Reflections on a COVID death: Naming a family’s pain and reparation

My father died of complications of COVID-19 infection on 8th December 2020. He was hospitalised following a fall, as it was assumed he had experienced ‘a stroke’ (or cerebrovascular accident). A day later, the family received bad news that he was ‘COVID positive’.

Then began an emotional rollercoaster of progress and deterioration, a rollercoaster lasting 45 days and nights. Days and nights when the family was unable to visit or communicate adequately with our father or the hospital team. Days and nights when we feared he felt abandoned and alone. Days and nights when, like so many other families around the world, we were unable to do what families should do when a loved one is ill: to show love and care, to comfort by being present and to provide support in discussions regarding treatment and care options.

Some 25 years ago, Paul Lauritzen cited writing by Ursula Le Guin: ‘Offer your experience as your truth’. ¹ Lauritzen pointed to a trend, at that time, for writers to call for ‘the integration of reason and emotion, the personal and the political, the public and the private’ and ‘to reverse the segregation of intellectual inquiry from personal experience in moral deliberation’. Lauritzen discusses good reasons why we need to be wary of assertions of the authority of experience. However, he writes that appeals to experience involve storytelling, invite people to a conversation and signal ‘the beginning not the end of moral deliberation’. ¹ These thoughts resonated with me as I drafted this editorial.

Our family story was captured by communication through a WhatsApp group – communication which detailed the highs and lows of my father’s hospitalisation. A nominated family member devoted much time, during those 45 days, attempting to reach hospital team members responsible for our father's care to share with all of us. When the hospital team was reached, there was great variation in the quality and consistency of information received and it was difficult to interpret this. As our father was not comfortable with communication technologies, we had to trust the busy hospital team to pass on our messages. We sent also ‘get well’ cards and family photos, hoping these would get through. Poor substitutes for being with a suffering loved one.

Being aware of the pressure on care services, we knew that our father was one of many needing the attention of nurses, doctors and other professionals. We also knew that we could not do what families should do when a loved one is ill, suffering and dying. We were unable to visit, to spend time with our family member supporting and comforting and getting to know – and trust – the hospital team. We felt helpless and powerless in being unable to do what we knew we should do in normal times. However, these are not normal times, and family love and filial piety are trumped by a pandemic ethics characterised by utilitarianism. That is, family values of respect and love for older adults are challenged by a pandemic ethics which balanced benefits and harms aiming for ‘the greatest good for the greatest number’.

There has been much discussion, in this journal and elsewhere, of ethical challenges in healthcare and social care during the pandemic. Papers in this issue of Nursing Ethics illuminate topics directly related to the pandemic and topics with broader scope which are relevant to the experiences of families and professionals – topics such as family vulnerability, moral injury, moral distress, ethical challenges in home-based care, assisted dying, advocacy, courage, empathy and moral sensitivity.

The majority of publications during the COVID-19 pandemic relate, understandably, to the experience of professionals. There has been little attention to the experiences of families separated from loved ones who are ill, suffering and dying. Many of the ethical challenges named, in relation to professionals’ experiences, are also relevant to the experiences of families – most significantly, experiences of moral distress and moral injury. And in some few fortunate situations, such as our own, there may be some opportunity for moral repair.

On reflection, it seems that naming our family experience ‘moral distress’ is appropriate. The overview and comparison of moral injury and moral distress in this issue are particularly helpful here. ² Moral distress results in ‘psychological disequilibrium and negative feeling states (blaming others, self-blaming, self-criticising, depression, anxiety […]’ However, it did not seem that what we experienced was moral injury, as detailed in the Ċartolovni et al. ² article, as ‘in a long-lasting change to an individual’s sense of losing hope, trust, integrity and so on’. This may have been the experience of other families who lost loved ones during the pandemic.

There is much more that could, and should, be discussed regarding the moral consequences for families when loved ones are taken into – or kept within – care facilities during a pandemic. There remains much to research regarding how this predicament is to be understood and much still to do to respond ethically to the needs of patients, families and communities during this and future pandemics.

I can only hope that we will get better at facilitating communication between patients and families, particularly when patients are not comfortable with communication technologies. It is hoped that care facilities will consider means to respond adequately to patients’ treatment needs and, at the same time, not neglect the relational dimensions of patient and family care. It is not too soon – or too late – to set up teams of volunteers to act as conduits of meaningful communication between patients and families in each care facility. Nor is it too soon – or too late – to set up processes to enable patients to see family in person with protective measure in place. It is definitely not too late to invite and listen carefully to the stories of families who lost their loved ones during the pandemic. To listen to and learn from them so that we can do better in future.

We cannot know whether more family engagement would help patients to overcome the ravages of COVID-19 and the range of treatments they endured. However, we can agree with Paul Lauritzen ¹ that the ‘ending of a story is important’. We were very fortunate that our father was moved to a non-COVID ward for end-of-life care. We were supported in making arrangements to enable him to die at home. Home to be with his family so we could say goodbye as he breathed his last. Home for the cultural death rituals that are so important. This was, for the family, a great comfort and suggests perhaps some ‘moral repair.’ ³

I hope that nurses – and other healthcare and social care professionals – will continue to learn from each other and share creative strategies to make it possible for patients and families to communicate better and to be together at the end of life in this, and future, pandemics. I hope also that we, as nurses and ethicists, will extend the reach of our research and education beyond the experiences of professionals and involve patients and the public so that their voices are heard and responded to. I hope also that care leaders and policy-makers are now working on strategies to enable patients and families to be together to avoid the disabling and agonising impact of moral distress and moral injury and create opportunities for moral repair.