The care of the dying person is a fundamental and important part of nursing in critical, acute and continuing care as well as in community, hospital, and other institutions settings. While death and the process of dying are of importance to everyone, healthcare professionals face particular challenges in ensuring that high quality care is delivered in accordance with the patients’ wishes, and in their best interests. Some of these challenges are of a practical nature, but others pose significant ethical dilemmas and problems for practitioners striving to do the best for their patients while being mindful of their legal and professional duties. Beginning with an examination of the concept of the good death, this chapter explores the ethical issues of withdrawing treatment, including nutrition and hydration, assisted suicide, physician assisted suicide and euthanasia. Contemporary guidance will be drawn upon along with an evolving case study and legal judgments to illustrate and discuss the issues raised.

While death may be an event, dying is a process which due to technological advances allows patients to be resuscitated, given new treatments and kept alive using artificial means. In some instances, instead of asking ‘can we treat the patient?’ a more appropriate question may be ‘should we treat the patient?’ The concept of the good death has been a matter of debate for centuries. For example, discussion of the subject can be found in ancient writings such as Plato’s Dialogues from the 5th century BC. In the Phaedo for example, Plato recounts the ‘good death’ of Socrates who having been convicted of impiety and corruption of the young, chooses to die by taking hemlock rather than escape his prison cell (Plato 1969). For some the idea of a swift and relatively pain free death, such as that resulting from a catastrophic brain injury, might be considered a good death; while for others, a more protracted process that gives time for the person to see friends and relatives, say good bye or ‘put their house in order’ is more preferable. The quest for a universal definition of a good death therefore may seem futile, and instead should perhaps be recognised as dependent on individual preferences and culturally determined (Goldsteen et al. 2006).

Towards the end of life, many individuals receive palliative care, which is defined by the World Health Organisation (2002, p. 84) as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’. The United Kingdom (UK) is recognised as a leader in the development of palliative care as a speciality particularly through the work of Dame Cecily Saunders and the introduction of the hospice movement in 1967. There are also a number of policy and guidance documents specifically addressing end of life care. Two examples are the National Institute for Health and Care Excellence (NICE) quality standard End of Life Care for Adults (NICE 2011), comprising of 16 quality statements to ensure that the best care can be offered to individuals through the NHS, and The end of life care strategy: New ambitions (National Council for Palliative Care 2014). While patients may prefer to die in their own homes or in a hospice, opportunities for exercising choice regarding the place of death is limited. In England for example, around half of all deaths occur in hospital (Office for National Statistics 2015) where care may not always be given by palliative care specialists. It is therefore possible that some patients may not receive optimum care, an issue highlighted with the adverse publicity surrounding the use of the Liverpool Care Pathway. This will be discussed later in the chapter. A literature review by Cox et al. (2013) exploring public attitudes to death and dying in the UK, found that individuals’ views of the quality of care across different settings were based on the participants’ experiences of death of family members, friends and work colleagues. Thus personal experiences can be influential in forming views regarding the quality of care available.

While there have been clear improvements in end of life care there are still inequalities in access to good quality care and support (Leadership Alliance for the Care of Dying People, 2014). This is further exacerbated, in the UK for example, by the complex funding arrangements for end of life care which is only part-funded through the NHS and a substantial amount provided through voluntary sector organisations. Ensuring patients have a choice regarding their place of death as well as access to expert care, irrespective of the place of death, according to policy documents is a key priority in the UK. However, this means that sufficient resources need to be provided to support families and healthcare professionals to put this into practice. The following short case study may help us identify and work through some of the relevant issues here.

Everyone receiving treatment and care from healthcare professionals is entitled to decide what should and what should not happen to them and individuals should expect to have the decisions they make respected. The ethical justification for this is explained by the principle of autonomy. Being free to make autonomous decisions is a key principle in ethics and underpins legally valid consent. However, to exercise an autonomous decision a person must be able to understand the choices available, be free from any controlling influences and make the decision based on accurate information.¹ Under the terms of the Mental Capacity Act 2005 (DoH 2005), capacity is assumed, and incapacity needs to be proven through the use of tests for competence (Pattinson 2011). The Mental Capacity Act came into force in England and Wales in 2007, and provides a framework for decision-making for those no longer able to do this themselves. The remit of the Act is far reaching, but the underlying principles are particularly relevant when caring for people at the end of life. For example, a person should not be treated as lacking capacity simply because they make what is thought to be an unwise decision. People are allowed lawfully to refuse treatment or procedures, in what may seem to others to be an irrational decision. An example of this would be a Jehovah’s Witness refusing a lifesaving blood transfusion. While preferring to die rather than have a relatively simple procedure may seem irrational to someone who does not share that faith, as long as the person has capacity and their decision is unquestionably autonomous, then they have both an ethical and legal right to have their decision respected.

The link between autonomy and capacity is important, as it is only by having capacity that a person can exercise an autonomous decision, which consequently places others under an obligation to respect the person’s freedom of choice. At this stage in her illness, Susan has capacity and as death is foreseen, she has the opportunity to make some plans about her preferences. For example, she could prepare an advance statement; a written statement that sets out a person’s preferences, wishes, beliefs and values regarding their care. Such a statement can be written by any person at any time. And while not legally binding it is designed to ensure any preferences can be recorded, so that should capacity be lost in the future the advance statement could help others, such as Susan’s family, in making decisions on her behalf. In the statement Susan could let her family know her preferences about where she would like to die, who she would like to be present, or that she definitely would or would not like to be visited by a priest.

