Ethical considerations in neurology during the COVID-19 pandemic.

Coronavirus disease 2019 (COVID-19) pandemic has struck many countries and caused a great number of infected cases and death. Healthcare system across all countries is dealing with the increasing medical, social, and legal issues caused by the COVID-19 pandemic, and the standards of care are being altered. Admittedly, neurology units have been influenced greatly since the first days, as aggressive policies adopted by many hospitals caused eventual shut down of numerous neurologic wards. Considering these drastic alterations, traditional ethical principles have to be integrated with state-of-the-art ethical considerations. This review will consider different ethical aspects of care in neurologic patients during COVID-19 and how this challenging situation has affected standards of care in these patients.

To trach or not to trach, that is the question.

Progressive neuromuscular disease requires increasing degrees of respiratory support to sustain life. Each step from intermittent to continuous-and noninvasive to invasive-ventilation requires thoughtful consideration based on the goals of the patient and family, and the inherent benefits and burdens of the treatment. Tracheostomy, in particular, should not be viewed as an inevitable next step when less permanent or invasive methods prove insufficient. Like other modes of respiratory support, tracheostomy may represent a bridge to recovery of pulmonary function, or a stabilizing action in the hope that novel therapies may prove beneficial. In other situations, tracheostomy represents a destination therapy, necessitating consideration of the implications of chronic mechanical ventilation. Institutional, social, and financial considerations may affect decisions related to tracheostomy, as may implicit bias regarding quality of life. The complexity of such care and decisions highlight the need for optimal palliative care throughout the patient's life.

Elective ventilation to facilitate organ donation in infants with anencephaly: perinatal professionals' views and an ethical analysis.

AIM: Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice. METHODS: Anonymous online survey: demographics, ethical viewpoints and potential public/maternal perceptions (standard 5-part Likert scale and free text). DEMOGRAPHICS: 49 replies (38 female): 4 obstetricians, 14 neonatologists, 6 foetal clinicians, 23 nurses, 1 anaesthetist and 1 reproductive specialist. EXPERIENCE: 0.5-33 years (average 12). Twenty-one had experience of anencephalic delivery, and 10 reported pregnancy continued for religious reasons. ETHICS: (i) 73% thought anencephalic donation acceptable, of which 64% supported elective ventilation, 20% neutral and 16% disagreed. (ii) Provision of treatments not in infant's strict best interest to facilitate donation: 22% strongly agreed, 36% agreed, 33% neutral and 9% disagreed. (iii) Accept ventilation to permit donation if societal benefit: 53% agreed, 33% neutral and 13% disagreed. (iv) Public opinion: 59% disagreed anencephalic donation would harm public opinion about donation and 19% agreed. CONCLUSION: We found a supportive local environment for donation in the setting of anencephaly, including support for elective ventilation. Given this, and our ethical analysis, we recommend provision of organ donation information as part of palliative care counselling for women carrying a foetus with a condition likely to be fatal in infancy.

Are we allowed to discontinue medical treatment in this child?

One of the most difficult ethical dilemmas in pediatrics today arises when a child has complex chronic conditions that are not curable and cause discomfort with no prospect of any improvement on quality of life. In the context of medical futility, it is harmful to prolong medical treatment. The question is: How can medical treatment be discontinued when the child is not dependent on mechanical ventilation or ICU treatment? What is the appropriate palliative care and does it justify the use of sedatives or analgesics if this also might shorten life?

Ethical considerations with the management of congenital central hypoventilation syndrome.

Congenital central hypoventilation syndrome (CCHS) is a well-recognized disorder of the autonomic nervous system caused by mutations in the PHOX2B gene. The most characteristic feature is failure of ventilatory control, resulting in the need for respiratory support while asleep, and in some cases when awake also. Most cases present in infancy or early childhood. Technological advances allow patients with mild to moderate phenotypesto receive adequate support by non-invasive ventilation (NIV), or diaphragm pacing (or combination of the two) avoiding the need for long-term ventilation by tracheostomy. Daytime functioning of patients with CCHS who require sleep-time ventilation only is expected to be good, with some additional surveillance to ensure they don't accidentally fall asleep without respiratory support available. Some children with CCHS have other complications, such as Hirschprung's disease, learning difficulties, and cardiac arrhythmias (leading in some instances to heart block and the requirement for a pacemaker). In a few cases, patients can develop neurogenic malignancies. Parents bear a significant burden for the care of their child with CCHS including provision of NIV at home, close monitoring, and regular surveillance for complications. Information about patients with CCHS comes from databases in the United States and Europe, but these don't include infants or children for whom ventilator support was not offered. In this paper we use a case study to explore the ethical issues of provision of treatment, or non-treatment, of children with CCHS.

