The distinguished writer on bereavement, Colin Murray Parkes once wrote that ‘grief is the price we pay for love.’ It is a price which many have had to pay in deep measure in the 15 months that have passed, and which thousands are still paying. In this piece I want to reflect on the issue of bereavement and what we may have to do as a society to properly support those who have experienced death during the pandemic.
There are three groups I want to give particular focus to but that in no way should be seen as suggesting either their higher priority or indeed that there are not others impacted in an equal way by bereavement during Covid. The three are staff who work in care homes; the residents of care homes and lastly family members of those who have died in hospital, care home and community.
There is already an emerging literature and research focus on the experience of death, dying, grief and bereavement during the pandemic. At the launch of the UK Commission on Bereavement on which I am honoured to be serving, I heard a detailed description of the excellent research which is being carried out by Drs Emily Harrop and Lucy Selman. Their study has highlighted the difficulties and distress people experienced when trying to get support after the death of a loved one during the pandemic, with more than half of people (51 per cent) experiencing high or severe vulnerability in their grief and those seeking support facing long waiting lists or being told they were ineligible. The study also showed that of bereaved people demonstrating high or severe levels of vulnerability, three quarters (74 per cent) were not accessing formal bereavement services or mental health support. These are very worrying and challenging initial findings.
Internationally there has been an emerging recognition of unique pandemic grief responses and a growing acceptance that there is a strong likelihood that we will witness a significant growth in people presenting with what is termed ‘prolonged grief syndrome’.
Prolonged grief syndrome.
Grief is normal and natural. It is part of the rhythm of our living. When we experience the death of someone we know or someone close to us it is as if the earth beneath our feet quakes with their absence, we lose our footing and take time to steady ourselves. Grieving is a journey onwards into a new way of being in the world and with others in the absence of the loved one. Over time, we learn to live without that familiar voice, without their smell, presence, and touch. But grieving is invariably lonely, painful, and sore deep inside our very being. We slowly re-orientate our journey of life and our steps take on a different pattern and shape, as we travel to a new destination without the person who has died.
But for some people this adjustment and change does not happen. Their grief is blocked, their hurt simply overwhelming. They may end up experiencing what has become known as prolonged grief disorder or syndrome (PGS). Psychological experts have stated their belief that up to 10% of all who experience death will be impacted at some stage by PGS. The World Health Organisation describes it as ‘a pervasive yearning for the deceased or a persistent preoccupation, accompanied by intense emotional pain. In addition, individuals with PGD have difficulties enjoying social activities, experience a reduced capacity to feel positivity and possess a general inability to accept the death of a loved one.’
In a helpful paper, Lise Johns and others, describe the risk factors which may make PGS more likely:
- experiencing more than one death within a short period of time;
- a strong dependency on the person who died;
- the death was shocking, premature and unexpected;
- the death could be perceived as preventable;
- witnessing the death, or suffering alongside the deceased person if they died following a protracted illness;
- previous history of mental illness, especially post-traumatic stress disorder (PTSD) or depression.
Numerous scholars and clinicians are now suggesting that one of the legacies of Covid19 will be a significant increase in the number of people suffering from PGS. Indeed, the sudden and swift nature of Covid death for so many means that Covid deaths are often shocking and surprising. There is equally a lot of emerging commentary on ‘Covid guilt’, self-critical behaviours characterised by a belief that you could have done more to prevent the person becoming infected, as well as evidence that many of those who have died from Covid have experienced ‘hard’ and ‘traumatic’ deaths. All of these fit a definition of PGS.
Care home experience
We know that right across the world aged-care facilities or as we describe them in the Scotland, nursing and residential care homes, have been disproportionately impacted by high numbers of deaths because of the Coronavirus pandemic. Speaking to both frontline staff in Scotland and to colleagues across Europe I am very aware of the profound impact that this experience has had upon staff. I would argue that this is a unique grief experience in the sense that it is unlike any other equivalent experience and that not only will it result in prolonged grief syndrome but that there are factors as well as those noted above which may well benefit from academic colleagues undertaking further research and clinical investigation, in order to categorise the experiences and response as a distinct Covid grief syndrome and to thereafter identify specific and bespoke psychological and trauma therapy responses.
A care home resident in Scotland on average spends between 18 months to two years in a care home but in many instances, especially in residential care, this can be a much longer period, potentially up to 8-10 years. It is inevitable, therefore, that over that time a resident gets to know their fellow residents and staff extremely well. Whilst staff come and go and continuity of care has always been an issue in the sector, it is equally true that there are many thousands of care staff who have worked in the one care home or organisation for a long number of years. This results in the formation of deep, close personal relationships – not in divergence from but complementary to the relationships a resident has with their family. Perhaps this is especially the case for the estimated 1 in 10 residents who have no close family proximate to them and for those who live with dementia for whom figures of recognition become so important.
