Medical care and decision making at the end of life
We all die, mostly after a period of illness and decline, during which adequate self-management, multifaceted care from professional and non-professionals caregivers, and sensible medical decision making are of the essence.
Medical care and decision-making at the end of life are prominent in both the societal and scientific debate. Contemporary societal issues in end-of-life care include: i) the ageing population with patients dying from chronic deteriorating illnesses such as cancer, organ failure or dementia, ii) the medicalization of dying and the fragmentation of care that involve challenges in communication and cooperation, and iii) an increasing emphasis on patient engagement and self-determination. Examples of frequently discussed topics are euthanasia and other forms of assisted dying, the role of palliative care and palliative sedation, overuse and underuse of medical treatment at the end of life, the (cost)effectiveness of end-of-life care, and advance care planning. Our group has performed different studies to describe and elucidate these complex phenomena, as well as experimental studies to evaluate interventions aimed at improving patients’ quality of life and the quality of care and decision-making. Studies on end-of-life care involve various thought-provoking ethical and methodological challenges. Our research projects include: quantitative and qualitative studies on symptoms and quality of life; medication management; palliative care in hospitals; collaboration between different health care settings and disciplines; management of cardiac devices; spiritual care; prognostication; advance care planning; and self-management. In these investigations, we collaborate with partners throughout the Netherlands, Europe and beyond. At the regional level, we participate in a consortium dedicated to improve the quality of palliative and end-of-life care in the southwest region of the Netherlands. We also participate in a regional academic network of hospice facilities and coordinate a patient advisory panel.
In March 2019, we organized the 7th Advance Care Planning International Conference in the Doelen in Rotterdam. This three day event was attended by 300 researchers, clinicians, policymakers, ethicists, other professionals and patient representatives from 25 countries all over the world. They participated in workshops on the practice of advance care planning, gave or listened to lectures on outcomes of the newest research, and discussed their successes and challenges in meetings and during breaks. The conference received very positive ratings, not in the least because of the lively social program, that included a mentoring program and dinner party, both resulting in many new contacts and collaborations. The conference also included a public event in debating centre Arminius, that was attended by over 400 citizens and broadly covered in local media.
- The iLIVE project – live well, die well: a H2020 funded to get insight in the experience of death and dying in 11 different countries
- SMART: an NWO vernieuwingsimpuls (Vidi) funded research programme that examines self-management practices and challenges among patients with advanced cancer
- REI: an Erasmus University Rotterdam funded collaborative programme to study how doctors and lawyers deal with death and dying
Stoevelaar R, Brinkman-Stoppelenburg A, van Driel AG, van Bruchem-Visser RL, Theuns DA, Bhagwandien RE, Van der Heide A, Rietjens JA. Implantable cardioverter defibrillator deactivation and advance care planning: a focus group study. Heart. 2020 Feb;106(3):190-195. doi: 10.1136/heartjnl-2019-315721
Overbeek A, Korfage IJ, Jabbarian LJ, Billekens P, Hammes BJ, Polinder S, Severijnen J, Swart SJ, Witkamp FE, van der Heide A, Rietjens JAC. Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial. J Am Geriatr Soc 2018;66:1089-95. doi: 10.1111/jgs.15333
Jabbarian LJ, Zwakman M, van der Heide A, Kars MC, Janssen DJA, van Delden JJ, Rietjens JAC, Korfage IJ. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices. Thorax 2018;73:222-230. doi: 10.1136/thoraxjnl-2016-209806
van Dongen SI, van Straaten B, Wolf JRLM, Onwuteaka-Philipsen BD, van der Heide A, Rietjens JAC, van de Mheen D. Self-reported health, healthcare service use and health-related needs: A comparison of older and younger homeless people. Health Soc Care Community. 2019 Jul;27(4):e379-e388. doi: 10.1111/hsc.12739
Brinkman-Stoppelenburg A, Polinder S, Olij BF, van den Berg B, Gunnink N, Hendriks MP, van der Linden YM, Nieboer D, van der Padt-Pruijsten A, Peters LA, Roggeveen B, Terheggen F, Verhage S, van der Vorst MJ, Willemen I, Vergouwe Y, van der Heide A. The association between palliative care team consultation and hospital costs for patients with advanced cancer: An observational study in 12 Dutch hospitals. Eur J Cancer Care. 2019 Dec 11:e13198. doi: 10.1111/ecc.13198
Rietjens JAC, Heijltjes MT, van Delden JJM, Onwuteaka-Philipsen BD, van der Heide A. The Rising Frequency of Continuous Deep Sedation in the Netherlands, a Repeated Cross-Sectional Survey in 2005, 2010, and 2015. J Am Med Dir Assoc. 2019 Nov;20(11):1367-1372. doi: 10.1016/j.jamda.2019.06.012
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