Abstract
Flemming K, Turner V, Blosher S, et al.: The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review. Palliat Med 2020 [Epub ahead of print]; DOI:10.1177/0269216320908775
Despite being a terminal neurodegenerative disease, the role of palliative care is less recognized for motor neuron disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and caregivers is key to configuring optimal policy and health care services. The aim of this study was to explore the experiences of, and need for, palliative care of people with motor neuron disease and their informal caregivers across the disease trajectory. The design was a systematic review of qualitative research. Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, and Social Science Citation Index) using terms for motor neuron disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included articles were data were extracted and assessed for quality. Results demonstrated that a total of 41 articles were included, representing the experiences of 358 people with motor neuron disease and 369 caregivers. Analytical themes were developed detailing patients' and caregivers' experiences of living with motor neuron disease and of palliative care through its trajectory, including response to diagnosis, maintaining control, decision making during deterioration, engaging with professionals, planning for end-of-life care, and bereavement. The authors conclude that this review identified a considerable literature exploring the care needs of people with motor neuron disease and their caregivers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and caregiver experience of the disease, particularly at times of significant physical change.
Lee SA: Coronavirus anxiety scale: A brief mental health screener for COVID-19 related anxiety. Death Stud 2020 [Epub ahead of print]; DOI:10.1080/07481187.2020.1748481
Mental health concerns of people impacted by the coronavirus pandemic have not been adequately addressed. The objective of this study was to develop and evaluate the properties of the Coronavirus Anxiety Scale (CAS), which is a brief mental health screener to identify probable cases of dysfunctional anxiety associated with the COVID-19 crisis. This 5-item scale, which was based on 775 adults with anxiety over the coronavirus, demonstrated solid reliability and validity. Elevated CAS scores were found to be associated with coronavirus diagnosis, impairment, alcohol/drug coping, negative religious coping, extreme hopelessness, suicidal ideation, and attitudes toward President Trump and Chinese products. The CAS discriminates well between persons with and without dysfunctional anxiety using an optimized cut score of ≥9 (90% sensitivity and 85% specificity). These results support the CAS as an efficient and valid tool for clinical research and practice.
Solnica A, Barski L, Jotkowitz A: Allocation of scarce resources during the COVID-19 pandemic: A Jewish ethical perspective. J Med Ethics 2020 [Epub ahead of print]; DOI:10.1136/medethics-2020-106242
The novel COVID-19 pandemic has placed medical triage decision making in the spotlight. As life-saving ventilators become scarce, clinicians are being forced to allocate scarce resources in even the wealthiest countries. The pervasiveness of air travel and high rate of transmission have caused this pandemic to spread swiftly throughout the world. Ethical triage decisions are commonly based on the utilitarian approach of maximizing total benefits and life expectancy. The authors present triage guidelines from Italy, United States, and the UK, as well as the Jewish ethical prospective on medical triage. The Jewish tradition also recognizes the utilitarian approach but there is disagreement between the rabbis whether human discretion has any role in the allocation of scarce resources and triage decision making.
Wallace CL, Wladowski SP, Gibson A, et al.: Grief during the COVID-19 pandemic: Considerations for palliative care providers. J Pain Symptom Manage 2020 [Epub ahead of print]; DOI:10.1016/j.jpainsymman.2020.04.012
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. The authors describe the relationship of the COVID-19 pandemic with anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, they provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. The authors provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
Waldrop DP, McGinley JM: “I want to go home”: How location at death influences caregiver well-being in bereavement. Palliat Support Care 2020 [Epub ahead of print]; DOI:10.1017/S1478951520000176
Goal concordant or congruent care involves having expressed wishes upheld. Yet, the preferred location for end-of-life care may be unaddressed. Caregiver–patient congruence between preferred and actual locations of care may influence the quality of life in bereavement. This study aimed to explore how the congruence between caregiver–patient preferred and actual locations of death influenced well-being in bereavement. Mixed methods were employed. In-depth in-person interviews were conducted with 108 bereaved caregivers of a hospice patient ∼4 months after the death. An interview guide was used to collect quantitative and qualitative data: demographics, decision making, core bereavement items (CBI), health-related quality of life, and perspectives on the end-of-life experiences. Data were analyzed with a convergent mixed methods one-phase process. Results demonstrated that patient preference–actual location congruence occurred for 53%, caregiver preference–actual location congruence occurred for 74%, and caregiver–patient preference and location of death occurred for 48%. Participants who reported some type of incongruence demonstrated higher levels of distress, including more days of being physically and emotionally unwell and more intense bereavement symptoms. The acute separation subscale and CBI total scores demonstrated significant differences for participants who experienced incongruence compared with those who did not. Preference location congruence themes emerged: (1) caregiver–patient location congruence, (2) caregiver–patient location incongruence, and (3) location informed bereavement. The authors conclude that congruence between a dying person's preferred and actual locations at death has been considered good care. There has been little focus on the reciprocity between caregiver–patient wishes. Discussing preferences about the place of end-stage care may not make location congruence possible, but it can foster shared understanding and support for caregivers' sense of coherence and well-being in bereavement.
Kaye EC, Kiefer A, Blazin L, et al.: Bereaved parents, hope, and realism. Pediatrics 2020 [Epub ahead of print]; DOI:10.1542/peds.2019–2771
Parents of children with serious illness often maintain hope across a child's illness journey. Historically, the conflict between parental hope and prognostic acceptance has been described as a pendulum oscillating between antithetical states of awareness. In this commentary, bereaved parents partner with interdisciplinary pediatric palliative care clinicians to discuss and challenge the conventional theory in which hope and realism exist as diametrically opposing spaces within which parents vacillate. As parents and clinicians, the authors offer a reconceptualized model that validates a parent's ability to experience hope and prognostic awareness simultaneously, avoiding assumptions that conflate hope as misinterpretation or denial. In the discussion, the authors advocate for health care professionals to consider this framework when partnering with patients and families who carry coexisting hope and prognostic awareness in the context of a child's progressive illness.