Universal Advance Directives—Necessary but Not Sufficient

Block, Brian L.; Smith, Alexander K.; Sudore, Rebecca L.

doi:10.1177/1073110518822000

Cited by 3 publications

(2 citation statements)

References 5 publications

(6 reference statements)

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“…Under certain circumstances, individuals can also make decisions to decline but not demand treatment. This is referred to as an Advance Decision to Refuse Treatment or ADRT referred to as an advanced directive in other countries [ 18 – 20 ].…”

Section: Introductionmentioning

confidence: 99%

“I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

et al. 2022

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Background Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. Aim To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. Methods We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. Results Participants’ narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals’ accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. Conclusion These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

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Section: Introductionmentioning

confidence: 99%

“I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

et al. 2022

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Section: Introductionmentioning

confidence: 99%

“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

Koffman

Penfold

Farsides

et al. 2022

Preprint

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Background Little is known about how people with multiple sclerosis and their families comprehend advance care planning (ACP) and its relevance in their lives. Aim To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP Methods We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. Results Participants’ narratives focused on three major themes:(i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate discussions. Some shared concerns of a lack of confidence when having ACP discussions. Conclusion These findings support the need for a whole systems strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

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Role of ruler or intruder? Patient’s right to autonomy in the age of innovation and technologies

Žaliauskaitė

2020

AI & Soc

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Universal Advance Directives—Necessary but Not Sufficient

Cited by 3 publications

References 5 publications

“I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

“I wanna live and not think about the future” what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

Role of ruler or intruder? Patient’s right to autonomy in the age of innovation and technologies

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