Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-26T05:06:25.198Z Has data issue: false hasContentIssue false

Chapter 12 - Societal and Ethical Views on End-of-Life Decisions in Dementia

Published online by Cambridge University Press:  26 May 2022

By
Chris Gastmans ,
Jenny van der Steen  and
Wilco Achterberg
Edited by
Mathieu Vandenbulcke ,
Rose-Marie Dröes  and
Erik Schokkaert
Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
Get access

Summary

Most people in contemporary western societies do not die suddenly, but from organ failure or dementia after a period with declining health due to chronic-progressive disease. With increasing options for care and treatment, decisions about useful or desirable treatment and care are made in the last phase of life of most people. In this chapter, we report on three categories of end-of-life decisions that are made in dementia care. First, decisions primarily aimed at alleviating pain and other symptoms or improving quality of life in other ways, while possible effects on length of life are deemed irrelevant compared to that aim. Second, decisions around life-sustaining treatments or treatments to cure acute or co-morbid conditions which may or may not affect length and quality of life. Examples of such treatments are cardiopulmonary resuscitation, use of antibiotics, and artificial nutrition and hydration. Third, decisions around terminating life, e.g. euthanasia. For all these decisions, we focus on clinical as well as on some societal and ethical perspectives.

Keywords

palliative caredementiaAlzheimer’s diseaseend-of-life carepain managementcardiopulmonary resuscitationantibioticsartificial nutrition and hydrationeuthanasiaethics
Type
Chapter
Information
Dementia and Society , pp. 233 - 250
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Wendrich-van Dael, A, Pivodic, L, Cohen, J, Deliens, L, Van den Block, L, Chambaere, K. End-of-life decision making for people who died of dementia: A mortality follow-back study comparing 1998, 2007, and 2013 in Flanders, Belgium. J Am Med Dir Assoc. 2019; 20: 1344–50.CrossRefGoogle ScholarPubMed
Van der Steen, JT, Deliens, L, Koopmans, RTCM, Onwuteaka-Philipsen, BD. Physicians’ perceptions of suffering in people with dementia at the end of life. Palliat Support Care 2017 Oct; 15(5): 587–99. doi: 10.1017/S147895151600098CrossRefGoogle ScholarPubMed
Van der Steen, JT, van der Wal, G, Mehr, DR, Ooms, ME, Ribbe, MW. End-of-life decision making in nursing home residents with dementia and pneumonia: Dutch physicians’ intentions regarding hastening death. Alzheimer Dis Assoc Disord. 2005 Jul–Sep; 19(3): 148–55. doi: 10.1097/01.wad.0000175525.99104.b7CrossRefGoogle ScholarPubMed
Broeckaert, B, Flemish Palliative Care Federation. Treatment decisions in advanced disease: A conceptual framework. Indian J Palliat Care 2009; 15: 30–6.CrossRefGoogle ScholarPubMed
Radbruch, L, De Lima, L, Knaul, F, Wenk, R, Ali, Z, Bhatnaghar, S, et al. Redefining palliative care: A new consensus-based definition. J Pain Symptom Manage. 2020 Oct; 60(4): 754–64. doi: 10.1016/j.jpainsymman.2020.04.027CrossRefGoogle ScholarPubMed
Van der Steen, JT, Radbruch, L, Hertogh, CM, de Boer, ME, Hughes, JC, Larkin, P, et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014 Mar; 28(3): 197–209. doi: 10.1177/0269216313493685CrossRefGoogle ScholarPubMed
Boogaard, JA, van der Steen, JT, de Boer, AH, van Groenou, MIB. How is end-of-life care with and without dementia associated with informal caregivers’ outcomes? Am J Hosp Palliat Care 2019 Nov; 36(11): 1008–15. doi: 10.1177/1049909119836932CrossRefGoogle Scholar
Davies, N, De Souza, T, Rait, G, Meehan, J, Sampson, EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS One 2021 May 27; 16(5): e0252464. doi: 10.1371/journal.pone.0252464. eCollection 2021CrossRefGoogle ScholarPubMed
Helton, MR, van der Steen, JT, Daaleman, TP, Gamble, GR, Ribbe, MW. A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia.Ann Fam Med. 2006 May–Jun; 4(3): 221–7. doi: 10.1370/afm.536CrossRefGoogle ScholarPubMed
