Palliative nurses play a primary and significant role in supporting the broader health care system. Right now, palliative nurses worldwide are providing an extra layer of support to nurses and care teams in emergency departments, intensive care units, skilled nursing facilities, and long-term-care environments. In the face of coronavirus disease 2019 (COVID-19), the palliative nursing workforce is delivering essential support and specialist services pertaining to symptom management, ethics and decision-making, communication, and care at the time of death, among others. As this pandemic continues to evolve, it has become clearer now more than ever that the work of the palliative nurse is indispensable as issues surrounding serious illness, dying, and death are no longer taboo but have become continuous threads of daily mainstream media, politics, and policy-making.
These authors argue that strategic and consistent investment in palliative nurses during COVID-19 and expanding their role and scope of work will strengthen the broader health system's resilience to respond effectively to COVID-19, as well as future pandemics and public health crises. While literature on the myriad health impacts of COVID-19 is rapidly emerging, the attention to palliative nurses in the broader COVID-19 discussion is a crucial gap requiring urgent attention. This article aims to address this gap. A compilation of resources and recommendations from palliative care and other key organizations for ongoing education and well-being support is also provided.
INCREASED NEED FOR PALLIATIVE NURSING DURING COVID-19
COVID-19 is a global pandemic, first identified in Wuhan, China.1-3 Widespread transmission of COVID-19 is translating into large numbers of people needing medical care simultaneously.4 As of May 5, more than 3.8 million people globally had been confirmed COVID-19 positive and over 267 000 had subsequently died.5
With the daily number of confirmed COVID-19 cases rising exponentially, social fabrics on a global scale are being worn by panic, uncertainty, fear, and the dire need for greater numbers of medical professionals to adequately address the crisis.6,7 At the same time, health systems are striving to increase capacity to meet public health demands,8 fairly distribute sparse resources,9 address the complex ethical challenges posed by the pandemic,10 and support health care workers to lower viral exposure and maintain the health of their families.11,12 In fact, there have been few health events in modern times that have caught health care professionals as unprepared to effectively tackle the clinical needs of patients and communities as COVID-19.
The COVID-19 pandemic has intensified the strain on seriously ill patients and their families, amplifying suffering through increased functional decline; grief, bereavement, and death; stresses and anxieties; and economic and social instability. Alleviation of that suffering—in all its forms—is a key part of the palliative nurse workforce response.13 Patients and their families will undoubtedly face symptoms, emotional distress, and complex decision-making in the face of uncertainty and limited options, and no one is more prepared to address these needs than palliative care clinicians.4 Although the palliative care professional community is readily adapting strategies to provide high-quality services to those in both acute and community-based settings,14,15 there remains an opportunity to provide specific recommendations for leveraging the role of palliative nurses during this unprecedented health crisis.
Considering the Broader Global Nursing Workforce
The pandemic has placed immense pressures on the entire global nursing workforce. A recent Wall Street Journal commentary16 stated nurses are “marinat[ing] in risk as they spend more time than anyone else tending to patients.” Increased nurse-to-patient face time is concerning when greater exposure to COVID-19–positive patients puts nurses at greater risk, particularly for older clinicians (>55 years)17 and given the widespread deficits of personal protective equipment. Nurses are the frontline agents tending to the suffering of the patient: psychologically, emotionally, spiritually, socially, and physically. Palliative nurses are confronted with the challenge of providing compassionate, relationship-based care in the context of a viral pandemic characterized by rapid decompensation and symptom exacerbation, embedded in a culture of social distancing.
There are roughly 28 million nurses working globally, constituting approximately 59% of the health sector and delivering up to 90% of care services.18 While all nurses should be included in the practice-based, scientific, and scholarly dialogues surrounding safe COVID-19 mitigation strategies, palliative nurses are uniquely trained in goals-of-care communication, clinical ethical considerations, symptom management, and end-of-life care and are more likely to be consulted as experts on these pertinent issues during the evolving crisis. Thus, palliative nurses are at disproportionate risk of moral distress, moral injury, and poor well-being given these responsibilities and skill sets.
PALLIATIVE CARE IN HUMANITARIAN CRISES
The contribution of palliative care providers to alleviate serious health-related suffering is of utmost importance during this pandemic. Access to safe, high-quality palliative care throughout the life span has long been deemed a fundamental human right that should be available as a component of universal health coverage for all people everywhere.19,20 The COVID-19 crisis increases the urgency to ensure palliative care delivery for those in need. Throughout past humanitarian emergencies, palliative care services have returned dignity and reduced the suffering of individuals and communities through holistic, person-centered care and timely symptom management to optimize quality of life.
