Artificial nutrition and hydration for patients with advanced dementia: perspectives from medical practitioners in the Netherlands and Australia

Abstract

The appropriate use of artificial nutrition or hydration (ANH) for patients with advanced dementia continues to be a subject of debate. We investigated opinions of Dutch and Australian doctors about the use of ANH in patients with advanced dementia. We interviewed 15 Dutch doctors and 16 Australian doctors who care for patients with advanced dementia. We transcribed and analysed the interviews and held consensus meetings about the interpretation. We found that Dutch and Australian doctors use similar medical considerations when they decide about the use of ANH. In general, they are reluctant to start ANH. Disparities between the Dutch and Australian doctors are related to the process of decision-making: Dutch doctors seem to put more emphasis on a comprehensive assessment of the patient's actual situation, whereas Australian doctors are more inclined to use scientific evidence and advance directives. Furthermore, Dutch doctors take the primary responsibility themselves whereas Australian general practitioners seem to be more inclined to leave the decision to the family. It seems that Dutch and Australian doctors use somewhat different care approaches for patients with advanced dementia. Combining the Dutch comprehensive approach and the Australian analytic approach may serve the interest of patients and their families best.

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

“…Of the studies which inquired about advanced directives, almost none [42], [46], [74], [85], or very few patients had made them [41], [45], [52], [55], [59], [66], [78], [80], [86]. However, AHDs were perceived as influential, by clinicians and family members [70], [71], [81], [86]–[88]. Only a minority thought family wishes should override a patient’s advanced healthcare directives [54], [88].…”

“…However, family members were influential and often acted as surrogate decision-makers for informed consent [44], [65], [67], [74], [86], [91], despite the stress and anxiety this caused [43], [46], [48]. Decisions to forego tube feeding at the end of life were generally associated with greater family input into the decision-making process, particularly in Belgium [35], [36] and the Netherlands [52], [66].…”

Artificial nutrition and hydration

“…The Dutch physicians often take primary responsibility for providing artificial nutrition and hydration while the Australian doctors are more likely to let the patient's family make the decision. 3 Consequently, communication provided by healthcare providers about artificial nutrition/hydration is inconsistent which may cause confusion for patients and family members. Patients and family members are often not involved in the decision-making; and when involved, their decisions are influenced by their physicians' recommendations.…”

<br /><br /> ALIMENTAÇÃO ENTÉRICA NA PESSOA COM DEMÊNCIA: Efeitos, indicações e benefícios<br /> ENTERAL NUTRITION IN PERSON WITH DEMENTIA: Indication, effects and benefits

“…Com o progresso a doença, os pacientes tornam-se incapazes de tomar decisões, podendo surgir situações complexas com os médicos e famílias a terem de decidir se a alimentação e hidratação artificiais serão benéficas para a pessoa (18) . As situações de conflito podem ser evitadas se, ao longo da história da doença, o doente e os seus familiares, com a equipa mé-dica, discutirem o tema (19) .…”