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This article first appeared in The Edge Malaysia Weekly on October 26, 2020 - November 1, 2020

Dr Sharon Choo Yoke Ling was just eight years old when she began to notice the local doctor visiting her home at regular intervals. Her grandfather was terminally ill and living out the remainder of his life at home. Needless to say, he was in a lot of pain and discomfort and required frequent house calls, which was why this memory of the travelling doctor has stuck with her all these years.

“I was struck by the compassion he had, not just for my grandfather, but for the rest of the family who were taking care of him. It was in his entire demeanour. I suppose that compassion is what stuck with me. It triggered my interest in medicine,” Choo tells The Edge.

Today, she is in the midst of completing her training to become a specialist in palliative medicine, under the mentorship of Hospis Malaysia CEO Dr Ednin Hamzah.

A native of Sarawak, Choo intends to return to her home state to practise palliative medicine. This would make her the state’s first palliative medicine specialist. There is currently no palliative care unit or specialist in any of the hospitals in the state, she says.

“I know many medical units in the state, such as oncology, have great staff and doctors who do their best to provide some form of palliative care for their patients. However, the fact is, these people have other primary responsibilities and they only administer palliative care as and when they are able,” says Choo.

I know many medical units, such as oncology, have great staff and doctors who do their best to provide some form of palliative care for their patients. However, the fact is, these people have other primary responsibilities and they only administer palliative care as and when they are able. - Choo

The need for palliative care will become more urgent as data from the Department of Statistics Malaysia projects that the country will become an ageing nation over the next decade. This means that by current projections, Malaysian citizens aged 60 and above will make up 15% of the total population.

At the time of writing, there are just 21 qualified palliative medicine consultants in the country, most of whom are engaged in public service with the Ministry of Health (MoH). Nearly all of them are posted to urban areas. However, the number is set to grow, with a further 21 palliative medicine trainees currently in various stages of training. Choo is one of those few.

Pain relief is a fundamental human right and good palliative care would address it. - Ednin

Her mentor, Ednin, is quietly optimistic about the future of palliative medicine in Malaysia and is particularly pleased about the increased awareness of and interest in palliative medicine as a sub-specialisation of medicine. However, he is mindful of the various battles he has had to fight over the last three decades, just to raise awareness of the importance of palliative care in medicine. Hospis Malaysia is the country’s first palliative services provider.

“Next year will mark 30 years of Hospis Malaysia serving the community, and we have certainly made important strides over the last three decades,” says Ednin. “When we started in the early 1990s, we dealt with just 100 patients a year. Now, we’re serving nearly 2,000 patients a year.

“We have much better resources now. But really, this is still a tiny number relative to the national need for palliative care.”

Far from the misconception about palliative care being about death and dying, I would suggest that it is in fact about life and living. - Lim

According to Dr Richard Lim Boon Leong, consultant in palliative medicine and head of the Palliative Care Unit at Selayang Hospital, a recent study by the MoH’s National Institutes of Health (NIH) estimated that roughly 130,000 patients a year require some form of palliative care. “The NIH arrived at this estimate by looking at annual mortality data, among other metrics. In fact, that number is projected to increase in tandem with the broader population,” Lim tells The Edge in a phone interview.

Like Ednin, Lim is a pioneer of palliative medicine and acknowledges the leading role that Hospis Malaysia and other organisations have played in raising awareness of this field. “Palliative care in Malaysia is a relatively new sub-specialisation. The practice was introduced in the country by hospice non-governmental organisations (NGOs) in Penang and Kuala Lumpur,” he says.

“Back then, palliative care tended to be seen as a kind of add-on, incidental, voluntary service. It was in the mid-1990s that the MoH saw the value of palliative medicine and gradually started developing palliative care units in government hospitals. It is not available yet in all government hospitals, but we do have a number of dedicated palliative care units through MoH’s network of hospitals.”

Lim is the national adviser for palliative medicine to the MoH.

Myths surrounding palliation

Given how large the need for palliative care is, the practice itself has taken a long time to gain acceptance among practitioners and the general public. Despite the growing number of specialists in the country, a rough estimate shows that only about 7,000 patients a year have access to palliative care provided by specialist units and hospice NGOs, says Lim.

There are a number of reasons for the lack of traction but arguably, the most pervasive is the myth that palliative care is only for the imminently dying. Unfortunately, to a certain extent, this perception has taken root in the healthcare community itself and inevitably gets passed on to the public, according to Ednin and Lim.

“I think to some extent, our (healthcare professionals’) aversion to introducing palliative options early on in a diagnosis stems from

societal and cultural taboos around the discussion of death and dying. Of course, in this instance, I’m only referring to patients who have been diagnosed with particularly aggressive forms of cancers or with other forms of life-limiting diseases,” says Ednin.

