Journal: Journal of pain and symptom management
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
The COVID-19 pandemic is spreading across the world. Many patients will not be suitable for mechanical ventilation owing to the underlying health conditions, and they will require a conservative approach including palliative care management for their important symptom burden.
Palliative care is gaining ground globally and is endorsed in high level policy commitments, but service provision, supporting policies, education and funding are incommensurate with rapidly growing need.
Cases of COVID-19 are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesise evidence for the role and response of palliative care and hospice teams to viral epi/pandemics, to inform the COVID-19 pandemic response. We conducted a rapid systematic review according to PRISMA guidelines in five databases. Of 3094 papers identified, ten were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the United States and Italy. All had an observational design. Findings were synthesised using a previously proposed framework according to ‘systems’ (policies, training and protocols, communication and coordination, data), ‘staff’ (deployment, skill mix, resilience), ‘space’ (community provision, use of technology) and ‘stuff’ (medicines and equipment, personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by: 1) responding rapidly and flexibly; 2) ensuring protocols for symptom management are available, and training non-specialists in their use; 3) being involved in triage; 4) considering shifting resources into the community; 5) considering redeploying volunteers to provide psychosocial and bereavement care; 6) facilitating camaraderie among staff and adopt measures to deal with stress; 7) using technology to communicate with patients and carers; 8) adopting standardised data collection systems to inform operational changes and improve care.
The International Association for Hospice and Palliative Care (IAHPC) developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief.
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organisational and systemic approach which includes access to informal and professional support.
Compassion is frequently referenced as a hallmark of quality care by patients, health care providers, health care administrators and policy makers. Despite its putative centrality, including its institution in recent health care reform, an empirical understanding based on the perspectives of patients, the recipients of compassion, is lacking–making compassion one of the most referenced aspects of quality care that we know little about.
CONTEXT: Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. OBJECTIVES: This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. METHODS: Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO(®)) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. RESULTS: Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. CONCLUSION: This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use.
There is a lack of longitudinal studies investigating fatigue from before cancer treatment to long after successful cancer treatment.
Cutaneous T-cell lymphoma (CTCL), although rare, is associated with a significant symptom burden. Pruritus appears to be one of the most prominent and disturbing symptoms.