This chapter discusses the role of palliative care in the management of respiratory problems in neurological disease. To realize the right to live and to enjoy equal participation for neurological patients with respiratory symptoms may be complex and require extensive human, technical and financial resources, and, especially in low- and mid-income countries these resources may not be present. National and cultural differences in the role of palliative care are discussed, furthermore specific problems of palliative care in respiratory therapy such as correct indications, informed consent issues, therapy restriction physician-assisted suicide and euthanasia, in care settings such as critical care. The authors suggest a pathway to decision-making and introduce treatment strategies with a focus on respiratory symptoms.

In 1990 the World Health Organization defined palliative care as ‘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’. These words describe how modern palliative care has developed from the passive accompanying of dying patients, to a more dynamic multidisciplinary approach which attempts to address priorities from an individual's perspective. It recognizes that patients deserve to receive such care even at early stages of their illness and that palliative care is relevant to patients both with cancer and other diseases. It emphasizes the need to support the family and carers and to continue that support into bereavement. The overarching concept is that of enabling people to ‘live well’ despite having a fatal diagnosis (Table 48.1).

Specialist palliative care requires a team approach to identify and address the issues that have a negative impact on the patient's quality of life. Specialist palliative care teams are now available as a resource to most hospitals, primary care teams and specialist inpatient units or hospices. Here, in addition to doctors and nurses, a wide range of disciplines with specialist expertise are collected.

Introduction

Changing role of palliative care in oncology

The World Health Organisation (WHO) defines palliative care as ‘the active total care of patients whose disease is not responsive to curative treatment, where control of pain, of other symptoms and of psychological, social and spiritual problems is paramount with the achievement of the best possible quality of life for patients and their families as the goal’ (World Health Organisation, 1990). Palliative care should now be considered an integral part of service planning and care delivery in oncology.

This chapter covers common problems in symptom control, communication, ethical decision making, and the financial difficulties of patients with advanced cancer.

Changing model of palliative care

In the old model of the cancer journey (Figure 7.1(a)), palliative care services would only be involved at the end of life when no further oncological or supportive treatments were available. This was a ‘terminal care’ service for those clearly at the end of life. But, the symptoms that were being controlled occur not only at the end of life but also at different degrees throughout the cancer journey. The new model (Figure 7.1(b)) attempts to dovetail palliative care with active treatment, gradually increasing its involvement as active treatment becomes less appropriate. Some patients, such as those with carcinoma of the pancreas, are likely to need palliative care input early in their illness.

Pain control

Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage.

Introduction

Being part of the care system, palliative care expresses and interprets its mission within the paradigm of care. The historical development of palliative care is bounded by this constriction. A paradigmatic analysis of palliative care shows how palliative care gives expression to the constraints of the broader paradigm of care. The practice of contemporary palliative care also exhibits, in general terms, the detrimental effects of the broader paradigm. Problems, therefore, arise from palliative care's conformity to the paradigm of care.

This chapter aims to develop a brief paradigmatic analysis of palliative care using the same framework that was derived for care in general, in Chapter Two (refer ‘Paradigmatic analysis’ section). In addition, this chapter aims to identify the key problems arising from the transference into palliative care of the detrimental effects of the paradigm of care.

It is argued that the paradigm of palliative care strongly exhibits all the major features of the broader paradigm of care. The main detrimental effect of the paradigm of care is to establish and validate the distinction between a socially valued class of care providers such as doctors or philanthropists and a socially devalued class of care recipients and people excluded from care. As the social organisation of care becomes more modern and industrialised, this distinction becomes increasingly pronounced. Wide-ranging institutionalisation of devalued people becomes the preferred form of social management in modern times. The social devaluation of people who receive care becomes more pronounced and systematised with the increasing dominance of the institutional model of care.

This central defect is also pronounced in palliative care, through its conformity with the broader paradigm. The social devaluation of people who are dying is perpetuated by the way modern palliative care is originally conceived and by the way it continues to be constructed. The key problem, therefore, is that there is a fundamental contradiction between palliative care ideals and its definition, organisation and practice.

This chapter is divided into two sections. The first section, ‘Paradigm of palliative care’, develops a brief paradigmatic analysis of palliative care, using the same key features and sub-headings as for the paradigm of care in the previous chapter (refer ‘Paradigmatic analysis’ section).

