Primary Palliative Care

Dying, Death and Bereavement in the Community

Rodger Charlton

• Publisher: CRC Press
• Year: 2018
• ISBN:
  9781315343334
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This book is intended for all those who not only have to give bad news but who are also keen to give as much help and support as possible to partners and families - both immediately and during remission relapse terminal illness dying or grieving. Although it concentrates on the somewhat neglected interests of relatives much of it is very relevant to the care of patients. It is of use in a hospital environment and in primary care and readers including doctors nurses social workers and spiritual advisers will value it both when they are in training and perhaps especially in the years after qualification.

CHAPTER 1

The development of palliative care within primary care

Mandy Barnett

Introduction

In this introductory chapter the historical context of care of the dying is reviewed, as well as the evolution of terminal care into the modern field of palliative care. Some of the services available to people with palliative care needs in the community, and the interface between primary care and specialist palliative care, will be described in the context of ongoing changes in demography and organisation of the health service in the UK today.

Historical context

The modern hospice movement in the UK is largely considered to date from the opening of St Christopher’s Hospice in 1967. However, the original concept of a hospice as a place of rest for weary travellers dates back many hundreds of years to a time when religious institutions welcomed and tended pilgrims. This gradually evolved into care of the sick and dying. Associated as they were with Catholic organisations, hospices disappeared during the Reformation. The first ‘modem’ hospice was founded in France in 1842. In the UK, three Protestant Homes of Rest were founded in the late 1800s, while St Joseph’s Hospice, which opened in London in 1905, offered care for the dying through its order of nursing sisters.¹

Role of the doctor

Care of the dying was not considered to be the province of the physician until the nineteenth century.² Since then, the medical profession has increasingly accepted responsibility for end-of-life care, but not without difficulty. Over the last 50 years there has been increasing reliance on technical advances, together with devaluation of the more subtle concept of doctor as healer. Alongside this, improvements in public health medicine have increased life expectancy in the Western world from 50 years at the beginning of the twentieth century³ to 80 years in 2001. However, although death may be postponed, it remains inevitable. Yet ironically, as our society becomes more open about sexual and emotional issues, death has retreated to become a taboo area. In the hospital setting, death may be seen as a failure for which doctors are ill prepared by their training. As Balfour Mount pointed out: ‘when medical technology doesn’t know what to do, the quality and quantity of care falls away. How can we justify that?’⁴

Hospice movement

It was the increasing sense of depersonalisation in the acute hospital setting which provoked Dame Cicely Saunders, the founder of St Christopher’s Hospice, to break away and develop a modern hospice where care of the dying individual would entail total care.

The first new charitably funded hospices concentrated on offering inpatient services for people who would otherwise have died in acute hospital wards. However, they soon expanded their horizons to develop home-care teams, day centres, hospice at home, bereavement support and specialist services such as lymphoedema clinics. Gradually, too, the NHS began to recognise the need for such services and to take on increasing responsibility for funding. This led to the setting up of hospital support teams and the building of the first entirely NHS hospices in the 1970s. At that time, patients were usually those with a prognosis of days or weeks, and hospice care was therefore known as terminal care. The majority of patients had cancer, although some hospices had a more open policy, catering for patients with progressive neurological conditions, and more recently those with AIDS.

Terminal care or palliative care?

The change in terminology from terminal care to palliative care reflected the growing perception that the palliative care approach would benefit all of those living with a terminal or life-limiting disease, and not just those in the final stages. Gradually, as more hospices developed and more professionals worked in them, the concept of a specialist multidisciplinary field of palliative care evolved. For doctors, this culminated in the recognition of palliative medicine as a specialty by the Royal College of Physicians in 1987, which led to the development of a career path and training programme. Similarly, for other healthcare professionals there are now a variety of postgraduate training programmes and higher degrees in palliative care. Today, palliative care is viewed as an integral part of mainstream healthcare.

What is palliative care? Terms of reference

Terminal care is a fairly self-explanatory concept. Palliative care is a more nebulous term arising from the classical ‘pallium’ (Latin for cloak or cover). The modern definition in the Oxford Dictionary is a little more helpful: ‘Palliate: to mitigate, alleviate, give temporary relief’.

