Way back in 1917, Sigmund Freud set out what he believed to be the important distinction between mourning and melancholia (or what we would call depression). In his paper of that title, he observed that the symptoms of both are very similar – withdrawal from the world, the loss of interest in anyone and anything, ‘profoundly painful dejection’; the key difference is that, when we are mourning, ‘we know so well how to explain it that this attitude does not seem to us pathological… we rest assured that in a matter of time it will be overcome and we look upon any interference with it as inadvisable or even harmful’. With melancholia, ‘the patient cannot consciously perceive what it is he has lost’, or ‘he knows whom he has lost but not what it is he has lost in them’. It is an unconscious loss. And the other important distinction is that ‘in grief the world becomes poor and empty; in melancholia it is the ego itself’. The melancholic ‘berates himself’, ‘vilifies’ and despises himself as being ‘incapable of any effort and morally despicable’ and ‘commiserates his own relatives for being connected with someone so unworthy’.
It’s startling to read such a clear description of a phenomenon that is, arguably, besetting much of the Western world right now. We are seeing a greater prevalence of grief in extraordinarily grief-full times, and there is a growing realisation that maybe we need to come up with different ways to support those struggling with their grief, because current resources may not be enough.
We are living in a time of grief – we are grieving not just the millions of deaths from COVID-19, but the loss of much that we previously thought we could take for granted. Despite all our medical breakthroughs and technologies, we have discovered we are not in control, and that a tiny virus can evade all our protective barriers and overwhelm us. We are grieving the loss of our assumptive worlds1 – that is, the beliefs and values that grounded and secured us, that gave us confidence that we could keep ourselves and those we love safe.
Prolonged grief disorder
ICD-11 defines prolonged grief disorder (PGD) as a ‘persistent and pervasive grief response characterised by longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain (eg sadness, guilt, anger, denial, blame, difficulty accepting the death, feeling one has lost a part of one’s self, an inability to experience positive mood, emotional numbness, difficulty in engaging with social or other activities)’. The DSM-5 definition is broadly similar. The length of time when grief becomes seen as ‘pathologically prolonged’ is one year.
In the US, leading bereavement researcher and psychologist Professor Robert Neimeyer has published several papers on the impact of COVID-related deaths on people and their risk of developing PGD.2
He has found worryingly high levels of PGD among the COVID bereaved. Using the Pandemic Grief Scale, which he developed and validated with his colleague Sherman Lee, he found that more than two-thirds of a sample of some 850 people in the US who were bereaved by COVID were experiencing what he calls ‘the shadow pandemic of dysfunctional grief’ and would benefit from specialist interventions to help them make meaning of their loss, both of the death itself and the surrounding circumstances, including the mourning and funeral rituals.
His research with a UK sample of 183 people found similar results – most reported PTSD symptoms (83.1%), psychological distress (64%) and functional impairment (56.8%), and 39.3% reported clinically significant symptoms of dysfunctional grief. Disrupted meaning was a key factor across all four findings, he found. Further analysis of these data showed that particular circumstances of pandemic loss – such as the inability to be with the loved one at the end of life because of hospital safety protocols or Government restrictions, and dissatisfaction with funeral arrangements – accounted for 59% of the variance in functional impairment and 71% of the variance in dysfunctional grief.3
He estimates a 9.8% prevalence of PGD among those bereaved through COVID. Given that, on average, around nine individuals are bereaved by each death, and how many people died during the past two years, not just of COVID and of other causes too, but subject to the same restrictions, that is a lot of people likely to need specialist psychological support.
In the UK, the Bereavement During COVID study at the universities of Bristol and Cardiff has been exploring end-of-life experiences and bereavement (of any cause of death) through COVID during the period from 16 March 2020, when the first infection control restrictions were implemented, until 2 January 2021. It has similarly reported experiences that would render the bereaved at risk of complex bereavement reactions among the 700 participants in their survey – restricted funerals (93%), limited contact with other close relatives or friends (80%), loneliness and social isolation (67%), being ‘unable to say goodbye as I would have liked’ (64%) and lack of support following the death (35.4% of participants reported that they felt ‘not at all’ supported by professionals immediately after the death).4 The qualitative findings vividly report experiences that would ring alarm bells for most grief specialists.5
Says Emily Harrop, one of the lead researchers, ‘People described the distress and guilt caused by being unable to say goodbye and provide comfort to their dying relative; parents also described the added confusion and upset caused to their children by being separated from grandparents before the death. Having unanswered questions, regrets and doubts made it harder to process and reconcile their feelings surrounding the death, and these difficulties were reflected in the numbers of participants – some 60% – reporting high or fairly high needs for help dealing with their feelings about the way their loved one died.’