New approaches with surrogate decision makers.

A first principle in ethics consultation is that reasoning is essential. A second principle is that the religious and cultural views of patients and their surrogates are usually respected. What can be done when these principles collide-when patients or surrogates have religious or cultural views and beliefs that clinicians find unreasonable or even offensive? Mediation may provide some approaches to assist us in providing the most ethically appropriate assistance.

Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values.

Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children's interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family's perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members' lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

Ethical issues and palliative care in the cardiovascular intensive care unit.

Medical advances over the past 50 years have helped countless patients with advanced cardiac disease or who are critically ill in the intensive care unit (ICU), but have added to the ethical complexity of the care provided by clinicians, particularly at the end of life. Palliative care has the primary aim of improving symptom burden, quality of life, and the congruence of the medical plan with a patient's goals of care. This article explores ethical issues encountered in the cardiac ICU, discusses key analyses of these issues, and addresses how palliative care might assist medical teams in approaching these challenges.

When life-sustaining treatment is withdrawn and the patient doesn't die.

One of the most difficult decisions that doctors and parents must make is the decision to withdraw life-sustaining treatment. Doctors find it easier to withdraw treatments in situations where withdrawal will be rapidly fatal rather than in situations in which treatment withdrawal will lead to a prolonged dying process. Mechanical ventilation is usually such a treatment. Withdrawal of ventilation generally leads to the patient's rapid demise. Doctors may tell parents that death will occur quickly after a ventilator is withdrawn. But what happens when the doctors are wrong and a patient survives without life support? What should doctors do next? We present a case in which that happened and asked 3 experts to comment on the case. Stefan Kutzsche is a senior consultant in neonatology at Oslo University Hospital Ulleval in Norway. John Colin Partridge is a neonatologist and professor of pediatrics at University of California, San Francisco. Steven R. Leuthner is a neonatologist and professor of pediatrics and bioethics at the Medical College of Wisconsin. They each recommend slightly different approaches to this dilemma.

Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group.

QUESTION UNDER STUDY: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease with a poor prognosis. Survival and quality of life of ALS patients have improved through the implementation of multidisciplinary approaches, the use of percutaneous gastrostomy and of noninvasive (NIV) or invasive ventilation. The question of whether or not to propose invasive ventilation (by tracheostomy: TPPV) to ALS patients remains a matter of debate. METHODS: The study reviews the medical literature, the practice in three Swiss and two large French ALS expert centres and reports the results of a workgroup on invasive ventilation in ALS. RESULTS: Improved management of secretions and use of different interfaces allows NIV to be used 24-hours-a-day for prolonged periods, thus avoiding TPPV in many cases. TPPV is frequently initiated in emergency situations with lack of prior informed consent. TPPV appears associated with a lesser quality of life and a higher risk of institutionalisation than NIV. The high burden placed on caregivers who manage ALS patients is a major problem with a clear impact on their quality of life. CONCLUSIONS: Current practice in Switzerland and France tends to discourage the use of TPPV in ALS. Fear of a "locked-in syndrome", the high burden placed on caregivers, and unmasking cognitive disorders occurring in the evolution of ALS are some of the caveats when considering TPPV. Most decisions about TPPV are taken in emergency situations in the absence of advance directives. One exception is that of young motivated patients with predominantly bulbar disease who "fail" NIV.

[Cancer patients in the intensive care unit. Goals of therapy, ethics, and palliation]. / Der hämatologisch-onkologische Patient auf der Intensivstation. Therapieziele-Ethik-Palliation.

