The cruel loneliness of death in isolation, and the enormous stress on healthcare workers (Part 1)

(Photo: Adobestock)

Covid-19 is a cruel disease. Patients face fear, loneliness and suffering while isolated from their families. But the stresses on medical staff are equally cruel, faced with not only treating patients, but also counselling them and their families – often by cellphone video links as they die – and the constant threat of themselves being infected. Professor Solomon Benatar pays tribute to healthcare workers in a two-part series.

During the still unfolding Covid-19 pandemic with its devastating impacts on all aspects of life everywhere, and severe damage to local and global economies, media attention has been overwhelmingly focused on data about the pandemic. This has eclipsed attention to the challenges facing hospitals, patients and their families, health professionals, and all the relationships encompassed within a diverse and complex system of healthcare.

Challenges for hospitals

Hospitals and healthcare systems, like many modern organisations, are complex in their structure and function. We generally take for granted their smooth functioning without knowing how much work and effort has gone into making, and maintaining them efficiently functional for a wide range of specialised purposes, often with limited resources in the public sector.

There is also no widespread insight into how difficult it is to change an institution to serve a very different function. For example, Groote Schuur Hospital (GSH) in Cape Town is structured to treat a wide spectrum of diseases and is predominantly staffed by professionals trained in specialised fields.

During a pandemic like Covid-19, everything changes – patient load, patterns of disease, skills required, priorities and more – all of which give rise to new pressures and stresses. Many services that were provided on a regular basis had to be abandoned or markedly restricted, and this hospital, like many others, has been transformed into a predominantly infectious disease institution for which it is not optimally equipped. 

For example, during the first 100 days of the pandemic, the GSH Covid-19 teams admitted about 2,700 patients, 1,600 of whom were Covid-19 positive, and 1,100 were kept under observation. To cope with a steadily increasing influx of patients, it has been necessary to allocate 22 wards (including seven ICU wards) to manage the expanding Covid-19 load. Bed occupancy has been almost 100% for ICUs and averaged 80% for the other wards.

Prioritising Covid-19 necessarily results in restrictions on many conventional services, such as elective surgery, that were already constrained by limited resources resulting from inadequate funding over many years. Highly trained clinicians in affected disciplines are distressed by reduction in the number of patients they could be treating and the potentially compromised care to patients due to postponement of treatment, as well as by the reduced potential to maintain skills that need to be continually sharpened. 

The process of transforming GSH has thus required many discussions aimed at consensus seeking. Deciding which services should remain (over and above emergency services), and which could be temporarily withdrawn is contentious. Because the scale-up of Covid-19 services was incremental, such issues had to be revisited at each step of the process in order to continually reassess how to balance priorities while preparing to meet the growing demands of Covid-19 service.

Excess deaths due to non-Covid-19 related diseases (when Covid-19 is prioritised) have been reported in the US, but the collateral damage impact of such change in South Africa remains to be evaluated.

Differing opinions and value judgements regarding which services could justifiably be compromised and which not, were resolved by seeking consensus through frank and open communication. If the pandemic continues indefinitely, consideration will have to be given to how to restore equally valued and indeed vital medical, surgical, oncological and other care services, and to sustain the training of the next generation of appropriately skilled professionals

This need to “learn while doing”, in restructuring hospital facilities, and through implementing evolving treatment modalities in the ICUs, illustrates the iterative and heuristic learning processes under conditions of uncertainty that differ from the classical scientific means of advancing knowledge. This way of learning within dynamic, complex systems requires avoidance of seeking definitive solutions, understanding uncertainty, humility regarding the state of knowledge, mutually supportive attitudes, time for reflection and consolidation of team efforts.

Excess deaths due to non-Covid-19 related diseases (when Covid-19 is prioritised) have been reported in the US, but the collateral damage impact of such change in South Africa remains to be evaluated. Temporary curtailment of many routine hospital activities enabled colleagues from other disciplines to work alongside physicians in admitting patients and caring for them in the wards and ICUs.  

In a recent Medical Research Council (MRC) webinar, a group of health professionals from public hospitals in the Western Cape, inclusive of Groote Schuur (University of Cape Town), Tygerberg and Khayelitsha Hospitals (Stellenbosch University) and a private hospital, Vincent Pallotti, discussed some of the challenges they were facing in their hospitals and what they were achieving and learning. 

Some key points were that each hospital must operate as a mutually supportive team during a constantly evolving clinical scenario with rapidly increasing numbers of patients, many of them severely ill. Emphasis was placed on the importance of conservative, but meticulous use of personal protective equipment (PPE) and infection protection control (IPC), including physical distancing; the centrality of nursing care; attention to the mental health and stress levels of staff and patients; and carefully planned procurement and management of resources to ensure adequate supplies of PPE, basic medications and high-flow oxygen therapy.

The fact that during the first 100 days of the pandemic, with 4,000 patient days of ventilatory support, only one or two GSH ICU staff became infected is evidence of the effectiveness of careful precautions. The success with which these care measures are being applied is being facilitated by the collaborative critical care platforms developed and sustained by devoted and skilled practitioners over many decades. Their protocols for triage and pathways of patient care have enabled avoidance of chaos despite enormous demands and limited staff, and facilities. This is in contrast to the shameful situation in the Eastern Cape where public health services have been progressively eroded over several decades.

Challenges for patients

Patients, many of whom were generally healthy and living normal lives until about a week prior to admission to hospital, face stresses from fear, loneliness and suffering while isolated from their families. They are also stressed by concern for how they will be treated and respected in hospital, and by fear of dying without seeing a family member. 