The perception has always been that palliative care is tantamount to giving up and that from that point onwards, the patient only has hours or days to live. “Yes, it did start out mainly as an end-of-life consideration, but the practice of palliative medicine has changed so much over the years that it is now seen as a speciality unto itself. We no longer just have to deal with patients who have hours or days left. They don’t necessarily have to be ‘terminal’ any longer,” he says.

The mindset has started to change and this is evident in the gradual increase in the number of patients that Hospis Malaysia caters for. But these patients come to the organisation via referral from their primary physician. This means the primary physician has to make the decision to introduce palliative care to a particular patient. Right now, this decision is being made far too late in the patient’s life.

According to Ednin, attending physicians just do not refer patients to palliative care in great enough numbers. Taking a cancer diagnosis as an example (cancer constitutes the bulk of referrals to palliative care in the country, according to data), physicians tend to focus on prevention, early detection, management and, finally, rehabilitation. In all of this, palliative care is noticeably absent from the discussion — something that Ednin and Lim are trying to change.

The evidence is increasingly demonstrating a need to introduce palliative care earlier in the patient’s life. A landmark paper, published in the New England Journal of Medicine in 2010, referenced a study involving two sets of patients with advanced lung cancer.

One group was assigned a combination of early palliative care and standard oncologic care while the other received only oncologic care. By the end of the study, the first group reported better quality of life and, in fact, went on to live roughly three months longer.

“The data demonstrates that if palliative care is introduced early enough, not only does it improve the patient’s symptoms and overall quality of life, it actually extends survival rates in terms of months,” says Ednin.

“As doctors, we’re trained to do one thing, and that is to attack the cancer. But what we don’t always consider is the possibility that those with particular forms of advanced

cancer would actually have their lives cut short by the aggressive treatment, rather than the disease itself. Sometimes, we need to consider that not running aggressive treatment would actually extend the patient’s life.”

Another myth about palliative care is that it is only ever useful for cancer patients. This is simply not true, as anyone suffering from a debilitating, life-limiting disease would benefit from palliative care, he adds. “At the moment, only 10% of our referrals are for non-cancer diseases. Patients with other diseases are simply not referred.

“This is a real problem because according to our own internal needs analysis, the single biggest group in need of palliative care are those with serious and debilitating cardiovascular diseases. Patients with kidney failure are another major unmet need.”

This brings into focus another peculiarity of the healthcare profession as a whole: with these kinds of life-threatening diseases, staff often — and very rightly so — need to constantly measure dozens of physical and health-related metrics. This monitoring and subsequent treatment or curative functions are undertaken by highly skilled and highly technical professionals.

“Sometimes, people with these very high-end skillsets see death, which is a natural part of the human condition, as a complete and utter failure of medicine. And people like these aren’t always able to accept failure,” says Ednin.

This, in turn, could explain why patients are only ever referred for palliative care when they are at the very last hours or days of their lives. Lim echoes this point, adding that the public tends to view ongoing medical treatment and the administering of palliative care as mutually exclusive.

“I don’t expect the public to have expert knowledge of course, but there’s this idea that palliative care is all about death and dying, so it is only necessary when the patient is breathing his final few breaths,” he says.

“This ends up creating a lot of negativity around the whole field of palliative care, so much so that sometimes, family members turn it down. As a result, many patients end up being referred to us so late, after suffering for months, when they only have a week or two left.

“This is such a tragedy because there would have been a lot of good living that just wasn’t done. Far from the misconception about palliative care being about death and dying, I would suggest that it is in fact about life and living.”

Another myth has to do with the issue of pain management. Specifically, the use of morphine to treat pain is a crucial but controversial aspect of palliative care. Lim and Ednin believe patients who are already in desperate need of palliative care are done a further disservice when they are not given adequate pain medication.

“Pain is the biggest concern that our patients have, other than fatigue,” says Ednin. “Unlike many countries, we actually have good rules and regulations [covering the use of medication for pain relief], and our healthcare professionals have access to morphine and other strong painkillers. For example, I am empowered to give as much morphine or similar painkillers to any patient whom I believe requires it.

“However, many doctors are not properly trained in the area of pain management. They know the various diseases and all the treatment modalities, but when it comes to pain management, they administer it in such small doses that the medication isn’t effective to begin with. And then, when patients very

reasonably ask for more, healthcare professionals mistake this for the beginnings of addiction. Pain relief is a fundamental human right and good palliative care would address it.”

This misconception among healthcare professionals inevitably makes its way to the public consciousness, and people in general become very reluctant to consider the use of pain medication. Even the nomenclature — the use of the word “drug”, for example — has a very negative connotation, with people mischaracterising morphine, which is supposed to be relieving, as a harmful substance.

For his part, Lim has no qualms administering morphine to someone who is suffering from moderate to severe cancer pain. “Morphine, when administered by those who know what they are doing, does not cause addiction and it certainly does not shorten lives.”

