Chapter 7 The role of patients and carers in medicines management
After reading this chapter, you should be able to:
INTRODUCTION
BENEFITS AND COSTS OF MODERN MEDICINES
Although most patients derive great benefit from their medicines, the search for the ‘magic bullet’ goes on, especially in oncology. All medicines have the potential to cause harm to the patient, even when used in standard doses. Many patients, especially older patients, suffer from more than one condition, resulting in multiple-drug therapy (polypharmacy). The risk of drug interactions therefore increases, but the risk of harm to the patient is low in well-managed situations because the professionals involved in the management of medicines take steps to protect the patient from such eventualities. Chapter 3 describes the vital contribution made by the nurse in helping to ensure that the patient derives benefit from the prescribed treatment.
Abuse of substances is of growing concern throughout the world, a particular concern being the use of so-called recreational and lifestyle drugs. Much drug abuse is based on the use of illegal substances, but medicines can be abused, with potentially devastating outcomes for misusers and their families. Dependency on drugs may arise as the result of prescribed medical treatment, but this is rare. Legislation is in place designed to reduce the likelihood of drugs being diverted for abuse (see Ch. 2).
PUBLIC, PERSONAL AND PROFESSIONAL PERCEPTIONS
Health promotion resources are targeted at prevention strategies such as a healthy lifestyle, but the belief that health can be achieved or maintained by the use of medicines is still widely held. All health professionals must seek to ensure that patients (and their carers) have realistic expectations of their drug therapy and know when and why drug therapy is needed. Surveys of public opinion clearly show that people want to be involved in decisions about treatment (Kelham et al. 2005).
The use of complementary and alternative medicine (CAM) appears to be increasing. Issues relating to CAM are discussed on page 118.
PERSONAL FACTORS
The realisation that patients and their families hold, and are entitled to hold, their own beliefs about treatment was recognised by the Patient’s Charter (Scottish Office Home and Health Department 1991). Patients (and their families) can formulate views on a proposed treatment only if they are in possession of relevant information about the condition, nature and effects of the treatment, alternatives available and consequences of not accepting treatment. The right of the patient or client follows the principle of informed consent, which is based on the individual having the necessary knowledge to make a decision (Nursing and Midwifery Council 2004). There may be situations, however, when it is in patients’ best interests not to provide full information on their drug therapy.
Ethnic minority groups may have special needs and concerns that must be recognised and met. Cultural barriers may inhibit access to mainstream healthcare. In order to overcome these barriers, novel approaches may be needed. Moberly (2005) describes a service for the review of medicines within a mosque.
PROFESSIONAL FACTORS
Medical misadventures may also have a profound and long-term effect on all those unfortunate enough to be involved. Even with more enlightened policies on such matters as drug errors, health professionals may suffer from a lack of confidence that may need expert professionals’ help to overcome (see Ch. 6).
THE BRISTOL INQUIRY
The Bristol Inquiry, which examined many failures on the part of cardiac surgeons and others, made numerous recommendations regarding the importance of health professionals treating all patients as partners by regarding them as ‘equals with different expertise’ (Coulter 2002). Key recommendations in the report of the inquiry are given in box 7.1.
The recommendations in box 7.1 provide the necessary broad guidance for health professionals that, if followed, will help to ensure the achievement of an effective partnership with patients’ concordance. Involving patients more in decision making has many benefits, not least in improving patient safety. Prescribing errors could be reduced by actively involving patients in their own care (Coulter 2002). It is recognised that, to achieve this, resource implications will have to be met and cultural and technical barriers overcome (Coulter 2002). Electronic access by patients to a range of relevant information may be the way forward (Coulter 2002). Patients may also become involved in the training of those involved in the provision of healthcare. The concept of the expert patient is being developed. Selected patients suffering from a chronic disease are given short training programmes in anatomy, physiology and the disease process. Drawing on this training and, above all, their own experiences, patients are then able to provide inputs on a range of matters into the training of medical students, doctors and other healthcare professionals.
