Healthcare professionals are understandably concerned that people, especially people with serious health problems, take medication appropriately, as prescribed by their doctor. The reasons they often do not are explored here, and may differ from some commonly held ideas. The causes of non-compliance are seldom immediately clear, and individual reasons for stopping medication can appear arbitrary, “I couldn’t get to the chemist”.. If I focus here on individuals with mental health problems, it is because compliance with medication is a comparatively larger problem in this group, but certainly not exclusively so.
Many writers have highlighted the importance of terminology in healthcare, and suggest that the use of words like “compliance” infer that patients should be passive recipients, and should obey professionals. It has recently been proposed that “concordance” should replace the words “compliance” and “adherence”.
Concordance emphasizes patient rights, and the importance of two-way decision making. More controversially, it also reminds us patients have the right to make choices such as stopping medication, even if doctors do not approve of the decision.
How a person thinks an illness will affect him is determined by his previous knowledge or experience, as well as fear of the outcome.
The law imposes a duty of care on those that administer medication to others, for example, on a hospital ward. Administration of medication is not without its complications. Minor prescribing errors, allergies, adverse drug reactions, interactions with food, or herbal products, overdoses, and even possible irreversible health problems or death, must all be considered. No one should take medication that is normally only available on a doctor’s prescription without this essential professional help.
There is however, still widespread concern in the UK over the administration of non-prescribed medicine and the practice of covert administration in the non-compliant.
The law is clear that covert administration is only justifiable in cases of incapacity. Incapacity occurs where the patient is unable to comprehend and retain information material to the decision, or the patient is unable to weigh up the information as part of the process of an informed decision..
In the case of covert administration to an adult, there would be a need to demonstrate that the patient is incapable. Hospital professionals should be able to justify the techniques of administration were in the patients best interests, and the crushing of tablets, for example, was safe. In practice this should be a team decision, with the involvement of the patient’s family.
Researchers interviewed patients with Parkinson’s disease, and their views are quoted here for two reasons. Firstly healthcare professionals may tend to view some patients with Parkinson’s disease in a similar manner to those with a mental illness, that is, not competent to self-administer medication. Secondly the benefits of helping patients maximize control over their own medication are so apparent; they might well be applied to patients with other illnesses.
The issue of balancing the benefits of medication against very significant unwanted side-effects was a major concern to interviewees. The patients had in common an understanding of the symptoms of the disease, and how their medication, particularly the timing, affected their symptoms. It was clear that the doctors really listened to the needs of the patients, adjusting dosages and times to suit them.
Some patients experienced difficulties retaining control of their medication when admitted to hospital. They found the timing of the drug rounds did not suit them. This undermined their efforts to comply with the medication.
The argument is that hospitals and nursing homes tend to reinforce dependent behaviours by supporting and encouraging them. The primary ethical strategy advocated is for staff to focus on reinforcing independent behaviour. Forms of self-medication come into this category.
One scenario involved a 47 year old man suffering from bipolar affective disorder. His case typifies the interplay between physical and psychiatric health, and the patient was poorly concordant with medication.
Among his numerous significant medical conditions were angina, and a myocardial infarction. He also had diabetes mellitus and developed diabetic neuropathy, which was treated with carbamazepine. His mental state was coincidentally improved with the introduction of carbamazepine, but after eighteen months of stability, he took an overdose, resulting in the prescription withdrawn.
The doctors felt that when he was mentally stable, his physical health improved in parallel, possibly due to improved concordance with both medication and lifestyle advice.
He appeared to view psychiatric care as stigmatizing, contributing to poor concordance. Treatment for diabetic neuropathy was perceived as less stigmatizing. The importance of tailoring medication to each individual is highlighted in this case, as the accidental overdose of carbamazepine led to a serious long-term deterioration.
Researchers have found that the belief that non-compliance is a direct result of disease processes in schizophrenia dominates the clinical perception for these patients. One explanation given was where a patient who stays off medication, perhaps out of a delusional feeling (“my doctor is poisoning me”), for a time feels well, which may have the effect of strengthening the delusion.
Why might someone develop such a feeling? The illness may play a part; but old age, depression, or the knowledge they are losing independence, can all contribute. One researcher compared the medicine taking decisions in people with schizophrenia to those of people with asthma and epilepsy, also both enduring, episodic illnesses. They concluded that for people taking anti-psychotics, relapse was socially disadvantagous and unwelcome, particularly if it resulted in re-admission to hospital. They confirm that the association between stopping medication and hospital re-admission is learned eventually by many people on anti-psychotics. Interestingly all the people in the study seemed prepared to experiment with timing and amounts of medication when well, presumably as the fear of illness subsides. Most people learn the ability to balance symptoms and medication side-effects to achieve the best quality of life, whilst living with the possibility of relapse. Fear of dependence was also a strong motivator for some, and exceptionally leads to complete cessation of medicine taking for long periods, even if doing so led to frequent or severe symptoms. Finally, although evidence has been highlighted from a patient perspective of the considerable debilitating side-effects of anti-psychotic medication, it is not the aim to argue here that it has no role in helping to relieve the suffering of patients with psychotic symptoms.
The suggestion was made that it may not be the presence of unwanted side-effects themselves, but rather how these side-effects are regarded by the patient. The physical discomfort of side effects may be less important in influencing compliance than the meaning patients attach to these side-effects, “I think these drugs are making me unsteady, perhaps I am getting Parkinson’s?” In this way, compliance may be improved simply by allowing patients to voice fears and concerns about side effects.
