Ethical Framework for Nutrition Support Resource Allocation During Shortages: Lessons From COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has impacted all aspects of our population. The "Troubling Trichotomy" of what can be done technologically, what should be done ethically, and what must be done legally is a reality during these unusual circumstances. Recent ethical considerations regarding allocation of scarce resources, such as mechanical ventilators, have been proposed. These can apply to other disciplines such as nutrition support, although decisions regarding nutrition support have a diminished potential for devastating outcomes. The principal values and goals leading to an ethical framework for a uniform, fair, and objective approach are reviewed in this article, with a focus on nutrition support. Some historical aspects of shortages in nutrition supplies and products during normal circumstances, as well as others during national crises, are outlined. The development and implementation of protocols using a scoring system seems best addressed by multidisciplinary ethics and triage committees with synergistic but disparate functions. Triage committees should alleviate the burdens of unilateral decisions by the healthcare team caring for patients. The treating team should make every attempt to have patients and the public at large update or execute/develop advance directives. Legal considerations, as the third component of the Troubling Trichotomy, are of some concern when rationing care. The likelihood that criminal or civil charges could be brought against individual healthcare professionals or institutions can be minimized, if fair protocols are uniformly applied and deliberations well documented.

Beneficência e Não-maleficência em Fim de Vida: O Caso da Nutrição e Hidratação Artificiais / Beneficence and Non-maleficence at the End of Life: The Case of Artificial Nutrition and Hydration / Beneficencia y no maleficencia al final de la vida: el caso de la nutrición e hidratación artificial

Com os avanços da medicina moderna e do conhecimento tecnológico, aumentou o número de pessoas com doenças crônicas e progressivas. Também as opções de tratar se diversificaram e, assim, adiar a morte tornou-se possível. Quando é necessário proceder à tomada de decisão sobre nutrição e hidratação artificiais, em pessoas doentes em cuidados paliativos, estas mesmas decisões apresentam dilemas éticos complexos que envolvem os princípios de beneficência, e não-maleficência.

With advances of modern medicine and technological knowledge, the number of people with chronic and progressive diseases has increased. The treatment options have also increased so hastening death has become possible. When it is necessary to make a decision about artificial nutrition and hydration in patients in palliative care, these same decisions present complex ethical dilemmas involving the principles of beneficence and nonmaleficence.

Con los avances de la medicina moderna y el conocimiento tecnológico, el número de personas con enfermedades crónicas y progresivas ha aumentado. Las opciones de tratamiento también se diversificaron y, por lo tanto, posponer la muerte se hizo posible. Cuando es necesario tomar una decisión sobre nutrición e hidratación artificial, en personas enfermas en cuidados paliativos, estas mismas decisiones presentan complejos dilemas éticos que involucran los principios de beneficencia y no maleficencia.

Role of the Nutrition Support Clinician on a Hospital Bioethics Committee.

Hospital bioethics committees comprise a diverse group of healthcare professionals to deal with ethical issues within the institution that arise during patient care. The nutrition support clinicians (NSCs) have an important role on a bioethics committee because of their knowledge and expertise of different nutrition routes and the benefits vs burdens and risks of these modalities, both enteral and parenteral nutrition. Ethics expertise is built on an understanding of ethical principles, when applied in clinical ethics, using critical thinking to prevent ethical dilemmas and to assist in healthcare decision making with a focus on patient-centered care. The NSCs have the opportunity to address ethics during direct patient care with their participation in the intensive care unit interprofessional rounds, family meetings, and surrogate meetings. Evident in ethical dilemmas is often the lack of advance care planning by patients and their family members concerning healthcare wishes for when the individual is unable to communicate their preferences for life-sustaining therapies, including nutrition support. NSCs, as hospital bioethics committee members, are able to support the initiative of National Healthcare Decisions Day to help educate other healthcare clinicians and the public about the importance of advance care planning with communication of healthcare wishes and completion of an advance directive. Components addressed in the article are incorporated into a comprehensive ethics case study, highlighting the role of NSCs.

[Nutrition at the End of Life - Ethical Aspects]. / Ernährung am Lebensende ­ ethische Aspekte.

