Cancer care, COVID-19 and dying in the 21st century

Friday 4 February 2022 was World Cancer Day. On this day, people around the world came together to raise awareness and improve education in the fight against cancer. The theme for this year’s World Cancer Day was ‘Close the Care Gap’, to draw attention to the gap in cancer care worldwide. In wealthy Western countries, diagnosis and treatment is very much accessible to broad segments of the population; in low-income countries, this is not the case at all, and essential medicines such as drugs for pain management are not available.¹ As always, the main focus of a World Cancer Day is on the ‘success stories’ in the fight against cancer, on the progress in basic and clinical research and on the development of new effective treatments.

However, the less successful stories remain consistently under-reported. The global annual cancer incidence is estimated at 23 million new cases and more than 9 million deaths worldwide.² Very many people with cancer still die from it. Some people do not survive cancer, or have a poor quality of life, many do not find their way to palliative care or do so far too late, some will receive inappropriate treatments or are treated for far too long and die in horrible conditions.³ Even for survivors or those with a long life expectancy, things are not all rosy. Many still have a long-term severe symptom burden and functional limitations and many have psychological and social challenges, finding it difficult to reintegrate into everyday life in their families, at work, in sports and hobby clubs and so on. Invariably, cancer is accompanied by many questions, many uncertainties, many fears, much physical and/or psychological suffering and many social challenges. These negative consequences are much less in the spotlight during World Cancer Day and are not yet a priority in health policy either. The lack of attention to quality of life of people with cancer is symptomatic of the way in which illness and healthcare are thought of and dealt with in our society.

In most Western countries, healthcare policy over the past 50 years has focused on diagnostics and cure by medicine (versus promoting well-being and health), on individual biology (versus public health) and on individual health (versus population health). We do not prioritise a caring or compassionate society or search for societal solutions to promote health, quality of life and well-being for as many people as possible. This was also made painfully clear in the COVID-19 pandemic. Support for quality of life and quality of dying was far from the norm. Crisis management in this pandemic was run by virologists, biostatisticians and epidemiologists, while primary prevention should have been aimed at promoting appropriate behaviour, teaching healthcare providers and various population groups the evidence-based ‘behaviour rules’, for example, keeping physical distance, washing hands and wearing a face mask. Dying was unavoidable in this pandemic; over 30,000 people died in Belgium, very often without access to palliative care. So why not also put palliative care professionals and behavioural scientists (behavioural psychologists, health advocates, anthropologists, sociologists, communication scientists etc.) in the cockpit of crisis management?

The unbalanced and contradictory view of death and dying forms the basis for the Lancet Commission on the Value of Death, published (31 January 2022) in the medical journal The Lancet. Drawing on multidisciplinary perspectives from around the world, the commissioners argue that death and life are linked: without death, there would be no life.¹ The Commission state that

the story of dying in the 21st century is a story of paradox. While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basis pain relief.

In high-income countries, COVID-19 has resulted in people dying the ultimate medicalised death, often alone in hospital with little communication with their families. But in low-income countries, many people with COVID-19 received inadequate treatment and did lack access to basic healthcare. The Commission proposes a new vision of death and dying, with greater community involvement alongside health and social care services and more social support for bereavement.

The Lancet is proposing nothing less than a paradigm shift in healthcare with much more focus on social change and attention to societal solutions.¹ The Lancet Commission’s thesis on the value of death is that our relationship with death and dying has become unbalanced, and they advocate a new balance. It states that ‘At the core of this rebalancing must be relationships and partnerships between people who are dying, families, communities, health and social care systems, and the wider civic society’.⁴ It would be helpful if palliative care associations around the world and international palliative care conferences would take an active lead in this rebalancing. I hope that palliative care associations and health ministers around the world and their advisors will read this important report and will seriously consider and implement the advice it contains in their policies.