Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider.
CONTEXT: There has been a growing consensus that parenteral nutrition and hydration is to be forgone in terminally ill patients with cancer. However, it remains unclear what the beliefs and perceptions of parenteral nutrition and hydration by the family members are.
OBJECTIVES: To clarify their beliefs and perceptions and to examine the relationships between the factors of family members, their beliefs and perceptions, and their overall satisfaction with the care the patient received at the place of death.
METHODS: This study was performed as a part of the cross-sectional anonymous nationwide survey of the bereaved family members of cancer patients in Japan.
RESULTS: In total, 1001 questionnaires were sent and 610 were returned. Among these, 499 were analyzed. Regarding the prevalence of beliefs and perceptions about parenteral nutrition and hydration, 'When a patient cannot eat enough, parenteral hydration is needed' was the highest (87.7%), followed by 'The opinions of medical staff are important in the issue of parenteral nutrition and hydration', 'Parenteral hydration serves as a substitute for oral hydration', and 'If I were a patient and could not eat enough, parenteral hydration would be needed' (85.1, 81.0, and 80.0%, respectively). We extracted two concepts as follows: 'Belief that parenteral nutrition and hydration are beneficial' and 'Perceived need for parenteral nutrition and hydration'. They were not identified as independent determinants of overall care satisfaction.
CONCLUSION: This study showed that beliefs and perceptions about parenteral nutrition and hydration were important in the family members in palliative care.
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.
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.
Background: Recently, there has been a growing interest in the use of artificial hydration therapy (AHT) for patients with terminal cancer. The Japanese Society for Palliative Medicine published the guideline for AHT in 2007, and it was revised in 2013 based on the concept of cancer cachexia.
Objectives: The purpose of this study was to evaluate the effects of AHT for patients with terminal cancer having overhydration symptoms based on this revised guideline.
Methods: This is a before-and-after study. We retrospectively analyzed 121 patients, of the 523 patients with terminal cancer who were admitted during the last 4 years, who were receiving “inappropriate hydration therapy.” We performed guideline-based AHT and examined the effects on the alleviation of hydration-related symptoms, quality of life (QOL), patient satisfaction, and the feeling of benefit from AHT using a numeric rating scale, European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire-C30, satisfaction scale, and benefit scale on day 7 ± 1 compared to those at baseline.
Results: Hydration-related symptoms (nausea: 32, abdominal pain/distention: 35, peripheral edema: 42, and dyspnea: 28 cases) were significantly improved after performing guideline-based AHT (5.35 ± 1.26 4.00 ± 1.51, P = .002; 5.41 ± 1.44 4.12 ± 1.52; P = .005; 5.16 ± 1.38 3.29 ± 1.66; P < .0001; and 5.24 ± 1.22 4.21 ± 1.53, P = .002, respectively). The general QOL scores, overall satisfaction, and feeling of benefit were also significantly improved (2.67 ± 1.21 3.98 ± 1.55, P < .0001; 2.25 ± 1.35 3.48 ± 1.44, P < .0001; and 3.12 ± 1.24 4.31 ± 1.38, P = .0001, respectively).
Conclusions: An appropriate AHT could alleviate overhydration-related symptoms and improve the QOL, patient satisfaction, and feeling of benefit.
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.
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.
Palliative care should be part of the expertise of physician assistants caring for older adults. Palliative care is an integrated, holistic approach to patients with severe and terminal illness, whereas hospice is a defined benefit for patients with a life expectancy shorter than 6 months. If an older adult lacks decision-making capacity, a family member needs to act as surrogate. That person should use the principle of substituted judgment, advocating for what the patient would decide in that situation.
The question of whether to provide artificial nutrition and hydration (ANH) to a patient with terminal illness or at end of life has been debated over many years. Due to the nature of the question and the setting in which it presents, prospective trials are not feasible, and the health care professional is left to work with the patient and family to make decisions. This perspectives piece addresses the issue in a format designed to inform the reader as to the pertinent considerations around ANH. We briefly review significant historic, religious, ethical, and legal contributions to this discussion and physiologic underpinnings. We address the beliefs of patient, family, and health care providers surrounding this issue. Our goal is to provide a review of the considerations for health care providers as they address this issue with patients and families in the course of compassionate care.
Mr Justice Baker delivered the Oxford Shrieval Lecture 'A Matter of Life and Death' on 11 October 2016. The lecture created public controversies about who can authorise withdrawal of assisted nutrition and hydration (ANH) in disorders of consciousness (DOC). The law requires court permission in 'best interests' decisions before ANH withdrawal only in permanent vegetative state and minimally conscious state. Some clinicians favour abandoning the need for court approval on the basis that clinicians are already empowered to withdraw ANH in other common conditions of DOC (e.g. coma, neurological disorders, etc.) based on their best interests assessment without court oversight. We set out a rationale in support of court oversight of best interests decisions in ANH withdrawal intended to end life in any person with DOC (who will lack relevant decision-making capacity). This ensures the safety of the general public and the protection of vulnerable disabled persons in society.
OBJECTIVE: The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).
METHOD: This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.
RESULTS: Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity.
SIGNIFICANCE OF RESULTS: Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.
BACKGROUND: Dying is ubiquitous, yet the optimal management of hydration in the terminal phase is undetermined. Palliative care (PC) doctors' practices may act as a de facto measure of the benefits and burdens of artificial hydration (AH) use.
OBJECTIVE: To identify PC doctors' AH prescribing practices for imminently dying patients and possible influencing factors.
METHODS: An online survey of doctors belonging to the Australian and New Zealand Society of Palliative Medicine.
RESULTS: One hundred and thirty-six surveys were completed (30% response rate). AH use for patients in the prognosticated last week of life was low: 77% of respondents prescribed AH to 0-10% of patients and 3% of respondents prescribed to more than 20%. The most common reason for prescribing AH was palliation of family/patient concern rather than a physical symptom. The majority thought there was no effect of AH on survival, or on symptoms of fatigue (90%), reduced level of consciousness (88%), agitation (75%), nausea (69%), vomiting (68%), myoclonus (66%), thirst (65%), delirium (62%), cough (57%), or bowel obstruction (50%). AH was thought to worsen subcutaneous edema (94%), upper respiratory tract secretions (85%), ascites (73%), physical discomfort (72%), dyspnea (62%), and urinary symptoms (57%).
CONCLUSION: PC doctors from Australia and New Zealand reported lower use of AH for dying patients compared to international counterparts. The study showed high concordance in respondents' opinions: most thought AH was unlikely to provide clinical benefit and might cause harm. Further studies are needed to determine best practice of AH use at the end of life.