Nutritional problems at the end of life are of multifactorial origin, they require an interdisciplinary and multiprofessional approach. A basic precondition in deciding a nutritional therapeutic intervention is a valid medical indication. Fundamental ethical principles have to be respected.Another relevant question is if the nutritional therapeutic intervention will serve a meaningful, attainable goal in accordance with the patient's individual preferences and whether the expected benefit outweighs the potential risks. Particularly in older patients with a higher risk of cognitive impairment there is the question of the patient's ability to communicate his/her personal preferences, if he/she is able to give informed consent.Nutritional problems, particularly the refusal to eat can present a burdensome situation for the patient's carers. The potential reasons and causes for these problems have to be evaluated by an interdisciplinary assessment and medical differential diagnosis. This process has to involve the patient, his family and carers, ethical and palliative care counsel should be available.The topic of artificial feeding by means of a percutaneous gastrostomy - its relevance in the end of life situation, particularly in advanced stages of dementia is also addressed.

Relevancia del soporte nutricional especializado en las declaraciones de voluntades anticipadas. Experiencia de un centro hospitalario de especialidades / Relevance of specialized nutritional support in the statements of advance directives. A specialty hospital experience

Introducción: la declaración de voluntades anticipadas (DVA) es un documento que contiene las preferencias sobre los cuidados y tratamientos sanitarios que se desea recibir cuando no se tenga capacidad para expresarlos. Objetivo: estudiar el contenido de las DVA inscritas en la sede del Registro de Voluntades Anticipadas del Hospital Universitario Puerta del Mar, respecto al soporte nutricional especializado (SNE) e hidratación en el periodo de noviembre 2013 a diciembre 2015. Método: estudio transversal realizado sobre el contenido de las DVA inscritas en el modelo del Decreto 59/2012. Se estudian 9 variables de relevancia relacionadas con el SNE e hidratación en las DVA. Resultados: se analizan 414 DVA de las que el 60% corresponden a mujeres. La edad media de los declarantes es 55,2 años. El 41,7% inscribieron su DVA por automotivación. El 84,78% no desea recibir nutrición parenteral, el 91,06% rechaza la alimentación mediante tubo de gastrostomía y el 89,37% no desea recibir la sonda nasogástrica. La hidratación es rechazada por el 71,26%. Las tres posibles opciones de SNE dependen significativamente de la edad del declarante (p < 0,001) pero no así la hidratación. Ambos, SNE e hidratación, sí se asociaron significativamente con los motivos para inscribir las voluntades anticipadas (p < 0,001). Conclusiones: la edad es el principal factor que condiciona la opción de aceptación o rechazo de SNE. Por el contrario, la elección de la hidratación no está condicionada por la edad. Los motivos por los que se inscriben los otorgantes son otro determinante en la elección de si desean recibir o no SNE e hidratación (AU)

Introduction: The Statement of Advance Directives (SAD) is a written document that contains the preferences for health care and treatments desired to receive when the capacity to express is lost. Objective: To study the content of SAD registered in the office of Register of Advance Directives of the Hospital Universitario Puerta del Mar regarding Specialized Nutritional Support (SNS) and hydration in the period from November 2013 to December 2015. Method: Cross-sectional study on the content of the SAD written in the form of Decree 59/2012. Nine relevant variables related with SNS-H are studied in the DVA. Results: 414 SAD are analysed, 60% of which belong to women. The average age is 55.2 years. 41.7% of the SAD was registered by self-motivation. 84.78% do not wish to receive parenteral nutrition, 91.06% reject feeding through gastrostomy intubation, and 89.37% do not want to receive the nasogastric intubation. Hydration is rejected by 71.25%. The three possible options of SNS depend on the age of the declarant with statistical significance (p < 0.001), but not so for hydration. Both SNE and hydration are significantly associated with the reasons for the registration of Advance Directives (p < 0.001). Conclusions: Age is the main factor that determines the choice of accepting or rejecting SNS. By contrast, the choice of hydration is not conditioned by age. The reasons that drive respondents to register DVA is another determinant in the choice of whether to receive or not SNE and hydration (AU)

Baby O and the Withdrawal of Life-Sustaining Medical Treatment in the Devastated Neonate: A Review of Clinical, Ethical, and Legal Issues.