During the Ebola crisis, clinicians advocated for sustainable mechanisms of palliative care delivery and education to fill the dire gap of relevant services.21 In the face of migration emergencies, individuals with serious illness exposed to persecution and violence have high-level and complex emotional, mental, and spiritual needs against a backdrop of physical symptoms that require palliative care input.22 Now, during the COVID-19 pandemic, the world is seeing how racial differences23 and social inequities24,25 influence who gets infected, how they manage symptoms, and the impact of varying levels of access to care on associated health outcomes. No matter the level of health system strain brought about by COVID-19, all patients must be cared for through strategic planning amid the surge in palliative care needs.26
Resilience Amid Crisis
Palliative care professionals are exposed to death and dying on a daily basis, and this experience has become all too common during the time of COVID-19. However, their exposure to trauma may result in positive changes, such as resilience and posttraumatic growth, which they cultivate within the patients and families for whom they provide care. Positive changes resulting from secondary traumatic stress may occur in the individual's psychological functioning, including self-perception, interpersonal relationships, and philosophy of life.27 This effect is known as vicarious posttraumatic growth.28 To promote the perception of benefits and meaning among patients and families facing COVID-19, resilience and posttraumatic growth can be protective factors favoring adaptation and effective coping.
In the era of COVID-19, palliative nurses can help patients and families be deliberate in navigating the middle of the resilience process, the part between “getting through” and “looking back.”29 The pandemic has already shown us how dramatically and quickly the health system and the world at large can shift in its approach to population health and individual patient needs.29 Palliative nurses are central to facilitating growth and resilience during this public health crisis as patients and families learn to be intentional about overcoming the unexpected adversity, trauma, and significant sources of stress in their daily lives.
RECOMMENDATIONS FOR OPTIMIZING THE PALLIATIVE NURSING ROLE NOW
Based on the need for palliative care during previous humanitarian emergencies, there are several evidence-based recommendations that can be extrapolated to the COVID-19 response, particularly in resource-constrained settings. These include concerted attention to palliative care throughout organizational policies and humanitarian responses at local and international levels; “just-in-time” training of primary teams and health care responders; training of community-based palliative providers to ensure timely and ongoing surveillance, counseling, and spiritual/psychosocial support; reliable referral systems and pathways to specialist palliative care consultation when possible; access to necessary medications and local system infrastructure to support storage, distribution, provision, and so on; and readily available palliative care beds in hospitals and clinics wherever feasible.30 Palliative care—now more than ever—should be integrated into mainstream health care delivery and further upstream in the illness process to ensure all frontline providers have a degree of comfort managing symptoms, communicating empathically, and guiding important care discussions in a time of high stress and uncertainty. In circumstances where individuals have a preexisting life-limiting illness, such as heart disease, cancer, or chronic obstructive pulmonary disease, this is of critical importance.
Palliative nurses should leverage their local and global influence and leadership to ensure universal palliative care access during COVID-19 and beyond. Rosa and colleagues31 recommended 4 primary ways nurses can play advocacy roles to advance this ideal (Table 1). Promoting nurse leadership in palliative care delivery is in alignment with current major global health agendas seeking to advance health equity and inclusivity and improve person-centered care mechanisms worldwide.32-34
Expanding the Palliative Nurse Role
Palliative nurses—as well as clinical nurses across specialties—need to be engaged as fully autonomous and contributory members of the interdisciplinary team. Supporting nurses' autonomy and independence as clinicians requires (1) organizations to ensure policies that promote them working to the full extent of their license; (2) multidisciplinary team members who understand and value the role and contributions of nurses; (3) healthy team dynamics that promote task sharing, shifting, and frequent rotation of leadership responsibilities; and (4) palliative nurse involvement in system and organizational decision-making for policy and protocol advancement.
The palliative nurse role should be expanded in accordance with both patient needs and palliative nurse capacity, for example, ensuring clinical nurse prescribing privileges to promote effective relief of symptomatic distress.20 In many low- and middle-income countries (LMICs), nurses are already performing these roles without recognition or supervision. Additional examples of such privileges may include activating protocols established by health care organizations to treat pain, dyspnea, constipation, and delirium.35 Empowering nurses to lead patient rounds and initiate team debriefings is likely to both improve team morale and increase transparency to efficiently identify patient needs during COVID-19.
