OBJECTIVE: The evidence base for home parenteral nutrition (HPN) in patients with advanced cancer is lacking. To compare the survival of malnourished patients with cancer undergoing palliative care who received HPN with a homogeneous group of patients, equally eligible for HPN, who did not receive HPN.
DESIGN: Prospective, cohort study; tertiary university hospital, home care, hospice.
METHODS: Patients were assessed for HPN eligibility according to the guidelines. In the eligible population, who received both HPN and chemotherapy was excluded, while who received only HPN was included in the HPN+ group and who received neither HPN nor chemotherapy but artificial hydration (AH) was included in the HPN- group.
RESULTS: 301 patients were assessed for HPN eligibility and 86 patients (28.6%) were excluded for having severe organ dysfunction or Karnofsky performance status <50. In outcome analysis, 90 patients (29.9%) were excluded for receiving both HPN and chemotherapy, while 125 (41.5%) were included, 89 in HPN+ group (29.5%) and 36 in HPN- group (12%). The survival of the two groups showed a significant difference favouring patients receiving HPN (median overall survival: 4.3 vs 1.5 months, p<0.001). The multivariate analysis of the risk factors for mortality showed that not receiving HPN accounted for the strongest one (HR 25.72, 95% CI 13·65 to 48.44).
CONCLUSIONS: Comparative survival associated with the use of HPN versus AH showed significantly longer survival in malnourished patients with advanced cancer receiving HPN. These data support the guideline recommendation that HPN should be considered when malnutrition represents the overriding threat for the survival of these patients.
Early in the COVID-19 pandemic, I got a call from an internal medicine resident for a new palliative care consult. The resident was at a loss; she did not know how to advise the patient's family about her prognosis. Should she place a feeding tube in this patient who, recovering from COVID-19, now could not wake up?
BACKGROUND: Nutrition is a basic patients' need and an important component of nursing. End-of-life cancer patients can experience difficulties in eating and drinking, sometimes requiring artificial nutrition and hydration (ANH). Nurses' knowledge and attitudes greatly influence nursing care. Nurses may lack knowledge of ANH. To date, no study has explored the knowledge and attitudes of oncology and palliative care nurses toward end-of-life ANH.
OBJECTIVE: To describe oncology and palliative care nurses' knowledge of and attitudes toward ANH.
METHODS: A multicenter cross-sectional study was conducted in 7 regions of Italy using the Italian version of the Questionnaire on Knowledge and Attitudes in Providing ANH for Terminal Cancer Patients. Attitudes were divided into benefits and burdens of providing ANH. Data were analyzed by descriptive statistics.
RESULTS: High percentages of oncology and palliative care nurses showed reasonable knowledge about ANH. More disagreement was evidenced about benefits and burdens of ANH, and lower importance was given to them.
CONCLUSIONS: Some misconceptions and a low level of awareness exist among some nurses about ANH. More nursing studies should be conducted and extended to different care settings. Moreover, guidelines should be reinforced with a nursing perspective to better define nurses' role in the decision-making process on ANH.
IMPLICATIONS FOR PRACTICE: This exploration of nurses' knowledge of and attitudes toward ANH in end-of-life cancer patients can contribute to an understanding of how nurses can be involved in better meeting cancer patients' nutritional needs at the end of life.
The question over whether to administer clinically assisted nutrition and hydration (CANH) to a dying patient is controversial, with much debate concerning this sensitive issue. The administration of CANH poses clinical and ethical dilemmas, with supporting and opposing views. Proposed positive effects of CANH include preventing thirst, delirium, hypercalcemia, and opioid toxicity. However, CANH has been shown to increase the risk of aspiration, pressure ulcers, infections, and hospital admissions as well as potentially causing discomfort to the patient. Guidance from several national bodies generally advises that the risks and burdens of CANH outweigh the benefits in the dying patient. However, an individualized approach is needed, and the patient’s wishes regarding CANH need consideration if they have capacity and can communicate. Otherwise, sensitive discussions are required with the family, enquiring about the patient’s prior wishes if there is no advanced care plan and acting in the patient’s best interests. The ethical principles of autonomy, beneficence, non-maleficence, and justice need to be applied being mindful of any cultural and religious beliefs and potential misperceptions.
