Medication: Choice and non-compliance

Compliance (or adherence) means going along with a doctor’s decision about the amount and frequency with which someone should take a particular medication. The people we talked to told us doctors could make decisions regarding the type medication with their input and sometimes adjusted the dosage over time. But sometimes medical staff could make the decision without getting the person’s agreement or sometimes could insist they take a certain medication (see Community Treatment Orders). When people were in hospital they often had little or no choice about their medication and ‘compliance’ was sometimes enforced, for example by giving injections or by watching people swallow tablets. The memory of this could be upsetting (see Hospitalisation: Daily life and treatment).

This Talking Point is about people who wanted more choice or who did not ‘comply’ with medication prescriptions when outside of hospital. Some of these people were placed on a Community Treatment Order (CTO), a provision of the Victorian Mental Health Act for involuntary treatment outside hospital. Even though medication led to an improvement in the symptoms of severe mental health problems for some people, many spoke about times when they refused the medication they were offered, or stopped taking an existing prescription without discussing it with their doctor. Others talked about self-medicating – having more of one drug or reducing the amount they took.

Quick Links

Non-compliance with medication
The importance of choice
Reflections on non-compliance

Helen described coming off her medication when she was feeling ‘hyper’. After a few months she was having suicidal thoughts and found it difficult to motivate herself to get back on the medication.

Non-compliance with medication

People could stop medication when they were very unwell or just forget to take it. Some stopped taking medication because they felt better and thought they didn’t need it anymore or thought that taking less medication meant they were doing better.

When Brian was in prison, there was social pressure not to take medication.

A few stopped medication because it didn’t seem to be working for them (see Medication: Effectiveness and side effects). Feeling that medication wasn’t working did not always lead to non-compliance, however. Anna didn’t find medication worked for her but said: ‘I don’t want to be seen as non-compliant… not wanting to get better and not doing my bit’, so she has ‘blindly taken it even though it does nothing for me’. But a few people had high expectations from their medication and found it difficult to take it when they didn’t experience any change in how they felt.

Lisa didn’t feel any better when she was taking mood stabilizers. She said at the time she was taking them she wasn’t ‘educated enough’ to realise medicines aren’t ‘magic quick fixes’.

Most people talked about self-medicating at some point. This could mean taking more than the prescribed dose of medication at some time or not taking it at other times. Sometimes this was a matter of adjusting medication because of unforeseen circumstances like a missed pill or clashes with other medication. Some people commented that self-medication could be important in long term self-care. Chris said he always self-medicated but now that he is a volunteer helping people diagnosed with ‘mental illness‘ he is given more ‘discretion’ by his doctor about how and when to take his pills.

Self-medicating could work well for some people and give them a sense of control. For others it could lead to unwanted consequences.

Allen described taking his medications when he knows he needs them and making choices on a day-to-day basis about when he needs what.
Lisa described taking her sedatives and anti-psychotics for their sedative effects, and said she might have been ‘more compliant’ with mood stabilisers had someone explained to her how they work.

When people didn’t comply with medication some talked about being forced to take their medication. Others, like Allen who described himself as having great respect for doctors, were able to negotiate changes to their prescription with their doctor after they had made the change themselves (see Experience with mental health practitioners: Psychiatrists, counsellors and others).

The importance of choice

Non-compliance was described by people as being about control over one’s own body, as well as control over the decision of when and how to take medicine. This could mean wanting to avoid medication that was perceived as bad for the body: Carlo said, ‘I thought it was going to fry my brain’.

Susana admits she stopped taking her medication because she thought it would be better for her ‘health’ not to. She wanted to ‘stabilise’ herself without medication.

Even if people did comply, some had specific fears about actual or perceived side effects.

Luana was worried about taking her antipsychotics because of possible side effects. A relative with schizophrenia had been untreated for many years because the family thought medication was ‘no good’.

Not getting sufficient information from health practitioners about medication could be a problem and lead to mistrust and doubt about future treatment decisions.

Carlo said there was very little information about the medication he was prescribed. He said no-one had ever explained how the medication would help him and he thought his antidepressants made things worse.

Reflections on non-compliance

Most people who had stopped taking medication or altered the timing or dose without discussing it with their doctor later recognised that this had not been always good for them.

Nicky talked about taking antidepressants making her ‘mania’ worse because she was not taking them properly.
Gurvinder realised that because he wasn’t taking his medication properly, it was difficult to tell if it was working or not.

Some people wanted to warn others not to stop their medication. Helen said, ‘I know each time I’ve stopped my meds that it’s the wrong thing to do, but this time I’m determined, 100, 200, 300 per cent, that it won’t happen again.’ Her advice to others is: ‘Don’t stop your meds. Whenever you’re down, see your doctor, see your psychologist, talk to a friend, talk to somebody, because you’re not alone’.

A few people were managing their mental health without any medication.

Lisa doesn’t take any medication now. She feels she is ‘out of the woods’ and has found other ways of coping.