Pain and Symptom Management
Effective pain and symptom management during COVID-19 is imperative. One of the most important roles palliative nurses will play in this pandemic is addressing the multidimensional suffering patients and their families will experience at the intersection of physical symptoms, emotional distress, and social isolation. Although some organizations have hurriedly developed basic guidelines for managing crisis symptoms associated with this disease, there are no widely accepted guidelines for chronic pain or complex symptom management amid COVID-19. However, international initiatives are collating expert opinion to provide recommendations focused on continuity of care and access to analgesics and opioids for those in need of moderate to severe pain relief, optimizing telehealth access, concomitant use of steroids and anti-inflammatory medications as appropriate, prioritizing procedural and multimodal interventions as available, ensuring safe triage, promoting effective patient flow and staffing, and implementing risk mitigation strategies.36,37
Given the pulmonary, gastrointestinal, neurocognitive, and other symptoms that evolve quickly in the setting of COVID-19, patients' distress must be attended to promptly. Considering which patients may be at higher risk of baseline symptom exacerbation in the context of COVID-19 is essential. For example, the majority of patients with cancer are likely to experience pain as one of the most negative symptoms throughout their disease trajectory and into survivorship.38-40 Pain management becomes a crucial priority in such populations who may also confront symptomatic flares while receiving active treatment, such as chemotherapy or radiotherapy. The experience of COVID-19 may further escalate subjective pain and other symptoms. In addition, understanding what symptoms can be managed remotely versus those that need immediate and potentially lifesaving attention is critical.
Symptom severity at end of life is heightened for those suffering from COVID-19, often requiring high-dose analgesic and sedative regimens. Palliative nurses should be partnering with clinical nurses and interdisciplinary teams to support primary palliative care, particularly in the realm of assessment and treatment and in the context of each patient's individual care goals.
Advance Care Planning
Palliative nurses can play a vital role in promoting early completion of advance care planning (ACP) during the COVID-19 pandemic. Given the multiple populations at higher risk of COVID-19 complications, including older persons, the immunocompromised, and those with multimorbidity, ACP conversations are needed as early as possible in the care trajectory. During the week of March 15, 2020, more than 4000 requests for the advance directive tool, “Five Wishes,” were tracked, a 10-fold increase from baseline.41 (“Five Wishes” is now being offered free of charge to individuals online during COVID-19 at https://fivewishes.org/five-wishes-covid-19).
Palliative nurses should be leading goals-of-care communication, eliciting patient understanding about risk and intervention options given a diagnosis of COVID-19, and helping to identify the values and priorities of individuals, families, and communities. Such discussions are likely to encompass decisions around ventilation, pressor support, intensive care unit escalation, and patient readiness for hospice. Given that nurses spend substantively more time with patients than other professions and have consistently been noted as the most trusted profession, they likely possess relational insights with patients and family caregivers that can lead to timely and informed ACP decision-making in a timely manner to reduce unnecessary hospital admissions and increase access to transitional care needs.
Palliative nurses are also influential in encouraging families as early as possible to have difficult but necessary conversations with loved ones about their wishes for care if they become critically ill.42 Additionally, given resource constraints, widespread do-not-resuscitate orders for COVID-19–positive patients who meet certain clinical criteria, and a potential spike in rationing practices, palliative nurses need to feel comfortable guiding ethical discussions and helping to resolve clinical disagreements. These clinicians should be partnering with ethics committees as well as primary teams to anticipate ethical challenges, encourage open communication for patient and family members to express worries and concerns, and ensure potential moral distress of partner colleagues is identified and addressed in a supportive manner.
Communication and Whole-Person Care
During the current COVID-19 era, many hospitals and other health facilities are restricting visitors to inpatient units, and there have been a number of media reports of patients dying alone. Palliative nurses should work closely with inpatient and community-based primary and palliative care team members to ensure continuous dialogue with family members, ensuring timely updates about the patient's clinical condition and assessing how they, as caregivers, are coping with separation and grief. Doing so will help build trust, open channels of communication, potentially minimize caregiver distress, and assist with anticipatory grief and bereavement.
