‘People are having a very different experience of death’

The United Kingdom is currently set to see the highest number of deaths from Covid-19 in Europe and the second highest number in the world after the USA. At the time of writing, in May, we have already seen almost 60,000 excess deaths across the four nations during the Covid crisis – a number which also takes into account those who have died from the disease in the community and care homes but have not been tested.

The level of excess grief this translates to is quite unimaginable when we consider each of those individuals' social circles and families – all of whom have been touched by loss. Consultant clinical psychologist and Chair of the Division of Clinical Psychology Northern Ireland, Professor Nichola Rooney (Queen's University Belfast), has been leading the British Psychological Society's Covid-19 coordinating group's work on bereavement. She said that while grief is a normal reaction to loss, and should not be unnecessarily pathologised, a minority of bereaved people go on to develop complicated or prolonged grief reactions.  

In considering the aftermath of the pandemic Rooney said there were going to be a number of psychological sequelae, including high levels of grief and an unprecedented need for increased access to psychological support. 'The restrictions in place because of the virus, have meant that people are having a very different experience of the death of their loved ones. This can make their grief journey very different, particularly if they are grieving isolated from their usual supports.   

'It is important that we ensure that those coming in contact with bereaved people understand the many reactions and difficulties experienced, and I am keen that the bereavement resources we are developing can help to support not only the bereaved but also those who support them. Understanding how to manage and cope with the difficult emotions, behaviours and cognitions associated with grief will hopefully mean that people are less likely to be pathologised.'

While initially Rooney said she was slightly overwhelmed by the scale of responding to the crisis, she soon drew on her 35 years' experience as a psychologist. 'I've worked in Northern Ireland so most of my life I've dealt with trauma and not just one-off traumas. While often people view trauma in the context of one-off disasters such as the Grenfell Tower fire, I have been working in an environment of over 30 years' exposure to ongoing trauma and now we are seeing its intergenerational impact. Covid is also different from one-off traumatic events, lasting for many months and impacting on every aspect of our lives. Some aspects therefore chimed with some of my experiences from Northern Ireland.'

Rooney also drew on the expertise of her fellow group members, who included health, educational, and counselling psychologists working in the area of end of life care. One member, Dr Theresa Jones, also a clinical psychologist, works in Kenya with The Social Science in Humanitarian Action Platform. 'Theresa's work shows us that we can learn from other pandemics such as Ebola and SARS… even though there were cultural differences, the same themes were coming through. In any kind of emergency there's the same grief reactions to it; there's increased sadness, there's increased anxiety, a sense of hopelessness.'

'Everyone will have a sense of grief'

Some of that previous research has found that the lack of rituals in the face of death and dying had the potential to increase prolonged, or complex, grief reactions. 'It was a case of knowing what happens in emergencies and then extending it to this situation. A lot of the work tends to focus on the more pathological side like PTSD and depression but, actually, I think everyone will have a sense of grief or loss.'

Clinical and counselling psychologists will not be alone in supporting bereaved people – particularly those who experience prolonged or complicated grief. Rooney said health psychologists would also be vital in encouraging people to use healthy lifestyles to promote mental health. Psychologists at large may be keen to support schools, universities and workplaces which may have seen a high level of bereavement and who want to remember their lost friends and colleagues in a sensitive way. Community psychologists will also have a role in supporting places which have seen many deaths to recover.

'We all have a role in ensuring that the public messages about Covid-related deaths are handled sensitively. I think we've seen how it may be perceived that some deaths seem to be more important than others – for example if you're old or you've got an underlying condition it doesn't seem to matter so much. That can add to bereaved relatives' feelings of helplessness and we really need to capture the people behind the statistics. I think the next wave we might see will include a bit more anger and so I think we'll have to be very sensitive about messages and how they're given.'

