What end of life care do we want to give to persons with end-stage dementia?

By Joseph Dimech, Emmanuel Agius, Julian C Hughes and Paul Bartolo.

Dementia is a degenerative neurocognitive disorder that leads to a high level of physical and cognitive disability as the disease progresses to its end-stage. Such patients are also at high risk of suffering from co-morbidities, including aspiration pneumonia secondary to swallowing difficulties. Thus, such patients end up in a state of severe frailty and at increased danger of a shortened life-span.

The advent of severe life-threatening swallowing difficulties creates great concern in clinicians and family members alike, where the decisional dilemma is whether or not one should commence tube feeding in end-stage dementia. In practice, feeding and drinking have strong emotional meaning that are influenced by personal values and are often subject to cultural norms.

Being mainly a Catholic country, care of the aged in Malta is highly influenced by care strategies that give value to life. Hence, requests for tube feeding in patients with end-stage dementia swallowing difficulties are not uncommon. At the same time, many Maltese clinicians and relatives do appreciate that persons in end-stage dementia have a poor quality of life and are close to dying. Consequently, all involved find solace in the promotion of comfort oral feeding and avoidance of futile burdensome treatment, such as tube feeding.

What makes care in such patients characteristically complex is that patients with end-stage dementia lack the mental capacity to make decisions about their own health. This seriously challenges the ability of patients to maintain autonomous control of their welfare and care. What is particularly relevant for Malta is that it still lacks a National End of Life Care Policy, which could regulate advance directives and withdrawal of futile treatment in dying patients. The lack of such a regulatory medico-legal framework potentially places such patients in end-stage dementia at risk of over- or under-treatment in their dying phase of life, whilst also leaving such persons exposed to the implementation of management strategies at variance to their own.

Our study aimed to understand the challenges faced by patients, relatives and clinicians in decision-making to manage swallowing difficulties in end-stage dementia in a long-term institution in Malta. To this end, we shed light on how clinicians and relatives respond to decision-making in end-stage dementia, and if and how such decisions might impact the human dignity of these vulnerable older people.

 

Paper title: Challenges faced by patients, relatives, and clinicians in end-stage dementia decision-making: a qualitative study of swallowing disorders

Authors: Joseph Dimech1, Emmanuel Agius2, Julian C. Hughes3, Paul Bartolo4

Affiliations:

  1. Government of Malta, Ministry for the Family and Social Solidarity, Consultant Geriatrician, Valletta, Malta; Barts and The London School of Medicine and Dentistry, Associate Dean, Malta Campus, Gozo, Malta.
  2. University of Malta, Professor of Philosophical and Christian Ethics, Msida, Malta; European Commission, Member of the European Group of Ethics in Science and New Technologies, Brussels, Belgium.
  3. University of Bristol, Honorary Professor, Bristol, United Kingdom; Newcastle University, Visiting Professor Policy, Ethics and Life Sciences Research Centre, Newcastle upon Tyne, United Kingdom.
  4. University of Malta, Associate Professor, Department of Psychology, Faculty for Social Wellbeing, Msida, Malta.

Competing interests:  The authors have no conflicts of interest

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