Holistic Care and Palliation
Adults with congenital heart disease have been the recipients of heroic surgical and medical care over the years. Although a lot of effort is made to improve survival and to find novel treatment concepts for these patients, we have to accept that for many patients, no viable treatment options will be available and many will be at high risk of dying as young and middle-aged adults. Although our ability to ‘cure’ these patients may be limited, our ability to support our patients with non-strictly ‘medical’ measures is substantial and may have an important impact on patients’ quality of life and a self-determined and dignified end of life. Hence in this chapter, we will focus on measures of patient support, advance care planning and end-of-life care—summarized as comprehensive care. The concept of comprehensive care combines cardiac care, supportive care and measures of palliative care adjusted and matched to the individual patient’s stage of disease and circumstances of living.
KeywordsEnd-of-life care Advance care planning Advance directives Palliative care Comprehensive care Prognosis Substitute decision-maker Supportive care