Van der Steen, JT, Onwuteaka-Philipsen, BD, Knol, DL, Ribbe, MW, Deliens, L. Caregivers’ understanding of dementia predicts patients’ comfort at death: A prospective observational study. BMC Med. 2013 Apr 11; 11: 105. doi: 10.1186/1741-7015-11-105CrossRefGoogle ScholarPubMed
Robinson, A, Eccleston, C, Annear, M, Elliott, KE, Andrews, S, Stirling, C, et al. Who knows, who cares? Dementia knowledge among nurses, care workers, and family members of people living with dementia. J Palliat Care. 2014 Autumn; 30(3): 158–65.CrossRefGoogle ScholarPubMed
McInerney, F, Doherty, K, Bindoff, A, Robinson, A, Vickers, J. How is palliative care understood in the context of dementia? Results from a massive open online course. Palliat Med. 2018 Mar; 32(3): 594–602. doi: 10.1177/0269216317743433. Epub 2017 Dec 13CrossRefGoogle Scholar
Macfarlane, S, Atee, M, Morris, T, Whiting, D, Healy, M, Alford, M, Cunningham, C. Evaluating the clinical impact of national dementia behaviour support programs on neuropsychiatric outcomes in Australia. Front Psychiatry 2021 Apr 13; 12: 652254. doi: 10.3389/fpsyt.2021.652254CrossRefGoogle ScholarPubMed
Sawatzky, R, Porterfield, P, Lee, J, Dixon, D, Lounsbury, K, Pesut, B, et al. Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliat Care 2016 Jan 15; 15: 5. doi: 10.1186/s12904-016-0076-9CrossRefGoogle ScholarPubMed
Klapwijk, MS, Bolt, SR, Boogaard, JA, ten Koppel, M, Gijsberts, M-JHE, van Leussen, C, et al. Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019. Palliat Med. 2021 Dec; 35(10): 1951–60. doi:10.1177/02692163211030831. Epub 2021 Aug 28.CrossRefGoogle ScholarPubMed
Miranda, R, Smets, T, Van den Noortgate, N, Deliens, L, Van den Block, L. Higher prevalence of dementia but no change in total comfort while dying among nursing home residents with dementia between 2010 and 2015: Results from two retrospective epidemiological studies. Int J Environ Res Public Health 2021; 18: 2160. https://doi.org/10.3390/ijerph18042160CrossRefGoogle ScholarPubMed
Hendriks, SA, Smalbrugge, M, Galindo-Garre, F, et al. From admission to death: Prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2015; 16: 475–81.CrossRefGoogle ScholarPubMed
Sampson, EL, Candy, B, Davis, S, Gola, AB, Harrington, J, King, M, et al. Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life. Palliat Med. 2018 Mar; 32(3): 668–81. doi: 10.1177/0269216317726443. Epub 2017 Sep 18. PMID: 28922625; PMCID: PMC5987852CrossRefGoogle ScholarPubMed
Vandervoort, A, Van den Block, L, Van der Steen, JT, Volicer, L, Vander Stichele, R, Houttekier, D, et al. Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc. 2013; 14: 485–92.CrossRefGoogle Scholar
Van der Steen, JT, Westzaan, A, Hanemaayer, K, Muhamad, M, de Waal, MWM, Achterberg, WP. Probable pain on the Pain Assessment in Impaired Cognition (PAIC15) instrument: Assessing sensitivity and specificity of cut-offs against three standards. Brain Sci. 2021 Jun 29; 11(7): 869. doi: 10.3390/brainsci11070869CrossRefGoogle ScholarPubMed
McAnee, G, Norwood, K, Rosato, M, Leavey, G. Assessment of pain in people living with dementia at the end of life: A systematic review. Int J Palliat Nurs. 2021 Apr 2; 27(2): 72–85. doi: 10.12968/ijpn.2021.27.2.72. PMID: 33886358CrossRefGoogle ScholarPubMed
Tapp, D, Chenacher, S, Gérard, NPA, Bérubé-Mercier, P, Gelinas, C, Douville, F, Desbiens, JF. Observational pain assessment instruments for use with nonverbal patients at the end of life: A systematic review. J Palliat Care 2019 Oct; 34(4): 255–66. doi: 10.1177/0825859718816073. Epub 2019 Jan 13. PMID: 30638134CrossRefGoogle ScholarPubMed
Achterberg, WP, de Ruiter, CM, de Weerd-Spaetgens, CM, Geels, P, Horikx, A, Verduijn, M, et al. Multidisciplinaire richtlijn ‘Herkenning en behandeling van chronische pijn bij kwetsbare ouderen’ [Multidisciplinary guideline ‘Recognition and treatment of chronic pain in vulnerable elderly people’]. Ned Tijdschr Geneeskd. 2012; 155(35): A4606. Dutch. PMID: 22929749.Google Scholar
