NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.
AIMS AND OBJECTIVES: The purpose of this study is to elucidate the attitudes and knowledge of nursing home (NH) staff involved in the decision-making process surrounding tube feeding for people with advanced dementia, and regarding palliative care and eating difficulties in this population.
BACKGROUND: Dementia's final stage is associated with eating difficulties. "Comfort feeding" is the approach endorsed by the American Geriatrics society for those with advanced dementia and eating difficulties. Despite this, tube feeding remains a persisting practice in NHs in Israel.
DESIGN: Qualitative descriptive study.
METHODS: 27 NH employees from different sectors employed by seven NHs in Northern Israel underwent semi-structured, face-to-face interviews. The COREQ checklist was used to aid with reporting and analysis of results.
RESULTS: In Israel, there is an emerging palliative care discourse in caring for people with advanced dementia living in the NH setting. However, many interviewed didn't demonstrate an accurate understanding of this term or of the term "comfort feeding". Several barriers toward implementation of palliative care were identified and include a lack of formal education regarding nutrition in advanced dementia, socio-economic factors and their association with the two types of NHs operating in Israel (those with exclusively private funding, and those reimbursed by the Ministry of Health).
CONCLUSIONS: Interviews with NH staff regarding eating difficulties in advanced dementia shed light on the palliative care discourse, which is in a liminal stage in many countries. The themes which emerged may help inform future recommendations regarding palliative care in general and more specifically in NH residents with advanced dementia, in countries where policy is still being developed and refined.
RELEVANCE TO CLINICAL PRACTICE: Understanding barriers toward implementation of a palliative approach and comfort feeding specifically could improve the care for people with advanced dementia in the NH setting.
OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED.
METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey.
RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%).
CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.
BACKGROUND: Eating and drinking are essential also in social life. Nutrition and hydration (N&H) at end of life are often a source of discussion and distress. Stopping eating and drinking is a defining element of the dying phase, however, this time point is not well defined. The aim of this retrospective analysis was to investigate whether such a time point can be detected, whether there are specific characteristics associated.
METHODS: The time point when patients stopped oral intake was analyzed in relation to time until death on a specialist palliative care ward (sPCW) of a tertiary comprehensive cancer center. This "tipping point" (TP) was defined as the time point when total food intake fell below 25% of normal solid intake (TP-S) and "tipping point fluid" (TP-F) when fluid intake fell below 500 ml/day (oral/intravenous/subcutaneous). Demographic and medical data, the N&H-module in the electronic patient management system and the daily multiprofessional treatment notes at TP (±3 days) were analyzed in all patients cared on the sPCW between 1/15 and 9/17.
RESULTS: In these 32 months, of 1194 treated patients 683 (57%) died on the ward. A TP-S was identified in 291 patients prior to dying on the ward (43%) with a median time of six days from to TP-S death. In 75% of these patients, TP-S occurred within two weeks prior to death (range: 0-5 weeks). A TP-F was detected in 202 patients (30%) with a median TP-F-time of two days prior to death. In 75% of these patients, the TP-F was within three days prior to death (range: 0-14 days). The cancer entities in patients in whom TPs could be detected were heterogeneous. No specific disease-related or sociodemographic characteristics for patients with TPs could be determined. In the daily treatment notes, oral and swallowing problems, taste alterations and discussions about stopping artificial nutrition were mentioned.
CONCLUSION: In less than half of dying patients a definitive TP could be detected. In these patients, TP-S occurred within two weeks and TP-F within few days before death. No specific characteristics of patients with TPs could be observed. This indicates the individual nature of the trajectory at end of life.
AIM: To better understand the participation of nursing staff in end-of-life nutrition and hydration decision-making in an American nursing home.
DESIGN: A qualitative exploration with ethnographic focus.
METHODS: In April 2017, in-person, semi-structured interviews were performed with 19 nursing staff members in a nursing home located in the south-eastern United States. Additional information was gathered through participant observation during interviews and review of organizational and regulatory policies. Transcripts were coded and analysed using qualitative methods described by Roper and Shapira (2000).
RESULTS: Three primary themes relating to nursing staff participation in end-of-life nutrition and hydration decision-making were identified: (a) Formal decision-making: decisions made and implemented by persons with the authority to make legal and binding care decisions in the nursing home setting; (b) Informal decision-making: decisions not requiring medical orders; and (c) Influential factors: factors that influence actions of nursing staff.
