General introduction 11 1. PALLIATIVE CARE AND ITS RATIONALE Palliative care aims to ‘improve the quality of life of patients and their families, who are facing a life-threatening condition or frailty, through prevention and relief of suffering by means of early identification and careful assessment, and treatment of problems of a physical, psychological, social and spiritual nature. Over the course of the illness or frailty, palliative care aims to preserve autonomy, access to information and the opportunity to make choices.’ This definition was published by the Netherlands comprehensive cancer organisation (IKNL) in 2017 and is based on the World Health Organisation (WHO) definition from 2002.1, 2 Ideally, palliative care is integrated into standard care timely during the illness trajectory, and is deemed appropriate to prepare patients and their family for the end of life, in the near or far future.1, 2 Palliative care is often referred to as an approach, rather than a medical specialism.1, 3 The Dutch Quality Frame work on Palliative care characterises palliative care as follows: • palliative care can be provided concurrently with disease-modifying treatment; • generalist healthcare professionals and, when required, specialist healthcare professionals and volunteers, work together as an interdisciplinary team with patients and their family to tailor treatment to the needs, wishes and values of the patient; • to ensure continuity, care is coordinated by one central healthcare professional; • the wishes of patients and their family about dignity are acknowledged and supported throughout the disease trajectory and the process of dying and after death.2 IKNL underlined the need of palliative care in their nation-wide report published in 2014: the most common causes of death in the Netherlands are non-sudden conditions, which are indications for initiating palliative care.4 In 2017, 105.766 patients in the Netherlands died of non-sudden causes. It is estimated that the proportion of non-sudden deaths is around 70% of all deaths (sudden and non-sudden deaths). People who died non-suddenly most frequently died because of cancer (44%), organ failure (25%) or dementia (11%).5 The number of non-sudden deaths will further increase due to ageing, improved life expectancy in general and increase in numbers of patients with chronic conditions.4 The population that is 80 years or older accounts for 4.5% of the total Dutch population. In the Netherlands, life expectancy increased from 72 years for men and 79 years for women in 1980, to 80 and 83 years respectively in 2018.6 In 2019, the Lancet Commission on Palliative Care and Pain Relief published a paper stating that in 2060, 47% of all people will die after a period of serious health-related suffering. In 2060, the increase in serious health-related suffering will be mostly due to cancer and dementia.7 1
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