Ambiguity at the End of Life: Clinical Heuristics and the Problem of Terminal Illness.

Λεπτομέρειες βιβλιογραφικής εγγραφής
Τίτλος:	Ambiguity at the End of Life: Clinical Heuristics and the Problem of Terminal Illness.
Συγγραφείς:	Elder TB; The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Lebanon, New Hampshire, USA.
Πηγή:	Sociology of health & illness [Sociol Health Illn] 2026 May; Vol. 48 (4), pp. e70197.
Τύπος έκδοσης:	Journal Article
Γλώσσα:	English
Στοιχεία περιοδικού:	Publisher: Blackwell Publishing Country of Publication: England NLM ID: 8205036 Publication Model: Print Cited Medium: Internet ISSN: 1467-9566 (Electronic) Linking ISSN: 01419889 NLM ISO Abbreviation: Sociol Health Illn Subsets: MEDLINE
Imprint Name(s):	Publication: <2003->: Oxford ; Malden, MA : Blackwell Publishing Original Publication: Henley-on-Thames ; Boston, Mass. : Routledge & Kegan Paul
Ιατρικοί όροι (MeSH):	Terminal Care/psychology , Palliative Care/psychology , Terminally Ill/psychology , Heuristics, Humans ; Decision Making ; United States ; Hospice Care ; Uncertainty ; Physician-Patient Relations
Περίληψη:	This paper examines how clinicians in Hospice and Palliative Medicine (HPM) help patients and colleagues resolve ambiguous clinical situations at the end of life. 'Clinical ambiguity' is advanced as a concept to describe how the heuristics used to match medical knowledge to patient interests produce diverging imperatives when patients are terminally ill. Separate from uncertainty, clinical ambiguity captures not a lack of definitive information or knowledge, but the limits of routinised knowledge and practice when applied to patient care. HPM clinicians, typically at the request of other clinicians, reorient decision-making around normative concerns-what ought to be done-rather than relying on descriptive clinical facts. This approach departs from dominant medical models that privilege impartial, fact-based reasoning. Using interviews with clinicians in the United States and ethnographic observations at a large teaching hospital, this paper shows that HPM's distinctive role at the end of life, foregrounding patient preferences, creating shared understanding and establishing achievable goals, derives not from clinician virtues or failures but from this speciality's structural niche in the division of medical labour. (© 2026 Foundation for the Sociology of Health & Illness.)
References:	Abbott, A. 1988. The System of Professions: An Essay on the Division of Expert Labor. University of Chicago Press. Abbott, A. 2004. Methods of Discovery: Heuristics for the Social Sciences, Contemporary Societies. W.W. Norton & Co. Abbott, A. 2014. “The Problem of Excess.” Sociological Theory 32: 1–26. https://doi.org/10.1177/0735275114523419. Adelson, K., J. Paris, J. R. Horton, et al. 2017. “Standardized Criteria for Palliative Care Consultation on a Solid Tumor Oncology Service Reduces Downstream Health Care Use.” Journal of Oncology Practice 13, no. 5: e431–e440. https://doi.org/10.1200/JOP.2016.016808. Agrawal, N. 2025. Why Are More Young People Getting Cancer? New York Times. Barnato, A. E. 2017. “Challenges in Understanding and Respecting Patients’ Preferences.” Health Affairs 36, no. 7: 1252–1257. https://doi.org/10.1377/hlthaff.2017.0177. Baxter, R., S. Pusa, S. Andersson, E. K. Fromme, J. Paladino, and A. Sandgren. 2024. “Core Elements of Serious Illness Conversations: An Integrative Systematic Review.” BMJ Supportive & Palliative Care 14, no. e3: e2268–e2279. https://doi.org/10.1136/spcare‐2023‐004163. Bazargan, M., and S. Bazargan‐Hejazi. 