Amongst the news and social media noise relating to COVID-19 there is a persistent, heart-breaking narrative, of patients who have died alone and families unable to say goodbye. This runs contrary to our cultural beliefs and values, yet in recent months it has become the norm. In this blog I (HC) write from my recent experience of being a patient in an intensive care unit (ICU) and am joined by two nursing experts to address the questions: Is it acceptable to normalise dying alone in the context of a pandemic? How do we understand and mitigate the sometimes conflicting risks for patients, families, staff and society?
At an early stage of the outbreak, to avoid cross-infection, healthcare settings initiated policies that discouraged or disallowed visitors, except in exceptional circumstances. End of life is considered an ‘exceptional circumstance’ in some (not all) settings, but it is not clear how well this has been enacted across our health and social care systems. For the patient who is in ICU (or care home), dying from COVID-19, the overriding risk is that they die without the companionship of those they love. But the alternative may be dangerous for the visitor, whose infection risk starts when they leave home and increases as they enter the care setting. Some may be particularly vulnerable to infection, and many may find the environment of the ICU emotionally traumatic. Such risks can be mitigated by advice, support, infection prevention and control measures and the provision of personal protective equipment (PPE), and they should be assessed against the long-term impact and injury of not being present at the end of life. Carers and families have the right to make an informed choice about what is best for them.
The increased footfall of travellers to care settings carries a risk to society, but population and individual level measures exist to manage these risks.The possibility of asymptomatic visitors transmitting infection to staff and other patients is important, but does it outweigh the needs of families, or patients who are dying? We think not, but it is crucial that care staff put in the position of identifying and managing these risks are given the necessary resources in terms of PPE, time, training and emotional support.
Is the presence of a loved companion of benefit to the patient? I was sedated and on a ventilator for a week, after contracting sepsis. My sons were advised that my prognosis was poor. For much of that week I experienced only vivid dreams. However, at some points, perhaps as I began to respond to medication, I was aware of my son’s voice repeating ‘you’re not going to die’ over and over. Did that help me hold on to life? I don’t know, but through that week my sons were my advocates and my link to life –they talked to staff about me – I was mum, Helen, a professor, a runner, a hill-walker, a midwife. They made sure I was known as a person with a life to live and not just the sepsis in bay 4. Ultimately, of course I did not die, but at the time I was considered likely be at the end of life. Being aware of a known and loved person was the only reassurance I had as my life hung in the balance.
The stress experienced by relatives of patients in ICU is immense and well documented. It is associated with subsequent development of anxiety, depression and Post Traumatic Stress Disorder that may persist long-term. Stress and anxiety is unlikely to be lessened by enforced absence and may deepen the distress of dying and bereavement for patients and relatives.
We contend that the human benefits of companionship at the end of life outweigh the risks. Allowing visitors would reduce the emotional labour for exhausted staff, distressed by the pressures of communicating with distraught relatives and by the responsibility of being the only person present at the end of life. It would also allow the important opportunity to say goodbye. Video and phone calls have been used as a substitute during Covid-19, but the absence, and loss, of human touch cannot be underestimated.
In the early stages of the pandemic the focus of healthcare was necessarily on the immediate need to save lives and there were fears that healthcare capacity would be overwhelmed. Now recognising that COVID-19 will be part of the longer-term healthcare context, we must act to protect the mental health and wellbeing of patients, relatives and healthcare providers. The Scottish Academy offers a practical approach to involve families at the end of life. We need now to remind ourselves to whom the patient “belongs “, to find ways through the decision making and risks, resource these paths and commit to supporting meaningful companionship at the end of life.
About the authors
Helen Cheyne is a midwife and a Royal College of Midwives Professor of Midwifery at the Nursing Midwifery and Allied Health Professions Research Unit, University of Stirling. Her research interests include perinatal mental health and women’s experiences of maternity care. Last year she contracted meningococcal septicaemia.
Clare Leon-Villapalos is the Lead Nurse for Education in Critical Care at Imperial College Healthcare NHS Trust. Her research interests include staff perceptions of safety and deployment in ICU.
Mary Wells is the Lead Nurse for Research at Imperial College Healthcare NHS Trust and a Professor of Practice (Cancer Nursing) at Imperial College, London. Her research interests include cancer rehabilitation and survivorship and patients’ experiences of care.
The authors declare no conflicts of interest.