The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study.
Doctors often let relatives and staff steer end-of-life choices for adults with ID, so BCBAs must record and share each client’s own preferences early.
01Research in Context
What this study did
Researchers talked with Dutch doctors who care for adults with intellectual disabilities. They asked how the doctors decide when to stop life-saving treatment.
The team recorded and studied the doctors' own words. They wanted to see whose views shape the final choice.
What they found
Doctors said they rarely rely on their own medical judgment alone. Instead, they follow the wishes of family and long-time staff.
Workplace ties also matter. Doctors worry about upsetting colleagues if they push a different plan.
How this fits with other research
Bouck et al. (2016) later showed the same Dutch doctors often spot dying only in the final week. They wait for clear behavioral and physical cues, not just lab numbers. This extends Fahmie et al. (2013): once relatives signal comfort with letting go, doctors switch from curing to caring.
Heald et al. (2020) found older cancer patients with ID receive far fewer specialist visits than other patients. The pattern matches: families and staff steer care toward home, and doctors follow. Together the studies show quiet service gaps, not loud bias.
Rojahn et al. (2012) reveal that many adults with ID themselves have only partial understanding of death. This creates an ethical tension: doctors defer to families because they assume the patient cannot grasp the choice, yet the patient may still hold preferences. A human-rights lens, as urged by Tavassoli et al. (2012), would push teams to uncover and honor those preferences rather than skip them.
Why it matters
If you serve adults with ID, expect life-or-death choices to hinge on family and staff voices. Build a clear plan now: document the client’s known likes, dislikes, and comfort signals. Share this sheet with doctors before crisis hits. You give the patient a seat at the table that the medical note alone may not provide.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01550.x