2021. “Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non‐Hispanic Blacks: A Scoping Review of Recent Literature.” American Journal of Hospice and Palliative Medicine® 38, no. 6: 688–718. https://doi.org/10.1177/1049909120966585. Birkmeyer, J. D., B. N. Reames, P. McCulloch, A. J. Carr, W. B. Campbell, and J. E. Wennberg. 2013. “Understanding of Regional Variation in the Use of Surgery.” Lancet 382, no. 9898: 1121–1129. https://doi.org/10.1016/S0140‐6736(13)61215‐5. Bonney, A., K. Togawa, M. Ng, et al. 2023. “Prevalence of Subclinical Lung Cancer Detected at Autopsy: A Systematic Review.” BMC Cancer 23, no. 1: 794. https://doi.org/10.1186/s12885‐023‐11224‐3. Borgstrom, E. 2015. “Planning for an (Un)Certain Future: Choice Within English End‐of‐Life Care.” Current Sociology 63, no. 5: 700–713. https://doi.org/10.1177/0011392115590084. Broom, A., K. Kenny, N. Ehlers, H. Byrne, and P. Good. 2025. “Tensions of Time at the End (Of Life).” Social Science & Medicine 372: 117995. https://doi.org/10.1016/j.socscimed.2025.117995. Broom, A., E. Kirby, P. Good, J. Wootton, and J. Adams. 2013. “The Art of Letting Go: Referral to Palliative Care and Its Discontents.” Social Science & Medicine 78: 9–16. https://doi.org/10.1016/j.socscimed.2012.11.008. Broom, A., E. Kirby, P. Good, J. Wootton, P. Yates, and J. Hardy. 2015. “Negotiating Futility, Managing Emotions: Nursing the Transition to Palliative Care.” Qualitative Health Research 25, no. 3: 299–309. https://doi.org/10.1177/1049732314553123. Cain, C. L. 2019. “Agency and Change in Healthcare Organizations: Workers’ Attempts to Navigate Multiple Logics in Hospice Care.” Journal of Health and Social Behavior 60, no. 1: 3–17. https://doi.org/10.1177/0022146518825379. Charles, C., A. Gafni, and T. Whelan. 1999. “Decision‐Making in the Physician–Patient Encounter: Revisiting the Shared Treatment Decision‐Making Model.” Social Science & Medicine 49, no. 5: 651–661. https://doi.org/10.1016/S0277‐9536(99)00145‐8. Clark, D. 2002. “Between Hope and Acceptance: The Medicalisation of Dying.” BMJ 324, no. 7342: 905–907. https://doi.org/10.1136/bmj.324.7342.905. Clark, D. 2016. “To Comfort Always: A History of Palliative Medicine Since the Nineteenth Century.” In Oxford Medical Histories Series. 1st ed. Oxford University Press. Damhus, C. S., M. B. Risør, J. B. Brodersen, and A. B. R. Jønsson. 2025. “Rethinking the Logic of Early Diagnosis in Cancer.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 29, no. 1: 3–22. https://doi.org/10.1177/13634593241234481. Elwyn, G., D. Frosch, R. Thomson, et al. 2012. “Shared Decision Making: A Model for Clinical Practice.” Journal of General Internal Medicine 27, no. 10: 1361–1367. https://doi.org/10.1007/s11606‐012‐2077‐6. Emanuel, L., K. O. Brenner, N. Spira, et al. 2020. “Therapeutic Holding.” Journal of Palliative Medicine 23, no. 3: 314–318. https://doi.org/10.1089/jpm.2019.0543. Ferrer, R. A., L. Padgett, and E. M. Ellis. 2016. “Extending Emotion and Decision‐Making Beyond the Laboratory: The Promise of Palliative Care Contexts.” Emotion 16, no. 5: 581–586. https://doi.org/10.1037/emo0000175. Field, M. J., and C. K. Cassel, Institute of Medicine (U.S.), eds. 1997. Approaching Death: Improving Care at the End of Life. National Academy Press. Finucane, A. M., C. Swenson, J. I. MacArtney, et al. 2021. “What Makes Palliative Care Needs ‘Complex’? A Multisite Sequential Explanatory Mixed Methods Study of Patients Referred for Specialist Palliative Care.” BMC Palliative Care 20, no. 1: 18. https://doi.org/10.1186/s12904‐020‐00700‐3. Fisher, E. S., D. E. Wennberg, T. A. Stukel, D. J. Gottlieb, F. L. Lucas, and É.L. Pinder. 