The distressing symptoms of oxygen starvation that require high-flow oxygen make this a particularly cruel disease. Additional stress comes with the possibility of seeing other patients dying in their ward. These fears of patients are palpable to staff, for whom making time to sensitively interact with patients and allowing them to express their fears, and hopes is a crucial aspect of healthcare, but is often restricted by heavy workloads and shortage of staff. Suffering and dying are lonely experiences unique to each of us. Some alleviation is possible through compassionate care.

Challenges for health professionals

In addition to the above stresses and those associated with PPE and IPC, a major challenge is that on admission to hospital, those patients with severe pneumonia are fighting for their lives, having only learnt the diagnosis within the past few hours. Given the rapid progression of this disease in those who die, it is much more stressful to work through counselling for a fatal diagnosis compared with when there is time during such interactions to reach acceptance by patients and their families.

On many occasions, staff step forward and play greater emotionally supportive roles than they are accustomed to doing under other circumstances. This includes liaising between patients and family members to maintain open lines of communication – both indirectly and more directly by arranging final live video link-ups between dying patients and their families with cellphones – with one staff member standing with the patient at the bedside and another at the entrance to the hospital with a family member. Under such circumstances, the death of a patient is an even greater emotional trauma than usual.

Staff illness has been a key challenge, despite infection control practices and good PPE knowledge. Infections are transmitted to staff more easily in the emergency unit and in the general wards when staff are overworked, leading to such practices being sub-optimally observed. Many nurses and doctors in the Covid-19 service have been infected in hospitals locally and worldwide. Their subsequent absence from work affects morale and reduces team size, adding extra workload for colleagues who remain on duty.

Staff and support staff in hospitals also face stressful prospects which they may not have contemplated or for which they were not prepared – for example, the risk of carrying infections back to family members at home. What should they do? Is it sufficient to use optimal PPE and IPC and return home at the end of each day to attend to their families? 

Alternatively, should they remain on the hospital premises for weeks or months on end to avoid carrying infection beyond the hospital environment? If so, can hospitals provide accommodation for those at highest risk as, for example, in Toronto during the 2003 SARS epidemic, where much greater resources and a shorter duration epidemic made it possible for many staff to remain in the hospital for several weeks? The psychological pressure of working under increasingly stressful situations, especially in less adequately resourced environments, should not be underestimated.  

Relationships and relational ethics

Relationships lie at the core of our lives and sustain our desire to live, love and be loved, most especially under life-threatening conditions. Creating caring relationships within healthcare, understanding what these relationships mean, how they are sustained and how human flourishing is enhanced by an ethics of care focused on commitment, and responsible human behaviour, begins with getting to know patients through sensitive communication, interaction and the application of appropriate and effective team care.

Trusting relationships are initiated by engagement with both cognitive and emotional aspects of the lives of patients as previously unknown fellow beings while acquiring the factual details of their symptoms and physical status. The ability to hear about patients’ illnesses, through stories of their lives in which their predicaments are embedded, enhances empathy and enables carers to interact more meaningfully with lonely, fearful patients. 

Such connections are not measured in the duration of interpersonal contact, but rather in the quality of deep and meaningful interactions that reflect caring and give patients the feeling of being cared for.

Mutual respect and empathy can bridge ethical and other differences between individuals – their views, cultures, understanding of knowledge and belief systems. Creation of an ethical environment for such interactions extends beyond a narrow individualistic framework to embrace solidarity within a web of relations that involves the whole team contributing to patient care. “We are all in this together” is essential and this is how the workings of GSH and other hospitals are being described.

Observations of healthcare provided by healthcare professionals in the above-mentioned hospitals and other local contexts during the pandemic reveal many gratifying examples of admirable professional behaviour in the best interests of patients and the community in times of great stress. The extent of constructive interaction and mutual support between medical and nursing colleagues, characterised by good communication and interest in each other’s welfare around common purpose, has been exemplary at the clinical interface in this time of crisis. 

The spirit of care, professional practice skills and humanistic attributes of South African-trained healthcare workers (long-renowned in many countries), are evident in many, but sadly not all the hospitals in our country. These vital and affirming aspects of care also witnessed in the office practices of private health professionals, as well as in the homes of their patients, in (some) institutional facilities for the elderly, and in the work of Médecins Sans Frontières (MSF) for the destitute and poor in deprived areas.

We are fortunate to have many competent and dedicated healthcare professionals. Their work should be publicly acknowledged and lauded. Expressions of gratitude to those working diligently and courageously, often beyond the call of duty would be supportive of their continuing efforts.

The bottom line

The world is changing beyond recognition and, while there is no way of knowing what the future will bring, the new “normal” will surely be very different and require ongoing adaptation. Regardless of the state of the world today, of advances that will be made in healthcare and of how life will change in the years ahead, commitment to excellence in the application of bedside skills and technological advances coupled with humanistic aspects of caring for patients as people, will remain preeminent goals at the heart of medical practice and healthcare services. DM

This article is inspired by those who contribute to providing care at the highest level locally and globally, and who set examples for healthcare in the future. Their examples should be emulated by those in governments locally and globally whose often arrogant desire to control (without accountability or even shame for their extensive internal corruption), seemingly allows them to prioritise their opinions above those who elected them to govern and who deliver socially valued services.

Acknowledgement: I am appreciative of insights provided by the health professionals who participated in the MRC webinar and to Prof Graeme Meintjes for relating some of the challenges at Groote Schuur Hospital.

Solomon Benatar is Emeritus Professor of Medicine and a Senior Scholar at the University of Cape Town and Adjunct Professor in the Dalla Lana School of Public Health, University of Toronto.


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