Continuous Deep Sedation until Death in Neonates and Infants in Flanders: A Post-Mortem Survey

<b><i>Background:</i></b> The use of analgesics and sedatives to alleviate pain and discomfort is common in end-of-life care in neonates and infants. However, to what extent those drugs are used in that context with the specific aim of bringing the infant in a state of continuous deep sedation (CDS) is currently unknown. <b><i>Methods:</i></b> We performed a nationwide mortality follow-back survey based on all deaths under the age of 1 over a period of 16 months in Flanders, Belgium. Data on CDS were linked to sociodemographic information from death certificates. Physicians completed an anonymous questionnaire. Questions measured whether CDS preceded death, and which clinical characteristics were associated with the sedation (e.g., type of drugs used and the duration of sedation). <b><i>Results:</i></b> The response rate was 83% (229/276). In 39% of all deceased neonates and infants, death was preceded by CDS. Physicians used a combination of morphine and benzodiazepines in 53%, or morphine alone in 45% of all sedation cases in order to continuously and deeply sedate the infant. In 89% of cases, death occurred within 1 week after sedation was begun, and in 92% of cases, artificial nutrition and hydration were administered until death. In 49% of cases there was no intention to hasten death, and in 40% of cases, the possibility of hastening was taken into account. <b><i>Conclusions:</i></b> CDS precedes about 2 in 5 neonatal and infant deaths. Guidelines for CDS in this age group are non-existent and it is unclear whether the same recommendations as in the adult population apply and can be considered a good practice.

Brain–Computer and Brain-to-Brain Interfaces for Communication

This chapter explores how a brain–computer interface (BCI) could allow some patients with locked-in syndrome, amyotrophic lateral sclerosis, or in the minimally conscious state to reliably communicate with others. BCI-mediated communication may enable these patients to clearly express their wishes when they cannot communicate because of motor impairment. Depending on their cognitive capacity for reasoning and decision-making, some patients could use a BCI to express their wishes about life-sustaining treatment and meet criteria of informed consent. Patients who could use a BCI to communicate could decide for themselves whether they want to continue or discontinue artificial nutrition and hydration, ventilation, or other life-sustaining interventions and act in their own best interests. The chapter also discusses how brain-to-brain interfaces may enable communication between brains and minds in a social network of collaborative problem-solving in visuomotor and cognitive tasks.

Withholding and withdrawing life-sustaining treatment (including artificial nutrition and hydration)

Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition. It includes cardiopulmonary resuscitation, mechanical ventilation, haemodialysis, left ventricular assist devices, antibiotics, and artificial nutrition and hydration. The appropriate use of life-sustaining treatment in seriously ill patients is a controversial topic that continues to generate intense debate among the public, as well as healthcare professionals, bioethicists, lawyers, governments, and religious institutions. This chapter offers a practical guide and sets out important questions clinicians ought to consider before making the decision to withhold or withdraw life-sustaining treatment.

Food as Love: Ethical and Moral Dilemmas in Withdrawal of Artificial Nutrition and Hydration in the Minimally Conscious State

Supportive Palliative Care and Hospice professionals frequently attend to Minimally Conscious State (MCS) patients near the end of life and in so doing, face decisions over maintenance or withdrawal of artificial nutrition and hydration. Although both withholding and withdrawal of artificial nutrition and hydration (ANH) in such circumstances are considered by experts in ethics and law to be acceptable, not all families nor health care professionals agree. This paper will explore basic aspects of serious brain injuries, especially MCS, the psychological role of food in interpersonal relationships, and lessons from clinical ethics that can help in goals of care discussions about withdrawal of ANH.

Palliative Care in Advanced Dementia: Comparison of Strategies in Three Countries

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), the Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and the Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in the Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in the Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in the Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.

Views of Registered Dietitians Compared to Speech-Language Pathologists on Artificial Nutrition and Hydration at the End of Life

Objective: To analyze and compare the knowledge and opinions of registered dietitian nutritionists (RDNs) about artificial nutrition and hydration (ANH) in a terminal illness. Beliefs of speech-language pathologists (SLPs) were also considered and compared against RDN data. Methods: This is a descriptive analysis utilizing survey responses from RDNs and SLPs regarding ANH in a case study patient with advanced dementia. Results: There was a strong belief among RDNs that ANH at end of life (EOL) would improve nutritional status, although a correlation was found between those in favor of ANH and believing it was ethical to withhold ANH at EOL (R2 = 0.109, p = 0.002). Responses indicated that SLPs need more education regarding ANH techniques, while RDNs felt ANH would improve aspiration risk. Place of employment, religion and age of respondents were also found to impact beliefs. Conclusion: Clinicians, specifically RDNs, working with patients at EOL need more evidenced-based education on the risks and benefits of ANH. Decisions regarding care of patients at EOL should be void of clinicians’ personal bias which may affect ethical treatment in the clinical setting. Further controlled trials must be performed before claims can be made regarding ANH at EOL.