Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study
ObjectiveTo describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact.Study designWe conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with experience...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-01-01
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| Series: | Frontiers in Pediatrics |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fped.2022.1049661/full |
| _version_ | 1797295119389425664 |
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| author | Daniel J. Benedetti Daniel J. Benedetti Catherine M. Hammack-Aviran Carolyn Diehl Laura M. Beskow |
| author_facet | Daniel J. Benedetti Daniel J. Benedetti Catherine M. Hammack-Aviran Carolyn Diehl Laura M. Beskow |
| author_sort | Daniel J. Benedetti |
| collection | DOAJ |
| description | ObjectiveTo describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact.Study designWe conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with experience caring for a pediatric patient who refused or abandoned curative treatment. Interviewees were recruited using convenience and nominated expert sampling, soliciting experiences from diverse geographic locations and institution sizes across the US. We analyzed transcripts using applied thematic analysis to identify and refine meaningful domains.ResultsMany oncologists reported multiple experiences with refusal and abandonment. Most anticipated case frequency would increase due to misinformation, particularly on the internet. Interviewees described cases of treatment refusal and abandonment, but also a wider variety of cases than previously described in existing publications, including cases involving: non-adherence; negotiations for different treatments; negotiations for complementary and alternative medicine; delayed treatment initiation; and refusal of a component of recommended therapy. Cases often involved multiple stages or types of conflicts. Recurring patient/family behaviors emerged: clear opposition to treatment from the outset; hesitancy about treatment despite initiating therapy; and psychosocial circumstances becoming an obstacle to treatment completion. Oncologists revealed substantial professional and personal repercussions of these cases.ConclusionOncologist interviews highlight a broad range of conflicts, yielding a taxonomy of treatment refusal, non-adherence and abandonment (TRNA) that accounts for the heterogeneity of situations described. Cases’ complexity and interrelatedness points to a functional model of TRNA that includes families’ behaviors. This preliminary taxonomy and model warrant further research and examination to refine the model and generate strategies to prevent and mitigate TRNA. |
| first_indexed | 2024-03-07T21:42:07Z |
| format | Article |
| id | doaj.art-04394cb540574f71aa7e13787a97d677 |
| institution | Directory Open Access Journal |
| issn | 2296-2360 |
| language | English |
| last_indexed | 2024-03-07T21:42:07Z |
| publishDate | 2023-01-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pediatrics |
| spelling | doaj.art-04394cb540574f71aa7e13787a97d6772024-02-26T04:51:44ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602023-01-011010.3389/fped.2022.10496611049661Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative studyDaniel J. Benedetti0Daniel J. Benedetti1Catherine M. Hammack-Aviran2Carolyn Diehl3Laura M. Beskow4Division of Hematology and Oncology, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, United StatesCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United StatesCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United StatesCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United StatesCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN, United StatesObjectiveTo describe United States (US) pediatric oncologists’ experiences with treatment refusal or abandonment, exploring types and frequency of decision-making conflicts, and their impact.Study designWe conducted exploratory qualitative interviews of pediatric oncologists (n = 30) with experience caring for a pediatric patient who refused or abandoned curative treatment. Interviewees were recruited using convenience and nominated expert sampling, soliciting experiences from diverse geographic locations and institution sizes across the US. We analyzed transcripts using applied thematic analysis to identify and refine meaningful domains.ResultsMany oncologists reported multiple experiences with refusal and abandonment. Most anticipated case frequency would increase due to misinformation, particularly on the internet. Interviewees described cases of treatment refusal and abandonment, but also a wider variety of cases than previously described in existing publications, including cases involving: non-adherence; negotiations for different treatments; negotiations for complementary and alternative medicine; delayed treatment initiation; and refusal of a component of recommended therapy. Cases often involved multiple stages or types of conflicts. Recurring patient/family behaviors emerged: clear opposition to treatment from the outset; hesitancy about treatment despite initiating therapy; and psychosocial circumstances becoming an obstacle to treatment completion. Oncologists revealed substantial professional and personal repercussions of these cases.ConclusionOncologist interviews highlight a broad range of conflicts, yielding a taxonomy of treatment refusal, non-adherence and abandonment (TRNA) that accounts for the heterogeneity of situations described. Cases’ complexity and interrelatedness points to a functional model of TRNA that includes families’ behaviors. This preliminary taxonomy and model warrant further research and examination to refine the model and generate strategies to prevent and mitigate TRNA.https://www.frontiersin.org/articles/10.3389/fped.2022.1049661/fullbioethicschildhood cancerabandonmentnon-adherencepediatric oncologyethics |
| spellingShingle | Daniel J. Benedetti Daniel J. Benedetti Catherine M. Hammack-Aviran Carolyn Diehl Laura M. Beskow Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study Frontiers in Pediatrics bioethics childhood cancer abandonment non-adherence pediatric oncology ethics |
| title | Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study |
| title_full | Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study |
| title_fullStr | Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study |
| title_full_unstemmed | Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study |
| title_short | Landscape of pediatric cancer treatment refusal and abandonment in the US: A qualitative study |
| title_sort | landscape of pediatric cancer treatment refusal and abandonment in the us a qualitative study |
| topic | bioethics childhood cancer abandonment non-adherence pediatric oncology ethics |
| url | https://www.frontiersin.org/articles/10.3389/fped.2022.1049661/full |
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