Abstract
van Breemen C, Johnston J, Carwana M, Louie P: Serious illness conversations in pediatrics: A case review. Children 2020 [e-pub ahead of time]; DOI: 10.3390/children7080102.
The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their patient's life to inform future care decisions. In July 2017, specialist pediatric palliative care clinicians at Canuck Place Children's Hospice (CPCH) (Vancouver, BC, Canada), adapted the original guide to use with parents of children with serious illness. This tool is referred to as the Serious Illness Conversation Guide-Peds (SICG-Peds). Using the SICG-Peds, along with enhanced communication skills, can help illuminate the parents' (child's) understanding of illness and the values they hold. Expanding the application of the guide will promote goal-based, efficient, comprehensive, and consistent communication between families and clinicians and help ensure that seriously ill children receive care that is tailored to their needs through the disease trajectory. This article explores the guide through the lens of a case study. The steps—seeking permission, assessing understanding, sharing prognosis, and exploring key topics (hopes, fears, strengths, critical abilities, and trade-offs)—as well as formulating clinician recommendations, are described.
Virdun C, Luckett T, Lorenz K, et al.: Hospital patients' perspectives on what is essential to enable optimal palliative care: A qualitative study. Palliat Med 2020 [e-pub ahead of time]; DOI: 10.1177/0269216320947570.
The majority of expected deaths in high-income countries occur in the hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalized are scarce, and few studies conducted in the southern hemisphere. The aim of this exploratory qualitative study was to seek the perspectives of Australian patients living with palliative care needs about their recent hospitalization experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalized. Participants were recruited through five hospitals in New South Wales, Australia. Results demonstrated that 21 participants took part in the study. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including (1) effective communication and shared decision making; (2) expert care; (3) adequate environment for care; (4) family involvement in care provision; (5) financial affairs and maintenance of sense of self/identity; (6) minimizing burden; (7) respectful and compassionate care; (8) trust and confidence in clinicians; and (9) maintenance of patient safety. Two additional domains were noted to be important: nutritional needs and access to medical and nursing specialists. The authors conclude that taking a person-centered focus has provided a deeper understanding of how to strengthen inpatient palliative care practices, and that future study is needed to translate the body of evidence on patient priorities into policy reforms and practice points.
Boissier F, Seegers V, Seguin A, et al.: Assessing physicians' and nurses' experience of dying and death in the ICU: development of the CAESAR-P and the CAESAR-N instruments. Crit Care 2020;24:521.
As increasing number of deaths occur in the intensive care unit (ICU), studies have sought to describe, understand, and improve end-of-life care in this setting. Most of these studies are centered on the patient's and/or the relatives' experience. This study aimed to develop an instrument designed to assess the experience of physicians and nurses of patients who died in the ICU, using a mixed methodology and validated in a prospective multicenter study. Physicians and nurses of patients who died in 41 ICUs completed the job strain and the CAESAR questionnaire within 24 hours after the patient's death. The psychometric validation was conducted using two datasets: a learning and a reliability cohort. Results demonstrated that among the 475 patients included in the main cohort, 398 nurse and 417 physician scores were analyzed. The global score was high for both nurses and physicians. Factors associated with higher CAESAR-Nurse scores were absence of conflict with physicians, pain control handled with physicians, death disclosed to the family at the bedside, and invasive care not performed. As assessed by the job strain instrument, low decision control was associated with lower CAESAR score. Factors associated with higher CAESAR-Physician scores were room dedicated to family information, information delivered together by nurse and physician, families systematically informed of the end-of-life (EOL) decision, involvement of the nurse during implementation of the EOL decision, and open visitation. They were also higher when a decision to withdraw or withhold treatment was made, no cardiopulmonary resuscitation was performed, and the death was disclosed to the family at the bedside. The authors conclude that they have described and validated a new instrument for assessing the experience of physicians and nurses involved in EOL in the ICU, and that their study shows important areas for improving practices.
Waran E, William L: Navigating the complexities of voluntary assisted dying in palliative care. Med J Aust 2020;213; DOI: 10.5694/mja2.50729.
The Voluntary Assisted Dying Act 2017 came into effect in Victoria on June 19, 2019. The authors present the case of an inpatient death under the Voluntary Assisted Dying Act in their health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement.
Keeton VF, Trask J, Whitney R, Bell JF: Overburdened and underprepared: Medical/nursing task performance among informal caregivers in the United States. J Geront Nurs 2020;46:25–35.
Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In this study, using data from the caregiving in the U.S. 2015 survey (n = 1248), the authors examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, and burden of care). The authors found that overall, 58% of caregivers performed medical/nursing tasks. Compared with those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role.