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Disability and Age Studies
Published in Joel Michael Reynolds, Christine Wieseler, The Disability Bioethics Reader, 2022
Honoring an advance directive to withhold food and water by mouth in the case of advanced dementia becomes particularly tricky when the no-longer-competent individual still expresses a desire (or willingness) to eat and drink. The difficulty, often described as the “then-self/now-self” problem, is whether you honor the wishes of the person who wrote the advance directive, or interpret the wishes of the person who demonstrates continued interest in eating and drinking. The dominant view in such a situation is that the patient should always be offered water and food, residential care facilities’ responsibility is to the now-self, and in fact many states prohibit the withdrawal of assisted feeding which they view as “comfort care” (Aleccia 2020; Wright, Jaggard, and Holahan 2019). Others, however, have pushed to expand the circumstances under which caregivers might follow an advance directive and stop offering food and water. For example, Menzel and Chandler-Cramer (2014) argue, following Dworkin, that it is possible to weigh the interests of the then-self (which continue to exist even after one stops experiencing them) against those of the now-self. Once the now-self shows little capacity to subjectively value their own survival (i.e., once “the self has withered”), the autonomy of the then-self should be honored (30). Across all of these arguments is the understanding that a diminishment in personhood takes place over time with dementia, and it is this perception that is particularly relevant to disability studies and age studies perspectives.
Inflammatory Disorders of the Nervous System
Published in Philip B. Gorelick, Fernando D. Testai, Graeme J. Hankey, Joanna M. Wardlaw, Hankey's Clinical Neurology, 2020
Swallowing dysfunction (oral and pharyngeal phases): Speech pathologist (±videofluoroscopy) assessment and guidance: education, dietary modification, positioning strategies (e.g. “chin tuck” and “head turn”), thermal stimulation (i.e. using ice to stimulate the faucal arches, which delays triggering of the swallow reflex).Assisted feeding, via percutaneous gastrostomy, may be required in severe cases where swallowing is no longer safe and the patient and carer agree; careful consideration is required as it is not without complications.31
Treatment and therapy
Published in Rosa Angela Fabio, Tindara Caprì, Gabriella Martino, Understanding Rett Syndrome, 2019
Rosa Angela Fabio, Tindara Caprì, Gabriella Martino
Assisted feeding happens when a caretaker puts food into the mouth of the person who has difficulty eating. This is useful in circumstances when the person needing assistance can swallow the food, but only fails to bring the food to their mouth. Supplements such as calcium and minerals are used to strengthen bones and slow scoliosis; a high-calorie, high-fat diet is followed to increase height and weight; insertion of a feeding tube will assist if patients accidentally swallow their food into their lungs.
How Soon is Now? A Temporal Account of Moral Disruption in Alzheimer’s Dementia
Published in AJOB Neuroscience, 2021
An increasing number of states explicitly prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered versus medical treatment (Aleccia 2018). Only one state, Nevada, explicitly recognizes an Advance Directive that allows a person with dementia to refuse eating and drinking. However, critics of such documents abound, claiming that what would otherwise be a legally and ethically permissible refusal of life-sustaining treatment becomes, in the case of AD, forced starvation of vulnerable people. Using emotional, provocative headlines—Nevada Legalizes Starving Incapacitated Patients—bolstered by quick quotes from legal experts in “end-of-life” bioethics which curiously lack any discernible clinical perspective that might expose readers to the visceral versus theoretical impact of these ethical dilemmas and lasting moral distress in real patient care- the rant proceeds to paint a dangerously inaccurate picture of the natural course of late-stage dementia, eschewing the autonomy and dignity of patients in the process:
Establishing perinatal and neonatal features of Prader-Willi syndrome for efficient diagnosis and outcomes
Published in Expert Opinion on Orphan Drugs, 2020
Lili Yang, Bo Ma, Shujiong Mao, Qiong Zhou, Chaochun Zou
Hypotonia is a nearly universal finding in neonates with PWS, and is a predominant feature which causing other main neonatal features including weak cry, poor sucking, and failure to thrive. Decreased fetal movement, the main prenatal feature, is also a result of hypotonia. Poor sucking, feeding difficulty, and failure to thrive in neonates with PWS is a chain reaction caused by hypotonia. Poor sucking and feeding difficulty lead to the need of assisted feeding using tubes or special nipples in PWS infants in weeks or months. Therefore, failure to thrive is a common result due to feeding difficulty. In our previous series of patients, more than 99% of the infants had feeding difficulty who requiring tube feeding and about 70% of the infants ever used feeding tube during hospitalization [14]. Whittington et al. in UK, Gold et al. and Singh et al. in USA reported a rate of feeding difficulty of 100%, 96.8%, and 99%, separately [19–21]. The high rate of feeding difficulty leads to high rate of failure to thrive in PWS infants. Singh et al. revealed a rate of failure to thrive at 77% [21], and our study found a much higher rate of 94.8% in neonates with PWS [14]. We found that failure to thrive is a universal finding in infants with PWS in China. The possible reason is related to inappropriate tube feeding using and techniques lacking in parents. Therefore, feeding knowledge education is important for improving the growth status of PWS infants.
The potential of oxytocin for the treatment of hyperphagia in Prader-Willi Syndrome
Published in Expert Opinion on Orphan Drugs, 2018
Infants with PWS have feeding difficulties, initially necessitating assisted feeding, often via gastrostomy tube or nasogastric tube. The feeding issues gradually improve and are followed by weight gain without a change in calories (18 months to 3 years of age) and subsequently, by an increased interest in food in early childhood (4–5 years of age) [5]. Hyperphagia and food-related behavior problems often evolve by 8–9 years of age, and are characterized by the lack of a normal satiety response, food preoccupations, and problematic food-seeking behaviors [5]. Although symptom severity varies, hyperphagia poses persistent, life-long risks to the health and safety of affected individuals. While strict environmental control and diet modifications may help reduce caloric intake and effectively manage weight for some individuals with PWS, the persistent drive for food prevents individuals with PWS from achieving a high quality of life or being well-integrated into their communities.