The advance statement is different to an advance decision. An advanced decision is a means by which a person may make decisions about the treatment they would not like to receive, should they lose capacity and be unable to communicate their wishes. Typically, this would include life sustaining treatments such as mechanical ventilation or cardio pulmonary resuscitation (CPR). Advance decisions are sometimes know by other terms such as an advance directive, advance decision to refuse treatment, or living wills. Such advance decisions are legally binding in England and Wales under the terms of the Mental Capacity Act (MCA) 2005 (DoH 2005). The MCA also makes provision for proxy decision making through lasting powers of attorney (LPA). This means that a patient can appoint someone of their choice to make treatment decisions they consider to be in their best interests once they lose capacity (Pattinson 2011). There are a number of conditions that have to be met for an LPA to be lawful but even if these are met, it does not mean that they are without problems in practice.

Suppose that Susan, towards the beginning of her illness, made an advance decision that she did not want to have CPR. Later on as Susan’s condition starts to deteriorate, Clare her daughter returns from Australia and finds out about the advance decision. Clare is very unhappy about this and tells the health professionals caring for her mother, that she wants everything possible done for her. If Susan still has capacity she will of course be able to explain her decision to Clare herself, and it is recommended that family members or carers be involved in or at least be aware of advance decisions. But if Susan is no longer able to communicate, then it will be up to the health professionals to explain. If Susan has made a fully autonomous decision about the CPR, then there can be no ethical justification to override her wishes just to appease her daughter. This will undoubtedly result in a difficult conversation between the health professionals and Clare, but this is more an issue of effective communication skills rather than one of ethics. Hence in England and Wales an advance decision for refusal of treatment, if valid and applicable, is considered to have the same force in law as if Susan was making the statement contemporaneously.

There are situations when rather than making a decision to refuse treatment, the patient themselves insists on being treated against the advice of the health professionals. The patient may understand that there is little chance of success, but decide they still want to receive treatment. For example, suppose that Susan decides that she wanted to continue with her cancer treatment against medical advice because she wants to stay alive until Clare and her family were able to travel from Australia. Even if she understands there are no guarantees that this will happen if the treatment continues, she thinks it’s worth the risk. If Susan’s autonomous wish is to be respected, then the treatment should continue, but this could be an ethical problem for the health professionals treating Susan, if they believe that the treatment will be of no benefit and not in Susan’s best interests. If respecting the patient’s autonomy is the best way in which Susan’s best interests are protected, then ethically, giving the treatment is justified. But there may be other competing interests or demands such as appropriate utilisation of resources and practising according to best evidence that also need to be taken into consideration. In a publicly funded healthcare system, it is important to ensure that best use is made of the resources available and NICE provides national guidance and advice to improve health care with resources that make best use of available evidence.

The aim of palliative care is to achieve the best quality of life for patients and their families, through the process of diagnosis, treatment and cure or, if there can be no cure, through the continuing illness (National Council for Palliative Care 2015). Administering treatment that is both costly and ineffective cannot be of benefit on an individual level for a patient like Susan, nor does it demonstrate good use of resources for society as a whole. While there may be justification for the withdrawal of medical treatment towards the end of life, there is some disagreement regarding what actually constitutes medical treatment and whether the administration of nutrition and hydration falls within the scope of this definition. A legal interpretation of nutrition and hydration can be found in Airedale NHS Trust v Bland. Tony Bland was a young man severely injured in the Hillsborough football disaster in 1989. He was left in a permanent vegetative state with no hope of recovery and although breathing spontaneously, was fed through a naso-gastric tube. Mr. Bland’s parents and treating physician believed that the withdrawal of treatment was in his best interest and so applied to the Court for permission to withdraw all treatment including artificially administered nutrition and hydration. Following a lengthy court case, in 1993, five Law Lords ruled that the artificial hydration and nutrition could lawfully be removed. The Law Lords did not draw a distinction between the provision of nutrition and hydration by artificial means and medical treatment, and consequently held that tube feeding was part of the regime of treatment and care (Pattinson 2011).

In Ireland a similar case, Re a Ward of Court, was heard in the Supreme Court in 1995. The case concerned a woman described as being in a near persistent vegetative state for over 23 years. She had experienced three cardiac arrests while under anaesthetic for minor gynaecological surgery in 1972 and suffered brain damage from which she did not recover. Consequently the woman was unable to communicate, move or swallow and was fed initially by a naso-gastric tube and later via a gastrostomy. The Ward’s family asked the court to have the gastrostomy tube removed, but the hospital where she was being cared for objected to discontinuing feeding which they saw as a means of hastening death. The Ward received excellent nursing care, any infections were treated with antibiotics and the nurses described in court the special relationship that had developed between them and the Ward. However, The Supreme Court did rule in favour of discontinuing feeding considering that as the woman lacked capacity, the decision should be made on the basis of best interests. Similar to, and possibly influenced by, the Bland case the Court considered the administration of nutrition and hydration through the gastrostomy tube to be medical treatment. As the treatment was of no net benefit to the Ward, it could be lawfully withdrawn (Dooley and McCarthy 2005).