Rooney, who is also a non-executive director on the board of the Public Health Agency and a professional adviser to the Regulation and Quality Improvement Authority in Northern Ireland, previously managed psychological services in Northern Ireland where she developed the bereavement service for the regional specialist children's hospital. She is currently leading the Northern Ireland Department of Health's workstream on Covid-19 bereavement and on the psychological care of patients with severe Covid-19.

A set of resources

Rooney and the BPS Covid-19 Bereavement group have designed a set of resources to support people before, during and after the Covid crisis. They are for people in different population groups and ages, for the public, and professionals working with grieving people. So far they have produced a range of booklets on supporting each other through death and grief, managing death and grief in care homes and coping with the death of a colleague.  

There are also two videos by counselling psychologist Dr Elaine Kasket on saying goodbye using technology and managing your digital footprint, as well as an interactive document that helps with alternative ways to recreate rituals and memorials. Two documents on end-of-life care pathways and end-of-life care guidance, for psychologists working in palliative care or with patients who are dying, has also recently been published. Guidance on writing advance care plans and information on end of life care pathways is currently being prepared.

Rooney said the wave of grief we are already seeing, and will see more of in the future, should be recognised on a community-wide level. She suggested that psychologists have a role in helping communities and the government to plan for a social recognition of this grief in a sensitive way once the pandemic has slowed. 'We need to ensure that any such response is inclusive and that everyone can have access to the best quality evidence-based support they need. How we manage this and support people to readjust to their lives without their loved ones will undoubtedly impact on the grief journeys of many people and ultimately on their psychological health and wellbeing.'

Let's talk about death openly

Health Psychologist Angel Chater, Professor of Health Psychology and Behaviour Change (University of Bedfordshire) and member of the BPS Covid-19 Bereavement and Care of Relatives group, speaks openly about bereavement. Here, she urges society to recognise and be open about loss.

There is nothing more certain in life than death; we just don't know how or when it will happen. When my dad died, no one, except my partner, spoke about him again; perhaps scared of upsetting me. I was 20 years old, and felt totally lost. My mum died a few years later, followed by my grandparents, and then my partner just a few years ago. He made every effort, after they died, to keep my parents present in our lives by talking about them; enabling our children to hear stories of their grandparents as they grew up. It was one of the kindest gifts a person could ever give to someone who has been bereaved. When he died, I didn't want our children to experience that same eerie silence; so I make the same effort that brought me such comfort, to talk about their dad and grandparents and continue bonds with those we hold dear to us. Over the last two decades, I have learned a lot about grief, personally, and professionally. I've watched my children grieve, and heard the stories of bereaved strangers through my research.

Since the Covid-19 pandemic began, death has become part of daily conversations and news stories. Physical distancing measures to protect infection have led to an inability to mourn in traditional ways, or physically comfort those outside of our household.

Impact of grief

When someone you love dies, it hurts, both physically and psychologically. Yet those who have been bereaved describe others who haven't as walking on eggshells around them. Enabling conversations about someone's 'person' can reduce feelings of loneliness and isolation. People often open up to me, as I am open with them, and we see this level of openness in bereavement support groups.

Collective grief, even when the bereavement is not personal, could lead to grief outcomes. Grief impacts upon our mental health, cognitive abilities and health behaviours. Grief following sudden, unexpected, and mass loss of life may follow a different course to more 'natural' deaths. Levels of emotional distress such as low mood, anxiety, depression, and complicated grief (e.g. yearning or lack of acceptance) can develop across all ages. Concentration, self-esteem or quality of sleep may decrease. In an attempt to escape or cope, detrimental levels of alcohol or drug use, poor diet, lack of activity, self-harm or overworking may be seen

Re-grief during Covid-19

Evidence suggests individuals can experience re-grief, with feelings from a past bereavement returning following a trigger (e.g. milestone life event). For those already bereaved, the Covid-19 pandemic may trigger thoughts and feelings related to the loss of their person, evoking a re-grief response.  

