Palliative Care Should Begin Early, Not At Life's End – Experts

Many people also mistakenly believe that palliative care is only for those who are “waiting to die”, a misconception that experts say must be addressed urgently.

According to the World Health Organisation (WHO), palliative care is an approach aimed at improving the quality of life of patients, and that of their families, facing life-limiting illnesses, placing the service as a fundamental human right.

In Malaysia, there were only 34 palliative care specialists as of October 2025, and the government aims to increase the number to 50 within the next two years to meet growing demand.

 

 

Explaining the role of palliative care, Dr Liew Kean Yew, a palliative medicine specialist at KPJ Ampang Puteri Specialist Hospital, said it is a specialised medical approach focused on improving patients’ quality of life, particularly by easing pain and discomfort.

Contrary to common belief, he said palliative care is not limited to cancer patients, but is intended for anyone living with serious or chronic illnesses, including heart disease, kidney disease and liver failure.

“Many people think palliative care is only for end-stage treatment, but in reality, it should ideally begin as soon as a patient – for example, someone with cancer – starts treatment for the disease. In other words, palliative care and oncology treatment should go hand in hand.

“For instance, a patient undergoing surgery, chemotherapy or radiotherapy should also be encouraged to receive palliative care to help manage pain caused by the cancer,” he said in an interview with Bernama.

In fact, patients should ideally receive palliative care immediately after diagnosis, even if the illness is still at stage one.

“For cancer patients, don’t wait until the disease reaches an advanced stage, such as stage four, before seeking palliative care,” he advised.

 

 

Dr Liew said palliative care services in Malaysia are generally divided into two categories: hospital-based care, where hospitalised patients can undergo palliative treatment if referred to a palliative specialist; and home-based care, commonly known as hospice care.

“In Malaysia, the hospice concept differs slightly from other countries. Here, hospice care refers to palliative care provided in the patient’s home through regular visits by doctors and nurses. These services are usually managed by non-governmental organisations (NGOs) known as hospices,” he said. (For more information, please visit https://malaysianhospicecouncil.com/)

He explained that besides pain management, palliative care also focuses on improving patients’ quality of life through four main domains: physical, psychological, spiritual and social well-being.

“From a physical perspective, treatment is aimed at controlling symptoms such as pain and shortness of breath, either through medication or non-medicinal approaches.

“Psychologically, patients with serious illnesses often experience anxiety, depression and emotional stress. The palliative care team helps address these issues through counselling and psychological support.

“The spiritual aspect refers to whatever gives meaning and purpose to a patient’s life. It is not necessarily linked to religion, but rather to personal values and beliefs. Social care, meanwhile, involves support extended to family members. Serious illness affects not only the patient but also the entire family,” he said.

On pain management, Dr Liew said specialists typically follow a “pain ladder” approach based on the severity of a patient’s pain.

“For stage one pain, which involves mild pain, patients are usually given basic medication such as paracetamol. Stage two refers to moderate pain, where stronger medication such as tramadol may be prescribed if the pain worsens. For stage three, or severe pain, patients may require stronger medication such as morphine,” he said.

 

 

Over the past few years, the Ministry of Health has drafted and developed the Advance Care Planning (ACP) guidance to improve the delivery of health services.

Dr Liew said ACP is a process of discussion and documentation that allows patients to express how they wish to be treated in the future, especially when they are no longer conscious or unable to communicate their wishes.

“These conversations should involve healthcare professionals as well as family members. In this regard, palliative care specialists play an important role in helping patients go through the ACP process so their wishes are respected and can be carried out when the time comes,” he said.

Dr Liew, who was also involved in developing the ACP guidance, said the framework is crucial in safeguarding patients’ dignity and rights.

“Every individual has the right to decide how they wish to be cared for and treated. That is a basic human right, which is why this programme is so important.

“Secondly, when patients express their wishes and treatment preferences early, it helps reduce stress and the emotional burden on family members when facing serious illness in the future,” he said.

