Historically, death was a family affair, which took place at home with the dying person surrounded by close family and special friends. Death and dying as processes we all go through remain largely the same, but the world around it has recently changed. For example, the past 18 months have seen COVID-19 transform death in terms of the vast numbers dying each day, with social distancing preventing relatives and families from being part of the dying experience.
COVID-19 has forced the dismantling of family support of the dying person, and, with that, it has threatened the emotional closeness that is necessary for strengthening or developing affectionate bonds. Dying while surrounded by family and friends offered an opportunity to say goodbye, and, at times, issue a few instructions to be carried out posthumously. Arguably, this could still happen virtually, but it is never the same as being physically close to someone. COVID-19, has imposed a new era of dying, which prevents death rituals by families and friends, and this can be argued to negatively impact the bereaved and how they interact with their grief.
The past 18 months of the pandemic have ‘pushed’ death rituals to resemble what happened with industrialisation, where death was, in most families, moved from the home set-up to institutions, where strangers cared for the dying person. The pandemic has not only removed death from the family home, but even stopped families visiting the dying person in institutions like hospices and hospitals. The writings of Aries (1974) suggested that Western attitudes toward death became well defined with one common one being the denial of death. However, what is most significant for us in palliative care today is that death became less familiar to families, particularly young children. For example, hospitals became the common place for death, with the patient being cared for by doctors and nurses (seen as strangers) and taking responsibility that once belonged to the family. Family members were allowed to come and visit the patient between strictly prescribed hours, with two being the maximum for each visit. This tradition is still evident in some institutions today, but, with the COVID-19 pandemic, it has extended to create physical distance and prevent families from visiting altogether.
Dying in the 21st century was characterised by most patients preferring to be cared for and die at home. The transformation of death due to COVID-19 means home is no longer the preferred place for end-of-life care and dying. Instead, institutions are preferred, as they have the medical facilities and equipment to treat symptoms of COVID-19. While it was often argued that dying at home had financially driven savings for the Government, with COVID-19, the Government encouraged people to go into hospital and even built special hospitals just for COVID-19-related admissions. It is imperative that we all work to meet the needs of patients affected by the virus. Medical advances may have played a significant role in controlling the symptoms but may have also raised unrealistic expectations about what is possible. It is inevitable that we expect to live longer with our diseases cured. Medical advances are not the problem, but how we use them and what perceptions we create about future possibilities are. The claim of over-medicalisation of dying denotes the choices we make in the hope that we can be cured, only to discover later that all treatment was futile. In this case, a plausible argument is that the availability of medical advances may have acted as a catalyst in creating a distorted reality, whereby we believe that we can somehow cheat death and continue living. COVID-19 seems to have challenged the notion of social death. In social death, the patient may be the only one dying, but their dying is negotiated among family members and close friends. Although we tend to say that we respect the patient's wishes and decisions, these are often the collective social preferences of the family. In short, the transformation of death through COVID-19 has restricted these negotiations and social dying.
Evidence from Gomez et al (2011) suggested that, where families members have not shared the patient's preferences, dying at home has not been achieved. This is true of today's COVID-19-related dying, as people are ‘forced’ to die away from their homes.
Dying in today's changing world puts different demands and expectations on health professionals. For community nurses, palliative care can be a privilege to get even closer to the patient and family's situation and emotions in order to understand their needs during the dying process. The needs may be around their children and spouses, and we can support them to achieve these in a realistic way. Palliative care will now encounter patients and families with COVID-19-related death experiences, and it is our role to try and support them to re-align their situation with reality. Palliative care helps us to remain focused on the need to enhance quality of life and achieve a dignified death.