Other key factors included restrictions on funeral and memorialisation practices that meant people were unable to support one another and mourn collectively, which in turn made it difficult to find closure and begin to grieve, she says: ‘These grief difficulties are consistent with the findings of the US pandemic study,6,7 that disrupted meaning contributed to worse grief outcomes, and that higher levels of functional impairment occurred for all deaths during COVID-19 compared with pre-pandemic times.’ The researchers are still analysing results that will show if the degrees of distress would be enough to flag up risk of PGD.
Developed by Maggie Stroebe and Henk Schut, the ‘dual process model’ of grief conceptualises bereaved people as oscillating between their preoccupation with their loss and grief and continuing their usual, everyday life and activities. Ideally, in ‘normal’ grief, the ‘loss-oriented behaviours’ lessen as the ‘restorative behaviours’ are resumed. Stroebe and Schut have recently published a paper8 listing how the different types of pandemic-related bereavement circumstances have impeded both aspects of this process. Not only did the circumstances of the death (whether COVID-related or not) block coming to terms with the loss, but COVID restrictions on everyday life also meant restorative factors were harder to achieve, as people experienced sweeping restrictions and changes to their work and family life, their ability to pursue their usual distractions, comforts and routines, and their very fundamental senses of control and security.
Says psychotherapist Julia Samuel: ‘Grief is complicated by regrets – all the “what ifs”, “why didn’t I?s” and unsaid expressions of love. This alone can lead to complex grief. But it is also intensified because the task of mourning is to face the reality of the loss and, through that, process the grief, and over time accommodate the loss. During the pandemic, people could not be present at the bedside in many cases, and funerals were sometimes online or with very few people. It meant the experience was surreal. So many people have said that to me – “I still feel numb, it’s totally surreal”. And when the world unlocked, they still felt frozen and disconnected.
‘The single biggest predictor of good outcomes for those who are bereaved is the love and connection to others. Isolation and lockdown meant so very many people did not have the comfort, love and support of their neighbours, friends and family. The loneliness and chilliness of grief were exacerbated.
‘I think the fallout from this will be filling our therapy rooms for years to come,’ she warns.
Timeliness of support is also important, and here too, the Bereavement During COVID study showed that people faced difficulties and long waiting times to get help, exacerbating their isolation and potentially impeding their ability to process their loss. What helps is revisiting and talking about the death, the loss, again and again – whether that is with a therapist, a volunteer supporter, or with peers.
Says psychotherapist Juliet Rosenfeld: ‘Freud is so clear about the difference – depression is when you don’t know what is lost; with death, the person you loved most in the world has gone. In the work with depression, you are trying to work out what got lost; with bereavement, you know what is gone, but the work still takes a long time because it is so hard to believe it at the level that is necessary to accept it. The person has to relentlessly reality test.’
Freud originally conceptualised mourning as something that passes as the person ‘tests the reality’ and confirms the person no longer exists and so gradually detaches themselves emotionally from the dead loved one, and finds a new object for their love. But, says Rosenfeld, he changed his mind after his daughter Sophie and then his much-loved grandson Heinele died. We don’t ‘move on’, Rosenfeld says; we find a way to live with the loss, even if we do find a new ‘love object’. ‘Some losses you can never replace,’ she says, and perhaps especially the deaths of children, which can defy all attempts to make meaning of them.
Paul Boelen is a cognitive behavioural therapist based in the Netherlands who has researched and worked with PGD for many years. Like Rosenfeld, he says the central element of successful grief work is acceptance of the reality of the death. PGD has similarities to depression but it is really about separation distress, longing, yearning, a sense of unrealness about the loss, and searching behaviour, he says. ‘It is qualitatively different to depression, but the maintaining mechanisms – avoidance, withdrawal from usual activities, lack of motivation that drives the withdrawal – we see that in depression and PGD. They have similar maintaining mechanisms but different symptoms.’
As a CBT practitioner, he uses exposure to challenge the avoidance: ‘What is striking in research is that a strong predictor of complex grief is the fear people have of the intensity of their pain – they endorse statements saying the pain would be unbearable, too intense. Such catastrophic misinterpretations or phobia-like predictions are strong predictors of complex or prolonged grief. CBT is about targeting that avoidance and gradually confronting the loss, the irreversibility, the pain, the implications, but very gently, at the pace of the client, which is central to the approach. CBT asks the client to test these fears. We don’t aim to take away the pain; we try to turn the unhealthy grief into healthy grief that people can live with. So the grief doesn’t necessarily decrease but people learn how to build their activities around it and are less preoccupied with their loss.’