De Witt Jansen, B, Brazil, K, Passmore, P, Buchanan, H, Maxwell, D, McIlfatrick, S, et al. ‘A tool doesn’t add anything.’ The importance of added value: Use of observational pain tools with patients with advanced dementia approaching the end of life – a qualitative study of physician and nurse experiences and perspectives. Int J Geriatr Psychiatry 2018 Oct; 33(10): 1346–54. doi: 10.1002/gps.4931. Epub 2018 Jul 1. PMID: 29961948.CrossRefGoogle ScholarPubMed
May, K, Scammell, J. Nurses’ experiences of pain management in end-of-life dementia care: A literature review. Int J Palliat Nurs. 2020 Mar 2; 26(3): 110–18. doi: 10.12968/ijpn.2020.26.3.110. PMID: 32275475CrossRefGoogle ScholarPubMed
Lundin, E, Godskesen, TE. End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes. BMC Nurs. 2021 Mar 20; 20(1): 48. doi: 10.1186/s12912-021-00566-7. PMID: 33743691; PMCID: PMC7981921CrossRefGoogle Scholar
Brorson, H, Plymoth, H, Örmon, K, Bolmsjö, I. Pain relief at the end of life: Nurses’ experiences regarding end-of-life pain relief in patients with dementia. Pain Manag Nurs. 2014 Mar; 15(1): 315–23. doi: 10.1016/j.pmn.2012.10.005. Epub 2013 Feb 28. PMID: 23453467CrossRefGoogle ScholarPubMed
De Witt Jansen, B, Brazil, K, Passmore, P, Buchanan, H, Maxwell, D, McIlfatrick, SJ, et al. ‘There’s a Catch-22.’ The complexities of pain management for people with advanced dementia nearing the end of life: A qualitative exploration of physicians’ perspectives. Palliat Med. 2017 Sep; 31(8): 734–42. doi: 10.1177/0269216316673549. Epub 2016 Oct 26. PMID: 28659013CrossRefGoogle ScholarPubMed
De Witt Jansen, B, Brazil, K, Passmore, P, Buchanan, H, Maxwell, D, McIlfatrick, SJ, et al. Evaluation of the impact of telementoring using ECHO© technology on healthcare professionals’ knowledge and self-efficacy in assessing and managing pain for people with advanced dementia nearing the end of life. BMC Health Serv Res. 2018 Apr 2; 18(1): 228. doi: 10.1186/s12913-018-3032-y. PMID: 29606132; PMCID: PMC5879835CrossRefGoogle ScholarPubMed
Romem, A, Tom, SE, Beauchene, M, Babington, L, Scharf, SM, Romem, A. Pain management at the end of life: A comparative study of cancer, dementia, and chronic obstructive pulmonary disease patients. Palliat Med. 2015 May; 29(5): 464–9. doi: 10.1177/0269216315570411. Epub 2015 Feb 13. PMID: 25680377CrossRefGoogle ScholarPubMed
Achterberg, WP, Erdal, A, Husebo, BS, Kunz, M, Lautenbacher, S. Are chronic pain patients with dementia being undermedicated? J Pain Res. 2021 Feb 15; 14: 431–9. doi: 10.2147/JPR.S239321. PMID: 33623425; PMCID: PMC7894836CrossRefGoogle ScholarPubMed
Griffioen, C, Willems, EG, Husebo, BS, Achterberg, WP. Prevalence of the use of opioids for treatment of pain in persons with a cognitive impairment compared with cognitively intact persons: A systematic review. Curr Alzheimer Res. 2017; 14(5): 512–22. doi: 10.2174/1567205013666160629080735. PMID: 27357646CrossRefGoogle ScholarPubMed
Klapwijk, MS, Caljouw, MA, van Soest-Poortvliet, MC, van der Steen, JT, Achterberg, WP. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatr. 2014 Sep 2; 14: 99. doi: 10.1186/1471-2318-14-99. PMID: 25181947. PMCID: PMC4158395CrossRefGoogle ScholarPubMed
Broeckaert, B. Palliative sedation: Ethical aspects. In Gastmans, C, ed. Between Technology and Humanity: The Impact of Technology on Health Care Ethics. Leuven, Leuven University Press, 2002; 239–55.Google Scholar
Hendriks, SA, Smalbrugge, M, Hertogh, CM, van der Steen, JT. Dying with dementia: Symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage. 2014 Apr; 47(4): 710–20. doi: 10.1016/j.jpainsymman.2013.05.015CrossRefGoogle ScholarPubMed
Anquinet, L, Rietjens, JA, Vandervoort, A, van der Steen, JT, Vander Stichele, R, Deliens, L, Van den Block, L. Continuous deep sedation until death in nursing home residents with dementia: A case series. J Am Geriatr Soc. 2013 Oct; 61 (10): 1768–76. doi: 10.1111/jgs.12447. Epub 2013 Sep 3. PMID: 24000974CrossRefGoogle ScholarPubMed
