention of passers-by.
Dr Sylvia McCarthy, Hospis Malaysia Medical Director and co-author of the report , said: “Asking such questions could be very helpful to get you to start thinking about the type of care and quality of life you would want for yourself and also to identify what you may not want.
“It also means talking about this with those close to us. Sometimes, even though we think we know what someone else thinks and believes, we really do not know until we ask.”
“This was why we encouraged partakers to take a photo of themselves with their answers and share it on social media or with their family and friends,” she explained.
“Understandably, these questions may sound difficult to discuss now, when the time for decisions is still in the future.
“However, studies show that they are harder to discuss when someone is seriously ill, emotions are high, and decisions must be made quickly,” Dr Sylvia added.
“The majority of partakers reflected the desire to be with family and close friends, to be cared for at home and to be free from pain and suffering as important to them if they were seriously ill, which echoes the results of the Needs Assessment report. Services available in the community are uneven with most concentrated in the major cities and are of variable standards.”
A feature of the awareness campaign involved a photo exhibition by award-winning photographer, SC Shekar who documented Hospis Malaysia’s clinical team together with the patients and families under their care.
The collection of photos imprinted a powerful message – though these patients and caregivers were faced with the burden of a life-limiting illness, they seemed to be well supported in their own home, their pain and other symptoms managed, their dignity preserved and against the odds, experiencing quality of life.
“A palliative care approach is beneficial for anyone with a life-limiting illness, regardless of age or condition and also supports their family and caregivers,” commented James Tan, a banking officer, on what he had learnt from viewing the exhibition. “Similar to seeing any other medical speciality, effective palliative care needs to be provided by a trained palliative care clinician.
“For the best possible outcomes, palliative care should start as early as possible and is suitable for a number of years, not just the weeks and days at the end of life.”
You can find out more about Hospice Awareness Week in Malaysia, and download the report from the exhibition on the Hospis Malaysia website.
Missed the exhibition? Save the date! The ‘Palliative Care Awareness Exhibition’ will be coming to Bangsar Shopping Centre from 13 -17 July 2016.