OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
OBJECTIVE: This systematic literature review explores the results of studies that have analyzed the association between inflammation and nutritional status in patients with cancer in palliative care.
METHODS: The bibliographic research was performed in May 2019, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Group guidelines. The inclusion criteria were papers that (1) had an online abstract available, (2) were original, (3) used a cohort or cross-sectional design, (4) involved patients with advanced cancer in palliative care, and (5) assessed the association between inflammation and nutritional status. The quality assessment was performed using the Newcastle-Ottawa Scale.
RESULTS: Nine studies were selected. Weight loss (WL; n = 7) was the most common nutritional marker employed and C-reactive protein (CRP; n = 6) was the most common inflammatory marker. There was considerable variability (39.0%-92.2%) in the proportion of patients who had WL in a 6-month period, while CRP >5 mg/dL was common in 45.3% to 73.9% of patients. Systemic inflammation was related to nutritional status, highlighting the relationship between CRP and WL and lean mass (LM). Patients with CRP >10 mg/L have been found to have a lower LM (P < .001) and a faster rate of loss of LM at a faster rate during the disease trajectory (P = .030).
CONCLUSION: Nutritional status is associated with systemic inflammatory response. Inflammatory markers should be considered an additional parameter for the nutritional diagnosis of patients with cancer in palliative care.
AIMS: To assess the incidence of voluntary stopping of eating and drinking in long-term care and to gain insights into the attitudes of long-term care nurses about the voluntary stopping of eating and drinking.
DESIGN: A cross-sectional study.
METHODS: Heads of Swiss nursing homes (535; 34%) answered the Online-Survey between June and October 2017, which was evaluated using descriptive data analysis.
RESULTS: The incidence of patients who died in Swiss nursing homes by voluntarily stopping eating and drinking is 1.7% and 67.5% of participants consider this phenomenon highly relevant in their daily work. Most participants (64.2%) rate voluntary stopping of eating and drinking as a natural death accompanied by health professionals and patients are also granted the right to care (91.9%). This phenomenon is expected by the participants less at a young age and more in old age.
CONCLUSION: Participants' overall views on the voluntary stopping of eating and drinking are very positive, whereas it is assumed that voluntary stopping of eating and drinking is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training. International Registered Report Identifier (IRRID): DERR1-10.2196/10358.
IMPACT: Voluntary stopping of eating and drinking is much discussed interprofessional, but there is a lack of knowledge on how this is perceived in the context of long-term care and about the incidence of the phenomenon. Voluntary stopping of eating and drinking is rare but noticeable end-of-life practises that is considered by professionals to be mainly dignified and peaceful, although moral concerns make it difficult to accompany. These findings call on long-term care institutions to discuss voluntary stopping of eating and drinking as an end-of-life practice. Positioning on the issue provides clarity for staff and patients and promotes to develop standardized care.
The Ethics Subcommittee of AMDA-The Society for Post-Acute and Long-Term Care Medicine ("The Society") presents arguments for and against Stopping Eating and Drinking by Advance Directives (SED by AD). SED by AD is a type of advance directive in which a proxy is instructed to stop offering food and fluids to a person when they reach a certain stage of dementia. Although most conversations regarding SED by AD focus on patient autonomy and the right to determine one's care, we propose that the ethical principle of justice-the obligation to treat all individuals equally regardless of race, gender, and physical or cognitive ability-is the decisive principle in this controversy. We also suggest that implementing SED by AD can violate a physician's obligation to beneficence and nonmaleficence. On the other hand, we identify with the families of our patients who see the refusal to follow an advance directive as an injustice of the highest order. In the end, The Society is convinced that no choice can be made here without practicing an injustice: if one refuses to implement SED by AD, one violates the autonomy of the person who drew up the advance directive. If, on the other hand, one refuses food and fluid to a resident who still accepts food, one risks practicing an injustice against that person as they are now. Recognizing that we have the greatest responsibility to our patients as they present to us in the residential setting, The Society recommends against implementing SED by AD in residents who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia.
OBJECTIVES: In clinical settings, untreatable biliary sludge in the gallbladder can be observed in older adults with advanced dementia. The underlying cause of biliary sludge existence in patients with dementia is currently unknown. Therefore, we aimed to investigate the prevalence, risk factors, and related outcomes of biliary sludge formation in the gallbladder of older adults with dementia.
DESIGN: Cross-sectional study.
SETTING: Geriatric ward of University Hospital in Japan.
PARTICIPANTS: Inpatients aged 80 and older living with dementia.
MEASUREMENTS: We evaluated the presence of biliary sludge by diagnostic ultrasonography and collected data regarding patient demographic information, cognition (mini-mental state examination [MMSE]), physical activity (Barthel Index), oral food intake (food intake level scale [FILS]), clinical stage of dementia (functional assessment staging [FAST] of dementia), and patient performance status (Zubrod/ Karnofsky score).
