ABSTRACT

Ethical and legal issues are a common feature of contemporary healthcare, mainly because research and advances in technology, pharmaceuticals and treatment options allow people in some circumstances to be given effective and even curative treatment where in the past this was not available. Even when the condition cannot be eradicated, symptom management and palliative care can slow down the disease trajectory, improve the prognosis or allow someone to lead a relatively normal life while living with the condition. Individuals with long-term conditions can particularly benefit from such advances in medical science, but this in turn can give rise to a number of ethical dilemmas. Long-term treatment options can be costly, and in a publicly funded health service, difficult questions inevitably arise about how worthwhile such treatments are and how they are to be funded. Individuals with long-term conditions will have to make decisions about a range of treatment options over a period of time. While UK law presumes (unless proven otherwise) that a person has the capacity to make decisions, overt and subtle influences on service users made vulnerable because of their health status can affect their ability to make autonomous decisions. Perhaps the most complex and difficult decisions that service users, their carers, family and friends face are those at the end of life, when choices may need to be made about continuing or discontinuing treatment or even assisted dying. This chapter will explore the concept of vulnerability within the context of ethics and law. The importance of the ethical principle of autonomy and its relationship to the legal requirements for informed consent and mental capacity will be examined with reference to the recent Mental Capacity Act 2005. The theory and practicalities of advance decisions will be considered and the difficulties in the allocation of resources to a group with multiple and lengthy health needs discussed. The chapter will close with an exploration of end-of-life decisions. Throughout the chapter, examples of ethical dilemmas will be used to illustrate the issues raised, and reference will be made to significant legal judgements where controversial cases were settled in law.