Access to palliative care: international perspectives

This chapter describes the crucial relevance of palliative care in today’s healthcare environment, as well as the extent and reasons for the inequities in its accessibility globally. It depicts the ongoing efforts by international agencies worldwide to improve the availability of essential palliative care services. The chapter provides examples of activities to develop palliative care and innovative initiatives from a few countries with widely varying socio-economic backgrounds. Resources are provided that could support the initiation of new palliative care services in regions where there is a need. It is hoped that the reader, besides becoming a competent palliative care clinician, is also inspired to initiate activities to enhance access to palliative care services.

Self-care for health professionals

This chapter covers theory of palliative care issues associated with caring for people who are dying and the particular stresses involved. Sources of stress are multiple, may be accumulative, and are linked to all areas of an individual’s life. Working with dying people may be stressful, particularly if staff experience personal bereavement and loss. Such work can put staff in touch with personal anxiety about loss and death. Palliative care staff also find it very stressful to deal with patients who experience intractable pain, those who have young children, and those patients who are afraid to die. Symptoms that leave nurses feeling helpless, useless, and impotent are the most stressful to deal with, as is dealing with distressed relatives. The chapter looks at strategies for supporting a workforce involved in the ongoing delivery of palliative care to avoid burnout and compassion fatigue.

Palliative and end-of-life care for people with learning disabilities

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

Spiritual care

This chapter includes discussion on the nature of spirituality in a secular and multicultural world. It describes the relationship between religion and spirituality and the role of faith practices, religion, and spiritual assessment. It also outlines the nature of spiritual pain, and its importance in holistic care. The word ‘spirit’ is widely used in our culture. Politicians speak about the ‘spirit’ of their party, veterans talk about the wartime ‘spirit’; religious people discuss the ‘spirit’ as that part of human being that survives death, whereas humanists might regard the human ‘spirit’ as an individual’s essential, but non-religious, life force. Related words are equally common and diverse: footballers describe their team as a spiritual home; spiritual music and spiritual art are fashionable; and there are spiritual healers, spiritual life coaches, spiritual directors, and even spiritually revitalizing beauty products. Spiritual care, particularly of those facing their own death, demands the response of a wise and compassionate ‘spiritual friend’. Not every member of the multidisciplinary team will want to or be equipped to offer this level of spiritual care. But each can contribute to enabling a patient to find a ‘way of being’ that will help them to go through the experience of dying in the way appropriate to them.

Heart failure

This chapter covers the issues surrounding heart failure in patients with palliative needs, including definition of heart failure, Management of heart failure, end-of-life care, complex decision-making, and models of care. Chronic heart failure is a progressive, terminal syndrome and is the final common pathway of many cardiovascular diseases. There is difficulty in defining heart failure as there are many different criteria around the world used to define it. However, common criteria usually include history, physical examination, chest radiography, and echocardiography. The European Society of Cardiology defines heart failure as the presence of symptoms of heart failure at rest or during exercise, and objective evidence of cardiac dysfunction (usually on echocardiography).

Palliation of head and neck cancer

As a consequence of its location, head and neck cancer can affect breathing, speech, swallowing, and most of the special senses, and can impact massively on quality of life and body image. The head has a particularly complex anatomy in a very restricted space, and tumours have the potential to cause very complex and severe pain, often with a major neuropathic element. Disease in the mouth can lead to fistulae and aspiration pneumonia. Some tumours carry a risk of life-threatening bleeding. Management of all of these and other features of advanced head and neck cancer require skill and knowledge. Head and neck cancer, perhaps more than any other cancer, involves the total person, and requires a multidisciplinary response. This chapter summarizes the clinically important aspects of the main pathologies, and discusses a practical approach to symptom control of this difficult area.

Skin problems in palliative care

This chapter discusses skin disorders. Skin disorders affect patients with early and advanced malignant and non-malignant disease. In addition to distressing physical symptoms, the appearance of pressure sores, malignant wounds, and lymphoedema impact on patients’ social functioning, mood, and quality of life. Meticulous and prompt management of symptoms can make a huge difference. There is a growing body of research into drug treatments for pruritus in palliative care, and interventions for managing lymphoedema and wounds more effectively. Key principles in the management of wound care, lymphoedema, and pruritus are examined. Skin wounds are common in advanced malignancy. Pressure ulcers are most frequently seen, affecting an estimated one-third or more of patients in palliative care units. Malignant/fungating wounds occur in approximately 5–10% patients with metastatic cancer and are associated with significant physical and psychological distress. Loco-regional skin involvement (e.g. breast fungation) should be distinguished from generalized skin metastases which imply advanced disease.

Research in palliative care

Research in palliative care is gaining momentum and good quality research is helping form an evidence base which clinicians will be able to work within. There are ongoing challenges with carrying out research in palliative care, including high attrition rates, culture and ethical views around research in patients with terminal illness, funding, and gatekeeping. However, it is essential that to provide the best care that robust research is carried out. This can take the form of qualitative and quantitative research, and both are useful and valid in developing a research base of evidence if they are used in the correct contexts.

Oncology and palliative care

This chapter provides an overview of current oncology practice as it pertains to palliative care. It covers the care of patients undergoing oncological interventions including some of the newer biological treatments and includes the management of the common side effects associated with the management of solid tumours in adults. It includes a succinct summary of the current management of common cancers. Cancer is an important cause of morbidity and mortality, particularly in industrialized countries. Currently in the UK, one person in two will be diagnosed with some form of cancer during their lifetime and one in four will die of the disease. Cancer incidence increases exponentially with age; with increasing life expectancy, cancer will become an even more common problem in the future. Cancers may develop in all body tissues. The chapter reviews the various ways that the cells that form cancers can be differentiated from cells in normal tissues.

Miscellaneous

This chapter describes covers the legal and professional standards of care required in palliative medicine, including the Mental Capacity Act, lasting power of attorney, and restraint or deprivation of liberty. Medicine frequently poses complex situations that as clinicians can challenge our understanding of the legal and ethical framework we work within. The legal framework is structured to protect patients and doctors, and provide guidance in dealing with what can sometimes be unclear and difficult situations. In addition, doctors, like all other healthcare professionals, work in an increasingly litigious and legally regulated environment. Sadly, for both patients and doctors, at times a simple failure by doctors to appreciate the nature and extent of their legal and professional responsibilities can lead to significant medico-legal problems. Furthermore, clinical negligence is covered, including landmark cases in medical litigation. The process for death certification and referral to the coroner is covered, and fitness to drive DVLA requirements are explained. Plans for travelling abroad during the end of life, donor requirements, and a selection of useful resources for patients and laboratory reference values are included.