Law, Palliative Care and Dying

Legal and Ethical Challenges

John Lombard

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351716727
• Edition: 1
• Topic: Law
• Subtopic: Law Theory & Practice
• Index: Law

Law, Palliative Care and Dying critically examines the role of the legal framework in shaping the boundaries of palliative care practice. The work underlines the importance of a distinct legal framework for specialist palliative care which can provide clarity for both the healthcare professional and the patient. It examines the legal and ethical justifications for specialist palliative care practices and, in doing so, it questions the legitimacy of the distinction between euthanasia and practices such as palliative sedation. Moreover, this work discusses the influence of a human rights discourse on palliative care and examines the contribution of autonomy, dignity, and the right to palliative care.

This book includes detailed comparative research on several European jurisdictions. The jurisdictions illustrate varied approaches to palliative care regulation and promotion. In this manner, the role of professional guidelines and legislation are drawn out and common themes in the regulation of palliative care emerge.

1 The development and practice of palliative care

1.0 Introduction

Care for a person at the end of life has developed considerably in recent decades. Its development has been influenced by clinical, social, and cultural elements. The interplay of which has resulted in the emergence of legal and ethical issues which push at the boundaries of what constitutes appropriate end-of-life care. These challenges are exacerbated by debates surrounding suitable terminology, the framing of definitions, the status of ethical justifications, and even what role should palliative care have in relation to broader end-of-life practices. There is no simple or definitive answer for many of these issues. Instead, this chapter will outline the development and practice of palliative care, and in doing so, will begin to tease out the central concepts which inform and underpin its practice. This can provide the basis for clearer analysis and discussion. This approach will highlight diverging perspectives on palliative care practices, underline points of legal and ethical contention, and will illuminate areas where the legal framework has a significant role in shaping the practice of palliative care.

Over the course of three sections, this chapter will discuss the development and practice of palliative care in general and as it is currently provided in the United Kingdom, Ireland, and in other European countries. The evolution of palliative care will be discussed in the first section. This discussion will focus on the origins of palliative care and the organisations which have led the promotion and provision of palliative care. The emergence of modern palliative care as a distinct form of care will be highlighted. The advent of modern palliative care reflects an holistic approach to patient care as well as a more focused approach to pain management. A significant shift in the development of palliative care is that it is no longer limited to the cancer patient. It is now of broad applicability and has a correspondingly important role in the healthcare system. Different illnesses raise distinct problems but over the course of this section key overlapping challenges to the provision of palliative care will be identified.

The provision of palliative care is considered in the second section of this chapter. Hospices, hospitals, and palliative care in a community setting will be discussed. This will illustrate the growth in palliative care and it raises the question of whether the current legal framework in the UK and Ireland for specialist palliative care is adequate given the breadth of palliative care providers and the treatment which they provide. This section also underlines the argument that palliative care has largely developed through the actions of representative bodies and charitable organisations rather than being driven by state led initiatives.

The third section explores the practices closely associated with specialist palliative care, namely palliative sedation and artificial nutrition and hydration. This section will highlight the ongoing debate surrounding these practices and will demonstrate the importance of examining the legal framework for their provision. For instance, these practices represent a key aspect of specialist palliative care and it is important for both the patient and the healthcare professional that the legal framework is clear, consistent, and protects the patient’s human rights. The combination of these three sections provides a rounded introduction to the development and practice of palliative care in the UK and Ireland as well as highlighting the legal and ethical issues which later chapters will address.

1.1 The development of hospice and palliative care

The development of palliative care as a distinct form of care is closely linked to oncology and care of the cancer patient.¹ This becomes clear in considering the background to the early providers of care at the end-of-life such as hospices. The word ‘hospice’ is derived from the Latin word ‘hospes’ which translates as host, guest or stranger.² Accordingly, between the 11th and 18th centuries the term hospice referred to ‘a place of shelter for pilgrims and travellers’.³ This understanding of the term began to change when in 1842 Mme Jeanne Garnier founded the Dames du Calvaire in Lyon which provided care for the dying. The term ‘hospice’ was applied to this form of care which was marked by ‘a respectful familiarity, an attitude of prayer and calm in the face of death’.⁴

In Ireland, hospices were opened in Cork and Dublin in the 19^th century. Marymount Hospice in Cork opened in 1870 and originally cared for cancer and tuberculosis patients.⁵ In 1879, the Congregation of the Religious Sisters of Charity (Irish Sisters of Charity) established Our Lady’s Hospice in Dublin.⁶ This hospice originally concentrated on the care of patients with tuberculosis but near the end of the 1950s more and more cancer patients were admitted. These hospices cared for patients who were not admitted to hospital. An inability to pay for care, lack of appropriate facilities, or the worry that infection would be transmitted to other patients were among the reasons for a patient being refused care in a hospital.⁷ Consequently, hospices began to take on a distinct role in the care of the terminally ill patient; a role which hospitals were unwilling and/or unable to provide at the time.