Providing critical care to cancer patients requires a high degree of practical multidisciplinary teamwork between intensivists and cancer specialists. Intensivists should have a solid basic knowledge of malignant diseases as well as of the typical complications of the underlying illness and its therapies. Hemato-oncologists should evaluate the transfer of these patients to the intensive care unit early in the course of emerging organ dysfunctions. Both parties should have a realistic impression of the short-term intensive care and long-term oncologic options and perspectives of the respective patient. Good cooperation between intensivists and cancer specialists is the basis for meaningful decisions on admission, planning of individual therapeutic aims, successful patient management, and tailored therapy, with a smooth transition into a palliative care setting whenever appropriate.

Advance statement of consent from patients with primary CNS tumours to organ donation and elective ventilation.

A deficit in the number of organs available for transplantation persists even with an increase in donation rates. One possible choice of donor for organs that appears under-referred and/or unaccepted is patients with primary brain tumours. In spite of advances in the treatment of high-grade primary central nervous system (CNS) tumours, the prognosis remains dire. A working group on organs from donors with primary CNS tumours showed that the risk of transmission is small and outweighs the benefits of waiting for a normal donor, in survival and organ life-years, with caveats. This paper explores the possibility that, if information on organ donation were made available to patients and their families with knowledge of their inevitable fate, perhaps some will choose to donate. It would be explained that to achieve this, elective ventilation would be performed in their final moments. This would obviate the consent question because of an advance statement. It is accepted that these are sensitive matters and there will be logistic issues. This will need discussion with the public and other professionals, but it could increase the number of donors and can be extrapolated to encompass other primary CNS tumours.

Integration of palliative care in chronic critical illness management.

Palliative care is an essential component of comprehensive care for all patients with chronic critical illness, including those receiving restorative or life-sustaining therapies. Core elements include alleviation of symptom distress, communication about care goals, alignment of treatment with the patient's values and preferences, transitional planning, and family support. Here we address strategies for assessment and management of symptoms, including pain, dyspnea, and depression, and for assisting patients to communicate while endotracheally intubated. We also discuss approaches to optimize communication among clinicians, patients, and families about care goals. Challenges for supporting families and planning for transitions between care settings are identified, while the value of interdisciplinary input is emphasized. We review "consultative" and "integrative" models for integrating palliative care and restorative critical care. Finally, we highlight key ethical issues that arise in the care of chronically critically ill patients and their families.

[Non invasive ventilation in the ICU for the neuromuscular patient: ethical issues]. / Ventilation non invasive et insuffisance respiratoire chronique d'origine neuromusculaire: implications pour l'intensiviste. Aspects ethiques.

Non-invasive mechanical ventilation in patients with chronic neuromuscular disorders is an effective tool for treating dyspnea or sleep disturbances often observed in such patients. So, NIV has to be considered as a palliative treatment and it must systematically be offered to these patients. Mechanical ventilation, non-invasive or invasive (via a trachesotomy) have to be considered systematically with patients and families at an earlier stages of these diseases in order to design a strategy in case of acute respiratory failure. In a second parent paper of this issue, we discuss the medico-legal implications of mechanical ventilation in neuromuscular failure, particularly the end-of-life aspects.

To transfer or not to transfer, that is the question.

An elderly patient who underwent a complex emergency abdominal aneurysmectomy two weeks ago is in coma, ventilator dependent, and in severe multisystem organ failure with a deteriorating prognostic index score. The family has become increasingly hostile towards Dr S. Cold, the consultants, the ICU nurses, and the janitorial staff. An estranged wife has called once to defer decision-making to the children. Three children intermittently visit and are openly critical of the medical care. One child is an ICU nurse supervisor at a small local suburban hospital. Dr Cold spoke to the family yesterday about instituting DNR orders and discontinuing some supportive therapy that was not working. The family first required another consultation and then demanded that Dr Cold transfer the patient to the hospital where the daughter works. The hospital does not provide tertiary care. A physician there is willing to assume responsibility. How should Dr Cold respond? A. Do as they request. B. Refuse outright. C. Call the accepting physician and explain why the case is futile. D. Take the matter to the ethics committee to prevent transfer. E. Call the wife and children to schedule an exploratory family conference and insist they come to a decision.