Robijn, L, Gijsberts, MJ, Pype, P, Rietjens, J, Deliens, L, Chambaere, K. Continuous palliative sedation until death: The development of a practice protocol for nursing homes. J Am Med Dir Assoc. 2021 Apr 28: S1525-8610(21)00304–2. doi: 10.1016/j.jamda.2021.03.008. Epub ahead of print. PMID: 33930319CrossRefGoogle Scholar
Mitchell, SL, Teno, JM, Kiely, DK, Shaffer, ML, Jones, RN, Prigerson, HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009 Oct 15; 361(16): 1529–38. doi: 10.1056/NEJMoa0902234CrossRefGoogle ScholarPubMed
Hendriks, SA, Smalbrugge, M, van Gageldonk-Lafeber, AB, Galindo-Garre, F, Schipper, M, Hertogh, CMPM, van der Steen, JT. Pneumonia, intake problems, and survival among nursing home residents with variable stages of dementia in the Netherlands: Results from a prospective observational study. Alzheimer Dis Assoc Disord. 2017 Jul–Sep; 31(3): 200–8. doi: 10.1097/WAD.0000000000000171CrossRefGoogle ScholarPubMed
Miranda, R, van der Steen, JT, Smets, T, Van den Noortgate, N, Deliens, L, Payne, S, et al. Comfort and clinical events at the end of life of nursing home residents with and without dementia: The six-country epidemiological PACE study. Int J Geriatr Psychiatry 2020 Jul; 35(7): 719–27. doi: 10.1002/gps.5290CrossRefGoogle ScholarPubMed
Hendriks, SA, Smalbrugge, M, Deliens, L, Koopmans, RTCM, Onwuteaka-Philipsen, BD, Hertogh, CMPM, van der Steen, JT. End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands. Int J Geriatr Psychiatry 2017 Dec; 32(12): e43–e49. doi: 10.1002/gps.4650CrossRefGoogle ScholarPubMed
Beesems, SG, Blom, MT, van der Pas, MH, Hulleman, M, van de Glind, EM, van Munster, BC, et al. Comorbidity and favorable neurologic outcome after out-of-hospital cardiac arrest in patients of 70 years and older. Resuscitation 2015 Sep; 94: 33–9. doi: 10.1016/j.resuscitation.2015.06.01CrossRefGoogle ScholarPubMed
Ebell, MH, Becker, LA, Barry, HC, Hagen, M. Survival after in-hospital cardiopulmonary resuscitation. A meta-analysis. J Gen Intern Med. 1998 Dec; 13(12): 805–16. doi: 10.1046/j.1525-1497.1998.00244.xCrossRefGoogle ScholarPubMed
Volandes, AE, Abbo, ED. Flipping the default: A novel approach to cardiopulmonary resuscitation in end-stage dementia. J Clin Ethics Summer 2007; 18(2): 122–39.CrossRefGoogle Scholar
Arcand, M. End-of-life issues in advanced dementia. Part 1: Goals of care, decision-making process, and family education. Can Fam Physician 2015 Apr; 61(4): 330–4.Google ScholarPubMed
Verenso, the Dutch Association of Elderly Care Physicians. Multidisciplinaire richtlijn besluitvorming over reanimatie: Anticiperende besluitvorming over reanimatie bij kwetsbare ouderen. Deel 1 Samenvatting en aanbevelingen. Utrecht, Verenso, 2013.Google Scholar
Geijteman, EC, Brinkman-Stoppelenburg, A, Onwuteaka-Philipsen, BD, van der Heide, A, van Delden, JJ. Two decades of do-not-resuscitate decisions in the Netherlands. Resuscitation 2015 Sep; 94: e7–e8. doi: 10.1016/j.resuscitation.2015.06.028. Epub 2015 Jul 17CrossRefGoogle ScholarPubMed
Dujardin, J, Schuurmans, J, Westerduin, D, Wichmann, AB, Engels, Y. The COVID-19 pandemic: A tipping point for advance care planning? Experiences of general practitioners. Palliat Med. 2021 Jul; 35(7): 1238–48. doi: 10.1177/02692163211016979. Epub 2021 May 27CrossRefGoogle ScholarPubMed
Connellan, D, Diffley, K, McCabe, J, Cotter, A, McGinty, T, Sheehan, G, et al. Documentation of do-not-attempt-cardiopulmonary-resuscitation orders amid the COVID-19 pandemic. Age Ageing 2021 Jun 28; 50(4): 1048–51. doi: 10.1093/ageing/afab075CrossRefGoogle ScholarPubMed
Ye, P, Fry, L, Champion, JD. Changes in advance care planning for nursing home residents during the COVID-19 pandemic. J Am Med Dir Assoc. 2021 Jan; 22(1): 209–14. doi: 10.1016/j.jamda.2020.11.011. Epub 2020 Nov 19CrossRefGoogle ScholarPubMed
Hendriks, SA, Smalbrugge, M, Hertogh, CMPM, van der Steen, JT. Changes in care goals and treatment orders around the occurrence of health problems and hospital transfers in dementia: A prospective study. J Am Geriatr Soc. 2017 Apr; 65(4): 769–76. doi: 10.1111/jgs.14667CrossRefGoogle ScholarPubMed
