Long Covid and the ghost of nursing theory

The emergence of a novel virus in late 2019 was not a new global public health emergency faced by healthcare systems. Influenza, severe acute respiratory syndrome (SARS), Ebola and other pathogens have repeatedly challenged systems of care, funding models, healthcare workers and science. The scale of this pandemic in terms of loss of life, morbidity and impact on health systems and economies is the largest in a 100 years, and may come close to the influenza pandemic of 1918. Whilst science and technology have moved on significantly since then, treatments remain limited, and practice has fundamentally drawn upon basic public health measures and aims of mitigating the stress placed on healthcare systems to save life such as critical care.

In many previous pandemics, nurses have been fundamental in leadership as well as their clear expertise improving clinical outcomes. With the Covid-19 pandemic, the role of nurses in healthcare has never been more visible in the media. This has often focused on hospital care, but nurses have been prominent in community settings, primary care, public health, education, research and health leadership during the pandemic.

This has been the same in previous pandemics. When Dr Wilmer Krusen, head of Philadelphia’s Department of Health, was asked what was needed to control the pandemic in 1918, he replied:

‘If you would ask me the three things Philadelphia most needs to conquer the epidemic, […] I would tell you ‘Nurses, more nurses, and yet more nurses.’ Doctors we have enough of. Supplies are plentiful, buildings are offered us everywhere. We have many beds that might be opened to patients. But without enough nurses to tend those we already have, we are helpless.’ (Lippert, 2020)

Nurses then, as today, brought a sophisticated set of skills to multiple problems in the communities they supported, both in managing clinical complexity but also providing a sense of hope as they visit communities and made a difference, not just to saving lives but also comforting bereaved families, managing infection control problems and improving public health. There are many challenges for health systems globally from the 2020 Covid-19 pandemic. From critical infrastructure such as oxygen production, access to public healthcare expertise, vaccine availability through to hospital capacity. Often the rate limiting factor in escalating critical care capacity was not ventilators nor total number of staff available but critical care nurses. Medical staff and others such as dentists and veterinary surgeons were redeployed to assist and nursing skills and competence were shown to be anything but basic. However, the pandemic policy response has largely focused on technical skills at the exclusion of wider nursing expertise. National level public health control measures, such as lockdowns have had significant implications which meant that families could not visit and this may have exacerbated post-traumatic stress for patients and families. However, skilled nursing anticipated this and patients who had been unconscious for weeks have expressed gratitude for the nurses’ diaries that helped them to fit in missing or half remembered days that previously their loved one might have confirmed (Kellaway, 2021). Outside critical care, nurses were just as pivotal in every setting, from wards to care homes, from mental health services to district nursing and every other place that nurses help people with their health and wellbeing.

As vaccines offer a glimmer of hope for the end of the pandemic, many are hoping that societal norms, economic activity and health services will be resumed, but for a growing number of people there is a lasting legacy in the form of Long Covid. In the UK, 1 million people report symptoms associated with a Covid-19 infection lasting for four or more weeks (ONS, 2021). For some, these symptoms have a clearly understood pathology with organ impairment from their acute infection. For others, the picture is complex and uncertain where the causal mechanisms are unknown and are contested. In the UK, 650,000 people say their symptoms limit their daily activities to some extent (ONS, 2021).

The number of people who are still ill after 12 months is rising rapidly, up from 70,000 in the UK in March 2021 to 376,000 in May 2021 (ONS, 2021) mirroring the arc of hospitalisations in 2020. We should expect to see similar rises as the arc of hospitalisations in the second wave matures by the end of 2021/start of 2022. But Long Covid is not confined to those who were admitted to hospital, nor are symptoms correlated with intensity of treatments. Estimates from the UK (ONS, 2021) and the USA (Daugherty et al., 2021) are that around 14% of people who were infected with Covid-19 will still have at least one symptom 6 months later. It is possible that there may be more people in the UK with Long Covid than with dementia by the end of 2021.

Whilst many people have a fatigue that resolves within 12 weeks without any medical intervention, there is increasing evidence that people have higher risks of developing new diagnoses, with hazard ratios for hypertension of 1.81, diabetes of 2.47 and sleep apnoea of 2.31 (Daugherty et al., 2021). Prescribing rates of analgesia, antidepressants, antihypertensives and oral hypoglycaemics are increased for people with long Covid (Al-Aly et al., 2021). There is strong evidence of depression and anxiety and whilst there may be a small group people with health anxiety, the incidence of anxiety is often associated with physical problems; it may be the illness causes the anxiety rather than anxiety causing the symptoms.

Long Covid is a multi-system condition with many different patterns of symptoms perhaps indicating different syndromes (NIHR CED, 2021). There is increasing evidence that symptoms change over time and it is clear that, for many, rehabilitation is not the answer. There is a clear need for systems of care for Long Covid with holism as it is a fundamental design feature. This includes the skills of a practitioner experienced in managing uncertainty and long-term conditions and who can co-produce personal coping strategies as potential treatments change over time. Nurses are pivotal to this.

