‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis
<p><strong>Background</strong></p> The rate of tracheostomy with invasive ventilation (TIV) for patients with Amyotrophic Lateral Sclerosis (ALS) varies widely. Previous studies have shown that doctors' values may affect decisionmaking. There have been no previous inter...
| Main Authors: | , |
|---|---|
| Format: | Journal article |
| Language: | English |
| Published: |
Taylor & Francis
2025
|
| _version_ | 1824459299048390656 |
|---|---|
| author | Ozeki-Hayashi, R Wilkinson, D |
| author_facet | Ozeki-Hayashi, R Wilkinson, D |
| author_sort | Ozeki-Hayashi, R |
| collection | OXFORD |
| description | <p><strong>Background</strong></p>
The rate of tracheostomy with invasive ventilation (TIV) for patients
with Amyotrophic Lateral Sclerosis (ALS) varies widely. Previous
studies have shown that doctors' values may affect decisionmaking. There have been no previous international qualitative
comparisons of medical decision-making process for TIV or why
practice varies.
<p><strong>Methods</strong></p>
We conducted semi-structured in-depth interviews with 16 doctors
actively involved in the management of ALS patients from Japan
(n=7), the UK (n=5), and the US (n=4). We used three hypothetical
cases to explore decision-making. Conversations were transcribed
and thematically analyzed.
<p><strong>Results</strong></p>
Our data reveals similarities but also marked differences in views
between the US, the UK and Japan. Almost all participants stated
that they ought to respect patient autonomy. However, their
approaches varied. British participants wanted to (and felt that they
should) respect patient autonomy, but they also believed that TIV
was not a realistic option. US participants were likely to prioritize
patient autonomy over other ethical principles, and Japanese
participants were likely to limit patient autonomy indirectly. The
option of TIV appeared to be heavily influenced by the availability of
healthcare resources in all three countries. The high cost and
limited availability of treatment and difficulty meant that particularly
in the UK and the US, it is challenging to receive TIV even if
patients wanted this.
<p><strong>
Conclusions</strong></p>
Our study illustrates how the emphasis on autonomy varies along
with variations in the way care is organized in the setting of highly
resource intensive treatment and progressive severe disabling
illness. There is a need to review elements of the decision-making
process in all three countries. This includes the need for
transparent, ideally centralized, decision-making guidelines about
the provision of TIV. Although we investigated a rare
neuromuscular disease, our results will be relevant to other
diseases requiring highly resource-intensive treatment towards the
end of life.
|
| first_indexed | 2025-02-19T04:39:34Z |
| format | Journal article |
| id | oxford-uuid:6be2d289-5413-48fd-99cc-d6c8b23dd507 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2025-02-19T04:39:34Z |
| publishDate | 2025 |
| publisher | Taylor & Francis |
| record_format | dspace |
| spelling | oxford-uuid:6be2d289-5413-48fd-99cc-d6c8b23dd5072025-02-17T12:09:50Z‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosisJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:6be2d289-5413-48fd-99cc-d6c8b23dd507EnglishSymplectic ElementsTaylor & Francis2025Ozeki-Hayashi, RWilkinson, D<p><strong>Background</strong></p> The rate of tracheostomy with invasive ventilation (TIV) for patients with Amyotrophic Lateral Sclerosis (ALS) varies widely. Previous studies have shown that doctors' values may affect decisionmaking. There have been no previous international qualitative comparisons of medical decision-making process for TIV or why practice varies. <p><strong>Methods</strong></p> We conducted semi-structured in-depth interviews with 16 doctors actively involved in the management of ALS patients from Japan (n=7), the UK (n=5), and the US (n=4). We used three hypothetical cases to explore decision-making. Conversations were transcribed and thematically analyzed. <p><strong>Results</strong></p> Our data reveals similarities but also marked differences in views between the US, the UK and Japan. Almost all participants stated that they ought to respect patient autonomy. However, their approaches varied. British participants wanted to (and felt that they should) respect patient autonomy, but they also believed that TIV was not a realistic option. US participants were likely to prioritize patient autonomy over other ethical principles, and Japanese participants were likely to limit patient autonomy indirectly. The option of TIV appeared to be heavily influenced by the availability of healthcare resources in all three countries. The high cost and limited availability of treatment and difficulty meant that particularly in the UK and the US, it is challenging to receive TIV even if patients wanted this. <p><strong> Conclusions</strong></p> Our study illustrates how the emphasis on autonomy varies along with variations in the way care is organized in the setting of highly resource intensive treatment and progressive severe disabling illness. There is a need to review elements of the decision-making process in all three countries. This includes the need for transparent, ideally centralized, decision-making guidelines about the provision of TIV. Although we investigated a rare neuromuscular disease, our results will be relevant to other diseases requiring highly resource-intensive treatment towards the end of life. |
| spellingShingle | Ozeki-Hayashi, R Wilkinson, D ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title | ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title_full | ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title_fullStr | ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title_full_unstemmed | ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title_short | ‘An unimaginable challenge’: a cross-cultural qualitative study of ethics and decision-making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| title_sort | an unimaginable challenge a cross cultural qualitative study of ethics and decision making around tracheostomy ventilation in patients with amyotrophic lateral sclerosis |
| work_keys_str_mv | AT ozekihayashir anunimaginablechallengeacrossculturalqualitativestudyofethicsanddecisionmakingaroundtracheostomyventilationinpatientswithamyotrophiclateralsclerosis AT wilkinsond anunimaginablechallengeacrossculturalqualitativestudyofethicsanddecisionmakingaroundtracheostomyventilationinpatientswithamyotrophiclateralsclerosis |