Harrison-Dening, K., King, M, Jones, L, Vickerstaff, V, Sampson, EL. Advance care planning in dementia: Do family carers know the treatment preferences of people with early dementia? PLoS One. 2016 Jul 13; 11(7): e0159056. doi: 10.1371/journal.pone.0159056CrossRefGoogle ScholarPubMed
Malhotra, C, Mohamad, H, Østbye, T, Pollak, KI, Balasundaram, B, Malhotra, R, et al. Discordance between dementia caregivers’ goal of care and preference for life-extending treatments. Age Ageing 2021 Jun 28; 50(4): 1382–90. doi: 10.1093/ageing/afab04CrossRefGoogle ScholarPubMed
Van der Maaden, T, Hendriks, SA, de Vet, HC, Zomerhuis, MT, Smalbrugge, M, Jansma, EP, et al. Antibiotic use and associated factors in patients with dementia: A systematic review. Drugs Aging 2015 Jan; 32(1): 43–56. doi: 10.1007/s40266-014-0223-zCrossRefGoogle ScholarPubMed
Dufour, AB, Shaffer, ML, D’Agata, EMC, Habtemariam, D, Mitchell, SL. Survival after suspected urinary tract infection in individuals with advanced dementia. J Am Geriatr Soc. 2015 Dec; 63(12): 2472–7. doi: 10.1111/jgs.13833CrossRefGoogle ScholarPubMed
Van der Steen, JT, Pasman, HR, Ribbe, MW, van der Wal, G, Onwuteaka-Philipsen, BD. Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis. 2009; 41(2): 143–51. doi: 10.1080/00365540802616726CrossRefGoogle ScholarPubMed
Givens, JL, Jones, RN, Shaffer, ML, Kiely, DK, Mitchell, SL. Survival and comfort after treatment of pneumonia in advanced dementia. Arch Intern Med. 2010; 170(13): 1102–7.CrossRefGoogle ScholarPubMed
Van der Steen, JT. Prolonged life and increased symptoms vs prolonged dying and increased comfort after antibiotic treatment in patients with dementia and pneumonia. Arch Intern Med. 2011 Jan 10; 171(1): 93–4. doi: 10.1001/archinternmed.2010.487Google ScholarPubMed
Van der Maaden, T, van der Steen, JT, de Vet, HC, Hertogh, CM, Koopmans, RT. Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. J Am Med Dir Assoc. 2016 Feb; 17(2): 128–35. doi: 10.1016/j.jamda.2015.08.010. Epub 2015 Sep 26CrossRefGoogle ScholarPubMed
Parsons, C, van der Steen, JT. Antimicrobial use in patients with dementia: Current concerns and future recommendations. CNS Drugs 2017 Jun; 31(6): 433–8. doi: 10.1007/s40263-017-0427-yCrossRefGoogle ScholarPubMed
Van der Steen, JT, Lane, P, Kowall, NW, Knol, DL, Volicer, L. Antibiotics and mortality in patients with lower respiratory infection and advanced dementia. J Am Med Dir Assoc. 2012 Feb; 13(2): 156–61. doi: 10.1016/j.jamda.2010.07.001CrossRefGoogle ScholarPubMed
Koopmans, RT, van der Sterren, KJ, van der Steen, JT. The ‘natural’ endpoint of dementia: Death from cachexia or dehydration following palliative care? Int J Geriatr Psychiatry 2007 Apr; 22(4): 350–5. doi: 10.1002/gps.1680CrossRefGoogle ScholarPubMed
Sternberg, SA, Shinan-Altman, S, Volicer, L, Casarett, DJ, van der Steen, JT. Palliative care in advanced dementia: Comparison of strategies in three countries. Geriatrics (Basel). 2021 Apr 22; 6(2): 44. doi: 10.3390/geriatrics6020044CrossRefGoogle ScholarPubMed
Van der Steen, JT, Di Giulio, P, Giunco, F, Monti, M, Gentile, S, Villani, D, et al. End of Life Observatory–Prospective Study on Dementia Patients Care (EoLO-PSODEC) Research Group. Pneumonia in nursing home patients with advanced dementia: Decisions, intravenous rehydration therapy, and discomfort. Am J Hosp Palliat Care 2018 Mar; 35(3): 423–30. doi: 10.1177/1049909117709002CrossRefGoogle Scholar
Anantapong, K, Davies, N, Chan, J, McInnerney, D, Sampson, EL. Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: A systematic review. BMC Geriatr. 2020 Dec 2; 20(1): 520. doi: 10.1186/s12877-020-01931-yCrossRefGoogle ScholarPubMed
Anantapong, K, Barrado-Martín, Y, Nair, P, Rait, G, Smith, CH, Moore, KJ, et al. How do people living with dementia perceive eating and drinking difficulties? A qualitative study. Age Ageing 2021 Jun 11: afab108. doi: 10.1093/ageing/afab108. Online ahead of printCrossRefGoogle Scholar
