Coronavirus disease 2019 (COVID-19): strengthening our resolve to achieve universal palliative care.

In this paper, we strongly advocate for universal palliative care access during the COVID-19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID-19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID-19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi-level practices and policies to foster the delivery of safe, high-quality palliative care for all are urgently needed.

Introduction

William E. Rosa PhD, MBE, ACHPN, FAANP, FAAN Robert Wood Johnson Foundation Future of Nursing Scholar University of Pennsylvania School of Nursing Philadelphia Pennsylvania USA. E‐mail: wrosa@nursing.upenn.edu

Patricia M. Davidson RN, PhD, FAAN Professor and Dean Johns Hopkins University School of Nursing Baltimore Maryland USA. E‐mail: pdavids3@jhu.edu

As of May 18, there were more than 4.7 million confirmed coronavirus disease 2019 (COVID‐19) cases and over 315,000 associated deaths globally (Johns Hopkins University 2020). Similar to the many public health crises throughout, history nurses are the COVID‐19 frontline responders, merging innovative and evidence‐based scientific solutions with the art of human‐centred care for patients, families and communities worldwide. The COVID‐19 pandemic has brought a number of societal and healthcare issues to the surface, among them the urgent need for universal access to palliative care and symptom relief. As the infection and death rates continue to escalate, all health systems are seeing an increased reliance on the contributions of both primary and specialist palliative care services. For instance, palliative care input amid COVID‐19 is essential to adequately address pain and symptom exacerbations; the pressing nature of advance care planning and goals of care discussions given rapid decompensation of COVID positive patients; ethical issues regarding end‐of‐life decisions and treatment withdrawal; identification of anticipatory bereavement for family members and caregivers; and the management of complex care needs for high‐risk patients, particularly older persons, those with underlying conditions and the immunocompromised. Our aim is to strengthen the global nursing resolve to achieve universal palliative care through addressing implications for nurses and health policy during COVID‐19.

A recent consensus‐based definition explains palliative care as ‘the active holistic care of individuals across all ages with serious health‐related suffering due to severe illness and especially of those near the end of life. This philosophy and approach to care seeks to improve the quality of life of patients, their families and their caregivers’ (Radbruch et al. 2020). Based on this definition, the world is starting to understand that palliative care is not just for individuals with poor prognoses or nearing the end of life; it is a whole‐person approach to alleviating health‐related suffering that should be integrated early upstream in the disease trajectory.

Prior to COVID‐19, the WHO (2014) had called for universal access to palliative care across all levels of healthcare services and in the community as a component of universal and comprehensive health coverage. The Lancet Commission on Palliative Care report (Knaul et al. 2018) addressed cost‐effective capacity building for palliative care, providing recommendations to increase relevant training for specialists and primary care clinicians and advocate accessibility to affordable symptom management medications, such as morphine. Furthermore, discussion has been posed to leverage the global nursing workforce and ensure that universal palliative care is achieved, including 1) the need of governments to invest in the increased visibility and profile of nurses; 2) adapt palliative care education to the needs of various cultures and contexts; 3) promote mutually beneficial, long‐term and inclusive partnerships between nurses from all countries to advance respectful knowledge exchange; and 4) the engagement of nurses as full interdisciplinary team members across all aspects of palliative care planning, delivery and evaluation (Rosa et al. 2020).

Amid the evolving COVID‐19 pandemic – the WHO (2020) released the first‐ever State of the World’s Nursing report, emphasizing the contribution of the global nursing workforce, which numbers 27.9 million and accounts for 59% of the health sector. If universal palliative care is to be realized, we must tap the talent and knowledge of nurses locally and globally while promoting their well‐being.

In fact, we argue that every nurse is a palliative care nurse.

All nurses, across settings, specialties and levels play an integral role in delivering primary palliative care. Primary palliative care includes competencies in pain and symptom management and may involve advance care planning discussions and healthcare proxy identification, and, importantly, the skills to identify the need for specialist palliative care input. Nurses are health and well‐being advocates whose disciplinary expertise transcends disease‐specific knowledge, spans care transitions and provides support for individuals and communities across the life span. Providing palliative care is often challenging, as it involves bearing witness to suffering and sometimes despair, therefore, requiring careful thought and consideration. Like nursing, palliative care is a philosophy and approach to engagement that attends to the physical, psychological, social and spiritual, meeting the individual and family where they are and striving to meet their needs and decrease suffering as much as possible.