At St Christopher’s Hospice in south London, the Bereavement Support Service offers a 12-week person-centred counselling programme. Says Paul Parsons, Bereavement Service Co-ordinator: ‘People need to share their story first. In the past, you might have found in 12 sessions you’d have a beginning, middle and end, and the end would be really solid thinking from the client about their next step. But it feels now as if the work is just putting people back on the first step of a manageable grief pathway. The bulk of the work is about them telling the narrative a lot more and, as we get towards the end, there’s still a huge relief to have told their story. There isn’t quite that sense of achievement from the counsellor’s perspective of knowing what the client will do next, but we have to trust that we’ve been good enough for the amount of time that we have with this client, and we do allow re-referrals.’
Building a grief community
Given the scale of probable need – unsurprising, given the massively increased exposure to bereavement stressors – how do services meet it, and in a timely way? John Wilson is Director of the Bereavement Service at York St John University Counselling and Mental Health Clinic (CMHC), and an honorary research fellow of the university. He set up a Facebook group for people bereaved by COVID in the very early weeks of the pandemic. It was, he and colleagues decided, the best way to reach people who would be needing help now and, moreover, because it was online and so global, would be a resource that would be available 24 hours a day every day; given time-zone differences, someone somewhere would be there for people to talk to at any time of day or night.
Several counsellors asked to join the group, some of whom had been bereaved themselves, and Wilson recruited and trained them to act as facilitators. He says facilitated peer group support is invaluable for people because telling their stories and sharing support are such a crucial part of the meaning making process. The facilitation is key: ‘There is a danger that new people join and just pile on the negative stories, and people can find that quite triggering,’ he says. ‘It’s essential that there’s someone there to offer hope and reassurance that they will come through this.
‘The key mechanism in people’s recovery is the exchange of stories. People can’t make sense of the death – because they weren’t there, they had to rely on reports from healthcare staff, they’ve been denied the eulogies and conversations after the funeral – it’s delayed grief and, as the research has found, people aren’t recovering. But we have been monitoring participants in our Zoom groups that we’ve also been running, using an Assimilation of Grief Experiences Scale that we developed to measure how well participants are beginning to accommodate their loss into their lives, and it’s clear that, even when the rest of their lives are still difficult, and they may be struggling with their anxiety and depression as shown on the PHQ and GAD scales, their relationship with the deceased and making sense of the death steadily improve. We are seeing changes and adaptation in the people in our groups.’
US family therapist, academic and writer Dr Pauline Boss is taking a different approach. Originator of the concept of ‘ambiguous loss’, after years of writing, teaching and training practitioners, she has written her latest book, The Myth of Closure,9 for the general public (reviewed in this issue). ‘Ambiguous loss’ may be physical or psychological. Physical ambiguous loss refers to deaths where there is no verification of the death itself – no body, no death certificate, for example. It can also apply to other losses, such as a job, money, and even the ability to mourn together, as happened in the time of COVID. ‘Psychological losses are amorphous and much harder to identify and quantify,’ Boss says. ‘For example, they could be loss of trust in the world as a safe place, loss in trust that your friends are safe enough to be physically near you, loss of feeling secure about going to buy groceries, of being able to go about your daily routine, go out of your house and feel safe. It is a really long list.
‘But people don’t notice psychological ambiguous loss; we know about deaths, we generally know what to say, and we have the rituals to mark those losses and give comfort to the griever. They all involve community, people offering comfort to the bereaved. With ambiguous loss, because it is unclear, it is unnoticed, which means the person is suffering alone, in isolation.’
And the result is widespread anxiety and sadness. But, she stresses, ‘anxiety and sadness are normal reactions to abnormal situations – and we have had an abnormal situation for going on three years now. And the treatment for such sadness is human connection.’
Her aim with this book is to encourage people to recognise that they are resilient, they are able to come through such losses, by drawing on their own and others’ strengths and support. ‘The counselling profession is very much needed for people who have depression and are suicidal and so on. But for the rest of us, what we need is psychoeducation,’ Boss says. ‘I believe it’s information that will help people to cope with the natural stress that comes out of an unnatural situation. There are long waiting lists for professionals and we need to know that not the entire population needs to go into a therapy room. There aren’t enough therapists to do one-to-one therapy and nor can many people afford it, so you need to give out psychoeducational material so they can help themselves and each other.’