RESULTS: Male sex, larger gallbladder volume and calories from oral intake were significantly associated with the presence of biliary sludge (P = .02, .02, .002, respectively). There was a significant negative correlation between the FAST stage and the FILS level in all patients (P < .001). More advanced dementia and dysphagia was more likely to be found in patients with Alzheimer disease (AD) with biliary sludge, compared to patients with AD without biliary sludge (FAST 7a, FILS II and FAST 6c, FILS V, respectively, P = .06, 04). A logistic regression analysis revealed that the eating status of FILS I and II, generally called "fasting or anorexia", was a significant risk factor for forming biliary sludge in older adults with dementia (P = .031, odds ratio: 5.25, 95% confidence interval: 1.16-23.72).
CONCLUSIONS: Fasting status may be associated with the existence of biliary sludge in older adults with dementia. Therefore, supportive care for eating might be an important solution to comfortable end-of-life care for older adults with advanced dementia.
Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
The number of people living with Alzheimer disease and other dementias continues to grow because of the aging of the US population. Increasingly, the issue of patient- and/or surrogate-directed withholding of oral, hand-fed food and fluids in cases of late-stage dementia is confronting caregivers. Major media outlets have covered several cases wherein patients with explicit directives or clear surrogate decision making were not allowed to face the end of their lives according to their wishes. Ethical and legal scholars, as well as many end-of-life advocacy groups, are working to develop a framework and provide guidance in these cases. A local hospice organization was faced with these ethical deliberations when an activated proxy decision maker advocated for caregivers to stop hand feeding an incapacitated patient with end-stage dementia. In this article, this case is summarized, and this important ethical issue is presented in the setting of a literature review and nursing implications.
CONTEXT: Taste and smell abnormalities (TSA) occur throughout the cancer trajectory regardless of cancer primary site and contribute to cancer-associated malnutrition. TSA etiology is poorly understood. Tumor-related inflammation is a possible cause.
OBJECTIVE: This study examined the prevalence, characteristics, and severity of TSA in advanced cancer and explored the relationship between TSA and nutritional status. No previous study combined subjective and objective measures for both taste and smell assessment in this population.
METHOD: Consecutive advanced cancer hospice patients were recruited. A modified version of the "Taste and Smell Survey" assessed subjective TSA. Validated taste strips and "Sniffin' Sticks" were the objective measures. The abridged patient-generated subjective global assessment evaluated nutritional status.
RESULTS: A 93% prevalence of TSA in 30 patients with advanced cancer was identified. When subjective and objective evaluations were combined, 28 had taste abnormalities, 24 smell abnormalities, and 24 both. Taste changes included "persistent bad taste" (n = 18) and changes in how basic tastes were perceived. Half reported smell was not "as strong" as prediagnosis, while more than half (n = 16) had an objective smell abnormality. Most (97%) were at risk of malnutrition. Fatigue, dry mouth, early satiety, and anorexia were common nutrition-impact symptoms. No statistically significant relationship was found between TSA and malnutrition scores.
CONCLUSIONS: TSA were highly prevalent. Subjective taste and smell changes did not always accord with objective TSA, suggesting both assessments are valuable. TSA characteristics varied, and particular foods tasted and smelled different and were not enjoyed as before. TSA are common, high-impact problems in advanced cancer.
Anorexia, weight loss and muscle wasting commonly affect people approaching the end of life. It is critical that clinicians caring for people with advanced illness and progressive frailty can assess the nutritional and hydration needs of these people, engage them in shared decision making and support them to plan ahead regarding their nutritional care preferences as their health deteriorates.
This book examines the complex operations of the long-term care facility and offers critical skills to current and future long-term care administrators for delivering quality, cost-effective services. Comprehensive, yet concise, the Third Edition explores the necessary skills and tools for creating a person-centered environment. Topics covered include : how to adapt an existing nursing facility, the growing culture change movement, and the laws, regulations, and financing of the long-term care industry, as well as its organization and delivery. Finally, this book offers extensive coverage of the essential skills necessary to manage it all.
Origine : BDSP. Notice produite par IRDES R0x8nEsH. Diffusion soumise à autorisation
L'Unité de Soins palliatifs de l'hôpital Forcilles, Fondation Cognacq-Jay, offre aux patients une prise en charge pluriprofessionnelle avec une spécificité nutritionnelle. Si chaque membre de l'équipe y est sensibilisé, une diététicienne nutritionniste est néanmoins intégrée à l'équipe pour prendre en compte les goûts et habitudes des patients tout en apportant des conseils alimentaires de confort à l'ultime étape de la vie mais également pour apporter son expertise sur l'état nutritionnel dans les situations de répit. Ce retour d'expérience a fait l'objet d'un atelier aux Journées d'études AFN 2017 à Bordeaux. (R.A.).
Origine : BDSP. Notice produite par APHPDOC ksR0xqB7. Diffusion soumise à autorisation
L'accompagnement des personnes en fin de vie requiert qu'on aborde l'aspect de l'alimentation. Le deuil alimentaire peut être vécu difficilement, pour différentes raisons par les malades et leurs proches. La réassurance face à la diminution parfois essentielle des apports est de mise. Elle peut même être encouragée dans certains contextes afin de maximiser le confort des patients. La baisse des ingesta n'est pas directement liée au pronostic. Le fait de réduire les apports ne précipite pas nécessairement le décès.
