How to look after patients who fail to care for themselves was the topic of a Drug and Therapeutics Bulletin seminar held on November 17, in London
National Health Service resources were scarce and health care professionals could not meet everyone's needs, said Professor LEN DOYAL (professor of medical ethics, St Bartholomew's and the Royal London school of medicine and dentistry). "How do we decide how to ration health care?" he asked. It had been suggested that resources were allocated to people who did not waste them. If patients neglected their duty, through non-compliance or adopting lifestyles that prevented compliance, they compromised their right for treatment. This strategy, Professor Doyal argued, was "plain wrong" and was "riddled with inequity".
Non-compliers might face difficulties beyond their control. They might have poorer levels of understanding of treatment due to factors such as their educational background, their lifestyle or through poor delivery of messages by health care professionals. Secondly, they might have poorer levels of emotional confidence due to previous demoralising experiences or stress. Finally, the social environment in which non-compliers found themselves could prevent them from adopting a treatment regimen or lifestyle change.
For these reasons, compliers and non-compliers were not equal, said Professor Doyal. It was "unfair and unjust" to reward someone for their background, and withholding treatment from non-compliers would be adding to their disadvantages.
Miss JANET GRIME (concordance research fellow, Keele university) commented that there were circumstances where patients were falsely assumed to be acting irresponsibly whereas, in the patient's view, on the information they had, they were acting in a responsible manner.
Ms PAM GRANT (primary care group pharmacist, Poole) said that patients complied with a treatment if their health care professional took a personal interest in them, especially in follow-up care.
A GP from Woking, Surrey, commented that some people requested "extras", such as yearly cervical smears. Professor Doyal said that health care should be about "equal access based on equal need, not equal desire".
Dr JOHN WILDING (honorary consultant physician, University hospital, Aintree) discussed neglect of self care in chronic conditions and the resulting frustrations that faced clinicians.
There was a small minority of patients who appeared indifferent to their condition. Indifferent patients avoided health care professionals for long periods which resulted in the condition worsening. This could be due to a fear of the disease, a lack of knowledge of the disease or a communication failure by health care professionals. Problems associated with indifferent patients included the loss of time through missed appointments and the costs of treatment in the long term.
Patients might also be hostile towards health care professionals, said Dr Wilding. This could cause excessive demands on the clinician's time, it could cause stress to the clinician and have effects on other patients. Hostile patients could push others aside; the demanding patient might get an appointment or treatment before a non-demanding, and perhaps more deserving, patient.
Another type of patient with a chronic condition who was difficult to treat was the manipulative patient. They might over or under treat themselves causing continuous problems with their management. The patient was in control, forcing the clinician to make difficult and possibly harmful decisions.
Clinicians often carried out exhaustive and unrewarding investigations on non-compliers. Attempts to explain, educate or persuade patients into treatment often failed. Many clinicians found themselves without adequate skills to deal with this type of patient, said Dr Wilding.
Dr MANDY BYRON (clinical psychologist, Great Ormond Street hospital, London) described a model at Great Ormond Street hospital where a psychologist was part of the paediatric team, reducing the stigma of referral for psychological input. There was an additional resource implication, but it might be cheaper in the long term than the consequences of non-compliance, she said.
Ms MIRIAM HARRIS (secretary to the concordance co-ordinating group and practice research manager, Royal Pharmaceutical Society) said that policy was cost driven and figures were needed to assess the viability of putting a psychologist into the health care team.
Dr RACHEL FREETH (GP, Farnham Road hospital) suggested that psychological support should be given to health care professionals themselves to help them deal with the frustration that Dr Wilding had described.
Professor HUBERT LACEY (department of psychiatry, St George's hospital, London) said that a clinician's aspiration was that "the patient behaves in a way that coincides with medical advice or prescription", ie, the patient was compliant. However, there was a part of the patient's mind that did not want to get better.
A lack of self care could be a matter of choice or a part of the illness, said Professor Lacey. It could be a part of the aetiology of the condition, for example, in anorexia (where the patient had a fear of normal body weight), a lack of self care was in-built in the condition. A lack of self care could also be secondary to symptoms, such as a result of schizophrenia or depression. Thirdly, it could be secondary to treatment, for example, as a result of medication that caused a sedative effect or weight gain. A lack of self care occurring secondary to treatment could also result from a fear of losing a relationship with a therapist. Finally, it could result from a fear of high expectations or because of the self-protective effect that a lack of self care could have.
To promote compliance, positive steps were required from the clinician who should share information with the patient and allow the patient to ask questions. Professor Lacey said that a multidisciplinary team was an advantage because it gave a "greater continuity of care". It meant that the patient had access to several health care professionals rather than just one to whom the patient might not respond.
