ABOUT 40 million people worldwide are in need of palliative care every year with 78 per cent comprising those from low and middle income countries, according to the World Health Organisation (WHO) in 2018.
However, only some 14 per cent needing such care globally have accessed service due to overly restrictive regulations for opioid analgesia — morphine and other essential palliative care medicines — in many countries.
Thus, patients cannot obtain the much needed pain relief and palliative care they need.
WHO defines palliative care as an approach towards improving the quality of life of patients and their families facing problems associated with life-threatening illness.
This is done through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of symptoms such as pain and other problems in terms of the physical, psycho-social and spiritual.
The three main barriers identified by WHO as restricting the general public access to palliative care are: National health policies and systems that do not include palliative care at all; limited or non-existent training on palliative care for health professionals and inadequate access to opioid pain relief.
This is true of Malaysia. Though palliative care had been formally introduced in the country in the early 1990’s — some three decades ago — the development and delivery of its services in Malaysia is still very much in its infancy.
Hospis Malaysia chief executive officer Dr Ednin Hamzah simplified the definition as treating patients in four key areas – the physical, social, psychology and spiritual.
“When you’re ill, your doctor tends to concentrate on the disease process and will usually order investigations like X-ray, blood tests and prescribe whatever else to try to make you recover from the disease. But the doctor virtually never deals with other problems,” he said.
Hospis Malaysia is a charitable non-government organisation, founded in 1991, to provide professional community palliative care to those with life-limiting illnesses such as cancer, AIDS and organ failure free-of-charge and it’s currently the largest community care service in the country.
According to Dr Ednin, more often than not, social issues arising from suffering an illness are not being paid enough attention to by medical professionals.
“For example, when a breadwinners contracts a serious illness, he or she will lose his or her role within the family structure — with detrimental effects on their self-worth, leading them to question their purpose in life.
“Medicine has become quite an egotistical specialty — we think medicine cures but honestly (if we think about it), what does medicine really cure? Not a lot.”
He pointed out that most illnesses that may be curable were usually infectious diseases such as chest or other infections but most chronic illness like diabetes, high blood pressure or heart diseases were not curable but could only be controlled and closely monitored.
“When you recover from one disease, it only makes you well enough to get another disease. Somewhere along the line, you will die of a disease, so the curative framework does not really work.
“Furthermore, the objectives of doctors and their patients often do not match because doctors usually focus mainly on the disease itself whereas their patients may have other more pressing concerns.”
Dr Ednin shared that most patients suffering from chronic diseases would want to be as comfortable as possible in their current state and if undergoing certain treatment caused them more suffering or jeopardise their quality of life, some may request to stop treatment as they saw no point of continuing.
Doctors sometimes did not know when to give up and the treatments themselves could cause more problems, he said, adding that ultimately, quality of life was often the most important factor in the decision-making process for patients suffering from chronic illnesses.
“Most patients are less concerned with the disease process itself but more about how they will burden their loved ones or how well they can cope with the changes the illness brings to their lives.
“And if you’re sick, you’re not the only one affected, your family is affected as well. They (family members) may not be able to work, they cannot concentrate on their job, they cannot enjoy holidays and whatever else.
“My ideal situation is that the doctor would be more interested in how the illness affects patients, and work with them to improve treatment outcomes and make their lives better.”
For these reasons, Dr Ednin believed palliative care should be regarded as a unique set of medical field where the needs and problems of both patients and family members are being looked into to ensure the best outcomes for both parties.
“When I see a patient, I need to see the family as well. And I need to see how they’re going to function because so many times when somebody is sick, the whole family suffers,” he said.
Understanding the patients and how the illness has affected them are crucial in palliative care before a plan of action can be designed for everybody involved, including the patients’ families.
“Often, when a patient is very sick, he or she would tell you how much the sickness is affecting their family and becoming a burden to them,” Dr Ednin added.
It is in such a stressful situation that palliative care professionals need to step in to assist patients and their families to journey together and lighten their load.
Dr Ednin’s views were shared by Associate Professor Dr Cynthia Goh, senior consultant in the Division of Supportive and Palliative Care at the National Cancer Centre Singapore and chairman of the Asia Pacific Hospice Palliative Care Network.
Dr Goh, a recipient of many prestigious awards, including the Louis Feraud Les Honours 1995 for her contributions to hospice care in Singapore, said palliative care is now recognised as one of the essential elements in managing non-communicable diseases such as cancer, heart disease, stroke and dementia.
“At the moment, universal health coverage is the rally cry of the World Health Organisation as one of the sustainable development goals that we all want to reach by 2030 and palliative care is included in the package of universal health coverage” she said.
A human right
In fact, both Dr Ednin and Dr Goh felt strongly that equitable access to palliative care for all patients who needed it should be seen as a human right.
According to Hospis Malaysia’s Palliative Care Needs Analysis 2016, four out of every 10 Malaysians will require palliative care at the end of their life and the two largest groups of adults requiring such care are those suffering from cardiovascular diseases and cancer.
However, currently only about 10 per cent of Malaysians who need palliative care actually receive the service.
“We’ve a right to live and die without pain. And yet in so many countries in our region, many people are dying in pain because we don’t have the drugs or the service,” Dr Goh said, pointing to the irony of Myanmar which used to impose tight control of drugs like morphine for people dying of cancer, but yet exported massive amount of illicit drugs, including morphine, to other parts of the world.