The discontinuation of life sustaining medical treatment (LSMT) in severely and permanently impaired neonates, especially artificial nutrition and hydration (ANH) is subject to uncertainty and controversy. Definitive clinical guidelines are lacking, clinical research is limited, ethical disagreement is commonplace, and while case and statutory law provide legal underpinning for the practice in defined circumstances, uncertainty in this realm likely influences clinical practice. We use the case of a neurologically devastated neonate to highlight and review these arenas, and show how, using available legal, ethical, and clinical standards and practice, the case of Baby O was resolved, and to underline the need for further research in neonatal palliative care.

Hospital Malnutrition Related to Fasting and Underfeeding: Is It an Ethical Issue?

Hospital malnutrition is a relevant clinical issue present in about 50% of patients that is associated with increased morbidity, mortality, and cost of care. Because of the relation of malnutrition with chronic and acute inflammatory processes secondary to disease, nutrition therapy is considered an important medical treatment. However, there is little discussion about the impact of another critical issue related to hospital malnutrition, that is, lack of appropriate food or nutrition therapy given to the patients. Unnecessary fasting practices and the use of inappropriate nutrition prescriptions result in underfeeding that can be a related or direct cause of hospital malnutrition, independent of disease or inflammatory state. Suboptimal prescription of oral, enteral, and parenteral nutrition should be analyzed and discussed from an ethical perspective since this practice has the potential to harm patients. In addition, absence or inadequate provision of nutrition may present barriers for improved patient outcomes and could be prevented by simply recognizing lack of knowledge, skills, or experience in nutrition and entrusting nutrition prescription to interdisciplinary teams with clinicians well prepared in nutrition sciences. This article reviews potential barriers to the prevention or treatment of hospital malnutrition and proposes specific actions that can help clinicians to overcome and implement optimal nutrition not just as medical therapy but also as a basic comfort care that may help patients nutritionally, clinically, physically, and emotionally.

Home Nutrition Support: Ethics and Reimbursement.

Ethical dilemmas challenge providers on both sides of the hospital and clinic doors. In addition to establishing the nutrition care plan and guiding the client into the home setting with safe and effective parenteral or enteral nutrition therapy, procuring home nutrition support involves meeting documentation requirements and verifying that clients meet reimbursement criteria for home therapy based on third-party payer criteria. Providers have entered a realm for which training has been scarce and they face moral and ethical dilemmas involving serving as patient advocates, possibly stretching the truth to fit the clinical documentation to criteria vs maintaining professional integrity. Nutrition research and evidence-based practice have outpaced modifications to policies including Medicare's national and local coverage determinations, the bulk of which have not seen revisions in 32 years. This review elucidates clinical dilemmas and urges a political call to action to advocate for changes in current, outdated requirements for reimbursement. Given the current healthcare environment and trend toward expedited hospital stays, patients may be better served (and nourished) with revised guidelines.

Have the Answers to Common Legal Questions Concerning Nutrition Support Changed Over the Past Decade? 10 Questions for 10 Years.

Clinical nutrition specialists (CNSs) are often confronted with technological, ethical, and legal questions, that is, what can be done technologically, what should be done ethically, and what must be done legally, which conflict at times. The conflict represents a "troubling trichotomy" as discussed in the lead article of this issue of Nutrition in Clinical Practice (NCP). During Clinical Nutrition Week in 2006, a symposium covering these 3 topics was presented, and later that year, an article covering the same topic was published in NCP In this article, we revisit several legal questions/issues that were raised 10 years ago and discuss current answers and approaches. Some of the answers remain unchanged. Other answers have been modified by additional legislation, court decisions, or regulations. In addition, new questions/issues have arisen. Some of the most common questions regarding nutrition support involve the following: liability, informed consent, medical decisional incapacity vs legal competence, advance directive specificity, surrogate decision making, physician orders for life-sustaining treatment and electronic medical orders for life-sustaining treatment, legal definition of death, patient vs family decision making, the noncompliant patient, and elder abuse obligations. In the current healthcare environment, these questions and issues are best addressed via a transdisciplinary team that focuses on function rather than form. The CNS can play a pivotal role in dealing with these challenges by applying the acronym ACT: being Accountable and Communicating with all stakeholders while actively participating as an integral part of the transdisciplinary Team.

The Troubling Trichotomy 10 Years Later: Where Are We Now?