The Irish Sisters of Charity were also instrumental in the development of hospice care in England as this congregation was involved in the founding of St Joseph’s Hospice in London in 1905.⁸ The background to the founding of these early hospices reveals certain common characteristics. They grew from a combination of altruistic contributions, religious influence, and moral concerns.⁹ Despite the close religious ties of these early hospices, care was available for those of any or no religious belief.¹⁰ Nevertheless, there were limits to what could be achieved by this early form of hospice care.¹¹

The standard of care for the dying person was restricted by the level of medical knowledge on pain management,¹² and the lack of appropriate drugs.¹³ A culture of research into end-of-life care and pain management began to emerge in the 1950s, as signalled by research on cancer carried out by Bailey,¹⁴ Aitken-Swan¹⁵ and, in particular, Dame Cicely Saunders.¹⁶ It was in St Joseph’s Hospice where Dame Cicely Saunders began her clinical research in 1958.¹⁷ Research was also being conducted in the United States around this time, particularly by Elisabeth Kübler-Ross, which would prove influential in shaping the debate on care of the dying person in the US.¹⁸ Kübler-Ross sought to promote more open discussion at the end of life and addressed the reticence which isolated the dying person from their carers and those around them.

The research led to a greater understanding of the care required for cancer patients and, ultimately, resulted in infrastructural changes which were a sea-change in caring for the dying. In this regard, Dame Cicely Saunders founded St Christopher’s Hospice in London in 1967 which marked the beginning of modern hospice care.¹⁹ St Christopher’s Hospice signalled a more focused attempt to manage and understand the nature of pain experienced by the patient. For instance, research was carried out on methods of pain relief such as the Brompton Cocktail,²⁰ and the concept of ‘total pain’ was identified. Total pain recognises the multi-faceted nature of pain including its physical symptoms, as well as emotional, social, and spiritual components.²¹ Adequately treating such pain is a complex task which requires careful assessment of the patient and an awareness of the limits of various forms of care. The healthcare professional is required to take account of each of the components and by doing so ‘could almost get total pain control’.²²

The research conducted in St Christopher’s Hospice was valuable in understanding the effect and role of drugs for pain relief, as evidenced by subsequent World Health Organization engagement on this subject.²³ This included the publication of ‘Cancer Pain Relief’²⁴ which set out a three-step analgesic ladder; the third step being the use of strong opioids. The availability of opioids for pain relief was among the early concerns of the World Health Organization in relation to palliative care and led to ‘an international initiative to remove legal sanctions against opioid importation and use’.²⁵ The availability of opioids is not an isolated issue to be addressed in the legal framework. A closely related point to emerge is the appropriate use of opioids given their potential to bring about death. These points highlight the role of a legal framework in influencing and shaping clinical aspects of end-of-life care.

The work of St Christopher’s Hospice also informed the development of hospice and palliative care internationally. St Christopher’s Hospice hosted practitioners from other jurisdictions who subsequently applied the knowledge and experience gained to caring for the dying in their own country. Balfour Mount, a urological surgeon from Canada, visited St Christopher’s Hospice in September 1973 and went on to establish a unit in the Royal Victoria Hospital Montreal and coin the term ‘palliative care’.²⁶ This was more than a mere change in terminology and signalled a broader application of the hospice philosophy and ‘an expanded clinical ambition’.²⁷ Similarly, the visit of Gustavo de Simone resulted in the founding of the Pallium organisation in Argentina and he went on to be a key figure in the development of palliative care in South America.²⁸ This underlines how hospice and palliative care often developed through the work of individuals and charitable organisations rather than through direct state involvement. Nonetheless, hospice and palliative care services continued to expand. Research by the International Observatory on End of Life Care suggested that in 2011 ‘136 of the world’s 234 countries (58%) had one or more hospice-palliative care services established’.²⁹ These services are at varying degrees of maturity and are shaped by the cultural context and normative values in each jurisdiction. These factors must be kept in mind in subsequent chapters when examining the role and potential limits of th...