Patients don't always know best

That's why, sometimes, they need to rely on the doctor and on family.
By Chong Siow Ann, Published The Straits Times, 20 Sep 2014

MANY years ago, I had a patient with schizophrenia who, when she was well, was an affable homemaker and loving wife. But when unwell, she would transmogrify into an aggressive, unreasoning person with a particular paranoid delusion about her husband.

Unfortunately, she was prone to such relapses of her illness because she was frequently non-compliant with her medication despite repeated efforts to educate her on the need to take her pills.

These relapses finally drove her husband to desperation and to resort - on his own initiative - to administering the medication covertly in her daily cup of morning coffee, which he would make for her. But because she was suspicious, she would insist that he take the first sip.

Her husband told me this after he became worried that the regular, unwanted, partaking of the medication would cause him untoward effects.

Non-compliance with treatment is common in psychiatry, where a lack of awareness of the existence of the illness itself is a manifestation of some form of mental illness.

This is the most common reason why people with schizophrenia and bipolar disorder refuse treatment.

However, it is not only mentally ill people who are wont to refuse treatment - people with physical illnesses who do not have any mental illness are also known to reject medication.

In the treatment of the sick, the ethically correct thing to do is to ensure that patients understand and acknowledge their illness and its ramifications before proceeding to make their own decision whether to accept the treatment or not.

Implicit in a typical patient-doctor interaction is the principle of informed consent and patient autonomy, where an adult patient who is mentally competent has the legal right to refuse any medical or surgical treatment.

In those instances where patients accept the prescribed treatment, their decisions and rationality are seldom questioned.

It is when they refuse that their mental competence for decision-making becomes suspect. There is no universally accepted definition of this sort of mental competence.

The ability to understand information about the illness, implication of the subsequent treatment decision, and capability to say yes or no in a consistent way with regard to treatment are among the legal standards commonly used.

Reasons for saying no

PEOPLE who fulfil that narrow legal standard of competence do make decisions contrary to medical advice. Patients do not just use expert medical advice and evidence as the sole or even main factor in their decision-making.

Instead, these patients make choices based on their values, beliefs and priorities in life as well as on their life experiences (and possibly those of relatives and friends).

These can be influenced by other sentiments and emotions, such as mistrust of the medical services, fears of adverse effects arising from treatment, and loss of personal control.

And there is that obliterating effect of a serious or chronic illness on one's selfhood and identity, which redefines who you are and what you can or cannot do.

This is something that most people find repugnant.

Quite a few of my young patients with chronic mental illness simply loathe taking their medication - not because they do not think they need it but because it is a daily reminder of their illness.

Patients who refuse treatment often confound and frustrate their doctors who tend to see them as irrational, difficult, mistaken or ill-informed - especially when the doctors have gone some way in advising and persuading them.

The patient-doctor interaction can go sour: The rebuffed doctor might withdraw and become detached, and the patient might feel abandoned. Ideally, in such a situation, the doctor should then reassess the patient's decision-making capacity and make more time for further discussion.

The model that is aspired to is "shared decision-making", where the doctor explains the options and their possible outcomes, the patient discusses his concerns, values and preferences, and they jointly reach a decision that is best for that patient.

What might not be obvious is that there are some patients who might not be able to be engaged at this level of decision-making, despite appearing to be cognitively intact.

In a study published in 1997 in the journal Psychosomatics, 10 per cent of hospitalised patients with ischaemic heart disease had substantial difficulty acknowledging the nature and severity of their disease.

This was something that could render their decision-making capacity rather suspect, even though "they looked to be functioning like the person on the street", said Dr Paul Appelbaum, a psychiatrist with the University of Massachusetts Medical School and author of the paper.

"In our experience, we are more likely to see errors made in the direction of assuming competence on the part of people who may be fairly impaired, than incorrectly assuming incompetence in people who are not impaired."

'State of sickness'

A STUDY published in 2001 in the medical journal, Annals Of Internal Medicine, found that some very sick patients had impaired decision-making abilities.

This relatively small study was conducted on 63 hospitalised patients with either serious illnesses like Aids, pneumonia, cancer and heart failure, or who had undergone major surgery such as a coronary heart bypass. The patients were first found to be mentally competent on a test called the Mini Mental Status Examination.

But when they were given a series of seven cognitive tests, they performed in the manner of children below 10 years of age.

The authors commented that the finding "does not mean that they are childish; rather they are in a state of sickness".

Precisely how this "state of sickness" rendered these adult patients to this regressive state is not known.

Although the study has its limitations and its findings are preliminary, it suggests that the trauma of being acutely ill, the disorientating effect of being in hospital, and the effects of medications and surgery might act in some ways and stricken a person's mental faculty in a more covert way.

The author of that paper, Dr Eric Cassell, opined subsequently in the New York Times (in October 2001) that it is not only "grossly unfair" but also "an abuse of a patient to put someone in a position to make decisions when they do not have the capacity to make them", and that these patients need "somebody who is able to find out what is in their best interest, someone to help them to come to a decision that represents their beliefs".

Writing in The New York Times in 2011, Dr Eric Manheimer, the medical director of Bellevue Hospital Centre in New York, described his experience of undergoing treatment for throat cancer.

During a particularly harrowing and trying hospitalisation, he decided that he had enough.

"I refused further radiation and chemotherapy. I lay in my bed and watched the events around me - the distress of my family, the helplessness of my doctors - without anxiety, comfortable that I had made the correct decision," he wrote.

But though his doctors could not override his decision or persuade him to change his mind, his wife could and did. At her quiet but steely insistence, he acquiesced, largely because he "did not have the energy, or perhaps the will, to disagree". He completed the treatment, recovered and resumed his work and life.

"My dreams of dying were not the products of anxious moments of terror. The life force had simply slipped away and made me ready to die. It had also rendered me incapable of making the right decision for myself. My disease was treatable and the odds were favourable. My doctors were professional and gentle but ultimately could not decide for me," he reflected.

"When neither doctor nor patient can make the right decision, it is vital to have a caring family - though even here the legal and ethical issues are complicated."

Gone are the days when a doctor would dictate the terms and the patient could be expected to comply docilely. Today, there is much emphasis on a patient's autonomy and the right to self-determination. But an unquestioning deference to this principle and at the expense of all other considerations can actually not be in the patient's best interest.

While truly competent patients should not have treatments forced on them, mentally incompetent patients should be protected from the harmful consequences of their unwise decisions.

The writer is the vice-chairman, medical board (research), at the Institute of Mental Health.