During discussion, a GP from Milton Keynes said that a factor for non-compliance associated with treatment was the inclusion of patient information leaflets with medicines. Patients often extracted the negative information from them rather than the positive, he said, so perhaps a balance of selective information was needed in such leaflets.
Dr DIEDRE CUNNINGHAM (director of health policy and public health, Lambeth, Southwark and Lewisham health authority) provided the health authority's viewpoint in relation to non-compliers.
There were finite resources which would not meet all needs, so some people would have to go without. "Denying treatment or drugs on the basis of behaviour - it is not us," she said.
Dr Cunningham gave examples of health authority policy. Denying malaria prophylaxis in Lambeth, Southwark and Lewisham, as the government had advised, did not make economic sense, she said. Most residents who wanted antimalarials were going to see family overseas, and not on exotic holidays, and could not afford to buy prophylaxis. The cost of treating malaria far outweighed the cost of prophylaxis so prescribing of prophylaxis was permitted.
Treatment was sometimes needed as a result of lifestyle choices, for example, tattoo removal. Lambeth, Southwark and Lewisham health authority would not remove tattoos unless the person was psychologically disturbed by the tattoo.
Patients' beliefs could result in treatment costing more than expected. Religious reasons could lead to a need for recombinant blood products which were very expensive. There was a multicultural society, she said, and if a person would refuse other blood products to the extent that they would die, then recombinant blood would be provided. There were examples of treatment on the borders of clinical requirement, including in vitro fertilisation and gender re-assignment. In these cases, the impact on an individual's life of giving or witholding treatment had to be considered.
Dr Cunningham mentioned patients not complying through lifestyle choices. "Who had not contributed in some way to their condition and which diseases had no causative factors which could be avioided?" she asked.
The public health implications of refusing treatment had to be considered, for example, tuberculosis left untreated or unwanted pregnancy, she said. Health authorities had a responsibility for the population as well as the patient, Dr Cunningham said. All decisions a health authority made were not "hard line" but were subject to judicial review.
Services in the NHS should be provided according to an individal's need. "No individual can be denied the right to be considered for treatment," she concluded.
During discussion, a questioner asked if compliance would be increased if everyone had to pay a small contribution towards health care. Dr Cunningham replied that data indicated that if prescription charges were increased by 10 per cent, utilisation would decrease by 30 per cent. Therefore, expecting people to contribute to health care would have the opposite effect and non-compliance would increase.
Asked whether the National Institute for Clinical Excellence was refreshing or restrictive, Dr Cunningham said that it was sensible that one body evaluated the evidence for a treatment well, rather than each health authority doing so individually. However, local needs had to be considered, so whether health authorities would follow the guidelines remained to be seen.
Dr DAVID HUGHES (senior lecturer in health economics, King's, Guy's and St Thomas's school of medicine, London) discussed the financial burden of patients who failed to care for themselves. If patients did not comply with treatment they could get better spontaneously, be ill indefinitely, develop a more serious condition or die, he said. So non-compliers initially reduced the demand on the health care system but might result in more costs in the long term. The cost of illness was not only to the health service but also to the patient and society as a whole. It made economic sense, he said, to treat the condition while minor rather than let it develop into a more serious and potentially more costly condition.
The treatment of hypertension, for example, was relatively low, but discontinuation of therapy was widespread. There were many additional costs as a consequence of discontinuation, including treatment for stroke or myocardial infarction.
Patients who increased their risk of ill health through their own actions also caused an extra financial burden. For example, the cost of obesity in the UK included treatment not only for the obesity itself but also for conditions that resulted from it, such as non-insulin dependent diabetes and angina. The impact of this on the NHS drew resources away from other people.
Assessing the cost of patients failing to look after themselves was an empirical question, said Dr Hughes. It involved extrapolation and projecting into the future. Future costs could not be drawn into health authority budgets to justify spending extra money in the short term for a long term benefit.
A GP from Woking commented that, in cost saving analysis, the financial burden of people living longer was ignored. For example, stroke might be prevented but the individual might die later on of something that cost a lot more to treat.
A pharmacist commented on the waste of drugs and wondered whether unused drugs could be recycled in certain circumstances. Non-compliers often ordered repeat prescriptions with no intention of taking the medicines. The reasons patients gave for such action included that they did not know what the drug was for or that they did not want their GP to know they were not taking the medicine.
Bringing the seminar to a close, Professor JOE COLLIER (editor, Drug and Therapeutics Bulletin) said: "We will need a re-evaluation of our relationship with health authorities, other health care professionals and patients." It was "almost impossible" to resolve the issue, but everyone should make a small contribution, such as working more closely with patients. About non-compliers, Professor Collier concluded: "If we all did what we were supposed to do in life it would be so much easier, but that is not a part of people."