2003. “The Implications of Regional Variations in Medicare Spending. Part 1: The Content, Quality, and Accessibility of Care.” Annals of Internal Medicine 138, no. 4: 273–287. https://doi.org/10.7326/0003‐4819‐138‐4‐200302180‐00006. Fox, R. G. 1957. “Training for Uncertainty.” in Introductory Studies in the Sociology of Medical Education, edited by, Merton, R. K., Reader, G. G., Kendall, P. Harvard University Press, 207–242. https://doi.org/10.4159/harvard.9780674366831.c13. Gengler, A. M. 2020. ‘Save My Kid’: How Families of Critically Ill Children Cope, Hope, and Negotiate an Unequal Healthcare System. New York University Press. Gerrity, M. S., R. F. DeVellis, and D. W. Light. 1992. “Uncertainty and Professional Work: Perceptions of Physicians in Clinical Practice.” American Journal of Sociology 97, no. 4: 1022–1051. https://doi.org/10.1086/229860. Han, P. K. J., T. D. Strout, C. Gutheil, et al. 2021. “How Physicians Manage Medical Uncertainty: A Qualitative Study and Conceptual Taxonomy.” Medical Decision Making 41, no. 3: 275–291. https://doi.org/10.1177/0272989X21992340. Hanemaayer, A. 2019. The Impossible Clinic: A Critical Sociology of Evidence‐Based Medicine. UBC press. Harach, H. R., K. O. Franssila, and V.‐M. Wasenius. 1985. “Occult Papillary Carcinoma of the Thyroid. A ‘Normal’ Finding in Finland. A Systematic Autopsy study.” Cancer 56, no. 3: 531–538. https://doi.org/10.1002/1097‐0142(19850801)56:3<531::AID‐CNCR2820560321>3.0.CO;2‐3. Hauschildt, K. E. 2024. “Whose Good Death? Valuation and Standardization as Mechanisms of Inequality in Hospitals.” Journal of Health and Social Behavior 65, no. 2: 221–236. https://doi.org/10.1177/00221465221143088. Institute of Medicine (U.S.). 2015. Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life. National Academies Press. Kaufman, S. R. 2006. And a Time to Die: How American Hospitals Shape the End of Life. University of Chicago Press. Kavalieratos, D., J. Corbelli, D. Zhang, et al. 2016. “Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta‐Analysis.” JAMA 316, no. 20: 2104. https://doi.org/10.1001/jama.2016.16840. Kellogg, K. C. 2014. “Brokerage Professions and Implementing Reform in an Age of Experts.” American Sociological Review 79, no. 5: 912–941. https://doi.org/10.1177/0003122414544734. Khayal, I. S., and A. E. Barnato. 2022. “What Is in the Palliative Care ‘Syringe’? A Systems Perspective.” Social Science & Medicine 305: 115069. https://doi.org/10.1016/j.socscimed.2022.115069. Lamont, M., and A. Swidler. 2014. “Methodological Pluralism and the Possibilities and Limits of Interviewing.” Qualitative Sociology 37, no. 2: 153–171. https://doi.org/10.1007/s11133‐014‐9274‐z. LeClair, K., K. J. L. Bell, L. Furuya‐Kanamori, S. A. Doi, D. O. Francis, and L. Davies. 2021. “Evaluation of Gender Inequity in Thyroid Cancer Diagnosis: Differences by Sex in US Thyroid Cancer Incidence Compared With a Meta‐Analysis of Subclinical Thyroid Cancer Rates at Autopsy.” JAMA Internal Medicine 181, no. 10: 1351. https://doi.org/10.1001/jamainternmed.2021.4804. Light, D. 1979. “Uncertainty and Control in Professional Training.” Journal of Health and Social Behavior 20, no. 4: 310. https://doi.org/10.2307/2955407. Livne, R. 2019. Values at the End of Life: The Logic of Palliative Care. Harvard University Press. Livne, R. 2021. “Toward a Sociology of Finitude: Life, Death, and the Question of Limits.” Theory and Society 50, no. 6: 891–934. https://doi.org/10.1007/s11186‐021‐09448‐y. MacArtney, J. I., A. Broom, E. Kirby, P. Good, and J. Wootton. 