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Professor of Pharmacy Law and Ethics
Nottingham School of Pharmacy
Medical ethics can be the stuff of high drama. Blanket media coverage alerts us to agonising dilemmas over the separation of Siamese twins where one will die or the withdrawal of life support from a patient who has declared her life is intolerable. But healthcare and ethics involve all health professionals, not just doctors, and ethical issues arise in everyday, commonplace examples of practice. For pharmacists, what do we mean when we refer to pharmacy ethics? What ethical issues arise in your practice? How do you deal with them, and would your colleagues do the same?
Principles of ethics
The scope of healthcare ethics is more or less agreed territory. In the UK, a group of university teachers of medical law and ethics (recognising that law often underpins the norms for an ethical approach) set out their recommendations for the undergraduate curriculum for doctors.(1) While each health profession may identify ethical issues that are unique to their particular contribution to patient care, the principles at work are broadly similar.
In our Western civilisation, particularly in the USA, the concept of individual autonomy, the right to self-determination, is well established and expected in most walks of life. In healthcare practice, however, inequalities of knowledge and power between professional and patient, coupled with a well-meaning desire to do “what’s best for the patient”, have fostered paternalism. In modern practice, health professionals are expected to recognise the limits of paternalism, to encourage and respect autonomy in patients and to recognise their rights to refuse treatment or seek alternatives provided the patients are in full possession of the information they need.
So one of the fundamentals of ethical healthcare practice is about respect: respect for the patient’s integrity, preferences and wishes, their beliefs and prejudices and, conversely, for the limits of treatment without clear and informed consent.
Where do hospital pharmacists contribute to the consent process? Consent is impossible without information, and that must be in a form the patient can understand and weigh up sufficiently well to make a judgement. Many carers may provide written or personal explanations about medication, but the pharmacist may be expected to ensure their quality and delivery. Consent to participation in clinical trials frequently involves the use of medicines; pharmacists may be best placed to explain the nuances of risk and benefit and to intervene where such experimentation does not satisfy the requirements for strict research governance. In the future, pharmacists may be undertaking physical interventions to treat patients (say, by injections or minor surgery). A clear understanding will be needed of capacity or competence to give consent, the ethical norms for treating persons who lack capacity and the Mental Health Law that applies in the country of practice.
Respect for autonomy and, indeed, human rights conventions implies a right to privacy and an expectation of confidentiality in healthcare practice.
Pharmacists may consider that, in the hospital setting, confidentiality is assumed and gives rise to few ethical issues. Increasingly, however, patients are expressing concern about exactly who gets to see sensitive information about their medical conditions or treatments, and why.
Much effort is being expended in the UK (prompted by EU data protection law) to reconcile the need for subject-identifying information in the efficient running of a state-funded health system and the expectation that patients should know about and consent to the disclosure of their personal health details. So we might get a situation where you, as the pharmacist, are aware of the nature of a medical condition because of the medicines being used to treat it, but the patient has stipulated that relatives, carers or certain visitors be excluded from this knowledge. Is your obligation to tell them the truth regardless or to respect the patient’s wishes, even though that may cause difficulties in their future care? Are there limits on the disclosure of information between health professionals? What arrangements exist for ensuring privacy of records from casual callers or cleaning staff, for example? How far should the pharmacist accept responsibility for ensuring privacy and dignity in treatment? Should they intervene if they see poor practice?
Vulnerable groups of patients raise additional ethical challenges. The position of children and their rights to consent to, or refuse, treatment vary significantly from country to country. The age of majority, the age at which sexual activity is not a crime, the recognition or otherwise of ever-earlier adoption of “adult” behaviour by young people – all suggest considerable sensitivity is needed in treating children. Elderly people, too, attract a great many prejudgements about their capacity to manage their own affairs and take decisions that should be regarded with caution. Persons suffering from mental disorders, learning disabilities or impending dementia often retain, in limited ways, the capacity to understand or contribute to their own care. Do hospital pharmacists help in assessments as to whether patients can manage their own medication? Should they intervene or raise concerns if use of psychoactive medication seems excessive? Do they involve themselves in policies and strategies to avoid covert medication, such as hiding medicines within food, for example?
The beginning of life
Situations that raise issues around the beginning of life are perhaps the most fraught of ethical battlegrounds. These situations sometimes challenge the personal values and beliefs of many health professionals rather than the values or behaviour that they have learnt to exhibit in their professional practice. Religious convictions or dicta on when life begins, what measures may be taken to avoid conception and what constitutes abortion are hard to ignore.
Hospital pharmacists will contribute to care in midwifery and gynaecology wards, in accident and emergency departments and in mental hospitals and care homes. Conception does not always take place in the context of a stable, loving relationship, and pharmacists may be called upon to assist or advise on management options and to supply the necessary medicines. What latitude is allowable to accommodate the reservations of the professional and the needs of the patient? Do all systems operate “conscience clauses”, and how do they work? At an even earlier stage, developments in genetics and in assisted conception techniques mean that previously avoidable genetic flaws or insurmountable obstacles to conception can now be addressed. What role should the pharmacist have in managing the care of such “patients”?
The end of life
If the beginning of life is fraught, still more so can be the end. Pharmacists and their skills in analgesia are much in demand to manage the fear and despair that can characterise terminal pain. While pain is perhaps the most common challenge in palliative care, there are many other causes of misery or uselessness that are not so easily addressed. Respect for the patient’s autonomy and wishes should not diminish at the end of life just because they may be difficult to discern. In the UK, the prospect of unwanted efforts by health professionals to preserve life at all costs has led to the development of “living wills” or “advance directives”. These attempt to express the wishes of people who may be anticipating unacceptable or overzealous measures to keep them alive when they may in fact be ready to go. Measures to give these directives legal status have recently been proposed. When pharmacists are talking to terminally ill patients, or to those who nurse or care for them, how do they deal with the fears and hopes for a peaceful end? Do they feel an obligation to ensure that such wishes are respected and addressed? Would they intervene if this seemed not to be the case?
Influencing the wider issues
In the wider arena of population healthcare, the recommendations of pharmacists can radically influence the availability of medication to patients, particularly within a state system. Decisions as to formularies, firstline treatments and excluded treatments are not based solely on scientific rationale, even if that were possible. The cultural values in society and the values held by policy makers, administrators and health professionals themselves all play a part in such decisions. Not least, moral debates about what should be funded from the public purse, what from private means and the responsibility to be taken for one’s own health will influence the outcome. At what point might pharmacists be expected to justify the ethical basis for their recommendations? Are they aware of what values they may have been adopting in their advice? Should these decisions too be influenced by the preferences and needs of patient groups or the population as a whole?
Before leaving the topic of ethics and pharmacy, we should mention two other aspects that do not appear on the UK medical ethics teachers’ curriculum: the effect of organisational values and culture on ethical behaviour and the impact of a business environment on professional autonomy and independence. While the values adopted by state healthcare systems may be broadly consistent with those of their healthcare professionals, the situation will be subtly different when the healthcare is privately funded.
It is even more different when, as in community pharmacy, pharmacists must balance their ethical values with harsh commercial imperatives to attract and retain customers, to make a profit and compete with other, less regulated, retailers of medicines. But that’s another story!