End-of-life care, grief and bereavement experiences have been greatly disrupted since the start of the COVID-19 pandemic.(1; 2) Various public-health measures had to be taken to stop the spread of the virus. Just think of measures of physical distancing, measures of isolation and confinement in certain establishments (including hospitals and long-term care and accommodation centers), measures of taking care of bodies and services funeral, or measures related to the ban on gatherings.(3) Although these measures are important to slow the spread of COVID-19, they have resulted in many families losing loved ones without being able to accompany them in their last moments, or to honor their memory at public events. There is no doubt that this can contribute to the grief and distress of the bereaved.
What can we learn from past pandemics and infectious disease outbreaks about the care or supports required to allow people to grieve when strict public-health measures are in place?
What the research tells us
A recent systematic review identified six studies examining the impact of infectious disease outbreaks on grief and bereavement in West Africa (Ebola), Haiti (cholera) and Singapore (SARS).(4)
This review reveals that few studies have been done on this subject. In addition, the majority of these studies came from low and middle-income countries (except Singapore) and from countries with different cultural and spiritual belief systems than those prevalent in Western societies. However, several elements may apply to the current COVID-19 pandemic.
Also, although the studies did not specifically focus on those who are bereaved and focused on those who have had the disease and have recovered, it is recognized that survivors of cholera, Ebola or SARS pandemics have been confronted on the death of several of their relatives. Studies have thus identified three common themes related to death, grief and bereavement in a pandemic.
1. A loss experienced at different levels: in addition to the loss of family members and the fact of witnessing the death of other people, individuals also experience a symbolic loss of lifestyle, culture and social practices during pandemics. The mode of transmission of infectious diseases usually require containment and physical distancing measures which go against the desire to offer close, compassionate care to patients and their families at the end of life.
2. A great uncertainty: the rapid and uncertain evolution of certain illnesses does not adequately prepare families for the imminent death of their loved one. In addition, the information provided by authorities and the interpretation made by individuals based on their perceptions and beliefs can help to nurture this uncertainty and delay the psychological preparation for death. This uncertainty can create fear among patients, caregivers and professionals, and lead to increased psychological distress and sometimes even angry reactions towards individuals and institutions.
3. A limited capacity for social support: the ability of individuals to support themselves during illness, grief and bereavement is limited during pandemics, whether between patients, families, caregivers or professionals. For example, the requirement to wear personal protective equipment and the isolation of infected patients limits physical contact and restricts visits by family members. In addition, the implementation of physical distancing measures and the prohibition of public gatherings prevent family members and friends from coming together to collectively grieve.
Grieving differently during a pandemic
If you have experienced the loss a loved one during the pandemic, there are a few steps you can take to help you grieve:
Stay connected. Invite people to call you or set up conference calls or virtual conferences with family and friends to stay in touch. Share stories and photos by post, email, phone, video chat or through apps or social media.(5)
Reinvent mourning rituals and practices. We need mourning rituals and practices that are respectful, consistent with the faith or culture of families, to mark the departure of the loved one during pandemics. Why not create a virtual memory book, blog or web page so that family and friends can honour the memory of your loved one, share memories. Prepare your loved one's favorite meal or any other concrete gesture that had significance and can remind you of them.(5)
Ask for help. Getting help is essential if you or a loved one is going through a crisis or needs emotional support.(5) Crisis Services Canada provides a list of crisis and listening centers across the country (including local grief and bereavement support groups). These centers are there to respond to people who ask for help.