2017. “The Liminal and the Parallax: Living and Dying at the End of Life.” Qualitative Health Research 27, no. 5: 623–633. https://doi.org/10.1177/1049732315618938. MacArtney, J. I., A. Broom, E. Kirby, P. Good, J. Wootton, and J. Adams. 2016. “Locating Care at the End of Life: Burden, Vulnerability, and the Practical Accomplishment of Dying.” Sociology of Health & Illness 38, no. 3: 479–492. https://doi.org/10.1111/1467‐9566.12375. MacIntyre, A. C. 1959. “Hume on ‘Is’ and ‘Ought’.” Philosophical Review 68, no. 4: 451. https://doi.org/10.2307/2182491. Moeller, J. R., T. H. Albanese, K. Garchar, J. M. Aultman, S. Radwany, and D. Frate. 2012. “Functions and Outcomes of a Clinical Medical Ethics Committee: A Review of 100 Consults.” HEC Forum 24, no. 2: 99–114. https://doi.org/10.1007/s10730‐011‐9170‐9. Nettleton, S., J. Kitzinger, and C. Kitzinger. 2014. “A Diagnostic Illusory? the Case of Distinguishing Between ‘Vegetative’ and ‘Minimally Conscious’ States.” Social Science & Medicine 116: 134–141. https://doi.org/10.1016/j.socscimed.2014.06.036. Oh, H. 2014. “Hospital Consultations and Jurisdiction Over Patients: Consequences for the Medical Profession.” Sociology of Health & Illness 36, no. 4: 580–595. https://doi.org/10.1111/1467‐9566.12087. Oh, H. 2017. “Resisting Throughput Pressures: Physicians’ and Patients’ Strategies to Manage Hospital Discharge.” Journal of Health and Social Behavior 58, no. 1: 116–130. https://doi.org/10.1177/0022146517691090. Pickersgill, M. 2020. “Uncertainty Work as Ontological Negotiation: Adjudicating Access to Therapy in Clinical Psychology.” Supplement, Sociology of Health & Illness 42, no. S1: 84–98. https://doi.org/10.1111/1467‐9566.13029. Pugh, A. J. 2013. “What Good Are Interviews for Thinking About Culture? Demystifying Interpretive Analysis.” American Journal of Cultural Sociology 1: 42–68. https://doi.org/10.1057/ajcs.2012.4. Quill, T. E., and H. Brody. 1996. “Physician Recommendations and Patient Autonomy: Finding a Balance Between Physician Power and Patient Choice.” Annals of Internal Medicine 125, no. 9: 763–769. https://doi.org/10.7326/0003‐4819‐125‐9‐199611010‐00010. Rance, S., D. Westlake, H. Brant, et al. 2020. “Admission Decision‐Making in Hospital Emergency Departments: The Role of the Accompanying Person.” Global Qualitative Nursing Research 7: 233339362093002. https://doi.org/10.1177/2333393620930024. Rosenberg, C. E. 1995. The Care of Strangers: The Rise of America’s Hospital System, Johns Hopkins Paperbacks. Johns Hopkins University Press. Sandman, L., and C. Munthe. 2009. “Shared Decision‐Making and Patient Autonomy.” Theoretical Medicine and Bioethics 30, no. 4: 289–310. https://doi.org/10.1007/s11017‐009‐9114‐4. Schenker, Y., W. E. Rosa, and R. M. Arnold. 2024. “Palliative Care Consults for Clinician Distress: Part of the Job?” Journal of Pain and Symptom Management 68, no. 6: 641–646. https://doi.org/10.1016/j.jpainsymman.2024.08.032. Searle, J. R. 1964. “How to Derive ‘Ought’ From ‘Is’.” Philosophical Review 73, no. 1: 43. https://doi.org/10.2307/2183201. Serious‐Illness‐Conversation‐Guide. 