Thankfully, the prospects in Myanmar are now better ever since Asia Pacific Hospice Palliative Care Network embarked on healthcare projects in the country. A government-owned pharmaceutical factory had consequently been set up to produce cheaper drugs, including morphine, to government hospitals.
“Myanmar now has a legal source of morphine, produced by the government factory and every patient, seen at the cancer centres in the governmental hospitals in Myanmar, will have access to morphine for free if they need it, provided that the doctors know how to prescribe it,” Dr Goh noted.
According to Dr Ednin, the situation in Malaysia is slightly different in that there is ready access to morphine for pain control in the health system.
Unfortunately many doctors do not know how to prescribe the drugs. There is still a lot of misconception both within the medical profession as well as among the public regarding morphine which hinders its effective use medically in Malaysia.
He explained pain was often treated as a symptom but not a problem in itself and there was a lack of pain specialists in the country’s current healthcare system to deal with the pain faced by patients.
“Morphine as an effective pain control allows people to live as normally as possible. We relieve their pain and they can go back to work or look after their children. We all know of patients who would not be working if they didn’t have their pain well-controlled.
“Just like if you are diabetic, you take your insulin once or twice a day, nobody says insulin is addictive because you’re diabetic and you need your insulin. But when you have cancer pain, you take morphine a few times a day and people say you are addicted.
“When you have chronic pain, you need medication to control it but that doesn’t mean you’re addicted to the medication. If you don’t take it, you get pain. If you take it, your pain goes away. Same thing. If you don’t take insulin, you blood sugar would go up.”
Dr Ednin lamented it had been an uphill battle, trying to change people’s mindset regarding the appropriate use of morphine for pain relief, despite considerable efforts in the area with on-going education and dialogues.
Regulatory, not restrictive
Dr Goh, meanwhile, stressed the role of the government was to regulate the use of drugs such as morphine and not formulate restrictive regulations that would prevent people from accessing these drugs.
“When we started work in Sri Lanka, morphine could only be prescribed for seven days. Now, they can be prescribed for one month which is more reasonable, especially for patients living far away so that they can come back monthly for the medication,” she disclosed.
Although there is no prescription restriction on morphine in Malaysia, Dr Ednin pointed out that about 20 per cent of the country’s main and district hospitals were found to have limited supply or did not have the stock as doctors seldom prescribe them due to lack of knowledge or misconception regarding morphine use.
“In India, many people committed suicide because they did not have access to the drugs to relieve their pain and cancer pain sometimes can get that bad,” he said.
Added Dr Goh: “I mean we all looked after patients who attempted suicide before because their pain was just so bad.
“To us, morphine is life giving. It allows people to go back to work and carry on with their normal life again.”
She stressed that unlike western countries such as America which is experiencing an “opioid crisis” due to lax and inappropriate prescription of opioids such as morphine which raises severe public health and social welfare issues, the scenario in Asia Pacific region was totally opposite.
Here, doctors are not prescribing opioid drugs often enough to relieve the pain of their patients.
The misuse of opioid prescription, including legal painkillers such as morphine and illegal drugs such as heroin and synthetic opioids like fentanyl, costs the US economy $78.5 billion in a year alone while more than 130 people died of overdosing on opioids every day in the US.
On a another note, both Dr Goh and Dr Ednin stressed medical use of marijuana had not been proven effective in managing pain despite it being approved in many countries such as Canada, Australia and Germany.
According to Dr Goh, a task force has been formed to advise governments on the use of medical marijuana and the investigation results on the effectiveness of medical marijuana had been negative thus far.
“However, they’re still looking for evidence — and we’re still doing trials.
“ We’re trying to see whether it does any good at all. But up till now, we have not been able to find any good reason why it is an acceptable drug,” she noted.
Dr Ednin said he really didn’t understand why there was so much interest in medical use of marijuana versus the other effective analgesia already proven to work.
Much work remains to be done by countries around the world, including Malaysia, to ensure patients have access to palliative care when they need it.
Ageing demographics in developing countries, coupled with rapid urbanisation and increasing unhealthy lifestyle among the people, are signs a country’s healthcare system must be prepared to cope with the rising rates of chronic disease among its people.
In 2010, The Economist Intelligence Unit (EIU) developed The Quality of Death Index to rank the availability, affordability and quality of end-of-life care in 40 countries.
This was later expanded to 80 countries in its latest published index in 2015 to take into account global developments in palliative care in recent years.
Key findings from EIU research indicated that the United Kingdom ranked the highest in the Quality of Death Index (QDI) in 2015 due to its comprehensive national policies and the extensive integration of palliative care into its National Health Service.
According to the 2015 findings, the top 10 countries with the highest QDI were the UK, Australia, New Zealand, Ireland, Belgium, Taiwan, Germany, Netherlands, the US and France while Singapore and Malaysia ranked 12 and 38 respectively.
The research also discovered that rich and developed nations tended to rank higher in the index as general income level was a strong indicator of the availability and quality of palliative care.
“Instead of viewing palliative care as a cost centre, as is often the case in the US, greater recognition is needed of the economic benefits of palliative care in terms of reduced hospital stays and avoided emergency room visits,” the EIU reported.
According to Hospis Malaysia’s Palliative Care Needs Analysis 2016, the key barriers to the development of palliative care in Malaysia were the lack of national policy, shortage of trained manpower, lack of financial support and poor demand for professional palliative care training.