Another observation draws attention to a possible reason for poor compliance in the hypo-manic or psychotic individual. Some sufferers enjoy the sense of euphoria that can characterize hypo-manic episodes. Similar problems have been experienced with patients with a history of recreational drug use. One likened his psychotic experiences to “tripping”.
Other researchers were concerned with how adults with illnesses characterized by repeated flare-ups, or instability, resulting in temporary inability to manage tasks of daily living, negotiated their medication needs. They included sufferers of multiple sclerosis, rheumatoid arthritis, and systemic lupus erythematosis, along with those with schizophrenia and bipolar disorder. They described how these individuals with chronic illnesses made on-going negotiations with health-care practitioners, balancing health and illness with a preservation of self-identity.
Many people interviewed described on-going efforts to find the right medication or combination of medications. In addition, a third of those described the use of diet supplements, alternative medications, such as Chinese herbal tablets, and naturopathic remedies.
It was found that the necessity of taking daily medication did not always square with the individual’s self-identity (“I am not ill, I don’t need medication”), so adaptation was stressed. The psychotic individual can often be fixed in their thinking, but others also described an aversion to feeling dependent on drugs, or perceived themselves subject to their prescriber’s ‘experimentation’.
It is acknowledged by most people that medication remains the primary way to manage chronic illness. But for those who are symptom free while on medication, the medication is the only indicator of illness, and non- concordant individuals are sometimes led to question the need for medication, the diagnosis, or the reliability of the health-care team.
For some patients with schizophrenia treated in the community, where good compliance with oral treatment cannot be guaranteed, depot anti-psychotics potentially provide a practical solution. However while having a monthly or fortnightly injection may be less problematic than following an oral medication regime, good compliance is not guaranteed. One researcher noted that far from focusing on the medication, there was a tendency among mental health personnel to see the compliance issue in terms of patient unreliability or lack of insight. Inevitably however, the injection does remove control from the user.
Researchers find that even without structured efforts on the part of doctors to inform patients about medication, education played an important role in their decision making. Of note in this context, was the response of persons diagnosed with depression, who, in common with those suffering psychoses, are poorly motivated. They found that these people go through an extensive interpretive process that includes understanding the condition and its causes, the reality of medication side-effects, and negotiating with healthcare practitioners.
The view of one perplexed woman with bipolar disorder reflected the experience of many. “Some of the psychiatrists would hand you five or six different medications at once. I mean, how do you know which one’s working, or what’s not working. It took a while before I found a psychiatrist who sat and listened…”.
Self-management programmes aim to encourage, or coach, patients, by supporting and influencing health behaviour and increasing knowledge of specific aspects of care, for example, pain and symptom control, or medication side-effects. Nurses are well placed to offer support to patients becoming more independent, but issues surrounding power and control in the nurse-patient relationship must be acknowledged in this process.
It is recommended health care practitioners not neglect the ‘secondary’ benefits of the medication, i.e. feeling calmer, sleeping better, easier socializing, and improved concentration, when seeking the views of patients , it was correctly predicted the secondary benefits of the medication would be valued as often as the main benefit of improving physical health and lessening depression.
Cognitive treatment targets patient’s attitudes and belief toward medication. An assumption is made that adherence is a coping behaviour, heavily determined by each person’s own interpretation of his illness and medication regime. Behavioural modification techniques assumed that behaviours are acquired through learning and conditioning, and can be modified through rewards and punishment, reinforcement, and the promotion of self-management. Behavioural strategies worthy of note include providing selected patients with detailed medication instructions, reminders, self-monitoring tools, cues and reinforcements. In another instance, the therapist used assertiveness training techniques to teach patients to negotiate with their prescribers more effectively.
If you’ve already been diagnosed with depression or a more serious mental illness, it is vitally important you do NOT stop your medication cold-turkey! Doing so could be dangerous to both your mental and physical health.
What you want is a cautious approach to discontinuing these drugs – and you need to do this with the assistance of a qualified and knowledgeable clinician who can slowly wean you off them over a period of a few weeks or months.
Ideally, this would be someone who can discuss alternatives, such as natural health, and who will help you consider natural, healthy options such as dietary changes, exercise, and so on. Having a professional help you also means you’ll have a mentor who will guide you through the physical and emotional changes you’ll experience as you leave the drugs behind, including any uncomfortable withdrawal symptoms.
Healthcare professionals generally agree that ignorance about medication is common. However, frequently treatment had not been fully explained to patients or their families. The individual needs to be fully informed about the effects of the prescribed medication, there is no justification for withholding knowledge about adverse effects, or a poor likelihood of success, this would be paternalistic and unethical. The aim of the treatment should be as clear as humanly possible, and alternatives clearly presented. Such patient empowerment enables genuine participation, reduces fear, facilitates informed consent, and gives the closest opportunity for concordance. The Internet is a useful tool in assisting personal research.
There does remain considerable scope for discussion of how to implement informed choice for the mentally ill individual in particular, and how to assist all people with serious health problems to take medication appropriately, as prescribed by, and negotiated with, their doctor.
Based on a 4500 word referenced literature review originally written in 2005, posted on http://www.oppapers.com/ as
|Improving medication concordance in mental health- a review of the literature…
Listed at http://www.telemedicon09.com/2010/09/page/22/ A very useful resource listing medical information as it appears on the internet