2023. Ariadne Labs. Shapiro, S. P. 2019. “Speaking for the Dying: Life‐And‐Death Decisions in Intensive Care.” In Chicago Series in Law and Society. University of Chicago Press. Siegler, M. 1985. “The Progression of Medicine: From Physician Paternalism to Patient Autonomy to Bureaucratic Parsimony.” Archives of Internal Medicine 145, no. 4: 713. https://doi.org/10.1001/archinte.1985.00360040147031. Stichweh, R. 1997. “Professions in Modern Society.” International Review of Sociology 7, no. 1: 95–102. https://doi.org/10.1080/03906701.1997.9971225. Tate, A. 2022. “Death and the Treatment Imperative: Decision‐Making in Late‐Stage Cancer.” Social Science & Medicine 306: 115129. https://doi.org/10.1016/j.socscimed.2022.115129. Tate, A., and K. L. Spencer. 2023. “High‐Stakes Treatment Negotiations Gone Awry: The Importance of Interactions for Understanding Treatment Advocacy and Patient Resistance.” Journal of Health and Social Behavior 65, no. 2: 237–255. https://doi.org/10.1177/00221465231204354. Tavory, I., and S. Timmermans. 2014. Abductive Analysis: Theorizing Qualitative Research. University of Chicago Press. Temel, J. S., J. A. Greer, A. El‐Jawahri, et al. 2017. “Effects of Early Integrated Palliative Care in Patients With Lung and GI Cancer: A Randomized Clinical Trial.” Journal of Clinical Oncology 35, no. 8: 834–841. https://doi.org/10.1200/JCO.2016.70.5046. Temel, J. S., J. A. Greer, A. Muzikansky, et al. 2010. “Early Palliative Care for Patients With Metastatic Non–Small‐Cell Lung Cancer.” New England Journal of Medicine 363, no. 8: 733–742. https://doi.org/10.1056/NEJMoa1000678. Thomasma, D. C. 1983. “Beyond Medical Paternalism and Patient Autonomy: A Model of Physician Conscience for the Physician‐Patient Relationship.” Annals of Internal Medicine 98, no. 2: 243–248. https://doi.org/10.7326/0003‐4819‐98‐2‐243. Timmermans, S. 2020. “The Engaged Patient: The Relevance of Patient–Physician Communication for Twenty‐First‐Century Health.” Journal of Health and Social Behavior 61, no. 3: 259–273. https://doi.org/10.1177/0022146520943514. Timmermans, S., and M. Berg. 2010. The Gold Standard: The Challenge of Evidence‐Based Medicine. Temple University Press. Timmermans, S., A. Yang, M. Gardner, et al. 2018. “Does Patient‐Centered Care Change Genital Surgery Decisions? the Strategic Use of Clinical Uncertainty in Disorders of Sex Development Clinics.” Journal of Health and Social Behavior 59, no. 4: 520–535. https://doi.org/10.1177/0022146518802460. Toerien, M., M. Reuber, R. Shaw, and R. Duncan. 2018. “Generating the Perception of Choice: The Remarkable Malleability of Option‐Listing.” Sociology of Health & Illness 40, no. 7: 1250–1267. https://doi.org/10.1111/1467‐9566.12766. Welch, H. G., and W. C. Black. 2010. “Overdiagnosis in Cancer.” JNCI Journal of the National Cancer Institute 102, no. 9: 605–613. https://doi.org/10.1093/jnci/djq099. Wennberg, J., and A. Gittelsohn. 1973. “Small Area Variations in Health Care Delivery: A Population‐Based Health Information System Can Guide Planning and Regulatory Decision‐Making.” Science 182, no. 4117: 1102–1108. https://doi.org/10.1126/science.182.4117.1102. Zetka, J. R. Jr. 2011. “Establishing Specialty Jurisdictions in Medicine: The Case of American Obstetrics and Gynaecology: Jurisdiction in American Obstetrics and Gynaecology.” Sociology of Health & Illness 33, no. 6: 837–852. https://doi.org/10.1111/j.1467‐9566.2011.01341.x.
Entry Date(s):	Date Created: 20260511 Date Completed: 20260716 Latest Revision: 20260716
Update Code:	20260717
DOI:	10.1111/1467-9566.70197
PMID:	42109063
Βάση Δεδομένων:	MEDLINE

Περιγραφή
ISSN:	1467-9566
DOI:	10.1111/1467-9566.70197