CONCLUSION: A variety of factors have an impact on nursing staff participation in end-of-life nutrition and hydration decision-making. Participation is closely aligned with the type of decision, whether formal or informal, and role, whether Certified Nursing Assistant/Aide, Licensed Practical/Vocational Nurse, or Registered Nurse.
IMPACT: End-of-life nutrition and hydration decision-making in nursing homes differs from decision-making in other care settings and presents a challenge globally. Interventions that support the participation of nursing staff in end-of-life nutrition and hydration decision-making have the potential to positively impact the experiences of residents and family members faced with these issues in the nursing home setting.
Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
The escalating number of foodborne diseases and food poisoning outbreaks demand a better call for improved food-handling practices. Hospices are typically described as nongovernmental organizations that offer palliative care to terminally ill patients. The majority of hospice food handlers are not trained in food safety aspects, and services are offered on a voluntary basis. In this study, a descriptive survey design comprising of semistructured questionnaire was utilized to assess the knowledge, attitudes, and practices of the hospice food handlers (n = 100) in hospices around Central South Africa. More than half of the participants (68%) had not taken basic food safety training. The average percentage of the correct answers on the knowledge questionnaire was 66.8%. The participants had a mean age of 35 years (SD = 9.27). Attendance of food safety course had a significant effect on both the practices of using gloves to touch or distribute unwrapped foods ( 2 = 8.411, p-value = .012), and washing hands after using gloves ( 2 = 12.560, p-value = .001). The overall KAP mean score was 78.38. A statistically significant difference was found between the trained and untrained food handlers regarding food safety knowledge (p < .001). There was substantial lack of knowledge regarding the correct temperature for a refrigerator including hot ready-to-eat food.
Voluntarily stopping eating and drinking is a means of hastening death. Unlike euthanasia or medical aid in dying, which are available only in certain jurisdictions and with assistance from health care
professionals, the ability to die by voluntarily stopping eating and drinking is determined by ongoing patient choice, although clinical and caregiver support is recommended. Few studies have examined the incidence of
patients choosing to stop eating and drinking; studies in the Netherlands and United States suggest patients hoosing this route have concerns about both physical and existential suffering. This article presents an
overview of voluntarily stopping eating and drinking, including guidance for clinicians, legal permissibility, and ethical discussions about whether the act constitutes suicide and how clinicians might respond to requests for information or support.
PURPOSE: Although nutritional interventions are becoming widely used in cancer patients, purposes and results of such treatment are not always well-defined. This is because nutrition is traditionally considered a palliative treatment to be confined to the area of palliative cares, whereas the modern approach includes nutrition as an early supplemental support to improve compliance of patients with the oncologic therapies and total parenteral nutrition may be recommended in patients who would be destined to succumb prior from starvation-malnutrition than from tumour progression. Purpose of this paper if to define the potential as well as the limitations of nutritional interventions on both the survival and the quality of life of the advanced cancer patients.
RECENT FINDINGS: Some RCT on the use of oral, enteral and supplemental parenteral nutrition in patients on oncologic therapy show some benefit on compliance with therapy and in some domains of quality of life. Some malnourished (hypo)aphagic incurable cancer patients may survive longer thanks to parenteral nutrition, while few data suggest that quality of life may be maintained for a limited period of time. With a few exceptions, oncology and nutrition have till recently travelled on parallel tracks without talking each other. The oncologist who knows the natural history of the patients should understand which risk of complication and of poor tolerance to the treatment can malnourished patients carry and which is the potential of parenteral nutrition in hypophagic incurable patients.
Alonso was a 10-year-old boy with a recurrent, re-fractory brain tumor whose disease progressed through multiple therapies over many years. When no additional cancer-directed options remained, Alonso was admitted tothe hospital for symptom management as he approached the end of his life. Although Alonso was unresponsive and posturing, his family continued to hope desperately for a miracle. As they kept vigil around the bedside of his frail body, praying and waiting, they gradually began to notice—and then fixate on—how the sharp angle of his bones protruded more with each passing day.
Introduction: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal?
Objective: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior
Methods: A cross-sectional study, starting with an open question focusing professionals’ associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories.
Results: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with end-of-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable.
Conclusion: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduced.
Background: The nutrition profile of palliative home care clients is unknown. This study describes this group and their nutrition issues and evaluates the performance of the interRAI nutrition Clinical Assessment Protocol (CAP).
Methods: This was a cross-sectional secondary analysis using Ontario interRAI Palliative Care (interRAI PC) Assessment data. The sample represents 74,963 unique Ontario home care clients assessed between 2011 and 2018. Frequencies and standardized differences (stdiffs) of nutrition characteristics were presented for cancer (n = 62,394) and noncancer (n = 12,569) diagnostic subgroups. Rates of triggering the nutrition CAP were presented by nutrition issue to evaluate its performance.
