{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T05:44:30Z","timestamp":1791956670150,"version":"4.3.4"},"reference-count":52,"publisher":"Oxford University Press (OUP)","issue":"11","license":[{"start":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T00:00:00Z","timestamp":1788825600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Radboud University Medical Center, Nijmegen, The Netherlands","id":[{"id":"https:\/\/ror.org\/05wg1m734","id-type":"ROR","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,10,8]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background and Objectives<\/jats:title>\n                    <jats:p>As the prevalence of multimorbidity among older adults is rising, challenges regarding their end-of-life healthcare choices are increasingly relevant. To address knowledge gaps regarding decision-making, we explored how older adults with multimorbidity, their relatives and involved healthcare professionals (HCPs) experienced end-of-life healthcare choices, how their experiences related to each other and how these choices occurred in interactions between them over time.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Research Design and Methods<\/jats:title>\n                    <jats:p>We conducted a multiperspective, longitudinal, interview and observation study with a phenomenological and ethnographic approach. We followed nine 6-month patient trajectories with 11 relatives and 58 HCPs and conducted 73 observations of patient-healthcare professional interactions and 63 interviews.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The meaning of end-of-life healthcare choices of older people with multimorbidity was essentially understood as an ongoing, entangled, existential, and relational process, shaped by, yet also transcending, healthcare contexts. This process was characterized by four tensions: (i) the experience of not having a choice, but making decisions nonetheless; (ii) the existential experience and the medical gaze; (iii) the importance of relatives and their limited role in healthcare; and (iv) navigating fragmented healthcare with interrelated conditions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion and Implications<\/jats:title>\n                    <jats:p>HCPs\u2019 limited insight into patients\u2019 and relatives\u2019 personal, existential perspectives and relational contexts calls for a better exploration of their lifeworld to ensure the best possible alignment of healthcare decisions with patients\u2019 and relatives\u2019 needs and values. Older adults with multimorbidity are inadequately supported by fragmented healthcare systems, and efforts to improve this should consider existential, relational, and systemic factors.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/geront\/gnag216","type":"journal-article","created":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T11:35:04Z","timestamp":1788867304000},"source":"Crossref","is-referenced-by-count":0,"title":["\u201cI don\u2019t know whether I really have choices\u201d: a multiperspective and longitudinal exploration of healthcare choices of older adults with multimorbidity"],"prefix":"10.1093","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7394-8378","authenticated-orcid":false,"given":"Thessa W","family":"Th\u00f6lking","sequence":"first","affiliation":[{"name":"Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center , Nijmegen,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7669-1018","authenticated-orcid":false,"given":"Yvonne","family":"Engels","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center , Nijmegen,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8482-9048","authenticated-orcid":false,"given":"Yvonne","family":"Schoon","sequence":"additional","affiliation":[{"name":"Department of Geriatrics, Radboud University Medical Center , Nijmegen,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2940-9163","authenticated-orcid":false,"given":"Els J","family":"van Wijngaarden","sequence":"additional","affiliation":[{"name":"Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center , Nijmegen,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,9,8]]},"reference":[{"key":"2026101400463104700_gnag216-B1","author":"Antonides","year":"2026"},{"key":"2026101400463104700_gnag216-B2","doi-asserted-by":"publisher","first-page":"877","DOI":"10.1111\/1467-9566.13068","article-title":"Negotiating the \u2018buffet\u2019 of choice: Advances in technology and end-of-life decision-making in the intensive care unit setting","volume":"42","author":"Bandini","year":"2020","journal-title":"Sociology of Health & Illness"},{"key":"2026101400463104700_gnag216-B3","doi-asserted-by":"publisher","first-page":"e031763","DOI":"10.1136\/bmjopen-2019-031763","article-title":"Key components of shared decision making models: A systematic review","volume":"9","author":"Bomhof-Roordink","year":"2019","journal-title":"BMJ Open"},{"key":"2026101400463104700_gnag216-B4","doi-asserted-by":"publisher","first-page":"700","DOI":"10.1177\/0011392115590084","article-title":"Planning for an (un)certain future: Choice within English end-of-life care","volume":"63","author":"Borgstrom","year":"2015","journal-title":"Current Sociology"},{"key":"2026101400463104700_gnag216-B5","doi-asserted-by":"publisher","first-page":"665","DOI":"10.1111\/jgs.15809","article-title":"Decision making for older adults with multiple chronic conditions: Executive Summary for the American Geriatrics Society Guiding Principles on the care of older adults with multimorbidity","volume":"67","author":"Boyd","year":"2019","journal-title":"Journal of the American Geriatrics Society"},{"key":"2026101400463104700_gnag216-B6","doi-asserted-by":"publisher","first-page":"786","DOI":"10.1080\/02813432.2025.2507278","article-title":"What makes patients in primary care complex? A scoping review combined with a focus group analysis","volume":"43","author":"Braspenning","year":"2025","journal-title":"Scandinavian Journal of Primary Health Care"},{"key":"2026101400463104700_gnag216-B7","doi-asserted-by":"publisher","first-page":"600","DOI":"10.1016\/j.pec.2016.10.016","article-title":"A patient in the clinic; A person in the world. Why shared decision making needs to center on the person rather than the medical encounter","volume":"100","author":"Clayman","year":"2017","journal-title":"Patient Education and Counseling"},{"key":"2026101400463104700_gnag216-B8","doi-asserted-by":"publisher","first-page":"826","DOI":"10.1177\/1049732316656161","article-title":"Crafting stories in hermeneutic phenomenology research: A methodological device","volume":"27","author":"Crowther","year":"2017","journal-title":"Qualitative Health Research"},{"key":"2026101400463104700_gnag216-B9","volume-title":"Reflective lifeworld research","author":"Dahlberg","year":"2008"},{"key":"2026101400463104700_gnag216-B10","doi-asserted-by":"publisher","first-page":"114","DOI":"10.1093\/geront\/42.suppl_3.114","article-title":"\u201cChoice\u201d in end-of-life decision making: Researching fact or fiction?","volume":"42(suppl_3)","author":"Drought","year":"2002","journal-title":"The Gerontologist"},{"key":"2026101400463104700_gnag216-B11","doi-asserted-by":"crossref","DOI":"10.7208\/chicago\/9780226206868.001.0001","volume-title":"Writing ethnographic fieldnotes","author":"Emerson","year":"2011"},{"key":"2026101400463104700_gnag216-B12","doi-asserted-by":"publisher","first-page":"afac188","DOI":"10.1093\/ageing\/afac188","article-title":"Total uncertainty: A systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals","volume":"51","author":"Etkind","year":"2022","journal-title":"Age and Ageing"},{"key":"2026101400463104700_gnag216-B13","doi-asserted-by":"publisher","first-page":"76","DOI":"10.1186\/s12910-019-0417-3","article-title":"Relational autonomy: What does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature","volume":"20","author":"G\u00f3mez-V\u00edrseda","year":"2019","journal-title":"BMC Medical Ethics"},{"key":"2026101400463104700_gnag216-B14","doi-asserted-by":"publisher","first-page":"1322","DOI":"10.1111\/jep.12781","article-title":"The