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Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems
  1. Joseph Dimech1,2,
  2. Emmanuel Agius3,4,
  3. Julian C Hughes5,6,
  4. Paul Bartolo7
  1. 1Government of Malta, Ministry for the Family and Social Solidarity, Valletta, Malta
  2. 2Barts and The London School of Medicine and Dentistry, QMUL, Malta Campus, Gozo, Malta
  3. 3Department of Moral Theology, University of Malta, Msida, Malta
  4. 4European Group of Ethics in Science and New Technologies, European Commission, Brussels, Belgium
  5. 5University of Bristol, Bristol, UK
  6. 6Policy, Ethics and Life Sciences Research Centre, Newcastle University, Newcastle upon Tyne, UK
  7. 7Department of Psychology, Faculty for Social Wellbeing, University of Malta, Msida, Malta
  1. Correspondence to Dr Joseph Dimech, Department of Gerontology and Dementia Studies, Faculty for Social Wellbeing, University of Malta, Msida MSD2080, Malta; dimechjoseph{at}gmail.com

Abstract

Background Decision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.

Aim This study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.

Method The study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.

Results Four themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.

Conclusion Decision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.

  • dementia
  • human dignity
  • end of life care
  • decision-making
  • deglutition disorders
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Footnotes

  • Contributors The corresponding author, JD, carried out the underlying research as part of his doctoral degree in the Department of Gerontology and Dementia Studies, Faculty for Social Wellbeing of the University of Malta. The three coauthors, namely EA, JCH and PB, were his doctoral supervisors. This paper was drafted by the first author with the collaboration of the other three authors. All authors read and approved the final version of the paper.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval All the methodology and findings included in this paper are derived from JD's doctoral research entitled 'Moral Reasoning in End of Life Clinical Decision Making for Persons in End Stage Dementia'. To this effect, approval from the Faculty for Social Wellbeing Research Ethics Committee Approval refers to the doctoral research title (Reference number: SWB 178/2016).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to this article are derived from JD's doctoral research titled 'Moral Reasoning in End of Life Clinical Decision Making for Persons in End Stage Dementia'. The thesis is openly available for viewing at the Melitensia Section of the University of Malta Library.

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