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      Opportunities for Nursing Science to Advance Patient Care in the Time of COVID‐19: A Palliative Care Perspective

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      , PhD, MBE, ACHPN, FAANP, FAAN 1 , , PhD, MBE, RN, FAAN 2 , , PhD, RN, FAAN, CIC 3 , , PhD, RN, FAAN, FPCN 4

      Journal of Nursing Scholarship

      John Wiley and Sons Inc.

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          Abstract

          Nursing science and scholarship have consistently improved patient care and outcomes throughout history's most daunting times. Nightingale introduced statistical surveillance during the Crimean War to decrease deaths and reduce risk for infection among wounded soldiers (Kopf, 1916). Nurses like Angie Lewis, working on Ward 5B in San Francisco—the only U.S. special care unit for patients with AIDS in the early 1980s—were at the frontline of applying emerging evidence for a marginalized population (Austin, 2014). Any public health emergency impacting the welfare of society—Ebola, Hurricane Katrina, domestic violence, war, refugee crises—has seen nurses using science to provide care and leadership and improve the human condition. The coronavirus disease 2019 (COVID‐19) pandemic is no different. It has been stated that “nursing research is coronavirus research” (D'Antonio, Naylor, & Aiken, 2020, p. 215). We could not agree more. For many years, nurse scientists have been actively engaged in executing and shaping a research agenda for improving serious illness care (Ferrell et al., 2017; Naylor et al., 2018). These impactful investigations include examining cancer pain management disparities (Meghani, Thompson, Chittams, Bruner, & Riegel, 2015; Meghani et al., 2020) and how best to integrate palliative care and infection management at the end of life (Stone et al., 2019). Many of the challenges made evident during the COVID‐19 emergency can build upon these existing strengths. COVID‐19 has raised dilemmas across all care levels, in both acute and community‐based settings. Physically, complex clinical presentations have posed issues with symptom management, rapid functional decline, high mortality rates, and increased intensive care utilization. Emotionally and socially, family dynamics and support structures have been destabilized through quarantining, distancing, isolation mandates, and visitor restrictions in hospitals. Healthcare access due to financial fallouts of the pandemic may worsen. Legal and ethical dilemmas have become apparent in the context of limited resources, speedy advance care planning, nurse burnout, and morally distressing clinical scenarios. There is an urgent need for accessible models of universal palliative care as well as discourse on how best to leverage the palliative nursing role (The Lancet, 2020; Radbruch et al., 2020; Rosa et al., in press, 2020). Given the growing burden of serious health‐related suffering worldwide (Sleeman et al., 2019) in conjunction with lessons we are just learning from COVID‐19, we strongly recommend a palliative care lens in advancing the nursing research agenda to meet the global population health needs of our times and anticipated future health crises. Palliative care is rooted in a whole‐person and inherently interdisciplinary approach to science and care delivery aligned with patient and family values to optimize quality of life and comfort while mitigating distress of all types. Palliative care research reflects a commitment to improving and protecting our collective human future and the most vulnerable among us. National Academies of Sciences, Engineering, and Medicine (2020) workshop proceedings underscore challenges in creating a robust palliative care workforce in the United States. Obstacles for improving palliative care in low‐ and middle‐income countries are even greater. Thus, a global research strategy may include baseline assessments of the state of palliative care or any models of serious illness care in a particular context, identifying key opportunities for palliative care advancement of education or clinical integration. During COVID‐19, high‐ and low‐resource countries alike are struggling with repurposing their existing palliative care models for an unanticipated crisis. In managing the unfolding and next public health crisis, we must investigate how to adapt the skills associated with palliative care training, such as effective communication, therapeutic clarification of patient and family goals, assistance with advance care planning in the setting of complex clinical considerations, and tending to spiritual, existential, cultural, and psychological needs. Scientists should explore how best to manage symptoms in the face of acute crisis while ensuring continuity of care for patients with chronic conditions for secondary and tertiary prevention to reduce the burden on weak health systems. Successful models of telemedicine exist and can work in low‐resource settings; those opportunities are being leveraged during COVID‐19 (Coombs, 2020). Future research should examine how best to deliver these new and emerging models of palliative care. Policy‐oriented research is needed that promotes affordable access to essential medications such as opioids to alleviate added suffering. In the absence of such access, alternative and integrative cultural approaches are needed to deliver high‐quality palliative care. It will also be essential to conduct educational research to determine the ideal methods of scaling training for nursing students and practicing clinicians in the palliative care skills necessary for care during a time of crises, such as a future pandemic (End‐of‐Life Nursing Education Consortium, 2020). Outcomes of online education and the best methods for teaching essential content such as communication skills, symptom management, or psychosocial support should be determined. How would future global healthcare delivery look if our science was systematically able to prepare all nurses and other clinicians with the skills needed to provide primary palliative care (i.e., palliative care as a core skill of all practitioners regardless of their practice setting) for all patients, at all stages of illness, alone or in conjunction with curative treatment? Palliative care science ushers in an emphasis on quality of life over quantity; on communication and connectivity over isolation; and on a whole‐person paradigm over a biomedical model. These considerations are particularly relevant in instances where cure is not possible, and the predominant focus is on improving the lived experience of patients and families. The collective hope is probably similar among healthcare workers worldwide: We will be able to do better in the next public health emergency. But the old saying holds true: Nothing changes if nothing changes. Goethe wrote, “Knowing is not enough; we must apply. Willing is not enough; we must do” (Jensen, n.d.). Nurse scientists and scholars have a unique opportunity to translate what we have learned about the shortcomings of healthcare during COVID‐19 into strategic actions and investigations that reflect the needs of a rapidly changing society. Investing in the global culture of palliative care scholarship for nurses and health professionals across practice domains is one of the most accessible approaches to ensuring healthcare systems and delivery mechanisms—beyond cure‐centric care—also reflect a person‐centered and value concordant ethos in the face of a future public health crisis.