The fear of analgesics such as morphine is such a problem that some families are known to have deliberately prevented access to the medication, he says. “It is a real tragedy because the family somehow would rather see the patient groaning in pain than to give them this medication, which may make the patient sleepy but, ultimately, a lot more comfortable.”

Even more egregious is the fact that sometimes, family members mistakenly associate the administering of morphine with the patient dying a few days later. They then go on to spread this myth when they relive the experience with others.

“This is just not true. Oftentimes, the patient is referred for palliative care so late in their illness that the expected survival is only about a week or two. Family members somehow aren’t able to recognise that it was the disease, and not the painkiller, which took the patient’s life.”

The long-term prognosis

Looking at the long-term development of palliative care in the country, Lim is hopeful that over the next decade, every major state hospital will have at least one palliative care specialist and a dedicated palliative care service. To this end, he cites the National Palliative Care Policy and Strategic Plan (2019 – 2030).

The plan, launched in November last year, is meant to serve as a blueprint that will increase awareness of the importance of palliative care, in addition to dispelling the myths surrounding the service. Lim served as the chairperson of the committee that drafted the plan.

“Ultimately, what we want to do is build accessibility and equity into the practice of palliative care. We want to ensure that everyone who requires palliative care will have access to it. It won’t just be the urban hospitals that provide the service,” he says.

Concurrently, the plan is an attempt to deliver a certain standard of palliative care without causing the patients and their families to fall into financial hardship, he adds.

According to National Cancer Society Malaysia medical director Dr Murallitharan Munisamy, the Japanese experience provides insights into how palliative care could be scaled up and delivered across the country. The solutions, however, cut across medical, policymaking and political considerations and thus, would require significant political will to push through.

Right now, our social security infrastructure is not taking into account future needs and priorities for when we become an ageing nation. - Murali

“In Japan, working adults in their forties are required to pay into a mandatory, long-term care insurance scheme. The country’s uniquely long-lived population means that the government has had to think of ways to fund the provision of both long-term — and subsequently, palliative — care for a relatively large segment of its citizens,” says Murali.

As at 2015, the system (which was launched in 2000) provided benefits to more than five million people aged 65 and older. Japan has made impressive strides to not only make these services available at a low cost but also easily accessible, Murali adds. For example, each district in the country has at least one or two long-term care facilities that are equipped to provide both walk-in as well as in-patient services.

“In Japan, where people regularly live beyond 100 years old, even the older demographic is broken up into a number of additional classes. For example, those in their sixties or older, and are still active and mobile, are able to take a specific bus service that drops them off at their local facility,” he says.

“These ‘younger’ visitors are given meals and entertainment, and are free to participate in a host of activities, all of which are funded by the long-term care insurance programme. It keeps them active and provides them with regular opportunities for social interaction.”

These “younger” senior citizens get to use these facilities as daily visitors, free of charge. Once they grow older and are no longer able to live on their own, these facilities will be able to take them in as live-in residents for the long term.

These older and more infirm patients are housed in special, higher-resource wings that are capable of caring for live-in patients for the long term. It will be here that they receive regular palliative care, if and when they require it.

“In all of this, the Japanese have been able to cater for broader social needs in quite a brilliant fashion. These care facilities also function as day care centres for schoolchildren. In Japan, where families tend to be small and both parents work, children can be bussed to these facilities, where the relatively younger and more active senior citizens care for them for a few hours a day while the parents are at work,” says Murali.

“Studies have shown that older people are objectively happier and healthier when they come into contact with smaller children. Meanwhile, the children are taken care of and the economy benefits from having more people working full-time and participating in the job market.”

Looking to Malaysia, he says the government needs to consider carving out a certain portion of Employees Provident Fund (EPF) or Social Security Organisation (Socso) contributions and setting it aside to build a national network of long-term care facilities, which would eventually provide palliative care services to those in need. “Right now, our social security infrastructure is not taking into account future needs and priorities for when we become an ageing nation.”

Having said that, Murali is cautious about introducing mandatory contributions. “I think it’s important that we take into account people’s increasing propensity to work in the gig economy for the long term. These people, as well as those who are in lower income brackets, tend to have immediate financial needs and less disposable income. Their livelihoods may be impacted if they were required to contribute to some kind of long-term care or insurance scheme,” he says.

“At the same time, we should be mindful of the fact that the pool of active contributors is pretty low, relative to the overall population. In order for any long-term care funding scheme to be palatable to the public at large, it may have to be introduced with an ‘opt-out’ option. This means all working adults would by default be required to pay into this scheme but would be able to opt out of the scheme if they choose to do so.

“In this scenario however, if they choose to opt out, they will eventually lose access to these services or perhaps be required to pay for it.”

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