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The Context and Principles of Palliative Care

Christina Faull

Introduction

In my 30 years as a specialist in adult palliative care I consider myself immensely privileged to have worked with patients and their families and learnt so very much from them. As I write this chapter I find myself recalling many of them;

• the man I looked after in my first weeks as a doctor, who had taken an overdose because of his lung cancer;
• the couple with a clear advance directive of "no-intervention" for whom, in the end, it was the right thing to be admitted to intensive care;
• the man who despite multiple pathological fractures needed to travel for a trial chemotherapy as "giving-up" was beyond his ability to cope with;
• the silent lady I couldn't reach;
• the English man with Native American spiritual beliefs who was terrified of being buried alive.

Dying happens to us all and although there is some uniformity in the physical experience of this, all of us live this last part of our life and die in our own, unique way. I am profoundly humbled by the psychological, spiritual, and socio-cultural diversity of approaches that people have expressed in their living and their dying. I also recognise the challenge that this poses for health and care staff in providing effective, personalised care at the end-of-life.

Every man must do two things alone; he must do his own believing and his own dying. Martin Luther King

Dying is a wild night and a new road. Emily Dickinson

Indeed, Allah [alone] has knowledge of the Hour and sends down the rain and knows what is in the wombs. And no soul perceives what it will earn tomorrow, and no soul perceives in what land it will die. Indeed, Allah is Knowing and Acquainted. (Quran, 31:34)

Irrespective of your particular specialty or place of work, most health and care professionals will encounter people with advanced illness, and caring for people in the last months, weeks, and days of life is an important and valued part of their work [1, 2]. It is estimated that 40 million people worldwide require palliative care of whom 69% are adults over sixty years of age and 6% are children [3]. Caring for someone who is nearing the end of their life can be an extremely rewarding area of practice, and this satisfaction is enhanced by confidence in core interpersonal skills and through a basic knowledge of physical and non-physical symptom management [4, 5].

In the developed world at least, most people die from conditions that have been diagnosed for some time and they have multiple contacts with healthcare professionals, offering numerous opportunities for discussions about deterioration, dying and the "trade-offs" or personal priority setting so eloquently argued by Atul Gawande in his book Being Mortal [6]. However, we know that these conversations are challenging and there is an ambivalence on the part of professionals to initiate such discussions for a number of well-intended reasons. The COVID-19 pandemic exposed healthcare professionals in a new way to the needs of patients and families for open and honest conversations about prognosis and individual requirements and preferences [7]. This Handbook aims to build your confidence and diminish your ambivalence in having such discussions with people in the last stage of their lives. It will aim to equip you with knowledge and skills in assessment of the patient's needs and context, in physical symptom management and in communication, enabling your practice in empathetic, personalised, holistic care.

Palliative care offers much to patients with advanced illness and to their families. For some patients this is the main approach in their care. For many patients it can improve the quality of their life when used as shown in Figure 1 not as an alternative to other care (brink-of-death care) but as a complementary and vital part of their management, integrated alongside appropriate care to reverse illness or prolong life [8]. The challenges of the parallel approaches of trying to improve physical well-being and prolong life while also addressing the realistic probability of deterioration and death are significant, especially in those illnesses characterised by episodes of acute deterioration. Perhaps one of the biggest challenges we face in medicine and indeed in society is balancing the clinical and ethical "pros and cons" (weighing the burdens, benefits, and risks) of investigation and intervention in those with advanced illness and in the frail elderly. In the United Kingdom, the General Medical Council (GMC) has recommended that end-of-life should be an explicit discussion point when patients are considered likely to die within 12 months [9, 10]. Box 1 identifies the mandated expectations in this guidance [10].

Figure 1 Integrating palliative care alongside disease directed care to achieve quality of life. Amended from [8].

Box 1: Mandated expectations of the GMC guidance - Treatment and care towards the end-of-life: good practice in decision making [9, 10]

• Identification of patients approaching the end-of-life.
• Provision of information on this matter.
• Determination of preferences regarding life-sustaining treatment including cardiopulmonary resuscitation (CPR).
• Documentation of the above in an unambiguous and accessible format.
• Communication of decisions within relevant healthcare teams.

The majority of care received by patients during the last year of their life is in their home or, for many elderly people, in their care home. The fact that their illness is progressing and their functional status deteriorating often means however, that many patients will spend significant time in hospitals during their last year of life. It has been estimated that 20% of hospital beds are occupied by patients near the end-of-life many of whom do not need, or want, to be there [11] and despite the majority wishing to die at home, almost 50% of patients still die in a hospital in the United Kingdom [12]. The lack of recognition of the fact that patients are nearing the ends of their lives and open discussion of this with the patients and their families is considered a major barrier in achieving better outcomes including enabling people to die with comfort and dignity, to be cared for where they would most want to [11, 13, 14] and fulfilling the many other "wishes" that are important to them.

Palliative care is more than just end-of-life or "brink-of-death" care. Some of the newest challenges are in providing effective support for those living with cancer, or other advanced illness, for long periods of time who are suffering from a complex mix of effects of the illness itself, the effects of the treatments for the disease and the psychosocial and psychospiritual impacts of facing not only the fear of recurrence, flare-ups, deterioration and death but also the ongoing symptoms such as fatigue, disability, and the change of role and social and family dynamics [15-17].

There are a broad range of challenges in delivering high-quality palliative, end-of-life, and terminal care including professional competence and confidence, teamwork, and organisational factors, and access to resources. Patients with advanced disease can present some of the most challenging ethical, physical, psychological, and social issues, and it is vital to have a grasp of the communication skills required to explore these issues effectively. It is also important to be able to identify when referrals to specialists and other services are needed.

This chapter outlines the principles that underpin effective care for people with advanced disease, provides some definitions and contexts and presents an overview of the attainment and assessment of quality in palliative care. It focusses mostly on the needs and care of adults although most of the principles are transferable to the care of children. The palliative care of children and young people has some very specific requirements and services and these are discussed in Chapter 15 (Palliative care for infants, children and young people).

Definitions and Explanations

Box 2: Etymology

The word "hospice" originates from the Latin hospes meaning host; hospitalis, a further derivative, means friendly, a welcome to the stranger. The word hospitium perhaps begins to convey the vital philosophy of the hospice movement: it means the warm feeling between host and guest. Hence, a hospice denotes a place where this feeling is experienced, a place of welcome and care for those in need. The word "palliative" derives from the Latin pallium, a cloak. Palliation means cloaking over, not addressing the underlying cause but ameliorating the effects.

Hospice and Palliative Care

Much of our understanding and knowledge of the philosophy, science, and art of palliative care has developed and grown through the work of the hospice movement. Dame Cicely Saunders worked with patients suffering from advanced cancer and undertook systematic narrative research to understand what patients were experiencing and needed. The bedrock of the hospice philosophy is that of patient-centred holistic care focusing on quality of life and extending support to significant family members:

What links the many professionals and volunteers who work in hospice...