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          Most cited references 15

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          The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions

          Summary Background Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions. Methods We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016–60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions. Findings By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060). Interpretation The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative. Funding Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London.
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            The key role of palliative care in response to the COVID-19 tsunami of suffering

            Coronavirus disease 2019 (COVID-19) has brought a tsunami of suffering that is devastating even well resourced countries. The disease has wreaked havoc on health systems and generated immense losses for families, communities, and economies, in addition to the growing death toll. Patients, caregivers, health-care providers, and health systems can benefit from the extensive knowledge of the palliative care community and by taking heed of long-standing admonitions to improve access to essential medicines, particularly opioids for the relief of breathlessness and pain.1, 2, 3 For low-income and middle-income countries (LMICs), the COVID-19 pandemic is likely to be even more severe than in high-income countries. There will probably be a high burden of COVID-19 in settings where there are weak health-care systems, lack of access to clean water and disinfectants, poor outbreak preparedness, severe shortages in personal protective equipment (PPE) and medical technology, challenges in enforcing physical distancing regulations, and reliance on informal employment. In such settings, it is expected that patients with severe COVID-19 who are unable to access the limited supply of intensive care resources or hospital beds will suffer and die at home, where they would be cared for by family members without PPE and access to relevant information, training, or palliative care resources. These caregivers will probably become infected and spread the disease. Additionally, if resources are reallocated to respond to COVID-19, patients with other life-limiting conditions could find themselves pushed out of their health-care settings with reduced access to opioid medication. During the COVID-19 pandemic, access to essential palliative care at end-of-life, including bereavement support, will be limited in the face of high demands in all countries. There will be increased isolation and suffering for palliative care patients and those who are bereaved.4, 5 Strict physical distancing regulations to slow disease transmission mean that patients who die from COVID-19 will usually be without loved ones by their side, who in turn will be unable to say goodbye or undertake traditional grieving rituals.4, 6 Providers of palliative care, including private hospices, will require additional human and financial resources. Basic palliative care training to all medical and nursing students has been the recommendation of the palliative care community for many years, 1 and had it been heeded, the health-care workforce would be more prepared for this pandemic. Online training is available to help prepare medical personnel to provide some palliative care at all levels of care. Now is the time to insist on rapid capacity-building for clinicians7, 8 in symptom control and management of end-of-life conversations.3, 9 Smartphones and telemedicine can facilitate at-home activities supported by health-care professionals and volunteers without physical contact for people who are isolating at home. 10 Immediate-term and long-term strategies to extend palliative care during and after the COVID-19 pandemic are shown in the panel . Panel Strategies to extend palliative care during and after the COVID-19 pandemic Immediate responsiveness to adapt to pandemic parameters Optimise cooperation and coordination • Initiate formal and informal pathways for collective action and exchange by governments, bilateral and multilateral organisations, civil society, and the private sector based on the principle of solidarity. Preserve continuity of care • Ensure the availability and rational use of personal protective equipment and encourage self-care among palliative care health-care professionals and all caregivers. • Ensure an adequate and balanced supply of opioid medication to all patients for relief of breathlessness and pain by instituting the simplified procedures of the International Narcotics Control Board. • Conduct rapid training for all medical personnel to address additional palliative care needs of COVID-19 patients. • Engage technology partners to equip community health workers with telehealth