The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

Authors

  • A. Wagemans,

    Corresponding author
    1. Koraalgroep, Maasveld, Maastricht, The Netherlands
    2. Maastricht University Medical Centre, Governor Kremers Centre, Maastricht, The Netherlands
    3. Maastricht University Medical Centre, CAPHRI (School of Primary Care and Public Health/Department of General Practice), Maastricht, The Netherlands
    4. Department of Clinical Genetics, Maastricht University Medical Centre, The Netherlands
      Mrs Annemieke Wagemans, Koraalgroep, Maasveld, Maastricht, The Netherlands (e-mail: ama.wagemans@hag.unimaas.nl).
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  • H. van Schrojenstein Lantman-de Valk,

    1. Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
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  • I. Proot,

    1. Maastricht University Medical Centre, Governor Kremers Centre, Maastricht, The Netherlands
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  • J. Metsemakers,

    1. Maastricht University Medical Centre, CAPHRI (School of Primary Care and Public Health/Department of General Practice), Maastricht, The Netherlands
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  • I. Tuffrey-Wijne,

    1. Maastricht University Medical Centre, Governor Kremers Centre, Maastricht, The Netherlands
    2. St George's University of London, Division of Population Health Sciences and Education, London, UK
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  • L. Curfs

    1. Maastricht University Medical Centre, Governor Kremers Centre, Maastricht, The Netherlands
    2. Department of Clinical Genetics, Maastricht University Medical Centre, The Netherlands
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Mrs Annemieke Wagemans, Koraalgroep, Maasveld, Maastricht, The Netherlands (e-mail: ama.wagemans@hag.unimaas.nl).

Abstract

Background  The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians.

Methods  This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures.

Results  Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health.

Conclusions  In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process.

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