The basic philosophy of palliative care is to achieve the best quality of life for patients even when their illness cannot be cured. Palliative care is provided through comprehensive management of the physical, psychological, social, and spiritual needs of patients, while remaining sensitive to their personal, cultural, and religious values and beliefs. Hospital palliative care services are often provided through an interdisciplinary team of health care professionals including, but not limited to: Doctors, Nurses, Healthcare Assistants, Psychologists, Social Workers, and Priests.
Fatigue is a common, distressing and debilitating symptom experienced by people with cancer. In those receiving palliative care it is probably the most frequently reported symptom and is experienced by more than 90 per cent of these patient. However, it represents the most commonly unrelieved cancer symptom. Cancer related fatigue can have a number of factors that can be difficult to establish, however despite these problems advancing research will help to promote the problem as a palliative care symptom that can be assessed and managed.
In patients with advanced cancer, the prevalence rates of various symptoms are approximately as follows Pain 89% Fatigue 69% Weakness 66% Anorexia 66% Lack of energy 61% Nausea 60% Dry mouth 57% Constipation 52% Dyspnoea 50% Vomiting 30%. (Donnelly 1995)
Defining Cancer-Related Fatigue
Cancer-related fatigue is a complex phenomenon with physical, cognitive and affective methods of expression. A clear understanding of what it means is essential before it can be assessed and managed, or healthcare Assistants are able to discuss it with patients and colleagues. After exploring fatigue from the perspective of patients, Ream (1996) derived the following definition: ‘a subjective, unpleasant symptom which incorporates feelings ranging from tiredness to exhaustion, creating an unrelenting overall condition which interferes with individual’s ability to function to their normal Causes and effects. The causes of cancer-related fatigue is still unknown, and lack of success in treating it at the end of life stage is in part due to this lack of knowledge. Quality of life is related to symptoms, functioning, and psychological and social well-being, while during end-of-life care, spirituality is a major issue, patients become too tired to participate fully in their roles and activities that make life meaningful, fatigue therefore significantly affects their quality of life.
One of the barriers to treating fatigue at the end of life may be patients, families and Doctors perception of it as an unavoidable, untreatable symptom (Johnson, 2004).Many people experience fatigue, but studies have shown that fatigue experienced by patients with cancer is more rapid in onset, more energy-draining, more intense, longer-lasting, more severe and more unrelenting when compared with ‘typical’ fatigue.
Advance care planning and establishing goals of care are essential because they enhance the control patients have over their care and assure autonomy if the patient is unable to communicate their wishes or make decisions at later stages of illness. Patients want a voice in their healthcare, they want to know what to expect and how to plan for their treatment and their future. Establishing goals early on for current and future healthcare helps to avoid future unnecessary harm and inappropriate prolongation of dying. It is well recognized that interventions focused on “curing” dying patients result in increased suffering, with little or no benefit for the patient. This suffering may even extend beyond the patient. Nurses also struggle ethically and emotionally when care for dying patients is focused on “technology” rather than on comfort and quality of life. In addition, twenty-per cent of patients relatives develop a physical illness in response to the stress of coping with their loved one’s poor health.
Treating Underlying Causes
Before a patient’s fatigue is simply attributed to the cancer it is important to identify and treat easily reversible underlying physiological and psychological causes of fatigue. For example, this may involve reducing non-essential medications, treating infections, correcting hypercalcaemia and electrolyte disorders or treating pain, depression, sleep disorders or anaemia .A link between fatigue, sleep and anxiety can be readily identified, and the approach to management is a general one. In palliative care, efforts are directed at alleviating symptoms, as well as toward preventing or treating the underlying cause when that is possible interventions should begin with the promotion of sensitive communication, giving patients the opportunity to discuss their fatigue in the context of living with a terminal illness and its impact on their lives , found that enabling patients to talk about their fatigue both facilitated professional assessment and helped them to explore the meaning of the cancer and fatigue experience for themselves, and for their family and friends.
This can help patients regain a sense of control and freedom to focus on other important aspects of their lives, so restoring their self-esteem .Patient and family education can be of great value in understanding cancer-related fatigue. Family members may interpret fatigue as a sign that the patient is ‘giving up’, when it is actually beyond her or his control. Complementary medicine embodies the principles of palliative care by helping to ease the physical, psychosocial, and spiritual effects of illness. It aims to control symptoms and to enhance quality of life for patients and their families. Relaxation, visualisation, massage and aromatherapy are currently being evaluated as part of a global intervention known as Beating Fatigue. There is already evidence of the beneficial effect of massage and aromatherapy on depression and other symptoms including fatigue.
Whilst undertaking this assignment certain words keep coming to mind. Words like empathy, caring, stress, burnout, teamwork many more but I have learned to respect all patients, promote dignity, to be a better team player be confident in my abilities, but mostly I have realised that to further a career in any area of palliative care will require more training, more understanding of different patients conditions and there requirements on a daily basis and to be more conscience of the responsibilities of healthcare assistants when caring for all patients. As said previously I will seek further training in this area not only to be of greater benefit to the patients but also to seek training in some form of grief counselling to be of greater assistance to relatives and friends of patients, to empathise more and to just be able to listen when needed.
Despite the high prevalence of cancer-related fatigue among patients in palliative care, its treatment is less successful than treatment for other symptoms at the end of life. The causes of fatigue in patients with advanced cancer are often unclear, multiple factors may be responsible and little is known about its causes. The specific goals of palliative care are to improve the quality of the last stages of patient’s lives, control symptoms, and provide support to family members and to pay attention to patient’s perceptions of purpose and meaning of life.
The experience of cancer-related fatigue has a major impact on patient’s motivation as it means they are unable to undertake physical activities and that they lose interest in activities and life in general. Although it is difficult to conduct research on patients who are highly distressed, have severe symptoms or who are dying, there is the potential for such research to have a therapeutic benefit for those taking part. Providing patients with cancer an opportunity to discuss their feelings associated with symptoms such as fatigue provides information necessary to develop professional understanding and can also help patients to make sense or come to terms with their condition.
Future research should focus on determining effective solutions – including alternative and complementary therapies – rather than on reassessing need. More focused fatigue assessment tools and targeted fatigue interventions for patients at the end of life are required, as is training in fatigue management so that healthcare assistants are more knowledgeable and skilled in assessing and managing fatigue. By understanding the physical, psychosocial and emotional needs of an individual’s experience of advanced cancer, palliative care research demonstrates that health professionals can help patients to adapt to living with cancer-related fatigue. Such intervention can empower patients to maintain control over decisions relating to their care and can assist them to understand and find meaning in their fatigue.
Donnelly S, Walsh D.(1995) The symptoms of advanced cancer. Semin Oncol 1995; 22(2 suppl 3):67–72. Johnson, C. (1992). Coping with compassion fatigue. Nursing, 22(4), 116, 118-120. Ream E. (2007) Fatigue in patients Nursing Stand.2007: 21(28)49-56