Background and aims: The prevalence of malnutrition is over 70% in advanced cancer patients and impacts negatively on survival and quality of life. Artificial nutrition can be integrated into a home palliative care program. This observational study aims to describe the criteria for identifying the cancer patients that could benefit from home artificial nutrition (HAN) and to evaluate its impact on survival and performance status.
Methods: The selection criteria for patient's eligibility to HAN were: Karnofsky Performance Status (KPS) =40, life expectancy =6 weeks, inadequate caloric intake ± malnutrition, suitable psycho-physical conditions and informed consent. The access route for nutritional therapy (home parenteral nutrition, HPN; home enteral nutrition, HEN) was chosen according to the ESPEN Guidelines. The parameters considered were: primary site of the tumor; oral food intake; nutritional status; stage of cachexia; fluid, energy and protein supplied by HAN; survival.
Results: From 1990 to 2019, 43,474 cancer patients were assisted at home in Bologna (Italy). HAN started in 969 patients (2.2% of total patients, 571 men and 398 women, mean age 65.7 ± 12.7 years): HPN in 629 patients (64.9%), with gastrointestinal obstruction as the main indication; HEN in 340 patients (35.1%), with dysphagia as the main indication. Considering the 890 deceased patients, the mean survival after the start of HAN was 18.3 weeks and 649 patients (72.9%) survived more than 6 weeks. The mean survival was higher in HEN (22.1 weeks) compared to HPN patients (16.1 weeks) (p < .001). After one month, KPS was unchanged in 649 (67.0%), increased in 232 (23.9%) and decreased in 88 patients (9.1%). The mean KPS increased in patients starting HAN in pre-cachexia and cachexia (p < .001). Cachexia and refractory cachexia at the entry were associated with a reduced survival [odds ratio: 1.5 and 2.3 respectively, p < .001 for both condition] respect to pre-cachexia.
Conclusions: The selection criteria allow the identification of the patient who can take advantage of HAN. HAN can be effective in avoiding death from malnutrition in 73% of patients, and in maintaining or improving the KPS at one month in 90% of cases. The benefits provided by HAN on survival and performance status depend on the cachexia degree at the entry.
This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration (CANH) at the end of life. This case raises important ethical and legal questions regarding a third person's right to judge the value of another person's life and the concept of 'wrongful life'. In our brief report, we discuss the concepts of the 'value of life' and wrongful life, which were evoked by the court, and how these concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment (LST). However, it is unclear to what extent physicians' decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the 'safe' option for the physician, and hence, as always appropriate.
This review aimed to summarize existing nursing literature to provide an overview of the extent, range, and nature of nurses' involvement in artificial nutrition and hydration (ANH) at the end of life and to map the key concepts underpinning nurses' involvement in ANH. A scoping review was designed following the methodological framework guidelines of Arksey and O'Malley and the recommendations for advancing the methodology by Levac et al. An inductive qualitative content analysis was conducted according to the guidelines by Elo and Kyngäs. Thirty-nine articles were identified. Content analysis revealed 1 main category: "nurses' role in the decision-making process," with the 2 subcategories of "mediator" and "activator." The category and subcategories are influenced by the following generic categories: "being," "feeling," and "knowing," each of them constituted by 2 subcategories in their turn. Nurses perform the roles of activator and mediator. Their ability to establish good relationships and their attitudes enable the creation of teamwork and closeness to patients and family: relationships and attitudes are the subcategories of the "being" category. The category "feeling" represents the ways nurses experience the decision-making process, which can raise ethical and moral dilemmas and cause emotional responses. For these reasons, nurses have to create the right balance between personal-self and professional-self. The category "knowing" includes nurses' clinical and ethical knowledge about ANH. It emerges that deep clinical and ethical knowledge of ANH is necessary to provide consistent, adequate care at end of life.
Background: Communication in do not resuscitate (DNR) and artificial nutrition and hydration (ANH) at the end of life is a key component of advance care planning (ACP) which is essential for patients with advanced cancer to have cares concordant with their wishes. The SOP model (Shared decision making with Oncologists and Palliative care specialists) aimed to increase the rate of documentation on the preferences for DNR and ANH in patients with advanced cancer.
Methods: The SOP model was implemented in a national cancer treatment center in Taiwan from September 2016 to August 2018 for patients with advanced cancer visiting the oncology outpatient clinic. The framework was based on the model of shared decision making as “choice talk” initiated by oncologists with “option talk” and “decision talk” conducted by palliative care specialists.