Barrado-Martín, Y, Nair, P, Anantapong, K, Aker, N, Moore, KJ, Smith, CH, et al. Family caregivers’ and professionals’ experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life. Health Soc Care Community 2021 May 6. doi: 10.1111/hsc.13404. Online ahead of printCrossRefGoogle Scholar
The, AM, Pasman, R, Onwuteaka-Philipsen, B, Ribbe, M, van der Wal, G. Withholding the artificial administration of fluids and food from elderly patients with dementia: Ethnographic study. BMJ. 2002 Dec 7; 325(7376): 1326. doi: 10.1136/bmj.325.7376.1326CrossRefGoogle ScholarPubMed
Van der Steen, JT, Hertogh, CM, de Graas, T, Nakanishi, M, Toscani, F, Arcand, M. Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: Sensitive topics revised before implementation. J Med Ethics 2013 Feb; 39(2): 104–9. doi: 10.1136/medethics-2012-100903CrossRefGoogle ScholarPubMed
Bavelaar, L, McCann, A, Cornally, N, et al.; on behalf of the mySupport study group. Guidance for family information about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan. [Submitted]Google Scholar
Van der Steen, JT, Heck, S, Juffermans, CC, Garvelink, MM, Achterberg, WP, Clayton, J, et al. Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: A mixed-methods evaluation study. BMJ Open 2021 Apr 12; 11(4): e044591. doi: 10.1136/bmjopen-2020-044591CrossRefGoogle ScholarPubMed
Verelst, SG, Pasman, HR, Onwuteaka-Philipsen, BD, Ribbe, MW, van der Wal, G. Ervaringen van familie met de besluitvorming rond kunstmatige toediening van vocht en voedsel (ktvv) bij mensen met dementie in het verpleeghuis. [Experience of family members with the decision concerning artificial nutrition and hydration in people with dementia in nursing homes.] Tijdschr Gerontol Geriatr. 2006 Apr; 37(2): 51–8. doi: 10.1007/BF03074766. https://tvgg.nl/artikelen/ervaringen-van-familie-met-de-besluitvorming-rond-kunstmatige-toediening-van-vocht-en-voedsel-ktvv-bij-mensen-met-dementie-in-het-verpleeghuisCrossRefGoogle Scholar
Davies, N, Manthorpe, J, Sampson, EL, Lamahewa, K, Wilcock, J, Mathew, R, Iliffe, S. Guiding practitioners through end of life care for people with dementia: The use of heuristics. PLoS One 2018 Nov 14; 13(11): e0206422. doi: 10.1371/journal.pone.0206422CrossRefGoogle ScholarPubMed
Lee, YF, Hsu, TW, Liang, CS, Yeh, TC, Chen, TY, Chen, NC, Chu, CS. The efficacy and safety of tube feeding in advanced dementia patients: A systemic review and meta-analysis study. J Am Med Dir Assoc. 2021 Feb; 22(2): 357–63. doi: 10.1016/j.jamda.2020.06.035CrossRefGoogle ScholarPubMed
Wu, CY, Chen, PJ, Ho, TL, Lin, WY, Cheng, SY. To hydrate or not to hydrate? The effect of hydration on survival, symptoms and quality of dying among terminally ill cancer patients. BMC Palliat Care 2021 Jan 12; 20(1): 13.CrossRefGoogle ScholarPubMed
Volicer, L, Pope, TM, Steinberg, KE. Assistance with eating and drinking only when requested can prevent living with advanced dementia. J Am Med Dir Assoc. 2019 Nov; 20(11): 1353–5. doi: 10.1016/j.jamda.2019.08.035CrossRefGoogle ScholarPubMed
Evenblij, K, Pasman, HRW, van der Heide, A, Hoekstra, T, Onwuteaka-Philipsen, BD. Factors associated with requesting and receiving euthanasia: A nationwide mortality follow-back study with a focus on patients with psychiatric disorders, dementia, or an accumulation of health problems related to old age. BMC Med. 2019 Feb 19; 17(1): 39. doi: 10.1186/s12916-019-1276-yCrossRefGoogle ScholarPubMed
Rurup, M, Onwuteaka-Philipsen, B, van der Heide, A, van der Wal, G, Deeg, G. Frequency and determinants of advance directives concerning end-of-life care in the Netherlands. Soc Sci Med. 2006; 62:1552–63.CrossRefGoogle ScholarPubMed
Mangino, D, Nicolini, M, De Vries, R, Kim, S. Euthanasia and assisted suicide of persons with dementia in the Netherlands. Am J Geriatr Psychiatry 2020; 28: 466–77.CrossRefGoogle ScholarPubMed
Regional Euthanasia Review Committees. Annual Report 2017. The Hague, 2018.Google Scholar