Purpose: Few studies have investigated nutrition impact symptoms and eating-related distress among advanced cancer patients and their families. This is a questionnaire survey to examine the severity of nutrition impact symptoms and the prevalence of eating-related distress among them in palliative and supportive care settings.
Methods: Questionnaires for patients and their families were preliminarily developed. We selected 16 common symptoms of advanced cancer, i.e., 9 symptoms of the ESAS-r and 7 of the PG-SGA. Each questionnaire concerning eating-related distress consisted of 12 items.
Results: A total of 140 out of 147 patients responded (95.2%). They were classified into two groups: (1) non-cachexia/pre-cachexia (n = 57) and (2) cachexia/refractory cachexia (n = 83). The top 3 out of 16 symptoms in all patients were feeling of well-being, lack of appetite, and tiredness. Significant differences were observed in 8 symptoms between the two groups: tiredness (p = 0.007), drowsiness (p = 0.007), lack of appetite (p < 0.001), early satiety (p = 0.001), diarrhea (p = 0.025), abnormal taste (p = 0.02), difficulty swallowing (p = 0.002), and feeling of well-being (p = 0.003). Regarding eating-related distress in patients, significant differences were observed in all items, except for 2, between the two groups. Concerning eating-related distress in families, significant differences were observed in all items between the two groups.
Conclusion: Advanced cancer patients with cachexia have more severe nutrition impact symptoms than those without cachexia, and patients with cachexia and their families have greater eating-related distress than those without cachexia.
BACKGROUND: "To die with dignity" has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. "Voluntary stopping of eating and drinking" (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study.
OBJECTIVE: The objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds.
METHODS: This protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds.
RESULTS: The enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019.
CONCLUSIONS: The results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10358.
OBJECTIVES: The aim of the present study was to evaluate the association between sarcopenia, diagnosed by different muscle mass measurement techniques, with nutritional status and overall survival in patients with advanced cancer under palliative care.
AIM: To investigate the association of sarcopenia, according to distinct muscle mass measurement methods, with nutritional status and overall survival (OS).
METHODS: This observational and prospective study, including 334 patients, defined sarcopenia as reduced muscle mass and strength. Muscle mass was evaluated adopting 3 different methods, mid-upper arm muscle area (MUAMA), calf circumference (CC) and appendicular skeletal muscle mass (ASMI) described by Baumgartner (1998) and adjusted for height. Strength was defined using a handgrip dynamometer and OS was established based on a 90 days follow-up after inclusion date. Kaplan-Meier curves were conducted for survival analyzes and the association between sarcopenia and OS was evaluated by Cox regression model RESULTS: Prevalence of sarcopenia varied from 27-65% according to the method used to evaluate muscle mass. Malnutrition assessed by different parameters was significantly higher in patients with sarcopenia. Patients considered sarcopenic by MUAMA (43 versus 67 days, p<0.001), CC (44 versus 77 days, p<0.001) and ASMI (48 versus 75 days, p<0.001) had significantly lower OS compared to non-sarcopenic patients. Sarcopenia evaluated by MUAMA (HR, 1.57; 95% CI, 1.12-2.18) and CC (HR, 2.00; 95% CI, 1.45-2.76) showed a higher risk of mortality.
CONCLUSION: Sarcopenia diagnosed by MUAMA and CC could predict mortality and CC proved to be the best prognostic method for estimating OS in patients with advanced cancer in palliative care.
BACKGROUND: Olanzapine is commonly utilized in palliative care for the treatment of nausea, and a known side effect of olanzapine is increased appetite. Olanzapine is also known to cause re-emergence of eating disorders (EDs) in patients utilizing olanzapine for its antipsychotic effects. It is unclear to what extent this may also occur in patients with serious/life-limiting illness.
METHODS AND RESULTS: We present a case of a 70-year-old female with recurrent ovarian cancer and a history of bulimia nervosa (BN) that developed resurgence of her BN after initiation of olanzapine for cancer-associated nausea. Her BN resolved with reducing the dose of olanzapine.
CONCLUSION: It is important to recognize that recurrence of EDs can occur when using olanzapine in the palliative care setting.
Aim: The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding.
Methods: Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined.
Results: Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's a = 0.70) and feeding subscale (15 items, Cronbach's a = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006).
Conclusions: CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.
Un modèle d’accompagnement des souffrances pédiatriques, fondé sur une activité culinaire guidée par une infirmière, a été expérimenté en Afrique. L’approche soignante permet d’affermir les liens psychoaffectifs entre l’enfant et son proche privilégié, et d’apaiser les angoisses autour de la dyade mère/enfant. Une situation clinique de fin de vie autour d’un enfant pris en charge dans une structure hospitalière au Cameroun illustre cette démarche.
BACKGROUND: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations.
AIM: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package).
DESIGN: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data.
SETTING AND PARTICIPANTS: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of 12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis.
RESULTS: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs ( p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness ( p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals.
CONCLUSION: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.