‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication
Abstract Background Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is know...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2022-08-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13490 |
| _version_ | 1811312706942140416 |
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| author | Stephen L. Brown Peter L. Fisher Andrew Morgan Cari Davies Yasmin Olabi Laura Hope‐Stone Heinrich Heimann Rumana Hussain Mary Gemma Cherry |
| author_facet | Stephen L. Brown Peter L. Fisher Andrew Morgan Cari Davies Yasmin Olabi Laura Hope‐Stone Heinrich Heimann Rumana Hussain Mary Gemma Cherry |
| author_sort | Stephen L. Brown |
| collection | DOAJ |
| description | Abstract Background Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a ‘well‐considered’ decision. Methods UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of ‘well‐considered’ decision‐making, where ‘well‐considered’ decisions involve consideration of all likely outcomes. Results Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. Conclusions While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as ‘well‐considered’. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. Patient or Public Contribution This paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come. |
| first_indexed | 2024-04-13T10:40:18Z |
| format | Article |
| id | doaj.art-693b6478950741948fee9f150235deb8 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-04-13T10:40:18Z |
| publishDate | 2022-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-693b6478950741948fee9f150235deb82022-12-22T02:49:56ZengWileyHealth Expectations1369-65131369-76252022-08-012541498150710.1111/hex.13490‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognosticationStephen L. Brown0Peter L. Fisher1Andrew Morgan2Cari Davies3Yasmin Olabi4Laura Hope‐Stone5Heinrich Heimann6Rumana Hussain7Mary Gemma Cherry8School of Psychology University of Plymouth Plymouth UKDepartment of Psychological Sciences University of Liverpool Liverpool UKDepartment of Psychological Sciences University of Liverpool Liverpool UKDepartment of Psychological Sciences University of Liverpool Liverpool UKDepartment of Psychological Sciences University of Liverpool Liverpool UKSchool of Psychology University of Plymouth Plymouth UKDepartment of Psychological Sciences University of Liverpool Liverpool UKDepartment of Psychological Sciences University of Liverpool Liverpool UKSchool of Psychology University of Plymouth Plymouth UKAbstract Background Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a ‘well‐considered’ decision. Methods UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of ‘well‐considered’ decision‐making, where ‘well‐considered’ decisions involve consideration of all likely outcomes. Results Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. Conclusions While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as ‘well‐considered’. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. Patient or Public Contribution This paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come.https://doi.org/10.1111/hex.13490medical ethicspatient decision‐makingprognosticationqualitativeuveal melanoma |
| spellingShingle | Stephen L. Brown Peter L. Fisher Andrew Morgan Cari Davies Yasmin Olabi Laura Hope‐Stone Heinrich Heimann Rumana Hussain Mary Gemma Cherry ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication Health Expectations medical ethics patient decision‐making prognostication qualitative uveal melanoma |
| title | ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication |
| title_full | ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication |
| title_fullStr | ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication |
| title_full_unstemmed | ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication |
| title_short | ‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication |
| title_sort | i don t like uncertainty i like to know how and why uveal melanoma patients consent to life expectancy prognostication |
| topic | medical ethics patient decision‐making prognostication qualitative uveal melanoma |
| url | https://doi.org/10.1111/hex.13490 |
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