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.
Cancer and nutrition-related problems are extremely distressing events and disturb functioning and daily life. It is recognized that the effects of stressors challenging well-being are mediated by the meaning attached to these stressors. As nutrition-related problems are often being experienced within couples, it is also important to gain understanding of a partner’s interpretation of complaints and whether it coincides with that of the patient.
To explore the meaning attached to nutrition-related problems, a qualitative approach was followed. Seven couples, each composed of a patient with cancer and his/her cohabiting life partner, participated. Data were collected through in-depth interviews and analyzed by an interpretative phenomenological approach.
Nutrition-related problems among patients with advanced cancer are mostly perceived as destroying health and leading to loss of physical, psychological, and social health symbols. Because the meaning patients and their partners attach to nutrition-related problems is individual and dynamic, it is necessary to devote special attention to the issues on different occasions.
The study findings can assist nurses and other professional caregivers in providing psychological support for couples confronted with nutrition-related problems in advanced cancer. It is important to take into account the meaning patients and partners attach to these nutrition-related problems.
Background: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED).
Methods: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model.
Results: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level.
Conclusions: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.
Older adults are at increased risk of malnutrition which is associated with poorer health, quality of life, and worse disease outcomes. This study identifies predictors of incident malnutrition using data from a sub-sample (n=1,841) of The Irish Longitudinal Study on Ageing (TILDA). Participants were excluded if they were <65 years, missing BMI data at baseline/follow-up, missing baseline weight loss (WL) data or malnourished at baseline (BMI <20kg/m2 or unplanned WL =4.5kg in the previous year). Logistic regression analysis was performed with incident malnutrition (BMI <20kg/m2 and/or calculated WL >10% over follow-up) as the dependent variable. Factors showing significant (p<0.05) univariate associations with incident malnutrition were entered into a multivariate model. The analysis was then repeated, stratified by sex. The 2-year incidence of malnutrition was 10.7%. Unmarried/separated/divorced status (vs.married but not widowed), hospitalisation in the previous year, difficulties walking 100m or climbing stairs independently predicted incident malnutrition at follow-up. When examined by sex, hospitalisation in the previous year, falls during follow-up and self-reported difficulties climbing stairs predicted malnutrition in males. Receiving social support and cognitive impairment predicted malnutrition in females.
The development of malnutrition has a range of predictors. These can be assessed using simple questions to identify vulnerable persons.
BACKGROUND: The treatment of advanced dementia patients is very complex and presents a difficult dilemma for physicians, and especially for the patient's family. In many cases, when the advanced dementia patient has no decisional capacity, the family needs to decide about force-feeding and resuscitation for their relative.
OBJECTIVES: To examine public opinion regarding force-feeding and resuscitation of patients with advanced dementia.
METHODS: Data from 1002 people who accompanied a patient to a hospital emergency department in Israel were collected and analyzed.
RESULTS: We noted the following results: the more religious the orientation of the respondents, the more likely they were to agree to forcefully feed and resuscitate advanced dementia patients and advanced dementia patients older than 80 years; those accompanying younger patients were more likely to think that the medical staff should resuscitate advanced dementia patients and advanced dementia patients older than 80 years compared to those accompanying elderly patients; younger people were more likely than older people to agree to force-feed and resuscitate patients.
CONCLUSIONS: This paper attempts to provide decision-makers and medical staff with some knowledge about public opinion regarding a sensitive and complex issue. This awareness may guide physicians in making critical medical decisions about those with dementia.