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  5. Subproject: The moral position of family in end of life care for people with dementia

Moral Compass Project

How do we know what the Good is? Is there such a thing as a ‘moral compass’ that all people share? The needle of a compass points to the north pole, but you can't reach the pole with it. Can the Good also be seen as such a pole? As something that speaks to us 'from the outside,' inescapably? The Good appeals to us in a way that gives us direction and encourages us to take concrete action. But that does not imply we are able to fully know or do the Good.

Subproject: The moral position of family in end of life care for people with dementia

Family in care in dementia

This subproject investigates the specific character of family relationships in the care of people with dementia at the end of life. Special attention is given to people with dementia and a desire for euthanasia because that is where moral complexity comes into focus. This is due to the progressive cognitive impairment and impaired mental competence that are more prevalent in dementia than in other diseases. As a result, family often becomes more intensely involved in the disease process. The question arises whether family members can also be interpreters of what the persons with dementia can no longer say or think for themselves. And conversely, people with dementia wonder if they can put the burden of this particular care on their family or partner. The euthanasia wish often appears to be motivated in people with dementia by a desire to remove the burden of care from their loved ones. Family, on the contrary, accepts this care with great self-evidence, even when it comes to articulating the euthanasia wish. These two forms of moral self-evidence (wanting to remove the burden of care and wanting to give care) are examined in this project as examples of the inescapable appeal of the Good. This Good is experienced as shared on the one hand, but on the other hand leads to seemingly opposite actions: wanting to end life or, on the contrary, wanting to support life.

Family in euthanasia law

In current Dutch euthanasia legislation, however, family has no formal position. Rather, family is seen as ‘suspect,’ because of a perceived risk of influence. This is partly due to the dominant medical and legal perception of individual autonomy underlying the legislation. This subproject conducts empirical research among people with dementia, their family members and physicians who treat them. This research has been done very little. The goal is to analyse the specific moral complexities of family relationships at the end of life of people with dementia and a desire for euthanasia. On this basis, it is possible to explore how this complexity can be taken into account in policy and legislation.

Researchers

Key publications

  • Scheeres-Feitsma T.M., Keijzer-van Laarhoven A., de Vries R., Schaafsma E.P., van der Steen J.T., (2023) Family involvement in euthanasia or Physician-Assisted Suicide and dementia: A systematic review, Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. DOI: 10.1002/alz.13094 
  • Van der Steen J.T., Scheeres-Feitsma T.M., Schaafsma P., (2024) Commentary on: Timely dying, suffering in dementia and the advocate role of family and professional caregivers preventing it, Alzheimer & Dementia: Assessment & Disease monitoring. DOI: 10.1002/dad2.12536 
  • Scheeres-Feitsma T.M., Schaafsma P., van der Steen J.T., van Delden H., (2024) Commentary: can an effective end-of-life intervention for advanced dementia be viewed as moral?, Alzheimer & Dementia: Assessment & Disease monitoring. DOI: 10.1002/dad2.12531 
  • Scheeres-Feitsma, T., Steen, van der, J. T., & Schaafsma, P. (2024). A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families. Death Studies. https://doi.org/10.1080/07481187.2024.2376819  

Further discussion?

Does this topic appeal to you and would you like to discuss it in a group, for example through a lecture? Then invite one of the researchers to your discussion group, organisation or church for talks, interviews, advice or other contributions in the areas of family responsibility, dementia, end-of-life care, euthanasia, moral deliberation and discussion and medical ethics.