While some would conceptualise grief through stages (such as anger, depression and acceptance), I propose a more helpful concept of 'Your world and the ball of grief', adapted from 'the ball and the box' analogy. Many would argue we do not get over or move on from grief, but that it stays with us and instead your world grows around it and you learn to move forward. In this analogy, at the time of a bereavement, your world is almost completely consumed by a ball of grief, which can repeatedly hit a pain button leading to grief outcomes. Over time, rather than the ball of grief getting smaller as some would suggest, I'd argue that the ball of grief stays the same, but your world gets bigger, making it less likely to constantly hit that pain button.

Covid-19, re-grief and grief empathy

Those who have been bereaved often feel better understood by others who have experienced a loss. In our research, we've interviewed young people who have experienced the death of a parent. They share the pain that is felt when someone you love dies, and tell us they feel comfort in being around 'someone like me,' giving them a greater sense of empathy. Covid-19 and the national bereavement it has caused may be leading those who have been bereaved before to feel unsettled, and think of their person more than usual. But they may not realise why this is. It may be linked to a sense of grief-empathy, that perhaps intensifies feelings of re-grief, as additional 'balls of grief' are added to their world, making it feel overwhelming (Figure 1).

Covid-19 and anticipatory grief

During times of mass death a sense of anticipatory grief may also occur, leading people to imagine a scenario where someone else they care about dies. This may be exacerbated by news reports and official advice of ways to reduce risk of death, evoking feelings of anxiety. When we feel anxious and overwhelmed, it is common to enter a 'fight or flight' response, which could lead to unintended negative outcomes such as denial of the threat, anger, isolation, substance use or self-harm. Social support can help during these times; however, the rules of social-distancing during Covid-19 limit physical contact from friends and family. These restrictions to physical connectedness are likely to be detrimental. As a society we need to find other ways to reach out to those grieving.

Physical activity as a behavioural medicine for grief

Physical activity can provide significant benefit to those who have been bereaved, and this is particularly found in outdoor activities. The importance of outdoor physical activity has been seen during the Covid-19 'lockdown', whereby it is one of the few reasons people are encouraged to leave their home. Being physically active can reduce grief outcomes, including levels of depression, anxiety, loneliness and post-traumatic stress disorder (PTSD). It can also build social support and a sense of belonging.

With all this in mind, we developed the #ECLIPSETogether programme. This aims to see Everybody Connected through Loss In Physical activity, Sport and Exercise, Together. This programme encourages everybody around the world to take time to be physically active and join others to connect and remember loved ones.

Embrace ways to connect

Being aware of grief responses and the promotion of physical activity to benefit grief outcomes could be supportive in times of bereavement. Given the current wide-scale loss of life, we must recognise and enable open grief. While the world is grieving, please don't feel alone or uncomfortable talking about grief openly. Instead, let's make it the norm to talk about grief, embrace ways to connect together and continue bonds with those you love.  

- Angel Chater

Shahina Haque is the Family Support Services Manager at Saint Francis Hospice, Essex, and spoke to Ella Rhodes about the impact of Covid-19 on working with people with life-limiting conditions.
Since the pandemic came to the UK the nature of Haque's work has changed immeasurably. Before the crisis, as well as supporting a caseload of clients, Haque managed the hospice's family support services, which includes the bereavement service for patients and their loved ones, its child bereavement service and pastoral care services for spiritual and religious support. Since then all of the hospice services have moved to the telephone or online with Haque supporting her team through that transition. 'It's been a balance of supporting my team, the teams around the hospice and supporting clients. The intensity of the work has increased, we aren't getting as many referrals as we would have but the level of support we're providing has increased.'

Working with patients who have life-limiting illnesses during lockdown has been a challenge for both clients and members of staff. 'Before the pandemic we helped people to focus on making memories and spending quality time with their families – but like most of us they're not allowed to see families and aren't able to make the most of their time. A lot of our patients are worried about dying from covid-19, our clients don't want to die in pain and want to have a peaceful death. There's also been a fear of not getting treatment.'