Christopher Pallis was the principal writer, translator and thinker of the Solidarity Group, which was at its most active and exerted greatest influence in Britain during the 1960s and the first half of the 1970s. It was a section of the Old Left which broke away to become, it can now be seen, part of the New Left, although it has never been accepted as such – especially since it almost immediately passed beyond any recognizable Marxism to a fully left-libertarian position, while largely holding back from the self-description of ‘anarchist’. Pallis, in particular, was always extremely critical of anarchism and the anarchists, denying that he himself was an anarchist, only being comfortable with the appellation of ‘libertarian socialist’. Because of the way in which his writing fell between the poles of Marxist humanism and anarchism; because it overwhelmingly appeared in cyclostyled publications, never being reprinted by mainstream publishers; and because of his own pseudonymous existence as ‘Martin Grainger’ and especially ‘Maurice Brinton’, Pallis has never received the recognition that the quality of his political output deserves.

Although in the late sixties and early seventies Solidarity's ambition was to inspire by its example a major movement – and indeed, at one time or another, at least twenty-five groups existed in London and elsewhere – in terms of numbers its membership was never appreciable. Its best-known adherent was almost certainly Ken Livingstone, former Leader of the GLC (Greater London Council) and current Mayor of London, who in an interview with Tariq Ali recalled that in the late sixties:

Yet this is to miss the point. Solidarity's significance lay not in its size but in the excellence of its publications. The group was initially called Socialism Reaffirmed and its journal first appeared in October 1960 under the title of Agitator (redolent of the Trotskyist origins of most of the group's founding members); but from the sixth issue (May 1961) it became Solidarity.

Leaders in end-of-life care recently developed a set of precepts for palliative care:

The following two case reports illustrate the acute and chronic nature of palliative care in cancer nursing. They also demonstrate that relationships, trust, and continuity are important, and that a full and “human” assessment of the patient and family is critical if their needs are to be met.

CASE 1

RG is a 45-year-old man who was diagnosed with advanced gastric cancer one month prior to admission to the cancer center. He is divorced, has two adult daughters, three grandchildren, and lives with his fiancée who is 5 months pregnant. He has a recent history of drug abuse including opioids and crack cocaine, and had been in a methadone maintenance program. On admission to the cancer center he was cachectic, had severe abdominal pain, gross ascites, early satiation, nausea and vomiting, insomnia, fatigue, and general irritability.

RG was not a surgical candidate but was offered chemotherapy, which he accepted. During the 2-week hospital admission he had his ascites drained, a PEG feeding tube inserted, a PORT placed for central venous access, and was started on a parenteral infusion of morphine sulfate for pain.

Introduction

During the past decade, 11 million cases of cancer were diagnosed and 5 million people died from cancer. Approximately one half the patients diagnosed with cancer develop metastatic disease, and more than 70% of all cancer patients develop symptoms from either their primary or metastatic disease (1–4). The decrease in the total number of cancer deaths that occurred between 1996 and 1997 was not sustained; there were 955 more cancer-related deaths in 1998 than in the previous year (5). As the second most common cause of death in the United States, accounting for 23% of all deaths in 1998, cancer is the leading cause of death among women ages 40 to 79 years old. It is estimated that 1,268,000 new cases of cancer will be diagnosed this year, and 553,400 will die of cancer, more than 1500 people a day. Cancer of the lung, prostate, breast, and rectum constitute more than 50% of all cancer deaths.

Palliation represents a large component of cancer treatment and includes the use of therapeutic and supportive care measures. Unlike other aspects of cancer therapy, tumor control and survival are not the endpoints of therapeutic success in palliative care. Quality of life is now recognized as an endpoint which is as important as survival (6,7). The goal of palliative care is to effectively and efficiently relieve symptoms and maintain the maximum quality of life for the duration of the patient's life (2–4,8–13). The effectiveness of palliative therapy can be assessed, in part, by the percentage of patients who experience persistent/recurrent symptoms and the effort required to control these symptoms with a variety of therapeutic modalities (12, 14, 15).