Results: Of this sample, 16.7% were =85 years of age, 52.6% had a prognosis between 6 weeks and 6 months, and 41.4% required assistance with eating. The prevalence was higher among those with nervous/mental/behavioral disorders (72.6%) compared with those with cancer (37.6%; stdiff = 0.75). However, most nutrition issues experienced were similar (stdiff < 0.20) across diagnostic groups. Of the entire sample, 21% triggered the nutrition CAP, indicating a need for further evaluation or intervention. Yet, 73.4% of those who experienced dry mouth, 71.8% of those who required assistance with eating, and 68.4% of those who received a nutrition consult within the last 3 days did not trigger the nutrition CAP.
Conclusions: Nutrition issues are prevalent in palliative home care clients, regardless of diagnosis; yet the nutrition CAP identified a small fraction of this group. There is a need to focus research and care guidelines toward life-limiting illnesses beyond cancer and address nutrition-related issues in this population.
Objective: The aim of this study was to characterize nutritional status, body composition, oxidative stress, and inflammatory activity and to determine the possible associations between nutritional status and clinical variables in advanced cancer patients.
Method: This was a cross-sectional study of 46 elderly cancer patients under palliative care with a prognosis of 30 days or more. Nutritional status, food intake, anthropometry, body composition (deuterium oxide method), metabolic profile, inflammation damage (C-reactive protein), oxidative damage (8-hydroxy-2’-deoxyguanosine), and symptom intensity were evaluated.
Results: Among elderly cancer patients, 36.9% were malnourished or at risk of malnutrition. Systemic inflammation was detected, with a correlation between worse nutritional status and higher C-reactive protein levels (p < 0.01, r= -0.57), while lower lean mass (p < 0.01, r = 0.62) and higher fat mass percentages (p < 0.01, r = 0.62) correlated with higher levels of 8-hydroxy-2’-deoxyguanosine. Furthermore, daily energy (n = 25; 57.4%) and protein intake (n = 24; 52.2%) were lower than recommended in more than half the patients. The most prevalent symptoms were anxiety, impairment of well-being, drowsiness, tiredness, and lack of appetite.
Conclusions: Despite preserved functionality, patients already had clinical and laboratory changes that, together with inadequate food intake, risk of malnutrition, systemic inflammation, and the presence of uncontrolled symptoms, alerted to the importance of an early and comprehensive palliative approach.
Increased attention is being paid to "dementia directives," advance directives tailored to persons with dementia that outline what treatments an individual with dementia might wish to receive or forgo should they lose capacity. Particular focus has been placed on the request to have assisted oral feedings withheld, the so-called Stopping of Eating and Drinking by Advance Directive (SED by AD), the purpose of which is to hasten death. This article reviews the available literature regarding the practice of SED by AD and explores the clinical and ethical aspects as they present at the bedside. Our review aims to show that practical, clinically applicable ways to approach such requests must be developed in order to balance the fundamental principles at play.
Background: The prediction of short-term survival is important for noncancer patients and their families. Although a markedly reduced oral intake by cancer patients suggests a poor prognosis, the survival times of noncancer patients after its onset remain unclear. We herein investigated the time from a marked reduction in oral intake to death in noncancer patients as well as factors associated with their subsequent survival.
Methods: We conducted a retrospective medical record review of noncancer patients who died in our hospital between April 2017 and April 2018. We recorded the day when oral intake markedly decreased and the date of death. We extracted data on age, gender, the Charlson Comorbidities Index, mean daily fluid volume, laboratory test results, and vital signs converted to the Shock Index (SI). We used Cox's proportional hazards models to assess relationships between these factors and survival times after the onset of a markedly reduced oral intake.
Results: We analyzed data from 44 noncancer patients. The median time from the onset of a markedly reduced oral intake to death was 16.5 days. Based on Cox's proportional hazards models, only SI >= 1.0 at the onset of a markedly reduced oral intake correlated with survival times (hazard ratio: 5.89, 95% confidence interval (CI): 1.71-20.1, P = .005).
Conclusion: Noncancer patients died a median of 16.5 days after the onset of a markedly reduced oral intake, and SI >=1.0 correlated with subsequent survival times. These results will provide novel insights into the prognosis of noncancer patients at the end of life.
Background: Nutritional impairment is common in cancer patients and adversely affects quality of life (QoL). The aim of this study was to investigate the association between nutritional status and QoL in incurable cancer patients in palliative care.