There will be a role for specialist nurses for patients with newly diagnosed conditions associated with Covid-19 (especially hypertension and diabetes). There is also a major role for other specialist nurses in sharing knowledge on managing symptoms common to other conditions. ‘Brain fog’ or cognitive dysfunction is one of the most common symptoms and neurological nurses such as multiple sclerosis specialist nurses can offer effective advice on managing this (Maloni, 2018). Myalgia is another debilitating symptom and chronic pain nurse specialists have much to offer. Many people with Long Covid experience autonomic dysfunction and postural tachycardia syndrome (POTS) nurses can help them to build coping strategies and reassure them that the symptoms will pass. Increasingly people are reporting menstrual problems with early menopause or new premenstrual symptoms that may be alleviated by hormone replacement therapy (Newson, 2021) and menopause specialists will be invaluable for them.

Long Covid is not a linear, episodic disease and supporting people living with it challenges current service models. All nurses have ample skills to support people through their Long Covid journey, particularly those working in community settings who are already looking after people with long-term conditions. Nurses and nursing expertise needs to be clearly developed in planning of Long Covid services of this emerging challenge, but early models of Long Covid management have yet to leverage this expertise and have largely focused on excluding other diagnoses and on rehabilitation. Is this because the system is failing to recognise the wider contribution of nursing expertise or has nursing as a profession forgotten the value of its own models of care and underpinning theories?

Re-examining historical and contemporary approaches to pandemics and their wider health effects recalls some common themes of the role and contribution of nursing. A Public Health England report (PHE, 2021) examined health inequalities amplified by Covid-19 and highlighted the requirement of cultural competence, a concept that nursing theorist Madeline Leininger has been pursuing for decades. Leininger makes a powerful argument that resonates today:

‘Transcultural nursing is directed toward holistic, congruent (appropriate), and beneficial health care. It remains one of the most challenging and revolutionizing developments in health care as our world becomes globally multicultural.’ (Leininger, 1978)

The application of nursing theory can guide development of the nursing contribution in a person-centred, community-centred way that captures the physical, psychological and social aspects of health. But interest in nursing theory has waned over the last 20 years and practice is largely atheoretical at present. A refocus on the theoretical underpinning of nursing and a wider discourse on the nature of nursing would challenge the prevailing narratives beyond the technical. Covid-19 has brought into stark relief the need for nursing expertise, but also the very clear need to continue the advancement of what nursing is (or could be) in service design, delivery and professional practice.

Some may read this as a parochial push for attention to nursing at the expense of others in the healthcare team. It is not. Healthcare is and always has been a team approach, but recognising the unique contribution that each profession brings to patients, families and communities is critical to improved outcomes and efficiency. However, without clear framing and understanding of nursing theory, there is a danger that the profession will be seen as a series of skills and tasks. This inherently risks, at best, minimising the opportunity for the contribution of nursing and, at worst, making the role subservient to the models used by others in the team.

Nursing models provide a complementary intervention to medicine and are particularly pertinent for an ongoing, uncertain condition such as Long Covid. Virginia Henderson’s definition of nursing (Henderson, 1978) with its focus on physical, emotional, spiritual and environmental assessment of patients may effectively guide the reduction of the long-term burden of Long Covid, both for individual, health and social care providers and society more generally. The focus on supporting people by assisting them to manage their own health and wellbeing, up to and including undertaking some of the work for them but always focused on a return to independence is reflected in Orem’s Self Care Deficit model (Orem, 1995). With three main principles, this model articulates the expertise of nursing in assessing the capacity of the patient to manage their own needs, within the context of their family and social networks and the nature of their health conditions. The nurse then supports the patient through education, and by partially or fully undertaking the work needed to maintain or improve health until the patient is able to do this independently. This sort of empowering partnership may positively impact on the wellbeing of people with Long Covid.

Evidence on Long Covid to date has focused on physical manifestations. Services have therefore focused on diagnosis, but will require a rapid rethink towards holistic models. The increasing number of people in the UK reporting Long Covid symptoms will place pressure on Primary Care and Specialist Assessment clinics which may not have sufficient capacity to respond. People with Long Covid who have some limitation to their daily activities and therefore, presumably, some self-care deficits will increase demand on existing models of care delivery. Nurses have a clear role in supporting these people to manage their health, from educating them about red flags that indicate medical assessment is required, to providing specialist advice on symptom management to providing direct support with activities of daily living.

In many ways, the volume of people with Long Covid has shone a light of how far we have moved to a medical model of care. The arguments we make about a discrete and complementary model of nursing care apply to many long-term conditions. We assert that we are failing our patients if we fail to apply nursing’s theoretical and evidence base for all our patients, but there is a particular imperative and opportunities to do so during the norming and storming phase of service configuration designs for this novel condition.

Nursing has the potential to make a significant contribution to the management and care of an emergent disease. It is critical that nurses step up to the plate, with leadership, research and service delivery plans. If not now, when?