Rurup, M, Onwuteaka-Philipsen, B, van der Heide, A, van der Wal, G, van der Maas, P, et al. Physicians’ experiences with demented patients with advance euthanasia directives in the Netherlands. J Am Geriatr Soc. 2005; 53: 1138–44.CrossRefGoogle ScholarPubMed
Brinkman-Stoppelenburg, A, Evenblij, K, Pasman, R, van Delden, J, Onwuteaka-Philipsen, B, van der Heide, A. Physicians’ and public attitudes toward euthanasia in people with advanced dementia. J Am Geriatr Soc. 2020; 68: 2319–28.CrossRefGoogle ScholarPubMed
Bolt, E, Snijdewind, M, Willems, D, van der Heide, A, Onwuteaka-Philipsen, B. Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living? J Med Ethics 2015; 41: 592–8.CrossRefGoogle ScholarPubMed
Kouwenhoven, P., Raijmakers, N., van Delden, J., Rietjens, J., van Tol, D., van de Vathorst, S, et al. Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public. BMC Med Ethics 2015; 16: 7.CrossRefGoogle ScholarPubMed
Kouwenhoven, P, Raijmakers, N, van Delden, J, Rietjens, J, Schermer, M, van Thiel, G, et al. Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: A mixed method approach. Palliative Medicine 2013; 27: 273–80.CrossRefGoogle Scholar
De Boer, M, Dröes, R-M, Jonker, C, Eefsting, J, Hertogh, C. Advance directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. J Am Geriatr Soc. 2011; 59: 989–96.CrossRefGoogle ScholarPubMed
De Boer, M, Dröes, R-M, Jonker, C, Eefsting, J, Hertogh, C. Advance directives for euthanasia in dementia: Do law-based opportunities lead to more euthanasia? Health Policy 2010; 98: 256–62.CrossRefGoogle ScholarPubMed
Picard, G, Bier, J-C, Capron, I, De Deyn, PP, Deryck, O, Engelborghs, S, et al. Dementia, end of life, and euthanasia: A survey among dementia specialists organized by the Belgian Dementia Council. J of Alzheimers Dis. 2019; 69: 989–1001.CrossRefGoogle ScholarPubMed
Rurup, M, Onwuteaka-Philipsen, B, Pasman, H, Ribbe, M, van der Wal, G. Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia. Patient Educ Couns. 2006; 61: 372–80.CrossRefGoogle ScholarPubMed
Tomlinson, E, Stott, J. Assisted dying in dementia: A systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these. Int J Geriatr Psychiatry 2015; 30: 10–20.CrossRefGoogle Scholar
Ryynänen, O-P, Myllykangas, M, Viren, M, Heino, H. Attitudes towards euthanasia among physicians, nurses and the general public in Finland. Public Health 2002; 116: 322–31.CrossRefGoogle ScholarPubMed
Armstrong-Esther, C, Browne, K, McAffee, J. Investigation into nursing staff knowledge and attitude to dementia. Int J Psychiatr Nurs Res. 1999; 4: 489–97.Google ScholarPubMed
Kitchener, B, Jorm, A. Conditions required for a law on active voluntary euthanasia: A survey of nurses’ opinions in the Australian Capital Territory. J Med Ethics 1999; 25: 25–30.CrossRefGoogle Scholar
Williams, N, Dunford, C, Knowles, A, Warner, J. Public attitudes to life-sustaining treatments and euthanasia in dementia. Int J Geriatr Psychiatry 2007; 22: 1229–34.CrossRefGoogle ScholarPubMed
Van Holsteyn, J., Trappenburg, M. Citizens’ opinions on new forms of euthanasia: A report from the Netherlands. Patient Educ Couns. 1998; 35: 63–73.CrossRefGoogle ScholarPubMed
Gómez-Virseda, C, Gastmans, C. Euthanasia in persons with advanced dementia: A dignity-enhancing care approach. J Med Ethics 2021 May 20. doi: 10.1136/medethics-2021-107308. Online ahead of printCrossRefGoogle Scholar
Mondragon, J, Salame-Khouri, L, Kraus-Weisman, A, De Deyn, PP. Bioethical implications of end-of-life decision-making in patients with dementia: A tale of two societies. Monash Bioeth Rev. 2020; 38: 49–67.CrossRefGoogle ScholarPubMed
Cholbi, M. 2015. Kant on euthanasia and the duty to die: Clearing the air. J Med Ethics 2015; 41: 607–10.CrossRefGoogle ScholarPubMed
Gastmans, C. Dignity-enhancing care for persons with dementia and its application to advance euthanasia directives. In Denier, Y, Gastmans, C, Vandevelde, A, eds. Justice, Luck and Responsibility in Health Care: Philosophical Background and Ethical Implications for End-of-Life Care. Dordrecht, Springer,2013; 145–65.Google Scholar