Methods: A prospective cohort with incurable cancer patients referred to the specialized Palliative Care Unit of the National Cancer Institute in Brazil was conducted. The nutritional risk (NR) was assessed using the Patient-Generated Subjective Global Assessment short form (PG-SGA SF), and cancer cachexia (CC) was defined according to the international consensus. QoL was evaluated using the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL). Multivariate linear regressions analyses were performed to assess the relationship between the nutritional status and QoL scores.
Results: A total of 1039 consecutive patients were included. A high prevalence of NR (85.4%) and CC (78.7%) were observed. The patients with worse nutritional status presented significantly poorer physical, emotional, symptoms domains scales, and overall QoL. CC were significantly associated with QoL scores for dyspnea (p = 0.013), insomnia (p = 0.046), and appetite loss (p = 0.015), while NR were associated with all the QoL domains scales covered in QLQ-C15-PAL.
Conclusion: Our findings support that impaired nutritional status was associated with poor QoL in incurable cancer patients. NR assessed by PG-SGA SF better reflects physical, emotional, symptom burden, and overall QoL scores. Thus, this tool may contribute in identifying patients at risk of deterioration QoL.
Pourquoi mange-t-on pour les morts, avec les morts ou, du moins, parmi eux ? Pourquoi l’être humain est-il allé jusqu’à manger ses morts et ceux des autres ? Comment ces rituels se déroulèrent-ils incessamment au fil des siècles et quel sens les participants entendirent-ils leur donner ? Ce ne sont là que quelques-unes des questions que nous avons tenté d’aborder à travers quelques exemples historiques.
Nous nous demanderons également ce qu’est vraiment un dernier repas et qui le mange et dans quelles conditions. En un mot, qui mange quoi et pourquoi. Nous évoquerons l’importance du banquet funéraire de l’Antiquité à l’Ancien Régime, et comment il aidait les populations à faire leur deuil et ressoudait les familles et les communautés.
Dans les temps contemporains, le banquet funéraire se résume, dans le meilleur des cas en une réception apéritive avec les plus proches parents ou les amis les plus intimes. Mais pendant des siècles, les funérailles ne pouvaient s’achever que par un repas, banquet funéraire ou ripailles villageoises. Nous demanderons donc également pourquoi une telle coutume a pu disparaître et quelle société avons-nous pour avoir fait disparaître une des coutumes les plus humaines qui aient été.
En Gaule, les rites funéraires comportent assez régulièrement des dépôts d’offrandes. Il s’agit principalement de vases, d’amphores, d’ossements animaux et de divers ustensiles en métal. Beaucoup de ces vestiges sont en rapport avec la consommation de boissons, vin ou cervoise, et de divers aliments, animaux ou végétaux. Cette présentation est plus particulièrement consacrée au partage des viandes entre défunt, bûcher et banquet funéraire, sachant que cette pratique est sans doute réservée à une élite.
Pouvez-vous expliquer pourquoi et comment vous organisez des apéritifs dans cette unité de soins palliatifs ? B.B. Ces apéritifs ont plusieurs modalités. Il se peut qu’en écoutant une personne malade ou sa famille, la question de l’alimentation, d’un plat ou d’un alcool, vienne sur le tapis, ou encore l’évocation d’un anniversaire, d’une fête ou d’un souvenir. Du coup, on peut émettre l’idée de boire ensemble, un apéritif par exemple. Le malade est extrêmement étonné de cette proposition, surtout venant d’un médecin. On appelle cela une petite fête ou un apéritif. Ça peut être du vin, du porto, rarement les alcools forts, tel que le whisky qui peut provoquer des irritations buccales. Ce peut être un blanc doux, un Sauternes. Du champagne ?B.B. Plus rarement le champagne. À ce moment-là, la personne hésite, ne sait pas trop, invoque le fait que son goût peut être modifié ou qu’elle ne peut plus avaler. Dans le cas où elle ne peut plus avaler, il est possible de mettre une goutte sur sa langue pour le goût. Ce petit projet est construit dans l’instantané, avec un proche s’il est présent, et avec deux ou trois membres de l’équipe qui sont disponibles et qui veulent bien venir. On s’interpelle entre nous et l’apéro est organisé vers midi et demi, en fin de visite. On demande aussi quelle musique le patient souhaite mettre. Ça peut se décider le matin pour le midi ou même sur le moment, car on ne sait pas si la personne sera vivante le lendemain. Il est aussi possible de partager un plat ou un alcool à n’importe quel moment, au goûter ou au soir…