The admission of a critically ill patient to an intensive care unit (ICU) is a distressing event for the patient, their family and friends, which has been amplified by the impact of the covid-19 pandemic. Many hospitals now prohibit visits by all relatives and friends for all patients, sometimes even when a patient is dying. The consequent inability to see, touch, and talk to loved ones increases the burden of critical illness on families. The lack of face-to-face communication has also greatly changed the dynamic of interactions between healthcare providers and families. These changes affect how we communicate with families, and could have long lasting impacts for patients who survive an ICU admission, their families, and healthcare providers in ICUs.
Under normal circumstances, there is great uncertainty about the course and outcome of critical illness. Families spend long hours at the bedside, witnessing the ups and downs of clinical progress, and building relationships with healthcare providers. These relationships, and the trust they embody, are a crucial part of the clinical process. They provide the foundation for sensitive discussions regarding the need for burdensome therapies, and in some cases, the futility of aggressive interventions and the ethical need to allow a good death. Away from clinicians, families in ICU waiting rooms often support each other, and become aware of dedicated support groups for both patients and their families.
As the pandemic has progressed, alternative approaches to family communication have included greater reliance on written information, smart phones and computer tablets, and scheduled phone updates. Clinicians from non-patient facing specialties, have also contributed to these efforts. [1] When patients can still communicate with families, phone conversations (even if one-way), or online video interactions, may be useful.
While these approaches may mitigate the increased distress experienced by families, they are imperfect solutions. Discussions in critical care are often complex and nuanced, and are typically influenced by reactions detected by assessing facial cues and body language. Prior experience with relatives makes future conversations easier. Most families of critically ill patients with covid-19 will have had no prior contact with the critical care team, and communicating solely via telephone conversations makes interactions challenging. The best critical units routinely engage families in management decisions, involving them in a process of shared decision making, and taking account of the aspirations and fears of patients who can no longer speak for themselves. In the current context this becomes difficult, and sometimes impossible. As a consequence, misunderstandings and failure to establish trust are real hazards.
Family satisfaction is disproportionately important in ICU because the consequence of dissatisfaction exacerbates the psychological distress experienced. The diagnosis of “post-intensive care syndrome-family”, where sequelae may include depression, anxiety and post-traumatic stress disorder is common. [2] Indeed, lack of regular meetings and inconsistent information is associated with increased risk of anxiety and symptoms of depression in family members. [2]
Family absence, combined with the pressures of stretched critical care services, can also increase the risk of moral distress and burnout for clinicians. This may be a particular burden for nursing staff, who often spend prolonged periods interacting with patients and families, and may feel the need to assume greater burdens of patient advocacy in the absence of families. These stresses may be exacerbated by the frustrations experienced when attempting to maintain high clinical standards despite resource limitation, staff shortages, concerns about personal safety, and the uncertainties inherent in dealing with a new disease.
Inviting patients and key family members to multi-disciplinary critical care follow-up clinics (either in person or via telemedicine) will be important to assess long-term effects of this sudden change in communication, and address its likely harms. Research encompassing families, patients, and healthcare providers will be important to understand mental health sequelae. Accompanying qualitative studies could provide important insights regarding the effectiveness and limitations of the different communication strategies that we have used, and suggest what we should use if we find ourselves in similar contexts in the future.
Quoting Margaret Atwood in “The Blind Assassin”, a recent commentary deplored the loss of touch in modern clinical interactions: “Touch comes before sight, before speech. It is the first language and the last, and it always tells the truth.” [3] Changes in the clinical process imposed by covid-19, at least in our interaction with families, may take us even further down this unwanted clinical path. We need to understand what we have lost, and find ways to mitigate this loss.
Virginia Newcombe, Academy of Medical Sciences / The Health Foundation Clinician Scientist, University of Cambridge, and consultant in Critical Care and Emergency Medicine, Addenbrooke’s Hospital, Cambridge. Twitter: @vfjn2
Timothy Baker, Anaesthetic Registrar, Addenbrooke’s Hospital, Cambridge. Twitter: @DrTBaker
Rowan Burnstein, Consultant in Anaesthesia and Critical Care, Addenbrooke’s Hospital, Cambridge and Head of School of Anaesthesia Health Education England, East of England. Twitter: @Rmb46Rowan
Rosie Tasker, Registered Nurse, Neurosciences and Trauma Critical Care Unit, Addenbrooke’s Hospital, Cambridge
David Menon, Professor of Anaesthesia, University of Cambridge and Consultant in Critical Care, Addenbrooke’s Hospital, Cambridge. Twitter: @Menon_Cambridge
Competing interests: none.
References:
- Pablos T. NYU radiologists answer the call during COVID-19 surge. https://www.auntminnie.com/index.aspx?sec=sup&sub=xra&pag=dis&ItemID=128685 (accessed 25/4/2020)
- van Beusekom I, Bakhshi-Raiez F, de Keizer NF, Dongelmans DA, van der Schaaf M. Reported burden on informal caregivers of ICU survivors: a literature review. Critical Care 2016;20:16
- Horton R. Offline: Touch-the first language. Lancet 2019;394:1310