Palliative care and the hospice movement were founded as a response to people dying from cancer [1]. However, there is now wide recognition that palliative care should be provided and made available for people with a range of progressive advanced chronic diseases including dementia, frailty and organ failure. This is particularly pertinent as the population ages and a growing number of people are dying with these conditions. This chapter defines palliative care and the role of the psychiatrist, and examines some current issues in palliative care including having difficult conversations, dealing with uncertainty, symptom control and supporting grieving family and friends both before and after death, with a focus on the needs of those with dementia.

Definition: palliative care is defined as the active care of patients with active, progressive or advanced disease, often with a limited prognosis for whom control of pain, other symptoms, psychological, social and spiritual issues are paramount. The goal of palliative care is achievement of the best quality of life for patients and their families.

Principles of palliative care: main principles are to provide holistic, integrated care to patients and families. (1) Provide relief of pain and other symptoms. (2) Integrate the psychological and spiritual care. (3) Provide support to help patients live as actively as possible until death. (4) Help patient's families cope during the patient's illness and in their own bereavement. (5) Any patient may be referred with any diagnosis at any stage of disease.

Palliative care services in UK: there are four core service structures providing palliative care, including hospital support teams, community palliative care teams, specialist day care units, and specialist inpatient care mainly provided by hospices. Patients with any diagnosis may be referred to a specialist palliative care service at any stage of their illness. Referrals should be based on need not prognosis. Many national and local charities (for example Macmillan Cancer Relief, and Marie Curie) are the main providers of specialist palliative care services. A directory of services can be obtained from www.hospiceinformation.info.

Management of common symptoms

Pain: pain is experienced by the majority of patients, and is a major cause of morbidity, isolation and fear. Assessment and review of a patient's pain is important in achieving good pain control.

Introduction

Patients admitted to critical care units share a common characteristic: without invasive organ support and monitoring they will die. The majority recover; some die quickly even with treatment; a third group are supported while their prognosis remains unclear. They continue to receive treatment until either they improve or until it becomes apparent that they are not going to survive. At some point, we all confront the question, ‘Is it appropriate to continue aggressive support in the face of increasing futility of treatment?’

The aim of this chapter is to describe the process of dying in this environment and how to deal with the challenges presented. It does not explore the decision-making processes and ethical conundrums of identifying and dealing with patients who are dying in the intensive care unit.

Epidemiology

A greater number of people die in hospital rather than at home. Of all patients dying in hospital, 10% die in critical care units. Mortality rates are about 20% to 30% in critical care units admitting general adult patients. Up to 70% of those patients who die have treatment withheld or withdrawn. However, there is large variation in the proportion of patients for whom treatment is withheld or withdrawn and in the way patients are managed during the dying process. Up to 70% of families describe patients suffering pain and discomfort in the days before death.

Introduction

Palliative and supportive care is integral to providing excellent care of patients with any life-threatening or life-altering disease. Patients and families now expect that they will receive attention that centres on their human as well as their medical needs. They expect that the emotional and psychological aspects of care will be recognised and addressed.

Palliative care, similar to comprehensive cancer care, is always a team effort as one clinician cannot answer the complex needs of someone at a time of crisis such as life-threatening illness.

The absolute ideal is to have palliative care specialists or a member of the gynae-oncology team with a special interest in palliative care, available from the inception of treatment, whatever the individual's prognosis. Some people will require minimal input from palliative care, while some will benefit from intense periods of input from palliative care specialists at specific points in their treatment. Others will require no direct intervention at all from specialist care. Additionally, some may benefit from discussion with the specialist palliative care team, although they will not need to be seen by them.

There is some confusion over the definitions of the terms palliative care, supportive care and end-of-life or terminal care, although they are widely used. This uncertainty can lead clinicians to wonder whether their patient is ‘ready for palliative care’ or ‘at that stage yet’. Patients themselves often share this confusion, and this may be particularly problematic in young people who are highly symptomatic but want to go on having life-prolonging treatment. They may fear that accepting palliative care is accepting psychological defeat leading to inevitable death and the end of their ‘active treatment’. This is a great shame as effective symptom control, alleviation of psychosocial distress and other problems (related to, but not necessarily caused by, the direct effects of the tumour) will provide a better quality of life, and possibly an improved prognosis.

Standard Definitions

Palliative Care

It was first defined by the WHO (1967) as ‘the active, total care of patients when the disease is no longer curable and the prognosis is short’. The complete opposite is ‘there is nothing we can do’. It involves meticulous symptom control as well as care of the patient and their family.