A decade ago, "Nutrition Support and The Troubling Trichotomy: A Call To Action" was published in this journal, identifying existing conflicts among technological, ethical, and legal aspects of nutrition support therapy, particularly in terminal or end-of-life situations. Over the past 10 years, the American Society for Parenteral and Enteral Nutrition and others have responded to the action call. A "state of the trichotomy" reveals that while much has been achieved, differences in all 3 aspects will continue to exist due to their dynamic and ever-changing states. The technology arena has made it possible to increase the delivery of nutrition support in alternative settings with the use of telemedicine and social media. Critical/crucial conversations and earlier declarations of individual wishes for care and treatment while having decision-making capacity have been enhanced with the focus on patient-centered and family-centered care. The definition of death as brain death has been challenged in at least one instance. Conflicts between the state's interests and the individual's interests have added to recent legal controversies. Notwithstanding the progress made over the past 10 years, several challenges remain. The future challenges presented by the Troubling Trichotomy can be best confronted if we ACT-Accountability, Communication, and Teamwork. The focus of teamwork should move from multidisciplinary and interdisciplinary teams to transdisciplinary teams, reflecting the shift to function rather than form presented by the new healthcare environment. The transdisciplinary team will be able address the opportunities of the Troubling Trichotomy in the next decade by incorporating the 12 Cs, as detailed in the article.

ESPEN guideline on ethical aspects of artificial nutrition and hydration.

BACKGROUND: The worldwide debate over the use of artificial nutrition and hydration remains controversial although the scientific and medical facts are unequivocal. Artificial nutrition and hydration are a medical intervention, requiring an indication, a therapeutic goal and the will (consent) of the competent patient. METHODS: The guideline was developed by an international multidisciplinary working group based on the main aspects of the Guideline on "Ethical and Legal Aspects of Artificial Nutrition" published 2013 by the German Society for Nutritional Medicine (DGEM) after conducting a review of specific current literature. The text was extended and introduced a broader view in particular on the impact of culture and religion. The results were discussed at the ESPEN Congress in Lisbon 2015 and accepted in an online survey among ESPEN members. RESULTS: The ESPEN Guideline on Ethical Aspects of Artificial Nutrition and Hydration is focused on the adult patient and provides a critical summary for physicians and caregivers. Special consideration is given to end of life issues and palliative medicine; to dementia and to specific situations like nursing care or the intensive care unit. The respect for autonomy is an important focus of the guideline as well as the careful wording to be used in the communication with patients and families. The other principles of Bioethics like beneficence, non-maleficence and justice are presented in the context of artificial nutrition and hydration. In this respect the withholding and withdrawing of artificial nutrition and/or hydration is discussed. Due to increasingly multicultural societies and the need for awareness of different values and beliefs an elaborated chapter is dedicated to cultural and religious issues and nutrition. Last but not least topics like voluntary refusal of nutrition and fluids, and forced feeding of competent persons (persons on hunger strike) is included in the guideline.

Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences.

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient's best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients' families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or how they experience the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients.

Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

BACKGROUND: Some people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team. METHODS: A three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process? RESULTS: Decision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: (1) Risks, burdens and benefits; (2) Treatment goals; (3) Normative ethical values; (4) Interested parties. CONCLUSIONS: Decision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of 'who decides' cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum.

Ethical issues with artificial nutrition of children with degenerative brain diseases.

This report highlights viewpoints of the authors and comments from the auditory at a workshop, held during the 14th international Congress on neuronal ceroid lipofuscinoses (NCL) in Córdoba, Argentina, on ethical aspects of artificial nutrition in children with degenerative brain diseases. The discussion centers on what constitutes the best interest of a patient whose personality was immature before the onset of the disease, who has become demented during its course and is unable to communicate his/her own positions and desires. There is wide consensus that in a child with advanced disease who cannot be fed naturally, decisions to withhold nutrition or to institute or stop artificial nutrition, should only be made by parents (or their representatives) who are adequately prepared on an intellectual and emotional level. We try to show that such decisions are highly individual but can be made in a rationally and emotionally acceptable way after a careful and prolonged dialogue between families and professionals. A checklist summarizes important considerations. This article is part of a Special Issue entitled: "Current Research on the Neuronal Ceroid Lipofuscinoses (Batten Disease)".