A feature of health care in Malaysia is the tripartite system that includes the country’s public health provision, private health care and alternative medicine. Patients who are concerned about either the provenance of their diagnosis or aspects of their treatment in government facilities may seek advice outside of the national health service. So they approach consultants about private care or traditional healers concerning alternative therapies. In this patchwork of provision, approaches to life-limiting conditions and end of life care give rise to a variety of ethical issues.

Patient autonomy: being treated with respect and enabled to make choices

Ranjit Kaur, a cancer survivor and president of the Breast Cancer Welfare Association, considers that people turn away from government facilities because of the impersonal way they are dealt with. “It’s mainly the way people are treated in hospitals that they go for alternative therapies; it’s because they’re treated so mechanically. You go to a place where someone treats you like a human being because you prefer that.”¹⁵⁹

Citing her own experience, she tells how she and others received their cancer diagnosis:

‘It’s important to be treated as an adult - but even more important is that the patient is seen as a person, a human being, and that seldom happens in a hospital setting. You go back home with so many questions and that’s only beginning of the suffering for the patient and the family. I’ve had friends who have gone to see the doctor, they’ve got cancer, they’re talking to the doctor, they’re asking questions and they’re saying, “Doctor, why aren’t you giving me this other medication instead of what you are giving me?’ And the doctor turns round and says, “Are you the doctor or I am the doctor?” So it’s not a supportive environment. I’m not speaking about all the doctors but quite a number of them who still have this patronising attitude, not wanting to explain things properly to the patient, and when they do it is not in the patient’s language, it’s in a scientific language. I’ll give you an example. A friend of mine was sitting there while two doctors were talking right in front of her. They were discussing her situation - her case - in scientific terms without mentioning her name. And then one of them said, “Go lie on the couch” and she went and lay on the couch. He just did a brief physical examination and then he said to her, “You have carcinoma of the breast’. And she said, “What is that?” His answer was, “That’s cancer of the breast”. And that’s how the news was broken.’¹⁶⁰

Ednin Hamzah highlights the effects that a lack of information may have on a patient’s home and family:

‘We see a lot of situations where patients are started on expensive treatment, and they complete one or two courses and they simply do not have the finances to continue. And sometimes because of the promise of a possible cure, or prolongation of survival, they sell their houses and sacrifice the education of their children and all sorts of things. We have serious ethical issues here. I don’t think some clinicians who offer this treatment discuss the possible ramifications to the patients and families – especially where the medicine has strictly become a business entity.’¹⁶¹

Beneficence: doing good for the patient

Evelyn Ho, president of the College of Radiology, draws attention to the questionable practice of continuing curative treatment when the chances of improving the patient’s condition are negligible.

‘I think perhaps in the private sector there may be some over treatment, especially when money is not an issue and the patients are hoping for that two per cent or five per cent chance that they might recover, even in advanced cancer; but there’s definitely a great difference here. You will see treatment when it seems to serve little purpose. Patients are really, really sick with advanced cancer and sometimes they’ll be offered chemotherapy and I’m not sure that is the correct thing to do. I’m not sure. I don’t want that done to myself if I’m at that stage. I would not want futile treatment! But these are the scenarios that occur because patients tend to have more than one opinion, one from the public as well as one from the private sector. They will find a disparity, such as the drugs which are going to be given, or the chemotherapy, and when they go back to the government or the academic institutions they will ask, “Why am I not being given drug A, B or C which so-and-so says is going to give me an extra 5 per cent or 10 per cent chance of survival”. So these issues come in; and I think making this situation - of people in the public sector thinking that they may be short changed – is perhaps not very healthy in Malaysia.’¹⁶²

Non-maleficence: doing the patient no harm

There are instances when some treatments, notably the alternative medicines and supplements through direct sales or from self-professed ‘alternative’ or of traditional healers, that not only fail to improve a patient’s condition but have an adverse effect. In these circumstances, the possibility of redress is usually discounted due to the patient’s self-acknowledged desire to find any form of treatment that promises survival. Evelyn Ho:

‘No-one gets prosecuted. No-one wants even to complain about the alternative healers or the false promises which accompany the direct sales of supplements and miracle ‘cures’. There are many situations when supplements or alternative ‘natural’ medications have failed; but if you ask the patient whether they are willing to testify - not even in court, not even to make a police report, just to testify so that people are aware that not all alternative medicine works - they don’t want to. They just say, “I don’t want to talk about it, I was conned”. And that’s it.’¹⁶³

Sylvia McCarthy speaks of the suffering caused to patients by prejudice towards morphine:

We had a patient who was being funded by his company to go to an alternative clinic - to a person who was a qualified doctor and who was offering a cure. The patient was being told he couldn’t have morphine for his pain control. He was in agony and he was scared to tell her that he was having treatment with us. It was hard seeing that man suffering and knowing that his suffering was completely unnecessary.¹⁶⁴

Norchaya Talib, a professor in the Faulty of Law at the University of Malaysia explains that whether a person practises Western or traditional medicine, they are still accountable in law:

‘So far there’s been no prosecution that I’m aware of with regards to a practitioner’s alternative medicine. But there was a case way back in 1996 where this doctor was treating a patient with some eye problems and the doctor was using a method which was not recognised by modern medicine. And the court said, “Because you are registered under the medical act, as far as you are concerned you are a modern medical practitioner and we view you from that perspective” and he was found guilty. So although alternative medicine is being practised in Malaysia the practitioners are still judged by the standards of modern medicine.’¹⁶⁵

Justice: an equitable service

Ednin Hamzah draws attention to his perceived imbalance between Malaysia’s interest in hi-tech interventions for the few and the lack of skilled health professionals across a range of disciplines:

‘We actively promote health tourism in the country but we don’t look at ways of treating the patients that we have with cheap, effective medication and services. I think service-based professionals like physiotherapists, those with nursing skills, counsellors, are not valued within our health sector whereas instances of high-end technology are looked at as things to be valued. The new innovations, such as having CAT scans, are given huge prominence in the country and seen as a sign of development, whereas the basic human resource of having adequately trained doctors and nurses is something that you don’t see very often.’¹⁶⁶