Haque said she and her team had found at times working during the pandemic to be an isolating experience, although a small group still work within the office maintaining social distance, a team of staff is on standby working from home if the office team become unable to work. 'We're hearing about similar things that our clients are going through that we're also going through, similar anxieties – we've been asking how we can detach from that without losing ourselves in it. A lot of my team have elderly parents, or vulnerable family members and are worried about them. There's a lot of conversations that happen in the office about these things, and they need to be nurtured, acknowledged and respected. When we were all in the office we could just walk in after a difficult conversation or session and share a cup of tea and talk – we miss that and found that very helpful. The team are doing incredibly well and I'm very proud of them.'

Haque said the pandemic had affected the ways she and her team spoke about death and dying with clients and one another, and wondered whether the public more generally may change the conversations they have about death. 'I think we will be talking about complicated grief for a while… as a society I'll be curious to see whether we embrace the learning that has come from this.'

Once the Covid crisis has diminished, and all staff are able to return to the hospice, Haque said she would be interested to see how various types of reunion play out – between colleagues who have been apart for months while remaining socially distant and between therapists and clients who have only spoken on the phone. 'I wonder what that reunion will look like and how it will impact on the therapeutic relationship. I think [for clients] on an emotional level actually seeing the person that's helped them through this difficult period will add another level to that relationship.'

'You don't need words of wisdom'

Psychologist Bianca Neumann-May is no stranger to talking about death and dying. A team leader for the St Nicholas Hospice Care family support team in Suffolk, Neumann-May said that thanks to modern medicine we are less familiar with death than we might have been in the past. 

'Most people think a hospice supports someone dying in its building, on its ward… this is an important part of what we do, but at any one time we are supporting hundreds of families in the community, wherever they call home. We provide open access bereavement support across the communities of West Suffolk and Thetford. This includes psychological support for people facing death as well as their families, friends and loved ones.'

Neumann-May and her team are also involved with encouraging and supporting the local community to have conversations about dying, death, caring and grief. 'People felt comfortable having these conversations before we had antibiotics, health and social care, early intervention services and preventative measures. As we have become less exposed to death, as a society we have lost our ability to talk about it.

'If loved ones were able to have an open conversation it would mean they would be able to make time for those important things like holding hands, reading, knowing what songs to play. Conversations might also give the person dying a sense of control over some of the more practical things, they can tell you where to find the will, what they want to happen to their belongings. Conversations and the expression of wishes make us more in charge of death.'

As well as helping people to talk through their wishes Neumann-May has been working with the local community – using a Compassionate Communities model. 'A Compassionate Community is a community that provides support to someone who is dying. The community could be family, neighbours, local organisations, a faith group, local businesses or people living in a particular area.'

She and her colleagues have also prepared a bereavement management plan that suggests alliances which need to be formed or strengthened in the community to prepare people for both a higher level of death or dying and the increased prominence of death and dying in the wake of Covid-19.

'We have made contact and exchanged ideas around the plan with minority groups and hard to reach populations like the prison population, refugees, BAME communities, special needs services and multi faith groups around educating these groups and leaders on grief and loss as well as offering a knowledge exchange so that we learn about these groups too. We've been learning about strengths and customs, about resilience and community spirit, boundaries of accessing services like ours so that we are actually making a more cohesive society with an energy and urgency of mutual support that continues beyond the current crisis.'

Neumann-May and her colleagues have created a wealth of resources for talking about death and grief with children and adults which are all available via www.stnicholashospice.org.uk. In short Neumann-May suggested the following tips for talking about death and grief: 'Listen. You don't need words of wisdom! Ask what they need right now. Take their distress seriously. Show empathy and compassion. Ask them what they do that brings them joy usually (this may be something they used to do a long time ago). Create opportunities to remember the deceased, talk about the funeral. Offer practical support such as making meals or help with laundry, childcare, grocery shopping, lifts to doctors, community groups or events or the cemetery.' 

Illustration: Nick Oliver

Find British Psychological Society resources on bereavement; and much more in our archive.