Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.

BACKGROUND: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. METHODS: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. RESULTS: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. CONCLUSIONS: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.

Addressing spirituality during critical illness: A review of current literature.

OBJECTIVES: The purpose of this review is to provide an overview of research on spirituality and religiosity in the intensive care setting that has been published since the 2004-2005 American College of Critical Care Medicine (ACCM) Clinical Practice Guidelines for the Support of Family in the Patient-Centered Intensive Care Unit with an emphasis on its application beyond palliative and end-of-life care. MATERIALS AND METHODS: ACCM 2004-2005 guidelines emphasized the importance of spiritual and religious support in the form of four specific recommendations: [1] assessment and incorporation of spiritual needs in ICU care plan; [2] spiritual care training for doctors and nurses; [3] physician review of interdisciplinary spiritual need assessments; and [4] honoring the requests of patients to pray with them. We reviewed 26 studies published from 2006 to 2016 and identified whether studies strengthened the grade of these recommendations. We further categorized findings of these studies to understand the roles of spirituality and religiosity in surrogate perceptions and decision-making and patient and family experience. CONCLUSIONS: Spiritual care has an essential role in the treatment of critically ill patients and families. Current literature offers few insights to support clinicians in navigating this often-challenging aspect of patient care and more research is needed.

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

Childhood immunization: when physicians and parents disagree.

Persistent fears about the safety and efficacy of vaccines, and whether immunization programs are still needed, have led a significant minority of parents to refuse vaccination. Are parents within their rights when refusing to consent to vaccination? How ought physicians respond? Focusing on routine childhood immunization, we consider the ethical, legal, and clinical issues raised by 3 aspects of parental vaccine refusal: (1) physician counseling; (2) parental decision-making; and (3) continuing the physician-patient relationship despite disagreement. We also suggest initiatives that could increase confidence in immunization programs.

Ethics in electrophysiology: can you handle the truth?

A case is presented examining the need to disclose the truth in cases where there is a question of device and personnel performance. This case examines the responsibilities of physicians to their patients and the community at large to disclose factual accounts of events, even in the case of medical error and potential liability.

El cuidado de las familias en las unidades de cuidados intensivos desde la perspectiva de Jean Watson / The caring of family members in the intensive care units from the Jean Watson perspective

Este artículo presenta una breve reflexión acerca del cuidado de las familias en las unidades de cuidados intensivos. Para abordar este tema se ha tomado como referencia a Jean Watson, una de las teóricas de enfermería más importantes de nuestros días. Se ha escogido a Watson porque, desde su teoría, se ha podido captar, a la perfección, la necesidad de contemplar a la familia en el cuidado holístico del paciente crítico. De este modo, se plantea llevar a cabo una investigación que explore el cuidado de los familiares del paciente crítico basada en la idea del cuidado que propone Watson en su teoría. Para comprender este planteamiento se analiza y evalúa la teoría del caring, según la guía elaborada por McEwen en el año 2007 (AU)

This article presents a brief reflection on the caring of families in the Intensive Care Units. To address this issue, Jean Watson, one of the most important theoreticians on nursing of our days, has been taken as a reference. Watson was chosen because it is possible to understand perfectly the need to contemplate the family within the holistic care of critical patients from his theory. Thus, it is proposed to carry out an investigation that studies the care of the family members of the critical patient based on the idea of Watson's caring theory. To understand this approach, the theory of caring is analyzed and evaluated according to the guide produced by McEwen in 2007 (AU)

End-of-life care education for psychiatric residents: attitudes, preparedness, and conceptualizations of dignity.

OBJECTIVE: The authors examined psychiatric residents' attitudes, perceived preparedness, experiences, and needs in end-of-life care education. They also examined how residents conceptualized good end-of-life care and dignity. METHODS: The authors conducted an electronic survey of 116 psychiatric residents at the University of Toronto. The survey had a mix of qualitative and quantitative questions. RESULTS: Eighty-two of 116 invited psychiatric residents participated for a response rate of 71%. With favorable attitudes, residents felt least prepared in existential, spiritual, cultural, and some psychological aspects of caring for dying patients. Trainees conceptualized dignity at the end of life in a way very similar to that of patients, including concerns of the mind, body, soul, relationships, and autonomy. Residents desired more longitudinal, contextualized training, particularly in the psychosocial, existential, and spiritual aspects of care. CONCLUSION: This is the first study to examine the end-of-life educational experience of psychiatric residents. Despite conceptualizing quality care and the construct of dignity similarly to dying patients, psychiatric residents feel poorly prepared to deliver such care, particularly the nonphysical aspects of caring for the dying. These results will inform curriculum development in end-of-life care for psychiatric residents, a complex area now considered a core competency.

Medical ethics and ethical dilemmas.

