A new year beckons although it is preceded by a slew of human tragedies both in Malaysia and the world over. Torrential floods and the tragedies affecting Malaysian linked airlines in these past months bring sadness and grief to many in our communities. The economic situation is also a concern to many this year.
So what does it mean to us within the palliative care arena? What will be the burden of disease that Malaysians will face this year? Are we dreading the possibility that we may have a serious illness? And if so, what is the level of capacity and standard of the medical services available in the country?
A report by the Economic Intelligence Unit on Healthcare Outcomes for 2014 saw Malaysia ranked 80/166 countries surveyed. What does this mean for us and for our loved ones if illness affects us in 2015?
The work of Hospis Malaysia
In the past year, Hospis Malaysia was referred 2,094 patients, an increase of 20% from 2013. The number of cases at any time under our care is usually between 400 and 450 patients spread across all sections of our society. Many cases are still referred at a very late stage.
Do Malaysians in need of palliative care have access to a standard of palliative care that could make a meaningful difference to their lives? In considering this, several questions should be asked.
In the descriptive context, what is the coverage of palliative care in Malaysia? What is the range of services available? These could include types of illnesses covered, hospital and community based care, government, charity or private facilities. Are there facilities for emergency care, either at home or in hospital?
Standards and competencies
Patients and families deserve the best care in their moment of distress. What are the competencies of staff and volunteers involved in care giving? What can patients and families expect? Increasingly, with greater awareness for palliative care in the country, we also have patients who have had contact with palliative care services in other countries.
Should the standards in Malaysia be similar to that in Singapore, United Kingdom, Australia, and other countries where there may be National Standards in Palliative Care?
Hospis Malaysia is a small organisation with limited resources. We will be 24 years old this year and we have grown significantly over the years.
During the first phase of our existence, the focus was to deliver the best care possible for our patients. We then realised that it was not possible for Hospis Malaysia to provide services to the whole of Malaysia. This should be a responsibility of the Ministry of Health.
Training and education
With the Ministry accepting and recognising palliative care in the early 2000’s, Hospis Malaysia turned its attention to training and education.
In 1998, Hospis Malaysia started teaching palliative care to medical undergraduates from Universiti Malaya. Our training programme now encompasses a busy programme that reaches out to many universities involving both under- and post-graduate doctors and other health care professionals.
Furthermore, through our collaboration with the Asia Pacific Hospice Palliative Care Network (APHPCN), palliative care workers from around the region now attend our series of eight yearly workshops.
Planning ahead
Not unlike many things (e.g: insurance), palliative care is something that is never important until it is needed.
Friday evenings are usually the worst for us when patients are being discharged from hospitals and care at home is needed. Without adequate planning, it is impossible to cater to a large group of patients immediately when there is already a high patient caseload.
Palliative care and Universal Health Coverage
In May 2014, Malaysia helped sponsor a resolution at the World Health Assembly in support of palliative care. Malaysia has also ratified many other relevant international conventions.
With regards to palliative care, the hope is that palliative care will soon be accepted as part of a universal health care plan, where governments have to guarantee access to all citizens regardless of ability to pay. For some countries, this is already implemented.
Increasing knowledge of palliative care
Some years ago, a patient advocate in a World Health Organisation meeting said: “How can I ask for something that I didn’t know exists?”
In Malaysia, many are not aware of what palliative care is and certainly even if they knew, may not be aware of where they could access it. And if there are no national standards of care in place, what is the guarantee that the standard of care provided is truly beneficial for patients and their families?
Palliative care symbol
Last year, Hospis Malaysia launched a campaign to introduce a symbol to embody palliative care.
Supported by patients and their families, well-known personalities and the Minister of Health, we hope that our community will soon be able to familiarise themselves with what palliative care is and more importantly, what it is NOT. Do visit, www.palliativecare.my to find out more.
For many, our New Year resolution may involve adopting life style changes to improve health. For a small number, the diagnosis of a serious illness may come this year. It would be good to be aware of what healthcare services are available.
If none are available in your area, do think about supporting either a community initiative or making sure the Ministry of Health is aware of your needs.
Find out more about the work of Hospis Mayalsia on the organisation’s website.
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