Literature DB >> 23264360

A plea for end-of-life discussions with patients suffering from Huntington's disease: the role of the physician.

Suzanne J Booij1, Dick P Engberts, Verena Rödig, Aad Tibben, Raymund A C Roos.   

Abstract

Euthanasia and physician-assisted suicide (PAS) by request and/or based on an advance directive are legal in The Netherlands under strict conditions, thus providing options for patients with Huntington's disease (HD) and other neurodegenerative diseases to stay in control and choose their end of life. HD is an inherited progressive disease characterised by chorea and hypokinesia, psychiatric symptoms and dementia. From a qualitative study based on interviews with 15 physicians experienced in treating HD, several ethical issues emerged. Consideration of these aspects leads to a discussion about the professional role of a physician in relation to the personal autonomy of a patient. Such a discussion can raise awareness that talking about end-of-life wishes with an HD patient is part of the legal, professional and moral responsibility of the physician, and that a letter of intent on behalf of the physician can improve active participation in the process. Discussion of these issues can help to advance the debate on euthanasia and PAS in HD and other neurodegenerative diseases.

Entities:  

Keywords:  Euthanasia; Living Wills/Advance Directives; Neuroethics

Mesh:

Year:  2012        PMID: 23264360     DOI: 10.1136/medethics-2011-100369

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  5 in total

1.  New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).

Authors:  N E Carlozzi; N R Downing; M K McCormack; S G Schilling; J S Perlmutter; E A Hahn; J S Lai; S Frank; K A Quaid; J S Paulsen; D Cella; S M Goodnight; J A Miner; M A Nance
Journal:  Qual Life Res       Date:  2016-07-08       Impact factor: 4.147

2.  A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

Authors:  Noelle E Carlozzi; E A Hahn; S A Frank; J S Perlmutter; N D Downing; M K McCormack; S Barton; M A Nance; S G Schilling
Journal:  J Neurol       Date:  2017-11-15       Impact factor: 4.849

3.  Thinking about the end of life: a common issue for patients with Huntington's disease.

Authors:  Suzanne J Booij; Aad Tibben; Dick P Engberts; Johan Marinus; Raymund A C Roos
Journal:  J Neurol       Date:  2014-09-02       Impact factor: 4.849

4.  How to report professional practice in nursing? A scoping review.

Authors:  Marie-Eve Poitras; Maud-Christine Chouinard; Martin Fortin; Frances Gallagher
Journal:  BMC Nurs       Date:  2016-05-25

Review 5.  Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies.

Authors:  Angela Jjm Keijzer-van Laarhoven; Dorothea P Touwen; Bram Tilburgs; Madelon van Tilborg-den Boeft; Claudia Pees; Wilco P Achterberg; Jenny T van der Steen
Journal:  BMJ Open       Date:  2020-11-12       Impact factor: 2.692

  5 in total

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