BACKGROUND: Ethical problems routinely arise in the hospital and outpatient practice settings and times of dilemma do occur such that practitioners and patients are at cross-roads where choice and decision making become difficult in terms of ethics. This paper attempts a synopsis of the basic principles of medical ethics, identifies some ethical dilemmas that doctors often encounter and discusses some strategies to address them as well as emphasizes the need for enhanced ethics education both for physicians and patients particularly in Nigeria. METHOD: Literature and computer programmes (Medline and PsychoInfo databases) were searched for relevant information. RESULT: The search showed that the fundamental principles suggested by ethicists to assist doctors to evaluate the ethics of a situation while making a decision include respect for autonomy, beneficence, non-maleficence and justice. Although the above principles do not give answers as to how to handle a particular situation, they serve as a guide to doctors on what principles ought to apply to actual circumstances. The principles sometimes conflict with each other leading to ethical dilemmas when applied to issues such as abortion, contraception, euthanasia, professional misconduct, confidentiality truth telling, professional relationship with relatives, religion, traditional medicine and business concerns. Resolution of dilemmas demand the best of the doctor's knowledge of relevant laws and ethics, his training and experience, his religious conviction and moral principles as well as his readiness to benefit from ethics consultation and the advice of his colleagues. CONCLUSION: Ethics education should begin from the impressionable age in homes, continued in the medical schools and after graduation to ensure that doctors develop good ethical practices and acquire the ability to effectively handle ethical dilemmas. Also, education of patients and sanction of unethical behaviour will reduce ethical dilemmas.

Respect in critical care: a foundational ethical principle.

Demonstrating respect is the hallmark of excellence in caring for critically ill patients and their families. Understanding the meaning of respect and the strategies that foster it are foundational for nurses as interdisciplinary healthcare professionals. Basically, respect is the act of esteeming another. Demonstrated by word and deed, it is fostered by attending to the whole person by involving the patient and family in decision making, providing family-centered care, bearing witness, and adopting a broader perspective marked by cultural humility. By creating processes that ensure everyone's views are heard, healthcare professionals as well as patients and their families are supported. One key process, known as the "Council Process," shifts dialogue from telling to discovering, from judging to inquiring; it neutralizes conjecture, fosters the acceptance of moral conflict, and protects the integrity of healthcare professionals and their organizations. Acknowledging respect as a foundational ethical principle is the first step toward relationally rich healthcare environments for patients, families, and professionals.

DNR versus DNT: clinical implications of a conceptual ambiguity: a case analysis.

Psychiatrists who practice psychosomatic medicine are routinely called upon to help resolve ethical dilemmas that arise in the care of patients near the end of their lives. Psychosomatic-medicine psychiatrists may be of unique value in these situations because of the clinical insights that we bring to the care of the dying patient. In particular, our subspecialty brings expertise related to the evaluation of decisional capacity of patients who are faced with accepting or declining end-of-life clinical interventions, such as resuscitation and intubation. In this first entry in a new bioethics case series in Psychosomatics, we will lay the groundwork for examining a complex patient case and provide an illustrative analysis of the end-of-life care issues that may be addressed by psychiatrists who practice psychosomatic medicine.

A personal reflection: the intimacy of dying: an act of presence.

The focus of critical care education is usually on the development of knowledge and skills needed to manage care for the critically ill patient. In today's intensive care units, what is also needed is the education and development of the skills that enable nurses the ability to enter into a relationship with the patients and families that touch the spirit, and provide another dimension to healing.

Disclosure of cancer diagnosis and prognosis in Northern Tanzania.

Whether to tell patients with cancer about their diagnoses and prognoses is a matter of great debate. While many argue the importance of giving this information to facilitate informed decision-making, others argue that this same information can extinguish hope. Although there is some evidence that disclosure of this information is now commonplace in many Northern and Western settings, there are very few data about this issue from resource-poor nations describing physicians' decision-making regarding whether to disclose this information. Using a combination of ethnographic and other qualitative methods including participant observation, semi-structured interviews, informal interviews, and a review of key documents in Northern Tanzania, we map some of the salient issues in this setting. Like their colleagues in many other parts of the world, Tanzanian physicians often withhold diagnostic and prognostic information from patients. In addition, however, to the cultural arguments often used to justify this practice, issues of treatment availability and patient poverty also influenced the physicians' disclosure practices. Expatriate and Tanzanian physicians practicing in Northern Tanzania often had different approaches to informing patients of their diagnoses and prognoses. Some Tanzanian physicians advocated the use of a "roundabout" approach to disclosure, arguing that it was more reflective of the normal mode of discourse in Tanzania than the more direct approach advocated by many of their expatriate colleagues. Expatriate physicians and some of their Tanzanian colleagues felt that such an indirect approach often left patients confused, or indeed, uninformed.