The use of technology (eg, smart pads and other institution-specific platforms) should be encouraged to address patient isolation, improve communication with family and the interdisciplinary team, and improve assessment of personal or disease-related needs. Spiritual, religious, and other end-of-life care needs should be elicited upon consultation for the COVID-19–positive patient to ensure proactive person-centered care, even when the physical presence of the palliative nurse at the time of death may not be feasible. Additionally, facilities heavily impacted by COVID-19, such as long-term care, skilled nursing, and assisted living, would benefit from palliative nursing input to mitigate patient distress and assist in supporting staff members with coping strategies.
Advanced Practice Palliative Nurses
The expanded roles of advanced practice registered nurses (APRNs) must be supported at institutional, local, national, and international levels where applicable. Consistently, on the policy and legislative front, there are urgent calls for supporting a robust and interdisciplinary workforce to be responsive to the needs of the volume of serious illness patients. For example, the Coalition to Transform Advanced Care sent a letter to congressional leaders on March 18 of this year to authorize nurse practitioners to be able to provide the initial certification of patients for hospice care, in addition to their current abilities to recertify patients and serve as attending providers.43
In addition, several state governments in the United States have suspended mandatory collaborative practice agreements to promote full practice authority and increase prescriptive authority for nurse practitioners. The Drug Enforcement Agency has also permitted the prescription of scheduled medications with telemedicine consultations.44 These policy changes elevate the nursing contribution, alleviate palliative care team stress by promoting task shifting and advanced practice nurse autonomy, and increase workload sharing and flexibility for health care and palliative care teams.
The independent practices of palliative nurse practitioners and other APRNs (eg, clinical nurse specialists) must continue to be supported by institutions, collaborating interdisciplinary colleagues, and local and national policy stakeholders. Palliative APRNs should be leveraging telehealth approaches both inpatient and in the community and educating themselves about billing changes, flexibilities, and waivers from Medicare, Medicaid, and other commercial carriers during this public health emergency.45-47 COVID-19 becomes an opportunity for APRNs to role model practice expertise and further demonstrate their long-standing excellence in patient outcomes amid the pandemic as an argument for continued full practice authority across a number of fields and in the future. Such scope of practice expansions should be sustained after the COVID-19 crisis to avoid piecemeal reforms during emergencies.
Collaboration With Hospice
Overburdened acute care settings should be leveraging the services of hospices as much as possible throughout the COVID-19 pandemic. Hospice nurses serve as extremely valuable resources of clinical knowledge and may support in-hospital palliative care and primary teams with necessary transitional and hospice qualification information. Nurses working in hospice may also be able to assist with community-based telemonitoring of the seriously ill who are symptomatic with COVID-19 and can offer additional psychosocial support to families and caregivers in bereavement. However, optimizing the contribution of hospice nurses will require rapid policy changes to ensure reimbursement for the full extent of services hospices should be able to provide during COVID-19.
Global Nursing Partnerships
Lastly, palliative nurses should seek to promote partnership and mutual learning among nurses in different countries.31,34 Low- and middle-income country health care workers are managing ever-increasing aging populations coupled with an expanding number of chronic conditions such as diabetes, heart disease, and kidney failure.48 The associated care concerns and financial implications are affecting quality of life for these individuals and their families, communities, and overly strained governments. In LMICs, infectious diseases such as HIV/AIDS and malaria are draining existing resources.48 Thus, partnering across countries will assist in the creation of new knowledge, accelerate translation from research to practice, and continue to establish the evidence-based value of palliative care on a global scale.32-34
There are a number of lessons to be learned from nurses in LMICs and their experiences during previous health disasters, which can be used immediately in the COVID-19 palliative nursing context worldwide. For instance, nurses working in the Ebola viral hemorrhagic fever outbreak in West Africa between 2014 and 2015 identified personal and professional needs prior to, during, and after deployment with the intent to improve future health emergency responses.49 Although these nurses were faced with cross-cultural and global health issues during their assignments, the findings maintain relevance in the COVID-19 acute care and community-based settings and are focused mostly on improved education, communication, teamwork, and mental health support. Based on the experiences of nurses working with Ebola patients,49 consider the following, adapted to the current context:
- Prior to delivering care in the COVID-19 environment (particularly for new or student nurses currently transitioning to practice): palliative nurses should seek additional training related to leading goals of care and ethical discussions as needed; gain knowledge of institutional resources to educate patients/families on escalation interventions available (eg, intensive care unit–level care); and stay informed about empirical evidence related to likely outcomes for patients with serious illness or other high-risk factors who test positive for COVID-19.
