Comparing Advance Care Planning in Young-Onset Dementia in the USA vs Belgium: Challenges Partly Related to Societal Context

Rietjens, 2017, Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care, Lancet Oncol, 18, e543, 10.1016/S1470-2045(17)30582-X Sinclair, 2016, Consensus views on advance care planning for dementia: A Delphi study, Health Soc Care Community, 24, 165, 10.1111/hsc.12191 Brown, 2003, The history of advance directives. A literature review, J Gerontol Nurs, 29, 4, 10.3928/0098-9134-20030901-04 Sudore, 2017, Defining advance care planning for adults: A consensus definition from a multi-disciplinary Delphi panel, J Pain Symptom Manage, 53, 821, 10.1016/j.jpainsymman.2016.12.331 Wilkinson, 2010, Advance directives and advance care planning: The US experience Miljković, 2013, From the euthanasia society to physician orders for life-sustaining treatment: End-of-life care in the United States, Cancer J, 19, 438, 10.1097/01.PPO.0000434393.56929.c8 Sulmasy, 2017, Ethics and the legalization of physician-assisted suicide: An American College of Physicians position paper, Ann Intern Med, 168, 834, 10.7326/L18-0083 Lemmens, 2010, Medische beslissingen van een demente patiënt aan het einde van zijn leven en het juridisch statuut van advance care planning en voorafgaande wilsverklaringen, Tijdschrift voor Gezondheidsrecht, 1, 4 Wet betreffende de rechten van de patiënt, 22 augustus 2002. Ministerie van Sociale Zaken, Volksgezondheid en Leefmilieu [Law on the rights of the patient, August 22, 2002. Ministry of Social Affairs, Public Health and Environment]. Belgisch Staatsblad 26.09.2002, S-C-2002/22737 [in Dutch]. Wet betreffende de palliatieve zorg, 14 juni 2002. Ministerie van Sociale Zaken, Volksgezondheid Leefmilieu [Law regarding palliative care, June 14, 2002. Ministry of Social Affairs, Public Health and Environment]. Belgisch Staatsblad 26.10.2002, S-C-2002/22868 [in Dutch]. Wet betreffende de euthanasie, 8 mei 2002. Ministerie van Justitie [Law regarding euthanasia, May 8, 2002. Ministry of Justice]. Belgisch Staatsblad 22.06.2002, C-2002/09590 [in Dutch]. 2017 Rossor, 2010, The diagnosis of young-onset dementia, Lancet Neurol, 9, 793, 10.1016/S1474-4422(10)70159-9 Draper, 2016, Young onset dementia, Intern Med J, 46, 779, 10.1111/imj.13099 Baptista, 2017, Disease awareness may increase risk of suicide in young onset dementia: A case report, Dement Neuropsychol, 11, 308, 10.1590/1980-57642016dn11-030015 Koopmans, 2015, Palliative care in people with young-onset dementia (YOD): An undiscovered area!, J Am Med Dir Assoc, 16, 1008, 10.1016/j.jamda.2015.07.001 Piers, 2018, Advance care planning in dementia: Recommendations for healthcare professionals, BMC Palliat Care, 17, 10.1186/s12904-018-0332-2 Jones, 2019, End of life care: A scoping review of experiences of advance care planning for people with dementia, Dementia (London), 18, 825, 10.1177/1471301216676121 Lai, 2019, The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: A systematic integrative review, Int Psychogeriatr, 31, 1731, 10.1017/S104161021900005X Van den Block, 2019, Advancing research on advance care planning in dementia, Palliat Med, 33, 259, 10.1177/0269216319826411 Van Rickstal, 2019, Limited engagement in, yet clear preferences for advance care planning in young-onset dementia: An exploratory interview-study with family caregivers, Palliat Med, 33, 1166, 10.1177/0269216319864777 Zimmerman, 2019, Unpacking communication about end-of-life care: Resulting recommendations, J Am Med Dir Assoc, 20, 225, 10.1016/j.jamda.2019.01.140 Dierckx de Casterlé, 2012, QUAGOL: A guide for qualitative data analysis, Int J Nurs Stud, 49, 360, 10.1016/j.ijnurstu.2011.09.012 Kermel-Schiffman, 2017, Knowledge regarding advance care planning: A systematic review, Arch Gerontol Geriatr, 73, 133, 10.1016/j.archger.2017.07.012 Fried, 2010, Garnering support for advance care planning, JAMA, 303, 269, 10.1001/jama.2009.1956 Sellars, 2019, Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies, Palliat Med, 33, 274, 10.1177/0269216318809571 MacCormick, 2018, Resuscitation decisions at the end of life: Medical views and the juridification of practice, J Med Ethics, 44, 376, 10.1136/medethics-2017-104608 Bilsen, 2007, Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium, Soc Sci Med, 65, 803, 10.1016/j.socscimed.2007.04.016 Borson, 2017, Innovation in care for individuals with cognitive impairment: Can reimbursement policy spread best practices?, Alzheimers Dement, 13, 1168, 10.1016/j.jalz.2017.09.001 Jutkowitz, 2017, Societal and family lifetime cost of dementia: Implications for policy, J Am Geriatr Soc, 65, 2169, 10.1111/jgs.15043 Bakker, 2013, Predictors of the time to institutionalization in young- versus late-onset dementia: Results from the Needs in Young Onset Dementia (NeedYD) Study, J Am Med Dir Assoc, 14, 248, 10.1016/j.jamda.2012.09.011 Cations, 2017, Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study, PLoS One, 12, e0180935, 10.1371/journal.pone.0180935 Radbruch, 2016, Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care, Palliat Med, 30, 104, 10.1177/0269216315616524 Lamont, 2000, Paradoxes in cancer patients’ advance care planning, J Palliat Med, 3, 27, 10.1089/jpm.2000.3.27 Purser, 2014, Evaluation of legal capacity by doctors and lawyers: The need for collaborative assessment, Med J Austr, 201, 483, 10.5694/mja13.11191 Ries, 2016, Doctors, lawyers and advance care planning: Time for innovation to work together to meet client needs, Healthc Policy, 12, 12