Sharing an encounter with a patient, Dr Liew said the 48-year-old woman, who was diagnosed with gallbladder cancer, had earlier undergone treatment, including chemotherapy, at an oncology hospital. Unfortunately, her condition did not improve. The cancer continued to spread and she became increasingly weak.

“She later came to the hospital (where I work)… she was then suffering from severe pain and was referred to me.

“During the final moments of her life, I helped manage her cancer pain by providing the necessary medication,” he said, adding that he also helped the patient and her family create meaningful memories, including planning the engagement ceremony of one of her children before she passed away.

“These are among the things we commonly do in palliative care.”

 

 

Meanwhile, consultant palliative care specialist Dr Eunice Leong Yoke Yeng of Sunway Medical Centre Velocity here said palliative care, in general, aims to provide comfort to patients, particularly when curative treatment is no longer suitable or effective.

Because of this, she said, many people assume palliative care is only for patients who are critically ill or nearing the end of life.

This misconception often arises because patients are usually referred to palliative care only when there is no longer any hope of recovery and death is imminent.

In reality, she stressed, palliative care is not about waiting for death, but about easing the burden carried by patients and their families because in many situations, when a person develops a life-limiting illness, the entire family is also affected.

“We often hear about burnout among caregivers. For example, looking after a bedridden patient with dementia or end-stage cancer requires enormous commitment, often involving more than one caregiver around the clock.

“When family members become caregivers themselves, it is an immense challenge to sustain that role for weeks or months. It becomes physically and psychologically exhausting, and some family members are even forced to quit their jobs to become full-time caregivers. A lack of knowledge and skills in caring for loved ones at home, as well as worries about what to do in emergencies, are very real concerns for families,” she said.

As such, palliative care exists to support both patients and families dealing with life-limiting illnesses, especially during the final stages of life, including equipping families with basic caregiving knowledge and skills.

She added that misconceptions surrounding palliative care have also resulted in many patients not receiving the symptom management and supportive care they need.

 

SHORTAGE

 

In the context of cancer alone, Malaysia records around 40,000 new cancer cases each year, but the figure is expected to more than double to 100,000 by 2040, according to the Global Cancer Observatory.

The situation highlights the urgent need for stronger palliative care services in Malaysia, which continues to face a shortage of specialists.

Commenting on the issue, Dr Leong said greater awareness and interest in palliative care are urgently needed among healthcare workers themselves.

However, she noted that interest in the field remains low because the training requires intense commitment and strong mental resilience, which are essential in palliative care practice.

“This may be one of the reasons for the shortage of palliative care specialists. Nevertheless, the demand for palliative care in Malaysia is increasing as the country moves towards an ageing population. The current number of palliative medicine specialists is clearly insufficient to meet future needs,” she said.

To address the growing demands on the healthcare system, Dr Leong called for a systemic solution through structured training programmes aimed at developing doctors with basic palliative care knowledge.

“This is to ensure that everyone who requires basic palliative care, such as pain management, has access to these services. At present, exposure to palliative care in undergraduate and postgraduate medical programmes remains very limited, resulting in low awareness of the field.

“Awareness can be improved through medical education by integrating palliative care modules into medical curricula to equip future doctors with the knowledge and competency to provide basic palliative care,” she said, adding that access to palliative care is often hindered by the limited number of specialists available.

She believes that by developing doctors with basic palliative care knowledge through structured training, doctors from various medical disciplines would be able to provide basic palliative care within their respective specialties. This will also improve basic palliative care, including cancer pain management, in hospitals and communities.

“To expand community access to these services, domiciliary palliative care (home-based care) involving family medicine specialists will be an important step forward. They are key stakeholders in improving access to palliative care, particularly in rural areas,” she said.

Offering words of encouragement to those living with life-limiting illnesses, Dr Leong said palliative care is not about waiting for death, but about helping patients live the life they want until death arrives naturally.

“(It’s about) adding life to days, not days to life, when curative treatment has become futile and causes more suffering to the patient.

“‘You matter because you are you, and you matter to the end of your life,’” she said, quoting Dame Cicely Saunders of England, who pioneered hospice care.