End-of-Life Nursing Care

Annie Pettifer, Joanna de Souza

• Publisher: SAGE Publications Ltd
• Year: 2012
• ISBN:
  9781446290200
• Edition: 1
• Topic: Medicine
• Subtopic: Gerontology Nursing

Students and newly qualified staff make up much of the workforce delivering end-of-life care but, because end-of-life care can be both technically challenging and emotionally demanding, it is an aspect of nursing that can cause considerable anxiety.

This very accessible, straightforward book helps to allay those concerns and enables pre-registration students to prepare confidently for the challenges they will face when they are caring for dying patients and supporting their families. Each chapter is based on a different and realistic scenario - reflecting a range of circumstances - to demonstrate the essential generic knowledge and skills they need to develop, and draws out the important practical and theoretical issues students should consider and address if patients and their families are to receive the best possible care.

Written by two experienced palliative care lecturer/practitioners, and mapping closely to the NMC?s 2010 domains, the book is tailored to the needs of student nurses working with adult patients. It explores the importance of their role in end-of-life care and how this interfaces with the roles of other multidisciplinary professionals involved in the care of their patients. It will also be helpful to students of other health-care professions and support newly-qualified health-care professionals working in adult health.

CHAPTER 1

End-of-life care – a historical perspective

Joanna De Souza with Annie Pettifer

This chapter will explore:

• How professional care of the dying has developed over the last century
• The philosophy of palliative care
• What we mean by the term ‘end of life’
• The End of Life Care Strategy
• How it might be different to be dying today

Introduction

The places where people die have changed markedly over the past century with most deaths no longer occurring at home but in hospital. In around 1900 about 85% of people died in their own homes, with workhouses accounting for most other deaths. By the mid-twentieth century around 50% of people died at home. In the early twenty-first century acute hospitals have become the most common place of death. (Department of Health 2008a)

Our first chapter will discuss the concept of end of life and explore the context of caring for those at the end of their lives and the influences that shape the care that is offered.

We will start from a historical perspective with a case presentation from the past, and trace how care of the dying has developed over the last century in response to changes in health care and society as a whole. As the story becomes current we will consider how end of life and end-of-life care is now defined. We will consider how government policy shapes the care in differing organisations and current initiatives which seek to develop end-of-life care provision.

CASE STUDY

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Bridget

Bridget is a 39 year-old married woman living with her husband and five surviving children aged between 18 months and 17 years. She lives in a small cottage in a rural village north of Leeds where she and her family are agricultural labourers on the estate farm. The year is 1880.

Bridget has had a troublesome cough for a short while now and expectorates sputum with traces of blood in it. Over the last couple of days she has become weak and has been unable to get out of bed. She has a fever with night sweats, flushed cheeks and bright eyes. She cannot eat.

Her family have seen this many times before. They know she has consumption and that she may die soon, as have many others in the village. They close the shutters of the cottage, light candles and call the vicar. Many family members, neighbours and friends call in so that the cottage is often full.

Bridget’s last days and nights are beset with coughing and a growing breathlessness as she loses the strength to cough any more.

Bridget’s family lay out the body after she has died and she remains in the house until the next day when a funeral is held. She is placed in a rough wooden coffin and this is carried down the street by the men of the family to the church. Being a regular churchgoer, she is buried in a shared grave at the back of the church graveyard. Most of the village turn out to pay their respects as Bridget’s family are well known.

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How professional care of the dying has developed over the last century

The case study above typifies common death in nineteenth-century Britain. In 1891–1900 life expectancy was 44 years for men and 47 years for women and in 1880 33% of those deaths were due to infectious and parasitic diseases. Indeed some 80,000 people died of consumption (now called Tuberculosis or TB) (Office for National Statistics 1998; House of Commons, 1999). Like Bridget, most people died at home after a short illness, cared for by family, neighbours and friends who would have been familiar with the process of dying. Professional health care would have been unavailable to the vast majority. The only professionals who would have played a significant role would have been the clergy.

Dedicated institutionalised care for the dying, in the form of hospices, dates back to 1842. Previous to this, and over the centuries, there had been places that offered care to the poor, ill and destitute, but many died without any kind of professional support. The idea of a specific place focusing on those in the last weeks of life was not well known. The word ‘hospice’ was first applied to the care of dying patients by a widow, Mme Garnier, who founded the Dames de Calaire in France, in 1842. Other hospices followed, including one established for the poor in Nottingham in 1877 by Mary Potter, a Catholic nun. It was served by the first Catholic order of nuns in the UK, her Little Company of Mary. Mary Potter herself suffered from what was thought to be a terminal episode of illness, but she recovered and was inspired to provide some solace for others (Tothill, 1999). Nuns continued to be the major providers of end-of-life care with the opening of hospices such as Trinity Hospice (originally the Hostel of God) in 1891 and St Joseph’s hospice in London in 1905.

Reflective questions

What might it have been like to care for someone like Bridget and her family, where there would have been no running water and very little access to any equipment or medications?

Palliative care in some parts of the world still reflects this reality. How much do we take the environment and tools we have for granted?

As the twentieth century progressed, the manner in which people died and the way dying people were cared for changed, reflecting shifts in society as the world became more industrialised and people moved to urban living. With the establishment of the National Health Service in 1948, professional health care was now available to all. By 1957, 45% of deaths occurred in hospitals (Ariès 1991) and with this came a diminishment in familiarity with death and caring for the dying previously held within the community. Many widespread infectious diseases, such as consumption, which our patient Bridget suffered from, were now treatable and people were dying from more protracted illness such as cancer. This meant that they needed more care for a longer period before death.

