Palliative Care: What, Who, When, How?

Abstract

Introduction: The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Originally limited mainly to people with advanced cancer, palliative care now encompasses all forms of progressive incurable disease, based on need and not limited by diagnosis or prognosis, person-centred rather than disease-focused.

Prerequisites: In 2014, the World Health Assembly stressed the need for national health services to include palliative care within universal health cover. The essential prerequisites for delivery are (1) governmental policy, (2) drug availability, (3) education and training, (4) plans for implementation. Without all four, accessible palliative care for all who need it is not possible. Unfortunately, this is still the case in many countries. Further, because of limited government funding, much philanthropic and community support is necessary to enable palliative care to take root and flourish. There is also need to contend with the distaste many healthcare professionals feel when confronted with end-stage disease, and their reluctance to change the focus of care from disease control to comfort. Most healthcare professionals are unable to engage sensitively and skilfully in discussions about impending death. Palliative care should be seen as a partnership between experts: in relation to the disease, the clinicians are the experts but, in relation to the impact of the illness, the experts are the patient and family. Through listening to their story and their problems, the patient and family begin to shift from being passive victims to empowered persons. For this, good communication skills are essential. A sense of urgency, attention to detail, and deep compassion are all necessary.

Conclusion: To respond adequately to the need for palliative care in the population, a public health approach is necessary, with the emphasis on supporting patients and families in their homes. However, there is also need for centres of excellence with inpatient beds, day care, and outpatient clinics supported by trained community nurses, healthcare assistants and volunteers. The role of such centres is to train healthcare personnel and to provide ‘pro-active’ palliative care throughout the host hospital. Palliative care must be part of the basic and postgraduate training of all healthcare students and professionals. Regrettably, the underlying values of the healthcare system tend to be incompatible with compassion and caring. Although most healthcare professionals care deeply about their patients, the values of the system itself tend to be competition, rationalisation, productivity, efficiency and, often, profit. Healthcare has been ‘industrialized’, and there is little or no time for holistic care. All too often this leads to emotional exhaustion and cynicism in the professional carers. Thus, the long-term challenge of providing high-quality palliative care should not be under-estimated.