COMPLIANCE OF THE PATIENT
An essential component for the successful outcome of any treatment plan, drug or otherwise, is the patient’s compliance with the prescriber’s advice and directions. The compliance of a patient can be defined as the ‘extent to which the patient’s behaviour coincides with medical or health advice’ (Sackett 1976). The term patient compliance is often considered to be unsatisfactory, because it has overtones of coercion or compulsion and does not include any reference to treatment outcome. Alternative, less-threatening terms that have been proposed include therapeutic alliance and treatment adherence (Blackwell 1976). At no time will the term compliance be used here with any implications of coercion of the patient. Increasingly, an approach (concordance) based on a partnership in medicine taking is advocated as a framework for improving patient care.
The key aspects of concordance are:
NON-COMPLIANCE OF THE PATIENT
Many studies have been published that demonstrate in detail the extent of non-compliance with directions regarding drug treatment. In long-term therapy, compliance is often inadequate. Patients taking antiepileptics achieved a 76% compliance level, which fell to 39% when the dosage schedule was changed from 8-hourly to 6-hourly (Cramer 1989). With short-term therapy, the position may generally be better. Studies by Donabedian and Rosenfeld (1984) and Mushlin (1972) showed that up to 75% of patients complied with their directions. Few studies relate the extent of non-compliance to the failure to achieve the desired therapeutic outcome. Nevertheless, non-compliance should always be considered as a possible reason for the failure of treatment.
Some patients may need extra help in managing their medicines, because of a disability. The Disability Discrimination Act 1995 applies to many aspects of everyday life, including the supply of medicines. Disabled people have a right to be treated no less favourably than other people. Pharmacists are required to provide the extra help a disabled person may need, for example by providing an aid to the use of medicines (see Table 7.1).
Factor | Comment(s) |
---|---|
Personal factors | |
Patient’s belief as to value of therapy | Patients from all groups of society may have particular views which are influenced by many factors. |
Ethnic aspects | May conflict with mainstream western medicine. |
Relationship with health personnel involved | Patient’s faith in prescriber, especially, often influences outcome. |
Ageing process | Loss of recent memory, physical disability, etc. may contribute to non-compliance. |
Some psychiatric illnesses | Schizophrenia, for example, may bring particular problems. |
Pressures of a busy life | Especially hard to comply when several daily dosage intervals are involved. |
Poor understanding of regimen | Increasingly, patients may be receiving multiple therapy and may lack the ability to manage a complex regime. |
Limited knowledge of condition | This may arise due to poor explanations by health professionals or denial. |
Social factors | |
Isolation | May arise from a breakdown in the family structure. |
Deprivation | Some patients have to contend with a difficult journey to the surgery or pharmacy. |
Older people often have to contend with multiple deprivation and are more vulnerable when things do go wrong with their medicine taking. | |
Poverty | Patients who cannot afford prescription charges will probably need help and guidance not only with use of medicines but with the social security system also. |
Factors directly related to medicines | |
Tablets | Large tablets may be difficult to swallow; very small tablets may be difficult for a patient with stiff fingers to pick up. |
Liquid medicines | Liquid medicines may have an unpleasant taste, colour or “feel” in the month. Many liquid medicines that are used by older patients are formulated for children. Highly coloured, sweet, sickly flavours are generally not very acceptable to older patients, even if children find them acceptable, which often they do not. Measuring liquid medicines will be difficult for many patients, as will handling a 500-mL glass bottle of liquid medicine that may weigh almost 1 kg. |
Topical preparations | Stiff ointments may be difficult to use, or there may be difficulty squeezing creams or ointments out of a tube. Products that stain the the patient’s linen,shower or bath may prove unacceptable. |
Packaging | Child-resistant packaging is difficult for many people, although its use has reduced accidental poisoning of children significantly. |
Labelling | Labelling systems have been improved with the introduction of machine-printed labels for all dispensed medicines, but the small print on some labels may be impossible for some patients to read. |
Prophylactic medicines | Medicines prescribed for prophylaxis may not always be taken as prescribed, because the patient does not feel the benefit directly, e.g. malarial prophylaxis. |
Unpleasant side effects | Unpleasant side effects such as headache and nausea may, undoubtedly, be a cause of non-compliance. |
MEASUREMENT OF NON-COMPLIANCE
Many difficulties are presented when measuring or assessing patient compliance. The methods available vary from the basic tablet count to the use of electronic monitoring devices (Punchak et al. 1992) and the measurement of the drug (or metabolite) in body fluids. The methods available are listed under two headings: first, methods that are normally available to the nurse, and second, those methods that require considerable technical back-up and are applicable only in structured investigations into patient compliance.