Den Hartogh, G. The authority of advance directives. In Denier, Y, Gastmans, C, Vandevelde, A, eds. Justice, Luck and Responsibility in Health Care: Philosophical Background and Ethical Implications for End-of-Life Care. Dordrecht, Springer, 2013; 167–88.Google Scholar
Nys, T. The wreckage of our flesh: Dementia, autonomy and personhood. In Denier, Y, Gastmans, C, Vandevelde, A, eds. Justice, Luck and Responsibility in Health Care: Philosophical Background and Ethical Implications for End-of-Life Care. Dordrecht, Springer, 2013; 189–203.CrossRefGoogle Scholar
Johnstone, M. Metaphors, stigma and the ‘Alzheimerization’ of the euthanasia debate. Dementia 2013; 12: 377–93.CrossRefGoogle ScholarPubMed
Sharp, R. The dangers of euthanasia and dementia: How Kantian thinking might be used to support non-voluntary euthanasia in cases of extreme dementia. Bioethics 2012; 26: 231–5.CrossRefGoogle ScholarPubMed
Alvargonzalez, D. Alzheimer’s disease and euthanasia. J Aging Stud. 2012; 26: 377–85.CrossRefGoogle ScholarPubMed
Gastmans, C, De Lepeleire, J. Living to the bitter end? A personalist approach to euthanasia in persons with severe dementia. Bioethics 2010; 24: 78–86.CrossRefGoogle Scholar
Draper, B, Peisah, C, Snowdon, J, Brodaty, H. Early dementia diagnosis and the risk of suicide and euthanasia. Alzheimers Dement. 2010; 6: 75–82.CrossRefGoogle ScholarPubMed
Gastmans, C, Denier, Y. What if patients with dementia use decision aids to make an advance euthanasia request? Am J Bioeth. 2010; 10(4): 25–6.CrossRefGoogle ScholarPubMed
Hertogh, C, De Boer, M, Dröes, RM, Eefsting, J. Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia of patients with dementia. Am J Bioeth. 2007; 7(4): 48–56.CrossRefGoogle ScholarPubMed
Dworkin, R. Life’s Dominion: An Argument about Abortion and Euthanasia. London, Harper Collins, 2003.Google Scholar
Dworkin, R. Life past reason. In Kuhse, H, Singer, P, eds. Bioethics: An Anthology. Malden, Blackwell, 2006; 357–64.Google Scholar
Post, S. Alzheimer disease and the ‘then’ self. Kennedy Inst Ethics J. 1995; 4: 307–21.Google Scholar
De Boer, M, Hertogh, C, Dröes, R-M, Jonker, C, Eefsting, J. Advance directives in dementia: Issues of validity and effectiveness. Int Psychogeriatr. 2010; 22: 201–8.CrossRefGoogle ScholarPubMed
Hughes, J. Views of the person with dementia. J Med Ethics 2001; 27: 86–91.CrossRefGoogle ScholarPubMed
Levy, B, Green, M. Too soon to give up: Re-examining the value of advance directives. Am J Bioeth 2010; 10(4): 2–22.Google Scholar
Gómez-Virseda, C, De Maeseneer, Y, Gastmans, C. Relational autonomy in end-of-life care ethics: A contextualized approach to real-life complexities. BMC Med Ethics 2020; 21(1): 50.CrossRefGoogle ScholarPubMed
Widdershoven, G, Berghmans, R. Advance directives in dementia care: From instructions to instruments. Patient Educ Couns. 2001; 44: 179–86.CrossRefGoogle ScholarPubMed
Hertogh, C. The role of advance euthanasia directives as an aid to communication and shared decision-making in dementia. J Med Ethics 2009; 35: 100–3.CrossRefGoogle ScholarPubMed
Agich, G. Dependency and Autonomy in Old Age: An Ethical Framework for Long-Term Care. Cambridge, Cambridge University Press, 2003.CrossRefGoogle Scholar
Dresser, R. Dworkin on dementia: Elegant theory, questionable policy. Hastings Cent Rep. 1995; 25(6): 32–8.CrossRefGoogle ScholarPubMed
Goering, S. What makes suffering ‘unbearable and hopeless’? Advance directives, dementia and disability. Am J Bioeth. 2007; 7(4): 62–3.CrossRefGoogle ScholarPubMed
Moody, H. Ethics in an Aging Society. Baltimore, MD, Johns Hopkins University Press, 1992.CrossRefGoogle Scholar
Gómez-Virseda, C, De Maeseneer, Y, Gastmans, C. Relational autonomy: What does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Med Ethics 2019; 20(1): 76.CrossRefGoogle Scholar
Tulsky, J. Beyond advance directives: Importance of communication skills at the end of life. JAMA 2005; 294: 359–65.CrossRefGoogle ScholarPubMed

Save book to Kindle

To save this book to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×