capabilities to virtually conduct home-based palliative care activities. • Enable families to virtually visit and partake in health decisions with loved ones, especially at the end of life to address the almost universal fear of dying alone. Enhance social support • Enlist informal networks of community-based and faith-based organisations to mobilise and train a citizen volunteer workforce that is ready and able to teleconnect with patients in need of basic social support, delivering on palliative care's cornerstone feature—compassionate care. Assess emerging needs • Link with contact tracing activities and testing sites to collect data from the general public to better understand the social dimension of pandemic suffering. Long-term preparedness strategies that embed palliative care into the core of medicine • Expand all medical, nursing, social work, and community health worker curricula, as well as training of clergy, to include core palliative care competencies. • Establish standard and resource-stratified palliative care guidelines and protocols for different stages of a pandemic and based on rapidly evolving situations and scenarios. Support for health-care workers and strategies, such as peer counselling, regular check-ins with social support networks, self-monitoring and pacing, and working in teams, to mitigate the impact of continued exposure to death and dying, breathlessness, desperation, and suffering need to be deployed across health systems. These strategies need to include the palliative care workforce worldwide because their patient groups are usually at increased risk from COVID-19 and the least likely to be triaged into intensive care.4, 11 Adoption of triage for clinical decision making, including who will receive ventilator support, marks a deterioration in use of person-centred care in favour of utilitarian thinking. 5 Palliative care rejects the comparative valuation of human life and upholds the allocation of resources using the key ethical principles of justice and beneficence such that previous treatment adherence should not be a consideration in defining access to care. 12 Universal do-not-resuscitate orders should be rejected. The cornerstones of clinical decision making must be strict differentiation of clinicians who provide care from those who make triage decisions 5 and patient-centred assessment of the medical indication, applied in conjunction with the will of the patient. 13 Most importantly, patients triaged not to receive intensive care or ventilatory support require adequate relief of suffering, especially for breathlessness. 14 In COVID-19 patients with breathlessness, clinical experience suggests opioids—a common palliative care intervention—can be safe and effective and should be widely available. 15 The relief of the COVID-19-related, huge additional burden of serious health-related suffering will require opioids and especially inexpensive, off-patent injectable and immediate release oral morphine. 16 Yet the poorest 50% of people in the world have access to only 1% of the globally distributed opioids in morphine-equivalent and as a result access to opioid medication in many countries, even for palliative care, is inadequate.1, 17 Patients in LMICs with respiratory failure from COVID-19 will be largely unable to access opioids, as pre-existing scarcity will be exacerbated by increased use of opioids in hospital intensive-care units. We propose that LMICs need to rapidly adopt two strategies. First, national opioid medication reserves have to be increased to build up a stockpile for the COVID-19 pandemic. The International Narcotics Control Board (INCB) has called on governments to ensure continued access to controlled medicines including opioids during this pandemic, reminding them that in acute emergencies it is possible to use simplified procedures for the export, transportation, and provision of opioid medications. 18 To avoid cost escalation, pooled purchasing platforms need to be adopted, including making information on price-points public and accessible.1, 19 Second, rapid, basic training on rational use of opioid medications must be offered to all primary caregivers and health-care professionals in emergency departments and intensive-care units and much of this can be done online.20, 21 In this most challenging time, health responders can take advantage of palliative care know-how to focus on compassionate care and dignity, provide rational access to essential opioid medicines, and mitigate social isolation at the end of life and caregiver distress. The call to fully incorporate palliative care into global health1, 22 could finally be realised in the urgency of the pandemic. If so, the COVID-19 pandemic will have catalysed medicine to better alleviate suffering in life and death. 23
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              Palliative care and the COVID-19 pandemic