Hawthorne Effect in direct observation research with physicians and patients","volume":"23","author":"Goodwin","year":"2017","journal-title":"Journal of Evaluation in Clinical Practice"},{"key":"2026101400463104700_gnag216-B15","doi-asserted-by":"publisher","first-page":"1786","DOI":"10.1016\/j.pec.2019.07.020","article-title":"Purposeful SDM: A problem-based approach to caring for patients with shared decision making","volume":"102","author":"Hargraves","year":"2019","journal-title":"Patient Education and Counseling"},{"key":"2026101400463104700_gnag216-B16","doi-asserted-by":"publisher","first-page":"285","DOI":"10.1136\/bmjspcare-2013-000488","article-title":"Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): A mixed-methods study","volume":"4","author":"Highet","year":"2014","journal-title":"BMJ Supportive & Palliative Care"},{"key":"2026101400463104700_gnag216-B17","doi-asserted-by":"publisher","first-page":"b4122","DOI":"10.1136\/bmj.b4122","article-title":"Use of multiperspective qualitative interviews to understand patients\u2019 and carers\u2019 beliefs, experiences, and needs","volume":"339","author":"Kendall","year":"2009","journal-title":"BMJ"},{"key":"2026101400463104700_gnag216-B18","doi-asserted-by":"publisher","first-page":"1008","DOI":"10.1093\/geront\/gnaa223","article-title":"Patient-centeredness in older adults with multimorbidity: Results of an Online Expert Delphi Study","volume":"61","author":"Kivelitz","year":"2021","journal-title":"The Gerontologist"},{"key":"2026101400463104700_gnag216-B19","doi-asserted-by":"publisher","DOI":"10.17169\/fqs-6.3.20","article-title":"Focused ethnography","volume":"6, 44","author":"Knoblauch","year":"2005","journal-title":"Forum Qualitative Sozialforschung\/Forum: Qualitative Social Research"},{"key":"2026101400463104700_gnag216-B20","author":"Kroneman","year":"2025"},{"key":"2026101400463104700_gnag216-B21","doi-asserted-by":"publisher","first-page":"446","DOI":"10.1186\/s12913-020-05303-5","article-title":"A qualitative study of old patients\u2019 experiences of the quality of the health services in hospital and 30\u2009days after hospitalization","volume":"20","author":"Lilleheie","year":"2020","journal-title":"BMC Health Services Research"},{"key":"2026101400463104700_gnag216-B22","doi-asserted-by":"publisher","DOI":"10.1093\/oso\/9780195123333.001.0001","volume-title":"Relational autonomy: Feminist perspectives on autonomy, agency, and the social self","author":"Mackenzie","year":"2000"},{"key":"2026101400463104700_gnag216-B23","doi-asserted-by":"publisher","first-page":"60","DOI":"10.1136\/bmjspcare-2013-000639","article-title":"\u2018My body\u2019s falling apart.\u2019 Understanding the experiences of patients with advanced multimorbidity to improve care: Serial interviews with patients and carers","volume":"6","author":"Mason","year":"2016","journal-title":"BMJ Supportive & Palliative Care"},{"key":"2026101400463104700_gnag216-B24","doi-asserted-by":"publisher","first-page":"231","DOI":"10.1186\/s12877-018-0925-x","article-title":"Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: A scoping review","volume":"18","author":"McGilton","year":"2018","journal-title":"BMC Geriatrics"},{"key":"2026101400463104700_gnag216-B25","author":"Ministry of Public Health Welfare and Sport","year":"2016"},{"key":"2026101400463104700_gnag216-B26","doi-asserted-by":"crossref","DOI":"10.4324\/9780203927076","volume-title":"The logic of care: Health and the problem of patient choice","author":"Mol","year":"2008"},{"key":"2026101400463104700_gnag216-B27","doi-asserted-by":"publisher","first-page":"929","DOI":"10.1136\/bmj.325.7370.929","article-title":"Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the community","volume":"325","author":"Murray","year":"2002","journal-title":"BMJ (Clinical Research Ed.)"},{"key":"2026101400463104700_gnag216-B28","doi-asserted-by":"publisher","first-page":"b3702","DOI":"10.1136\/bmj.b3702","article-title":"Use of serial qualitative interviews to understand patients\u2019 evolving experiences and needs","volume":"339","author":"Murray","year":"2009","journal-title":"BMJ (Clinical Research Ed.)"