Results: Among 375 eligible patients, 255 patients (68%) participated in the model testing with the mean age of 68.5 ± 14.7 years (mean ± SD). Comparing to 52.3% of DNR documentation among patients with advanced cancer who died in our hospital, the rate increased to 80.9% (206/255) after the decision talk in our model. Only 6.67% (n = 17) of the participants documented their preferences on ANH after the model. A worse Eastern Cooperative Oncology Group Performance Status was the only statistically significant associating factor with a higher rate of DNR documentation in the multiple logistic regression model.
Conclusions: The SOP model significantly increased the rate of DNR documentation in patients with advanced cancer in this pilot study. Dissemination of the model could help the patients to receive care that is concordant with their wishes and be useful for the countries having laws on ACP.
Food and water are life- and without these basic requirements, death will surely ensue. However, the provision of food or water alone will not in itself reverse or cure a disease or injury. When medically administered these essential nutrients are considered as either a stand-alone or adjunctive therapy that can enable patients to meet their nutrient needs.
[Début de l'article]
Objectives: Decision-making on artificial nutrition and hydration for patients terminally ill with cancer can be influenced by nurses' knowledge, attitudes, and behavioral intentions. A comprehensive 57-item questionnaire including six sections on the knowledge, attitudes, and behavioral intentions in providing artificial nutrition and hydration to patients terminally ill with cancer has been developed and used in Taiwan. However, the questionnaire needs further psychometric testing and adaptation for other cultures. This study aimed to cross-culturally adapt the questionnaire within the Italian cultural context and test its psychometric properties.
Methods: The questionnaire was translated into Italian and cross-culturally adapted per the recommendations by Beaton. A panel of 10 experts assessed content validity. A multicenter cross-sectional study was conducted with 411 nurses to test its psychometric properties. Dimensionality and construct validity were assessed through exploratory and confirmatory factor analyses. Reliability was estimated by composite and traditional methods, such as the Kuder Richardson formula-20 and Cronbach's a coefficients.
Results: The overall content validity index was 0.85. A confirmatory factor analysis was conducted for the knowledge section and the four attitudes sections. A preliminary analysis for the behavioral intentions section yielded non acceptable results. The internal consistency of the scales was adequate (range, 0.64-0.93).
Conclusions: This study constituted a notable advancement in the psychometric testing of the tool, and provides evidence that the Italian version of the questionnaire has acceptable psychometric characteristics for the sections on knowledge and attitudes.
Introduction: La nutrition artificielle en fin de vie est un sujet complexe. Elle amène souvent de nombreux questionnements, car elle est liée à de nombreux symboles se rapportant à la société, l’éthique, les soins et bien d’autres.
Matériel et méthode: Il s’agit d’une étude de cas autour d’une situation complexe de nutrition artificielle chez un adulte atteint de trisomie 21 dans un contexte palliatif.
Résultats: La décision d’entreprendre ou non une nutrition artificielle ne relève pas, dans ces situations complexes, d’une certitude médicale. Tous les acteurs soignants et non soignants de la prise en charge doivent alors interagir de façon à définir la solution la moins délétère pour le patient, car très souvent il existe des arguments pour et contre la nutrition. La souffrance et les représentations des proches sont également des éléments impératifs à prendre en compte et un accompagnement tout au long du processus décisionnel doit être réalisé.
Conclusion: La décision finale de nutrition artificielle en situation complexe doit être prise au terme d’une réflexion incluant tous les acteurs médicaux et non médicaux. Cette décision doit être expliquée à tous et un accompagnement adapté doit ensuite être proposé au patient et à ses proches ainsi qu’une réévaluation régulière des soins et du confort.
La question de l'euthanasie est un souci majeur, dans nos sociétés occidentales. Mais le débat public autour de cette question ressemble souvent à un dialogue de sourds, car il est quasiment impossible d'arriver à ce que les mots aient le même sens pour les différents protagonistes. De plus, isoler cette question de l'ensemble des interrogations sur la fin de vie n'est pas très juste. Plutôt que de continuer à débattre indéfiniment, et souvent stérilement, de ce sujet éthique brûlant, ma pratique des soins palliatifs m'a amenée à l'approfondir, par le biais d'une problématique clinique concrète, celle de l'alimentation par sonde soit en "fin de vie", soit aux "limites de l'âge et de la maladie".