               The Lancet (2020)
              Palliative care services are under-resourced at the best of times. The 2017 Lancet Commission on Palliative Care and Pain Relief described the widespread lack of access to inexpensive and effective interventions as a travesty of justice. And these are not the best of times. As health systems become strained under COVID-19, providing safe and effective palliative care, including end-of-life care, becomes especially vital and especially difficult. Some doctors, short of resources, might have to decide who can receive critical care and who cannot. For patients who won't survive, high-quality palliative care needs to be provided at least. But COVID-19 makes this more difficult. Time is short when patients deteriorate quickly, health professionals are overworked, isolation is mandated, and families are advised not to touch or even be in the same room as loved ones. This scenario will be compounded most in low-income and middle-income countries where shortages of both critical care and palliative care services are greatest. Continuing community-based palliative care is also harder to do safely. Many patients who need it are at heightened risk from COVID-19, protective equipment is running short, and surging deaths could overwhelm usual service provision. WHO has issued guidance on how to maintain essential health services during the pandemic, highlighting immunisation, maternal care, emergency care, and chronic diseases among others, but there was no mention of palliative care. This was an oversight. Indeed, palliative care ought to be an explicit part of national and international response plans for COVID-19. Practical steps can be taken: ensure access to drugs (such as opioids) and protective equipment, consider a greater use of telemedicine and video, discuss advance care plans, provide better training and preparation across the health workforce, and embrace the role of lay carers and the wider community. A pandemic is a cause and powerful amplifier of suffering, through physical illness and death, through stresses and anxieties, and through financial and social instability. Alleviation of that suffering, in all its forms, needs to be a key part of the response. © 2020 Fabrizio Villa/Getty Images 2020 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
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                Author and article information

                Contributors
                wrosa@nursing.upenn.edu
                Journal
                J Nurs Scholarsh
                J Nurs Scholarsh
                10.1111/(ISSN)1547-5069
                JNU
                Journal of Nursing Scholarship
                John Wiley and Sons Inc. (Hoboken )
                1527-6546
                1547-5069
                17 June 2020
                Affiliations
                [ 1 ] Robert Wood Johnson Foundation Future of Nursing Scholar University of Pennsylvania School of Nursing Philadelphia PA USA
                [ 2 ] Professor & Term Chair of Palliative Care University of Pennsylvania School of Nursing Philadelphia PA USA
                [ 3 ] Centennial Professor of Health Policy, Director Center for Health Policy, Director Center for Improving Palliative Care for Vulnerable Adults with MCC (CIPC) Columbia University School of Nursing New York NY
                [ 4 ] Professor and Director of Nursing Research City of Hope Medical Center Duarte CA
                Article
                JNU12570
                10.1111/jnu.12570
                7323245
                © 2020 Sigma Theta Tau International

                This article is being made freely available through PubMed Central as part of the COVID-19 public health emergency response. It can be used for unrestricted research re-use and analysis in any form or by any means with acknowledgement of the original source, for the duration of the public health emergency.

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                Funded by: NIH/National Institute of Nursing Research (NINR)
                Award ID: R01NR017853
                Award ID: P20NR018072
                Award ID: R01NR013687
                Funded by: Cambia Health Foundation
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                Guest Editorial
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