},{"key":"2026101400463104700_gnag216-B29","doi-asserted-by":"publisher","first-page":"j878","DOI":"10.1136\/bmj.j878","article-title":"Palliative care from diagnosis to death","volume":"356","author":"Murray","year":"2017","journal-title":"BMJ (Clinical Research Ed.)"},{"key":"2026101400463104700_gnag216-B30","doi-asserted-by":"publisher","DOI":"10.4324\/9780203864722","volume-title":"Ethnographic methods","author":"O\u2019Reilly","year":"2012"},{"key":"2026101400463104700_gnag216-B31","doi-asserted-by":"publisher","first-page":"511","DOI":"10.1111\/j.1467-9566.2007.01071.x","article-title":"\u2018It\u2019s something for you both to think about\u2019: Choice and decision making in nuchal translucency screening for Down\u2019s syndrome","volume":"30","author":"Pilnick","year":"2008","journal-title":"Sociology of Health & Illness"},{"key":"2026101400463104700_gnag216-B32","doi-asserted-by":"publisher","first-page":"2860","DOI":"10.1016\/j.pec.2022.05.009","article-title":"Bringing personal perspective elicitation to the heart of shared decision-making: A scoping review","volume":"105","author":"Rake","year":"2022","journal-title":"Patient Education and Counseling"},{"key":"2026101400463104700_gnag216-B33","doi-asserted-by":"publisher","first-page":"E1072","DOI":"10.1503\/cmaj.733231","article-title":"The utility and value of the \u201csurprise question\u201d for patients with serious illness","volume":"189","author":"Romo","year":"2017","journal-title":"CMAJ: Canadian Medical Association Journal\u2009=\u2009Journal De L\u2019Association Medicale Canadienne"},{"key":"2026101400463104700_gnag216-B34","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1016\/S0140-6736(12)60482-6","article-title":"Multimorbidity: Redesigning health care for people who use it","volume":"380","author":"Salisbury","year":"2012","journal-title":"Lancet (London, England)"},{"key":"2026101400463104700_gnag216-B35","doi-asserted-by":"publisher","first-page":"837","DOI":"10.1016\/S0140-6736(21)02314-X","article-title":"Report of the Lancet Commission on the Value of Death: Bringing death back into life","volume":"399","author":"Sallnow","year":"2022","journal-title":"Lancet (London, England)"},{"key":"2026101400463104700_gnag216-B36","doi-asserted-by":"publisher","first-page":"1135","DOI":"10.1093\/geront\/gnac013","article-title":"Measuring the quality of care for older adults with multimorbidity: Results of the MULTIqual Project","volume":"62","author":"Schulze","year":"2022","journal-title":"The Gerontologist"},{"key":"2026101400463104700_gnag216-B37","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1177\/14647001030042006","article-title":"The place of care: The relevance of the feminist ethic of care for social policy","volume":"4","author":"Sevenhuijsen","year":"2003","journal-title":"Feminist Theory"},{"key":"2026101400463104700_gnag216-B38","doi-asserted-by":"publisher","first-page":"48","DOI":"10.1038\/s41572-022-00376-4","article-title":"Multimorbidity","volume":"8","author":"Skou","year":"2022","journal-title":"Nature Reviews. Disease Primers"},{"key":"2026101400463104700_gnag216-B39","doi-asserted-by":"publisher","first-page":"549","DOI":"10.1007\/s11019-014-9544-2","article-title":"Multiple dimensions of embodiment in medical practices","volume":"17","author":"Slatman","year":"2014","journal-title":"Medicine, Health Care, and Philosophy"},{"key":"2026101400463104700_gnag216-B40","doi-asserted-by":"publisher","first-page":"e032921","DOI":"10.1136\/bmjopen-2019-032921","article-title":"Knowing what the patient wants: A hospital ethnography studying physician culture in shared decision making in the Netherlands","volume":"10","author":"Spinnewijn","year":"2020","journal-title":"BMJ Open"},{"key":"2026101400463104700_gnag216-B41","doi-asserted-by":"publisher","first-page":"1335","DOI":"10.1080\/10410236.2017.1350913","article-title":"Treatment recommendations as actions","volume":"33","author":"Stivers","year":"2018","journal-title":"Health