Publications by authors named "Robert Macauley"

While Comfort Feeding Only is appropriate for patients with advanced dementia, its emphasis on assiduous hand-feeding that may prolong life for years fails to accommodate the preferences of those who do not want to continue living with this illness. Some have proposed advance directives to completely halt the provision of oral nutrition and hydration once a person has reached an advanced stage of dementia. However, these directives may fail to address patients' discomfort, caregivers' obligations, or current care and regulatory standards when patients reside in facilities.

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Despite its growing popularity, the implementation of Trauma-Informed Care (TIC) in standard medical practices remains insufficient. A workshop, featuring role-playing scenarios and individual self-reflection exercises, was developed to enhance compassion among health care providers. The workshop was created by a multidisciplinary team of community pediatricians, pediatric intensivists, psychologists, and palliative care physicians, was structured around key elements and principles of TIC, and was based on actual patient encounters.

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Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in children, for whom there is a stronger presumption toward aggressive treatment. This, along with impressive cure rates for pediatric cancer, can help explain why children typically survive for a longer period of time following initial palliative care consultation.

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Learning that one's child is seriously ill can be devastating, requiring families to decide when and how to share information about diagnosis and prognosis with their child. In most cases, this disclosure is made thoughtfully and collaboratively with the medical team. Some parents, however, may be concerned that disclosure will take away their child's hope, cause emotional pain, or exceed the child's capacity for understanding.

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As the care of patients with serious illness increasingly emphasizes clarifying goals of care, exploring quality of life, and minimizing patients' symptom burden, voluntarily stopping eating and drinking (VSED) has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines-and none specific to the American medical system-even as public awareness and the number of inquiries regarding this action increase. In addition to the ethical questions raised by the practice and support of VSED, there are also clinical, logistical, institutional, social, religious, spiritual, and administrative considerations for clinicians who are asked to respond to patients' inquiries about VSED and who discuss this option in end-of-life care.

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Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans.

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Background: Hospitals faced unprecedented scarcity of resources without parallel in modern times during the COVID-19 pandemic. This scarcity led healthcare systems and states to develop or modify scarce resource allocation guidelines that could be implemented during "crisis standards of care" (CSC). CSC describes a significant change in healthcare operations and the level of care provided during a public health emergency.

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Article Synopsis
  • Outcomes after CPR are often poor, leading researchers to explore an "informed assent" (IA) approach that simplifies the decision-making process for chronic patients and their families about whether to pursue CPR, focusing on their goals of care.
  • The research involved a three-stage approach, starting with focus groups to assess acceptability, followed by a pilot randomized controlled trial that indicated feasibility and some success in changing CPR preferences among participants.
  • Initial findings suggest the IA framework is generally accepted but works best with hospitalized patients; ongoing research will further evaluate its effectiveness and applicability in seriously ill older adults.
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Context: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas.

Objectives: To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition.

Methods: Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition.

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Background: End of life (EOL) care planning is important for aging adults given the growing prevalence of chronic medical conditions in the US. The Portable Orders for Life Sustaining Treatment (POLST) program promotes communication between clinicians and patients with advanced illness about EOL treatment preferences. Despite growing resources for EOL care, utilization remains unequal based on social determinants of health (SDOH), including race, language, urbanization, and education.

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Background: The aim of this study was to assess how frequently epileptologists discuss advance directives regarding intubation and mechanical ventilation with patients with epilepsy. A secondary aim was to understand the attitudes of neurologists toward discussion and implementation of such advance directives in epilepsy care.

Methods: An online study survey was developed and distributed by email invitation to 210 neurologists at academic epilepsy and neurophysiology programs in the United States in December 2018.

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Increasing use of social media by patients and clinicians creates opportunities as well as dilemmas for pediatricians, who must recognize the inherent ethical and legal complexity of these communication platforms and maintain professionalism in all contexts. Social media can be a useful tool in the practice of medicine by educating both physicians and patients, expanding access to health care, identifying high-risk behaviors, contributing to research, promoting networking and online support, enhancing advocacy, and nurturing professional compassion. At the same time, there are confidentiality, privacy, professionalism, and boundary issues that need to be considered whenever potential interactions occur between physicians and patients via social media.

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Palliative care (PC) clinicians treat seriously ill patients who are at increased risk for compromised decision-making capacity (DMC). These patients face profound and complex questions about which treatments to accept and which to decline. PC clinicians, therefore, have the especially difficult task of performing thorough, fair, and accurate DMC assessments in the face of the complex effects of terminal illness, which may be complicated by fluctuating acute medical conditions, mental illness, or cognitive dysfunction.

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The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one's "death warrant," adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent.

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Background: Tumour hypoxia is associated with metastatic disease, and while there have been many mechanisms proposed for why tumour hypoxia is associated with metastatic disease, it remains unclear whether one precise mechanism is the key reason or several in concert. Somatic evolution drives cancer progression and treatment resistance, fuelled not only by genetic and epigenetic mutation but also by selection from interactions between tumour cells, normal cells and physical micro-environment. Ecological habitats influence evolutionary dynamics, but the impact on tempo of evolution is less clear.

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Female genital mutilation or cutting (FGM/C) involves medically unnecessary cutting of parts or all of the external female genitalia. It is outlawed in the United States and much of the world but is still known to occur in more than 30 countries. FGM/C most often is performed on children, from infancy to adolescence, and has significant morbidity and mortality.

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Background: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.

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The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations.

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The coronavirus disease 2019 pandemic has affected nearly every aspect of medicine and raises numerous moral dilemmas for clinicians. Foremost of these quandaries is how to delineate and implement crisis standards of care and, specifically, how to consider how health care resources should be distributed in times of shortage. We review basic principles of disaster planning and resource stewardship with ethical relevance for this and future public health crises, explore the role of illness severity scoring systems and their limitations and potential contribution to health disparities, and consider the role for exceptionally resource-intensive interventions.

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Objective: Hypoplastic left heart syndrome is a single ventricle defect. While staged surgical palliative treatments have revolutionised care, patients with hypoplastic left heart syndrome continue to have significant morbidity and mortality. In 2017, the National Pediatric Cardiology Quality Improvement Collaborative recommended all single ventricle patients to receive a prenatal palliative care consult.

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Many patients believe that cardiopulmonary resuscitation (CPR) is more likely to be successful than it really is in clinical practice. Even when working with accurate information, some nevertheless remain resolute in demanding maximal treatment. They maintain that even if survival after cardiac arrest with CPR is extremely low, the fact remains that it is still greater than the probability of survival after cardiac arrest CPR (ie, zero).

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