There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.
AIM: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally.
METHODS: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic.
RESULTS: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care.
CONCLUSIONS: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families.
BACKGROUND: Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments.
AIM: This literature review aims to evaluate the evidence to support the use and non-use of ANH.
METHOD: A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices.
CONCLUSION: This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.
BACKGROUND: Nurses have an important role in maintaining a patient's nutrition near the end of life.
AIMS: To define nursing nutrition strategies with the person near the end of life and their families; systematise the elements to be considered in artificial nutrition decision-making and evaluate the nursing interventions' influence on therapeutic obstinacy risk.
METHODS: A sample of 11 articles were selected and the results considered strategies to promote oral feeding before artificial nutrition; the follow-up of the health-disease process by nurses and described the nurse's role as a privileged patient advocate in the defence of the ethical principles of decision-making. These principles consider symptomatology, prognosis, psychology and the emotional significance of nutrition.
CONCLUSION: Nurses are qualified professionals with a critical role in the patient's care due to the proximity they have with the patient; the evidence seems to show a relationship between nursing interventions and the reduction of the risk of therapeutic obstinacy; however, there are no studies in this specific area.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
INTRODUCTION: Standard advance care planning practice is yet to be established in Mainland, China, and little is known about feeding tube preferences among Chinese nursing home residents. The purpose of the study was to examine preferences for feeding tube use and its predictors among frail and cognitively competent nursing home residents in Wuhan, China.
METHOD: A cross-sectional sample of 682 nursing home residents were interviewed face-to-face using a structured questionnaire from 2012 to 2014.
RESULTS: A total of 54.5% of participants would accept feeding tube. Participants who reported greater quality of life (odds ratio [OR] = 2.67), having health insurance (OR = 2.09) were more willing to accept feeding tube. Participants with greater impairment in physical health (OR = 0.94) were less willing to accept it.
DISCUSSION: Health care professionals need to routinely assess nursing home residents' feeding tube preferences. It is imperative to consider sociocultural perspectives in understanding Chinese older adults' decision making for end-of-life care.
OBJECTIVE: This study aims (1) to assess physicians' attitudes toward different palliative end-of-life (EOL) practices in amyotrophic lateral sclerosis (ALS) care, including forgoing artificial nutrition and hydration (FANH), continuous sedation until death (CSD), and withdrawing invasive ventilation (WIV), and toward physician-assisted dying (PAD) including physician-assisted suicide and euthanasia and (2) to explore variables influencing these attitudes.
METHODS: We used two clinical vignettes depicting ALS patients in different stages of their disease progression to assess the influence of suffering (physical/psycho-existential) on attitudes toward WIV and the influence of suffering and prognosis (short-term/long-term) on attitudes toward FANH, CSD, and PAD.
RESULTS: 50 physicians from European ALS centers and neurological departments completed our survey. Short-term prognosis had a positive impact on attitudes toward offering FANH (p = 0.014) and CSD (p = 0.048) as well as on attitudes toward performing CSD (p = 0.036) and euthanasia (p = 0.023). Predominantly psycho-existential suffering was associated with a more favorable attitude toward WIV but influenced attitudes toward performing CSD negatively. Regression analysis showed that religiosity was associated with more reluctant attitudes toward palliative EOL practices and PAD, whereas training in palliative care was associated with more favorable attitudes toward palliative EOL practices only.
CONCLUSION: ALS physicians seem to acknowledge psycho-existential suffering as a highly acceptable motive for WIV but not CSD. Physicians appear to be comfortable with responding to the patient's requests, but more reluctant to assume a proactive role in the decision-making process. Palliative care training may support ALS physicians in these challenging situations.
In An NHS Trust and others v Y and another, the Supreme Court was asked to address the question of whether a court order must always be obtained before clinically assisted nutrition and hydration (CANH), which is keeping alive a person with a prolonged disorder of consciousness (PDOC). This case note explores the Court's decision to dispense with the need for such a court order and analyses that important change in approach from the perspective of the right to life protected in Article 2 European Convention on Human Rights (ECHR) as well as in the broader context of end of life decision-making.