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Agnes van der Heide

Prof.dr. A. van der HeideProfessor of Medical care and decision making at the end of life

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At the beginning of the 20th century, death was predominantly regarded as a natural and inevitable event, with a limited role for medicine and health care. Most people died from infectious diseases and the duration of the terminal disease process was usually limited. During the 20th century, a shift has occurred: infectious diseases have to a great extent been replaced by degenerative and man-made causes of death, such as cardiovascular disease, cancer and accidents. Our life expectancy has increased substantially, which, together with the temporary post-war rise in birth rates, has resulted in the aging of the population in most developed countries. In the year 2030, one fifth to a quarter of the population in the Netherlands is expected to consist of people over 65, as compared to 14% in 2000. Older people now account for a significant majority of decedents and death is often preceded by a period of functional deterioration due to chronic disabling conditions, such as dementia and heart failure. As a result, people who are in their last phase of life consume a large part of health care expenditures.

The growing number of life-prolonging options also complicates decision making at the end of life. Questions have to be addressed about when such options are appropriate, from a medical, ethical and public health perspective. Patients and their caregivers increasingly want to have a say in these questions. The acknowledgement that many patients do not want to live to the bitter end, even if their pain and suffering can be controlled, has in some countries resulted in laws that under specific conditions permit active physician-assistance in dying. Such a laws came into force in 2002 in the Netherlands. A key element in the Dutch law and laws permitting physician-assistance in dying in a few other countries, is that such assistance can only be considered for patients with a poor prognosis based on a medical diagnosis who make a well-considered and voluntary request to their physician.

Our research in the field of end-of-life care and end-of-life decision making is characterized by interdisciplinary, regional, national and international exchange and collaboration. One example is our regular involvement in studies to evaluate end-of-life decision making practices and regulations. Further, we study the impact of guidelines, protocols and care pathways on care at the end of life. In these studies, we aim to explain current practices and to find clues for improvements in clinical decision making and public control. In the end, these insights should contribute to high-quality, patient-centered, ethically sound, and cost-effective health care in the last stage of life.

Agnes van der Heide