Communication"},{"key":"2026101400463104700_gnag216-B42","doi-asserted-by":"publisher","first-page":"e1004229","DOI":"10.1371\/journal.pmed.1004229","article-title":"Multimorbidity: Addressing the next global pandemic","volume":"20","author":"The PLoS Medicine Editors","year":"2023","journal-title":"PLoS Medicine"},{"key":"2026101400463104700_gnag216-B43","doi-asserted-by":"publisher","first-page":"109194","DOI":"10.1016\/j.pec.2025.109194","article-title":"Considerations of older adults with multimorbidity when facing healthcare choices: A qualitative systematic review","volume":"138","author":"Th\u00f6lking","year":"2025","journal-title":"Patient Education and Counseling"},{"key":"2026101400463104700_gnag216-B44","doi-asserted-by":"publisher","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care"},{"key":"2026101400463104700_gnag216-B45","doi-asserted-by":"publisher","first-page":"219","DOI":"10.1093\/jmp\/12.3.219","article-title":"The meaning of illness: A phenomenological approach to the patient-physician relationship","volume":"12","author":"Toombs","year":"1987","journal-title":"The Journal of Medicine and Philosophy"},{"key":"2026101400463104700_gnag216-B46","doi-asserted-by":"publisher","DOI":"10.4324\/9781003070672","volume-title":"Moral boundaries: A political argument for an ethic of care","author":"Tronto","year":"1993","edition":"1st"},{"key":"2026101400463104700_gnag216-B47","doi-asserted-by":"publisher","first-page":"637","DOI":"10.1136\/medethics-2016-103791","article-title":"How shared is shared decision-making? A care-ethical view on the role of partner and family","volume":"43","author":"van Nistelrooij","year":"2017","journal-title":"Journal of Medical Ethics"},{"key":"2026101400463104700_gnag216-B48","doi-asserted-by":"publisher","first-page":"177","DOI":"10.1080\/13645579.2017.1345149","article-title":"Developing an analytical framework for multiple perspective, qualitative longitudinal interviews (MPQLI)","volume":"21","author":"Vogl","year":"2018","journal-title":"International Journal of Social Research Methodology"},{"key":"2026101400463104700_gnag216-B49","doi-asserted-by":"publisher","first-page":"594","DOI":"10.1016\/j.pec.2021.06.016","article-title":"Contextualizing care: An essential and measurable clinical competency","volume":"105","author":"Weiner","year":"2022","journal-title":"Patient Education and Counseling"},{"key":"2026101400463104700_gnag216-B50","doi-asserted-by":"publisher","first-page":"458","DOI":"10.4337\/9781035317349","volume-title":"Research handbook on end of life care and society","author":"Whitelaw","year":"2025"},{"key":"2026101400463104700_gnag216-B51","doi-asserted-by":"publisher","first-page":"l6964","DOI":"10.1136\/bmj.l6964","article-title":"Rising to the challenge of multimorbidity","volume":"368","author":"Whitty","year":"2020","journal-title":"BMJ (Clinical Research Ed.)"},{"key":"2026101400463104700_gnag216-B52","author":"World Health Organization","year":"2024"}],"container-title":["The Gerontologist"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/gerontologist\/advance-article-pdf\/doi\/10.1093\/geront\/gnag216\/70994246\/gnag216.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/66\/11\/gnag216\/70994246\/gnag216.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/gerontologist\/article-pdf\/66\/11\/gnag216\/70994246\/gnag216.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T04:46:48Z","timestamp":1791953208000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/gerontologist\/article\/doi\/10.1093\/geront\/gnag216\/8787919"}},"subtitle":[],"editor":[{"given":"Tonya J","family":"Roberts","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,9,8]]},"references-count":52,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2026,10,8]]}},"URL":"https:\/\/doi.org\/10.1093\/geront\/gnag216","relation":{},"ISSN":["0016-9013","1758-5341"],"issn-type":[{"value":"0016-9013","type":"print"},{"value":"1758-5341","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,11]]},"published":{"date-parts":[[2026,9,8]]},"article-number":"gnag216"}}