And it does seem to be something that organisations providing bereavement support are increasingly realising, as demand overwhelms capacity and waiting lists grow. At Cruse, the national bereavement support charity, Clinical Director Andy Langford says demand was already rising before COVID hit the UK: ‘We have also been finding that people are more willing to talk about their grief – there’s more disclosure and more insight into their grief.’
But there is a danger that, by siloing off grief support into an ‘expert’ domain, we disempower the confidence and capacity of communities to support each other, he argues. Cruse has very recently launched a project to explore how you establish a ‘bereavement-friendly and compassionate community’, with pilots in five locations in the UK, running for the next 18 months. It has also redesigned its website and is making more use of social media to provide information about ‘understanding grief’ to the wider ‘grief community’ – ordinary folk who are interested both in how they can cope better with their own bereavement and how they can support others through social media.
Cruse is also piloting a new ‘Understanding Your Bereavement’ intervention that aims to empower bereaved people to help themselves and each other. Says Langford: ‘We are taking a more psychosocial approach. Bereaved people can register with us and attend an online group where an experienced volunteer will talk with them about what they can expect from the experience of grief and options for how to help themselves and others. They can then progress to breakout groups for small-group discussions. We are finding there is a desire for support but also a desire to gain more understanding about how people can support themselves and each other. We’ve had a very positive response, with the majority of participants saying they didn’t feel they needed any further support – they’d got what they needed.
‘If we can help people to help themselves sooner, those who really need ongoing one-to-one or group support can get it sooner, and we know the longer people are on waiting lists, the more risk there is,’ he says.
At St Christopher’s Hospice, Paul Parsons has similarly seen a growing demand for bereavement support, which he attributes in large part to increasing public awareness of the impact of bereavement and encouragement to seek help. The example of Princes William and Harry speaking about their mother Princess Diana’s death and its impact, and other high-profile individuals talking about their bereavement has helped the British public to acknowledge when they need help. In response, the hospice has been pursuing a policy to expand its outreach presence by setting up ‘bereavement help points’ in community settings in the boroughs it serves, and by offering a wider range of activities beyond one-to-one counselling. Says Parsons: ‘I am a counsellor and trauma expert but my whole service is about how we are not needed. Not everybody needs therapy, so the bereavement service includes a choir, art, healthy walks, coffee and tea gatherings – that social interaction with others who are going through something similar. It’s important that we ease people into reconnecting with the world around them and you do that by offering bereavement therapy but also the opportunity of connecting with others.
‘Pre-COVID, we made the decision we didn’t want to be seen to be doing it all ourselves. We didn’t want to be seen as the death experts. We know the vast majority of people don’t need formal therapy, but what they do need is information, advice, and a listening ear from others who have gone through a similar experience, so being out in the community through community centres, carers centres, churches and other such hubs is a very important part of our offer.’
Next in this issue
1. Parkes CM, Prigerson H. Bereavement: studies of grief in adult life. Hove: Routledge; 2010.
2. Neimeyer R, Milman E, Lee SA. Apocalypse now. In: Pentaris, P (ed). Death, grief and loss in the context of COVID. Abingdon: Routledge; 2021 (pp.40–59).
3. Neimeyer R, Lee SA. Circumstances of the death and associated risk factors for severity and impairment of COVID-19 grief. Death Studies 2022; 46(1): 34–42.
4. Harrop E, Selman LE. Bereavement during the COVID-19 pandemic in the UK: What do we know so far? Bereavement, 2022; 1: https://doi.org/10.54210/bj.2022.18
5. Torrens-Burton A et al. ‘It was brutal. It still is’: A qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys. Palliative Care & Social Practice, 2022: https://doi.org/10.1177/26323524221092456
6. Menzies RE, Neimeyer RA, Menzies RG. Death anxiety, loss, and grief in the time of COVID-19. Behaviour Change 2020; 37(3): 111–115.
7. Breen LJ et al. Risk factors for dysfunctional grief and functional impairment for all causes of death during the COVID-19 pandemic: The mediating role of meaning. Death Studies 2022; 46(1): 43-52.
8. Stroebe M, Schut H. Bereavement in times of COVID-19: a review and theoretical framework. OMEGA–Journal of Death and Dying 2021; 82(3): 500–522.
9. Boss P. The myth of closure: Ambiguous loss in a time of pandemic and change. New York: WW Norton; 2022.