Time to discuss right to die? Maybe we should talk about palliative care (or its lack of) in Malaysia first

Syed Jaymal Zahiid
Hospis Malaysia CEO Dr Ednin Hamzah speaks to a Malay Mail reporter during the interview with the Hospis Malaysia CEO at his office in Taman Sri Bahtera Cheras, November 11, 2019. — Picture by Hari Anggara

KUALA LUMPUR, Dec 12 — A patient with stage four pancreatic cancer is suffering chronic pain. The tumour has reached his lungs. 

For the past four months, he has been bed-ridden. The doctor had told him upon diagnosis he only had half a year to live.

With the pain unbearable, he asks for a lethal prescription to end his life.  

Such a scenario is not as uncommon as we would like to believe. 

But until today, the global medical community remains divided about assisted suicide. The reasons are, understandably, myriad; the issue involves ethical, legal and moral questions.

To Hospis Malaysia, a non-governmental organisation that specialises in caring for the chronically sick or terminally ill, assisted suicide encapsulates an oversimplified outlook towards an extremely complex issue.

For Hospis Malaysia chief executive officer Dr Ednin Hamzah, any attempt at an informed discourse on assisted suicide or euthanasia cannot take place without first discussing the preconditions that drive these patients to want to die: 

Have doctors or hospitals done enough to alleviate their pain?

“Reasons (justified) for assisted suicide are usually these three,” Dr Ednin explained in an interview with Malay Mail recently.

“First is unbearable suffering, it might be physical suffering like pain; second, loss of meaning, I am terminally ill so I have no worth and no value of life anymore; third, I am sick, I can’t do anything, I am a burden to others.”

“But why don’t we look at our pain management?”

Rubbish pain management?

If anything, palliative care experts like Dr Ednin feel the debate on whether the chronic or terminally ill should have the right to decide the manner of their deaths casts a spotlight on how the country cares for its sickest population.

Malaysia’s palliative care sector, according to him, is still underdeveloped and underfunded, with public hospitals still lacking experts specifically trained to care for patients with or without advanced medical conditions, while most Malaysians cannot afford those in private institutions.

And ensuring public hospitals have adequate and affordable care professionals who specialise in treating and managing pain is crucial to the debate on assisted suicide.

Dr Ednin said palliative care experts ensure dying patients in pain suffer as little as possible, and by doing so, disincentivises them from viewing suicide as a painless solution to their condition. 

“In Malaysia, our pain management is rubbish,” he asserted.

“The indicator or benchmark of cancer pain management is the use of morphine. If you look at the International Narcotics Control Board (INCB) data, Malaysia ranks somewhere down there in terms of our use of morphine.”

The INCB ranking placed Malaysia among the highest countries with a chronic morphine abuse problem resulting from overuse in pain treatment, said the Hospis Malaysia CEO.

“For medication with cancer, our pain management is not good enough. But do we even bring up that issue? I’ve never seen that raised in the media.”

In a 2015 report published as a guideline for the use of opioids in treating chronic pain, the Malaysian Association for the Study of Pain noted the worrying increase in the use of drugs like morphine to treat patients with non-chronic cancer pain, leading to misuse and addiction.  

Dr Ednin suggests this increased use of morphine underscores the problem with public healthcare’s “mechanical” approach to pain — by treating a condition with complex and layered components only with substances that target the physiological symptoms of pain, but exclude others.

Pain also has mental and social dimensions, the Hospis Malaysia CEO explained. In the case of terminally ill patients, their condition often induces depression and in many cases has been found to influence patients’ thoughts on suicide.

But most “healthcare settings” lack clinical psychologists who can diagnose and treat depression among the chronically sick or terminally ill, said Dr Ednin.

Lacking clinical psychologists

And without a trained psychologist to make the right prognosis, ascertaining if their request for assisted suicide was done rationally would be impossible, an argument long held by opponents of euthanasia or physician-aided dying.

Combine this with a rigidly physiological approach to disease and pain treatment, there is a risk that doctors or patients could be misguided into making ill-informed decisions.  

“What about the psychological needs of our patients? 

“That’s exactly the problem. The treatment of patients is very physical, not psychological. We don’t look at the psychological, spiritual and emotional aspects of illnesses,” Dr Ednin said.

Diseases such as cancer also cause a significant burden to the patient and their family.

It affects their finances, makes illness a central part of the lives of everyone involved and turns families into caregivers; thus, affecting the normal function of a family.

And this problem can put a strain on relationships. Dealing with such a condition would require specific training involving medical and social skills, which Dr Ednin said can be provided by professional social-medical workers.

Yet, most of the country’s public hospitals are still found wanting of these trained specialists, the Hospis Malaysia CEO argued.

“Patients sometimes want to be independent so they don’t want to be a burden to their family, and thereby, you have this situation (where they think of terminating their own lives),” he said.

“(But) for most families, they don’t mind because it is their duty to look after their family member so this is mostly a perception issue. 

“Sometimes, it might be a practical issue but it can be sorted out through discussions and a reframing of what can or can’t be done by different people.” 

However, the Ministry of Health (MoH) in a response to Malay Mail said the government has been developing palliative care services since the mid 1990s. 

The first dedicated in-patient palliative care unit was a pilot project at the Queen Elizabeth Hospital in Kota Kinabalu, Sabah, in 1995, which according to the ministry’s director-general Datuk Dr Noor Hisham Abdullah provided the impetus for further development of palliative care services in other government hospitals.

“In 1998, MoH decided to have a more structured palliative care service and this has led to the development of many palliative care services in the MoH hospitals,” he said.

At present, there are 11 trained palliative medicine specialists in the MoH with 14 of its hospitals offering specialised palliative care services, seven with resident specialists and the rest integrated through a cluster hospital initiative, said Dr Noor Hisham.

“Apart from this, there are 11 MoH hospitals with dedicated palliative care teams providing basic palliative care services,” he added.

Dr Noor Hisham said the MoH has also initiated the movement of palliative care services from hospitals to community palliative care services in 2016, where a domiciliary palliative care programme was developed to provide home care to patients in rural areas not covered by non-governmental hospice groups. 

No silver bullet

Just recently, MoH launched the National Palliative Care Policy and Strategic Plan 2019-2030 to help develop a national palliative care agenda, a 10-year blueprint aimed at making palliative care a core discipline of public healthcare.

Dr Ednin is cautious not to be overly optimistic. 

He feels there is still much to be done in terms of upskilling and training of healthcare workers to deliver the care, and changing mindsets with regards to understanding that a palliative care referral “is not-an-instead of curative treatment, but can complement whatever medical treatment and therapy the patient is undergoing.”

As the government’s plan to decriminalise suicide bids has sparked debate about assisted suicide, the Hospis Malaysia CEO feels there is a need to ramp up public awareness about palliative care.

At the moment, the number of patients who have requested aided dying remains small, just a “handful” from some 2,000 patients that Hospis Malaysia is treating or has treated yearly, which reflects the success of appropriate pain treatment and care, said Dr Ednin.

But is palliative care the silver bullet to treating chronic pain? Not necessarily. 

The Hospis Malaysia CEO said there are still conditions where it may be arguably justified that patients be given the power to decide their own deaths, but not until all options have been fully exhausted.

“All this can be dealt with. It may not address the needs of everyone, but it will deal with the majority of people who may request euthanasia or assisted suicide,” he said.

“So do we keep the debate (about assisted suicide) open? We can.”

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