This pandemic has moved all of us out of our comfort zone and embedded the risk of infection and death into every clinical encounter, interrupting each part of daily life and perhaps most importantly how we deliver palliative care. Death and dying is highly ritualized in many societies, is a time for reunion, often reconciliation, and is highly associated with social norms. At this time of physical distancing and social restrictions, the loss of human connectivity is a source of distress to patients, their families, and – yes – nurses and other healthcare professionals. A recurrent theme throughout this pandemic is one of scarcity – not just staff and time but also PPE, medications and technical equipment such as ventilators. Although many countries in the world are used to these challenging decisions in the rationing and allocation of treatment, for many high‐income nations, these decisions are new, confronting and causing moral distress and injury. Many institutions are rallying to develop consensus as to the criteria used to allocate life‐sustaining treatments, strategies for symptom management and advance care planning. As always in times of challenges, opportunities emerge and we hope we will learn from many painful lessons, particularly in the care of older persons (Davidson & Szanton 2020).

Implications for Nursing and Health Policy

During a pandemic, the responsibility for palliative care is increased. In order to facilitate expert primary and specialist palliative care delivery at this time, nurses should look to established guidelines and expert‐led consensus‐based recommendations for the management of typical COVID‐19 symptoms. For instance, VitalTalk has COVID‐ready communication guides available (https://www.vitaltalk.org/guides/covid‐19‐communication‐skills/); the National Coalition for Hospice and Palliative Care has collated a number of academic and clinical links (https://www.nationalcoalitionhpc.org/COVID19/); and the International Association for Hospice and Palliative Care provides a global palliative care repository of COVID‐19 relevant resources (http://globalpalliativecare.org/covid‐19/).

At this critical public health emergency juncture, there is an important role for advanced practice nurses as well and many regulatory bodies are rallying to expand their scope of practice and reach, particularly in ensuring palliative care access. The urgent needs of society have forced governments to override jurisdiction boundaries, turf wars and professional biases. The rapid introduction of innovative models, including telehealth, has increased access for many and given a forceful nudge to many health providers to be more person‐centred and accommodating. We hope that some of the enabling strategies to enhance nursing roles extend beyond the pandemic, but this will require much resolve and advocacy to overcome decades of barriers and resistance.

COVID‐19 has thrust death and dying front and centre – for young and old as well as rich and poor. However, the pandemic has cast a spotlight on health inequities in high‐income settings and many hold their breath at the prospect of the potential ravages in low‐ and middle‐income countries where health systems are fragile and resources sparse. An important aspect of providing palliative care is not viewing death as a loss or defeat but more importantly a precious opportunity to promote dignity and relieve suffering for patients and their families at a time of vulnerability. COVID‐19 has provided a window into the work of nurses that is often invisible, as well as the value and importance of high‐quality, interdisciplinary palliative care. We should leverage this opportunity to advocate, not only for the extension of nursing roles, but also policy changes and resource allocation that will increase access to and knowledge about palliative care.

The contributions of primary and specialist palliative care are needed now more than ever. We must continue to advocate for institutional and national policies that ensure access to necessary symptom management medications; promote palliative care integration in clinical and educational settings; allow nurses and advanced practice nurses to work at the full extent of their license; support person‐centred care during serious illness and times of dying, death and bereavement; and foster the delivery of safe, high‐quality and effective palliative care for all.

In sum, COVID‐19 has disrupted society on every level, adversely affecting the care of many chronic conditions, maternal‐child health and increasing the risk of co‐infections, such as HIV and tuberculosis. Of equal concern is the exacerbation of mental health issues, gender‐based violence and disruption of societal cohesion due to economic upheaval and scarce resources. Undeniably, the COVID‐19 pandemic will be one of the greatest challenges of modern times. For the many challenges that we face, ensuring individuals face the challenge of serious illness, as well as that of death and dying, with adequate information and optimal resources is a critical opportunity and obligation of all nurses throughout the world. We are buoyed during this challenging time through a global community of resilient nurses, the sharing of information, and the mutual support and knowing that much suffering can be relieved by connecting with humanity and providing care to the very best of our ability and with our available resources.