A more comprehensive healthcare definition has been provided by the World Health Organization:

The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. ... Palliative care ... offers a support system to help patients live as actively as possible until death ... offers a support system to help the family cope during the patient’s illness and in their own bereavement.⁵

Palliative care in primary care

Needs and service provision

While hospital specialists have struggled with care of the dying, the concept of holistic care for people at all life stages forms a fundamental principle of primary care. For most people with a terminal illness, their aim is to live in their own homes, to be cared for physically, to have distressing symptoms alleviated as far as is possible, and to be treated and respected as autonomous individuals. To enable these needs to be met, there is a wide range of services that may be accessed by patients and their families (see Box 1.1).

Box 1.1 Services available to palliative care patients in the primary care setting (comprehensive but not exhaustive)

Primary care team:

• GP district nurse
• Marie Curie nurses
• Social Services (e.g. home-care support)
• Community/cottage hospitals
• Nursing homes – for respite or long-term care
• Other generic services: community pharmacists, physiotherapists, podiatrists, etc.)

Specialist services:

• Macmillan (or equivalent) specialist community nurses with or without
• consultant in palliative medicine
• Hospice at Home
• Hospice/palliative care day centres

Living and dying at home – the impact of social and organisational change on primary and palliative care

Palliative care has always been a feature of primary care. Most people spend 90% of their last year in the community, and the majority would also prefer to die at home.^6,7 The paradox is that the more ‘advanced’ a society becomes, the less likely it is that this final wish will be fulfilled. There are two aspects to the problem, namely symptom control and home-care support.

Symptom control in primary care

Good symptom control has two essential ingredients, namely good communication (with patients and carers and between healthcare professionals) and a problem-based assessment of the possible therapeutic options. This requires a detailed knowledge of both pharmacological and non-pharmacological interventions. A general practitioner who is looking after an average of five to ten patients per year with palliative care needs is unlikely to be able to keep up with either new pharmacological developments or the benefits of treatments such as palliative radiotherapy or chemotherapy.⁸

Surveys in the 1980s certainly found that many general practitioners (32%) struggled with pain control.⁹ Although many GPs receive training in symptom control during their registrar year,¹⁰ this is limited, and a survey of new GP principals found that they were uncertain about basic principles with regard to opioid prescription.¹¹ Furthermore, GPs may not update their knowledge subsequently. Among GPs who were referring to a hospice inpatient unit, 37% had not attended any educational event pertinent to palliative care during the past 3 years. Among patients referred by this group, a common symptom was constipation secondary to inadequate prescribing of aperients alongside opiates.¹² This was corroborated by a study of patients’ relatives, which indicated comparatively fewer instances of poor pain control (15%), but still significant problems with other symptoms.¹³

Social and nursing care: a demographic time-bomb

It is well recognised that in Western society the population is ageing, as life expectancy increases and the birth rate decreases. Many older people live healthier, more independent lives than previous generations. However, for those whose health deteriorates, there is less informal support available in the community and more reliance on professional carers than ever before. A number of social and demographic factors contribute to this situation, including the following.

1. Social mobility and the demise of the extended family. Accelerating changes in employment patterns have led to families becoming more widely scattered. Relatives often live too far away to contribute practical care. Conversely, as communities become more transient, people receive less contact and support from neighbours.
2. Ageing population. Children of the elderly are becoming fewer and are themselves older.
3. Time to care. Changing work patterns, increasing prevalence and costs of home ownership and increasing divorce rates mean that many would-be carers rely on dual incomes, or are lone parents (often is...

Table of contents

• Cover
• Title Page
• Copyright Page
• Contents
• Foreword
• Preface
• About the Editor
• About the Contributors
• 1 The Development of Palliative Care within Primary Care
• 2 Clinical Governance and Palliative Care
• 3 Communication with the Dying and their Loved Ones
• 4 Pain Control in Palliative Care
• 5 Symptoms other than Pain
• 6 Complementary Therapies in Palliative Care
• 7 Out-of-hours and Emergency Palliative Care
• 8 Palliative Care of Non-malignant Conditions
• 9 Role of the Primary Healthcare Team in Palliative Care
• 10 The Plight of the Informal Carer
• 11 Spirituality and Ethnicity
• 12 Ethics and Dying
• 13 Thinking about Bereavement
• 14 Drawing Up and Applying a Personal Development Plan (PDP) in Palliative Care
• 15 Teamwork and Education through Significant Event Audit (SEA) and Practice Professional Development Plans (PPDPs)
• 16 A journey through cancer
• Index