It is a sad reality that for many hundreds of care home staff that outbreaks resulted in the deaths of a large number of individuals over a brief period of time and that the nature of these deaths has been especially upsetting. That in itself is traumatic and is something shared with colleagues in emergency and acute medicine. What is markedly different, however, are the often intense and long-held relationships which care staff have formed with those who die compared to even staff working in intensive and emergency environments in the acute sector.
I know from my conversations that staff have been left traumatised and deeply shocked by what they have experienced and witnessed. Just a couple of days ago a senior palliative colleague expressed concern at the impact the multiple sudden deaths of residents was having on the young staff team in a particular care home.
Staff, I have been told have supported each other and have where necessary had additional psychological support and there is no shortage of virtual support. But I remain unconvinced that there has been an appropriate recognition of the distinctive grief trauma which care home staff have experienced and are still enduring. I profoundly believe more work needs to be undertaken in this area. What we are witnessing is that staff have struggled through the first wave, have been determined not to give up but to keep people safe and have worked through the second wave. But when they have had the opportunity to take a break, to switch off then they have frequently either not returned to work or have returned only to leave after a brief time. The workers whom I have spoken to in these situations are frequently manifesting behaviours and responses which have at their core an inability to process and deal with what they have lived through and the grief which has resulted. We need to do more for this amazing cohort of professionals. In passing, I would also comment that concern is being raised for those who have ‘got on with the job’, those who have returned and have not wanted to or are unable to open up, to talk and share their experiences. For some this might be a coping mechanism but the inability or lack of willingness to talk through such hard experiences is well recognised as a challenge.
The second group who I feel have often been ignored or forgotten about in our support for the bereaved have been care home residents themselves. Just picture the scenario. You are living in a community with others who help to make your life meaningful and purposeful, who are your friends and acquaintances. Together you have formed groups of interest and affection. Then the pandemic hits and the chilling exclusions of isolation together with the loss of familiar activity and exchange; the removal of the rituals of routine and predictability leave you very much alone but for the care and compassion of staff. Add to all that unreality the lack of contact with family, friends, and acquaintances unable to come into the care home for a very prolonged period. Then you may experience living in a care home where there is an outbreak. What do you feel like when not one but maybe a dozen of your friends, people with whom you have spent time and relationship, die within days?
The experience of residents during lockdown is increasingly being explored but the impact of the deaths of friends and fellow residents has not received much attention. It needs to. Whilst a renewed focus on the physiological impacts of the pandemic on residents is imperative, I am concerned that we are not sufficiently focussing on the emotional and psychological impact of the pandemic especially the grief of our care home residents.
Some have suggested to me that my concerns are misplaced and that because so many people are living with dementias and cognitive impairment that their memories of contact and their sense of loss and grief is less significant and troubling. I find such attitudes to be offensive and totally inaccurate. They are equivalent to the attitudes I encountered years ago when professionals suggested that those living with profound and multiple learning disabilities did not experience grief. People even in advanced stage dementia evidence behaviours which are clear grief responses, sometimes evidencing behaviour which challenges. These are manifested in many ways but it is clear that for some the fear and inner anxiety of not knowing what is happening, of losing the pattern of predictability and the comfort of routine, of being unable to be consoled by touch, of masks worn which have distanced empathy and the absence of families, have all had a profound impact.
We owe it to the dignity of their humanity to make sure that appropriate grief and bereavement support is in place so that the Covid grief care home residents have lived through and are still experiencing is addressed.
The third group I believe that is deserving of greater focus are those who have had to endure the absence and separation from loved ones as they have spent the last weeks and days of their lives. This has been hell for so many, moments that will never be re-captured, days that will never be had again. Whether it has been in hospital or in care home, despite all the efforts of many staff, the effect has been an absence of consolation from the hands of those who matter the most. I know from email and conversation that this aching inability to be present has cut deep into the hearts of many, it is a sore which seems incapable of healing.
We cannot turn the clock back, much as many of us would wish but we can not only learn the lessons so as never to repeat them, but equally important we must ensure that we are present and there in word and deed to support those who are left bereaved and grieving. As the world rushes to re-frame its normality, there is a danger that the fractured lives of those who grieve will be forgotten and ignored. They cannot be. We must strive to not only talk about but to actively support in practical ways the needs of the Covid bereaved. The Harrop and Selman research shows just how far short we are failing in this regard.
Covid19 has left its scars on our humanity, it cannot be allowed to continue to wound that humanity still further. Whether it is recognising the distinctive psychological and practical needs of care home staff, the necessity to adequately address the grieving of care home residents, or to bring solace to the suffering of the bereaved relatives and friends, there is an urgent task which cannot be delayed.
Speaking at the launch of the UK Commission on Bereavement and as chair of the group, the Bishop of London and former Chief Nursing Officer, Sarah Mullally said:
“To have to choose a very small number of people to be present at a loved one’s funeral, not to be able to hug and to hold one another, to be unable to gather with a large group of family and friends in someone’s home or a restaurant or pub afterwards is another series of losses, heaped on top of the raw grief. In some cases, this has included the additional trauma of having been physically separated from the person we love as they have died.
“In the wake of so much loss, we now risk a post-pandemic bereavement crisis.