In the first 20 years after the creation of the NHS the experience of the dying was explored by a number of physicians seeking to improve the care offered to those close to death. John Hinton (1963), who went on to be an influential part of the modern hospice movement, documents that Osler, known by some as the father of modern medicine, as early as 1906, studied the symptoms of the dying. Hinton conducted his own studies in the early 1960s (Hinton 1963). He suggested that perhaps there had been little previous identification of the needs of the dying due to the difficulties of having conversations about dying between physicians and patients. He noted that in his study, which allowed patients to drive the conversation about what troubled them most, patients were so often relieved to be allowed to talk about their feelings and personal problems.

Hinton’s findings included the high prevalence of depression, physical and other mental distress, and also a need for care which included holistic elements such as spirituality. He also found that the majority of patients who were considered to be eligible to be referred to his end-of-life study had cancer. In his paper in 1963, he surmised that others were not referred partly due to the difficulty in diagnosing the dying phase of other illnesses, but also because their care was always more treatment orientated. His findings are hauntingly reflective of modern studies looking at the needs of dying patients, now more than 40 years later.

However, it may be argued that the course of modern end-of-life care was perhaps most heavily influenced by a young girl born in London in 1918. Cicely Saunders (later to become Dame Cicely Saunders), following a difficult school life, entered Cambridge to study Politics, Philosophy and Economics just before the Second World War. However, wanting to assist in the relief of the suffering she saw around her, she left her course to train as a Red Cross nurse at the Nightingale School of Nursing. A back injury led her out of nursing and to train as a medical almoner (a kind of social worker). She went on to work in London, where she used her new role to work with people with cancer in St Luke’s hospital (Du Boulay 2007). She found herself challenged by the patients she cared for, and in particular by a Polish patient – David Tasma – who she came to love and with whom she worked up to his death. She discussed with him her dreams of improving the care of dying patients by seeking to look after not only their physical needs but also their psychological and spiritual needs. David Tasma left her £500 to start a home for dying patients. Motivated by this, she embarked on medical training, qualifying as a medical doctor in 1957, and then used her training to enter the world of pharmacology and research.

Dame Cicely’s research interests were naturally in the control of pain in the terminally ill. While working at St Mary’s Hospital in London as a researcher, she explored the link between dependency on morphine and its administration, and demonstrated that regular low doses of morphine alleviated patients’ pain more effectively than the fewer, higher doses which had hitherto been administered to the dying. This research contributed to the World Health Organisation pain philosophy and changed the experience of the dying forever (WHO 2006).

Dame Cicely then began a period of 10 years of research into the care of the dying at St Joseph’s Hospice in Hackney – one of the very few homes for dying people at that time. Many of the common practices in care of the dying that we see today result from the work she undertook there, including the introduction of the total pain model which highlighted the need to look holistically when considering pain relief at the end of life.

In addition to her clinical and research roles, Dame Cicely, inspired and supported by two more Polish men, one of whom she eventually married, worked at raising awareness and funding to open the St Christopher’s Hospice in South London in 1967. Initially an inpatient facility, home visits and day care services and were quickly established, and St Christopher’s Hospice became the prototype model for modern hospices and palliative care in the UK and internationally. Through extensive outreach, research and educational endeavour, care of the dying became a growing health care speciality. Cicely Saunders was made a Dame Commander of the British Empire in 1980 and was awarded Britain’s Order of Merit in 1989 for her services to health care.

The philosophy of palliative care

The word ‘palliative’ is derived from the Latin word ‘paliere’, which means to cloak or shield. It may be considered, therefore, as an approach to care which aims to mitigate or shield someone from the distressing effects a serious illness has on them. The Oxford Dictionary (2012) defines ‘palliation’ more simply as:

intent to alleviate a problem without addressing the underlying cause.

In essence, then, palliative care is simply an approach to caring for someone which aims to alleviate the effects of a disease rather than disease itself. It is summed up by the most widely used definition, by the World Health Organisation, first in 1989 and through several revisions to this current definition:

Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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. (WHO 2012)

Such definitions clearly show that palliative care may be helpful to all those with advanced progressive illness regardless of their diagnosis, age or circumstances.

The impetus started by Dame Cicely led to the development of a whole movement in palliative care. Initially, nurses were more receptive to her holistic philosophy than the medical profession (Clark 2008) and in the first couple of decades the modern palliative care movement was nurse-led. In the UK, palliative care also developed as a speciality that crossed the traditionally fixed institutional contexts. Palliative care teams worked in hospitals, hospices and in the community, often with strong links between them as they were based next to each other to facilitate better communication. Voluntary sector organisations – in particular Macmillan and Marie Curie Cancer Care – also played a major role in how palliative care developed, while other organisations, such as Help the Hospices and the National Council for Palliative Care, became major players particularly focusing on issues of funding and policy. Doctors then increasingly became more involved and more influential in the decision-making processes, and in the late 1980s palliative care was officially recognised as a medical speciality. However, it has remained a speciality that is recognisable by its strong tradition of multidisciplinary working and leadership.

The effect of AIDS on the development of palliative care

Although palliative care developed as a speciality focusing mainly on cancer in the UK, in the early 1980s a new disease – human immunodeficiency virus (HIV), known then as AIDS (acquired immunodeficiency syndrome) – emerged that diversified its focus. It was first recognised as a major end-of-life illness in the USA but soon became a disease affecting much of the western world.

In 1988, the Mildmay Mission in London, which had previously been more of a mission hospital, became Europe’s first dedicated AIDS hospice. This was closely followed by the London Lighthouse. While it is not easy to trace ...