CHAPTER 11 Palliation in chronic illness
When you have completed this chapter you will be able to:
INTRODUCTION
‘Palliation’ is the term used for the care provided by health professional for patients with terminal conditions. Palliative care aims to alleviate symptoms of disease process that affect a patient’s ability to live a satisfactory life, within the limitations of the condition. This places quality-of-life patient issues firmly at the centre of the decision-making processes regarding treatment. In recent times, this palliative care approach has significantly focused on patients with terminal cancer. However, it has now been recognised that this approach can be extended to the broader context of life-limiting chronic conditions. In fact, palliative care should not be associated exclusively with terminal care, since patients may require this care on diagnosis of the condition and well before the terminal phase (Costello, 2004). Johnston (2005, p. 3) informs that ‘all life-threatening illnesses—be they cancer, neurological, cardiac or respiratory diseases—have implications for physical social, psychological and spiritual health, for both the individual and their family’. Broadening the scope of practice in palliative care is therefore necessary to enable care for all patients with life-limiting illnesses.
AN OVERVIEW OF HISTORICAL DEVELOPMENTS
Since the 1980s palliative care has become a sub-specialty in medicine, nursing and allied health education programs. Up until the 20th century, palliative nursing care was the only option of care for the terminally ill. It was during the early part of the last century that palliation was lost to the biomedical health care model with aggressive measures to investigate disease and prolong life as long as possible (Macintosh & Zerwekh, 2006). Thus an obsession with cure or defeating disease processes prevailed, while death was seen as failure of the healthcare system. Although the medical approach has improved the treatment of acute conditions, often patients’ families and carers were denied the truth regarding their poor prognosis, making them vulnerable to unnecessary aggressive and distressing interventions (Macintosh & Zerwekh, 2006).
The hospice movement of the last century was developed as a response to these concerns, and nurses were often at the forefront in bringing about change. As Hiedrich (2007, p. 23) informs us, ‘the overriding principle behind hospice was the notion that patients needed and deserved an alternative to an aggressive, cure orientated, hospital based system of care that generally failed to address the real issues of concerns to the dying’. In the early days of the hospice movement, palliative care was viewed as terminal care, this being the care given to a person in the last days to weeks of their life. It took place within the confines of the hospice, isolating death and dying in society. Death was no longer seen as a normal component of life. However, with ‘consumerism on the rise in healthcare, patients began to take more of a role in steering the cause of their care’ (Macintosh & Zerwekh, 2006, p. 22). The right to make informed decisions was demanded by patients and their families and friends, especially in relation to the necessity of life-extending treatments that offered additional time, but limited the quality of life. The overwhelming impact on family and friends of the physical, psychological and social demands of caring for a loved one during the terminal stages of illness emerged as pivotal factors in redefining the palliative care movement.
BOX 11.1 Definition of palliative care
Source: WHO (2002).
THE PHILOSOPHY OF PALLIATIVE CARE—AN EVOLVING MODEL THAT INCLUDES CHRONIC ILLNESS
One very interesting aspect of the WHO definition is the difference between the earlier 1990 palliative care definition and the 2002 definition; that is, the notable absence of reference to diagnosis or prognosis (Currow & Nightingale, 2003). Palliative care is now a philosophy of care that is firmly focused on a patient-centred approach and recognises the needs of the primary caregivers, be they family, friends or health professionals. This is significant as, along with close family members, nurses often provide the majority of care for patients, in both community and hospital settings. Another significant change identified in the palliative care movement is the recognition of the need of all patients with life-limiting illness, not just those with cancer. Johnston (2005, p. 2) supports this updated definition, commenting that ‘it now reflects the 21st century view of palliative care where more and more hospices and specialist palliative care units accept referrals to patients with diseases other than cancer’.
Chronic illness can be defined as an illness that is multifactorial, has uncertain aetiology, has a prolonged course, does not resolve spontaneously and is rarely cured completely (Davis et al, 1999). As in many other developed countries, chronic illness in Australia and New Zealand continues to exact a high toll on the health of individuals. People are now living longer with increasing levels of morbidity associated with chronic illness. Chronic illnesses ‘are estimated to make up the greatest burden of disease, mental problems and injury for the population as a whole’ (Glover et al, 2004). Although not all chronic illness leads to death, eight of the ten leading causes of death in Australia and New Zealand in 2001 were related directly to chronic illness (AIHW National Mortality Database, 2001). It is also evident that there are increasing levels of chronic illness associated with lower socioeconomic status, the highest levels of chronic illness being seen within indigenous populations (Glover et al, 2004; Tarun et al, 2003).
With its emphasis on symptom management and supportive care, it is clear that palliative care has a role to play in the management of life-limiting chronic illness. It needs to be emphasised that palliative care commences as soon as a person is diagnosed with a life-limiting illness and continues until death; it is not simply a component of end-of-life care (Doyle et al, 2004; Meyers & Linder, 2003).
A therapeutic approach to a person with a chronic life-limiting illness:
The great burden of care and responsibility imposed by a chronic life-limiting illness is borne by the person with the illness and their immediate caregiver. Increasingly the expectation of the health system is that people maintain their independence as long as possible with the assistance of community support networks (Given et al, 2004). This approach not only helps to prevent unwanted hospital admissions but can also assist people with chronic illness to adapt in a positive way and live as independently as possible (WHO, 2002).
THE MULTI-PROFESSIONAL TEAM
Members of the multi-professional team may include community or district nursing services, providing nursing support in people’s homes. The nursing component may be supplemented by specialist nursing input in the form of consultative palliative care nursing, or other illness-specific specialist nursing. The role of the nurse as an educator can be of particular importance in this context. It must be remembered that complementary and alternative medicine are be included in the management of chronic illness. People are increasingly accessing complementary and alternative health practitioners and ‘the public perception is that these modalities are both safe and efficacious’ (Secor et al, 2004). General practitioners can provide medical support. Psychological support can be further enhanced by the involvement of social workers and psychologists. If necessary, a liaison psychiatrist can be usually accessed by the service in the case of severe mental distress; and physiotherapists and occupational therapists if there are specific mobility and functional deficits. It is not uncommon for home modifications to be undertaken to help facilitate independence in the activities of daily living. Dietitians can be very helpful if there are nutritional concerns that need to be addressed.
For the collaborative approach to be effective it is essential that team members are respectful and mindful of the importance of each team member’s contribution in ensuring that the best possible outcome is achieved. For a team to be effective it needs good leadership. In the context of the multi-professional team, leadership should be flexible and adaptable, in that there is recognition of the fact that the management of a person with a chronic life-limiting disease is complex and not static (Halcomb, 2005). Therefore the leadership of the team at any given time should reflect the issues that arise naturally from the progression of the illness and its impact on the person’s life.
THE CHALLENGES OF PALLIATIVE CARE
SYMPTOM CONTROL
Good symptom control is the cornerstone of effective palliative care. The goal of ‘quality of life’ cannot be reached if symptoms are too overwhelming for the person to cope with. Aranda (2003, p. 89) emphasises the importance of ‘symptom control as a key component of comprehensive palliative care’. Common symptoms experienced by patients can include pain, nausea and vomiting, anxiety, depression, delirium, constipation, breathlessness, cachexia and fatigue. Uncontrolled symptoms can cause severe distress to both patient and their caregiver, and may precipitate admission to hospital for acute symptom control.