- During the COVID-19 response: need for collaborative engagement of palliative nurses across communication, symptom management, and ethical domains; call for respect of all team member contributions and skills; flexible workload, responsibility, and task shifting for all team members; frequent opportunities for debriefing.
- Following the COVID-19 pandemic: ongoing mental health support, individual and team debriefing, and self-care, coping, and resiliency skills to equip palliative nurses for future outbreaks and process their COVID-19experience.
PALLIATIVE NURSE WELL-BEING DURING COVID-19
The strain on palliative nurses during COVID-19 is extraordinarily high; hence, it is vital to consider what will keep our workforce sustained and healthy. Like other health care workers, palliative nurses are likely to experience a period of cumulative loss that will be more intense and traumatic than in the past. There should be strategic action to ensure palliative nurse well-being and safety throughout the duration of the COVID-19 crisis given these considerations, especially when considering nurses' substantial vulnerability to burnout.50
In a survey of 2109 palliative care specialists, nurses had 1.61 (95% confidence interval, 1.26–2.05) higher odds of reporting burnout compared to physicians, and those who reported burnout had 1.40 (95% confidence interval, 1.09–1.80; P = .0075) times the odds of leaving the field early.51 Palliative nurses should be encouraged to discuss difficult cases with team members, seek therapeutic support through personal or professional pathways, and acknowledge both the individual trauma of working with seriously ill patients experiencing COVID-19, as well as the collective trauma of responding to a health emergency. Many palliative nurses will also likely experience loss of their loved ones and undergo significant shifts to personal, family, and home life. The presence of existential guilt and/or survivor's remorse among palliative nurses should be acknowledged as a likely major effect of this pandemic and the associated isolation occurring in private and public life.52
Prior to the COVID-19 pandemic, the National Academy of Medicine had acknowledged the significant burnout experienced by clinicians across health systems and developed a consensus-based systems approach to professional well-being.53 The National Academy of Medicine's recommendations for clinician well-being during the COVID-19 pandemic54 include meeting basic needs (eg, food, sleep, exercise, etc); taking breaks whenever possible; keeping connected with colleagues to assist in stress, fear, and anxiety management; respecting differences in how people cope and manage the COVID-19 experience; staying updated with reliable sources of information and minimizing overexposure to media; performing ongoing self-reflection and self-assessments of one's own mental health and emotional needs; seeking support from peers, managers, and professional help as needed; and honoring both one's own service and the service of colleagues during this very challenging time.
During the COVID-19 pandemic, it is essential that nurses become familiar with, utilize, and share all available resources. Table 2 provides complementary resources for palliative nurses and other health care workers from organizations invested in clinician well-being, ongoing competency development and education, access to emergent research, and connectivity to the larger nursing and health workforce during COVID-19.
The COVID-19 pandemic has claimed numerous lives worldwide, presenting unique challenges to all of society, especially to the health care system and those working in palliative care. At the same time, this crisis offers an opportunity to reimagine the benefits of full palliative care integration to mitigate the effects of this and future health crises for patients, families, and communities. COVID-19 will continue to change the way nurses and other multidisciplinary clinicians provide palliative care in the coming weeks and months. In addition, there is an urgent need to raise the profile and status of nursing as the frontline responders to individuals and families worldwide.
Strategic and consistent investment in palliative nurses and nursing during COVID-19 will strengthen the broader health system's resilience and capacity to respond effectively to future pandemics and public health crises. Leveraging palliative nurses' unique talents and skill sets will also require close attention to their well-being throughout the trajectory of this pandemic. The success of current and future national and international efforts to effectively mitigate COVID-19 and other future health crises in large part depends on strengthening the nursing workforce, developing and integrating palliative nurses as a vital component of this response, and ensuring all nurses are central to decision-making and preparedness.
Palliative care is meant to be an active and comprehensive form of medical care that addresses the physical, emotional, spiritual, and social aspects of a patient's disease experience. The palliative nursing role is central to the goal of understanding how illness affects patients' lives and how patients and families can find meaning and growth during the pervasive and inevitable uncertainty resultant of the COVID-19 emergency. Palliative nurses and their contributions should be fully integrated and leveraged in the face of this public health crisis and amid the inevitability of future pandemics.
These authors thank Betty R. Ferrell, PhD, RN, FAAN, FPCN, Professor and Director of Nursing Research, City of Hope Medical Center, and editor-in-chief of the Journal of Hospice & Palliative Nursing for her support, guidance, and leadership in promoting palliative nurses' well-being and professional development during the COVID-19 pandemic.
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