Bereavement is a universal experience, yet grief experienced following the death of a close family member or friend can cause considerable distress and impact on long term health and wellbeing.
Following bereavement, many people manage their grief with the support of family, friends and their local community. However, some bereaved, particularly those who experience severe grief symptoms or who lack social support, may also benefit from support provided by health care and community services.
Bereavement care involves the work of a wide range of health care and bereavement professionals. In the UK, bereavement care is predominately delivered within community settings, by charitable and voluntary organisations. The National Institute for Healthcare and Clinical Excellence (NICE) recommends a three-tiered approach that tailors bereavement support according to need, ranging from universal information provision to targeted psychiatric interventions.
Primary care has an important role in bereavement care. General Practitioners (GPs) and community nurses offer practical and emotional support to patients, family members and carers immediately following a death. GPs can also provide onward referral for patients who require specialised treatment. However, many primary care practitioners receive little training in bereavement care and provision of bereavement support is variable.
The relevance of bereavement care now
Most people will be impacted by bereavement during our lifetimes. Despite this, bereavement care is often deemed low priority in health care policy and decision-making. As a result, availability of funding and resources for bereavement care services can vary.
Over the past 25 years understanding of the potential risks bereavement poses to mental and physical health has improved greatly, leading to an increased awareness of the associations between bereavement and causes of mortality and morbidity.
‘Prolonged Grief Disorder’ is now recognised as a mental health disorder following inclusion in the 11th Edition of the World Health Organization’s International Classification of Diseases (ICD-11).
Approximately 10% of bereaved people experience this condition, suffering severe grief symptoms that last for longer than 12 months and cause significant disruption to daily functioning.
The impact of the global COVID-19 pandemic has brought to the fore the importance of bereavement care. Deaths from COVID-19 are characterised by factors that may increase the risk of complicated and prolonged grief responses including; sudden and unexpected deaths, patient isolation and severe symptoms including breathlessness at the end of life.
Social distancing measures have had a major impact on those bereaved from all causes, not only from COVID-19. These essential measures restricted visiting in hospitals, care homes and hospices, preventing loved ones saying goodbye and funeral proceedings were severely curtailed. During this period, bereaved people may feel especially isolated and unable to access the benefits of social support. People bereaved prior to the pandemic are also affected, with social isolation and interrupted bereavement care intensifying feelings of grief.
What is the significance of this area of research?
Speaking about grief remains an area of public discomfort, yet left unaddressed it may lead to significant physical and mental health morbidity and create a further burden on health and social care services. Research can help build public awareness of the availability and accessibility of bereavement support services to ensure bereaved people are not left to suffer grief alone.
The importance of bereavement care is acknowledged in National Health Service policy but it often remains the ‘poor relation’ to palliative and end-of-life care. Research into bereavement care will help improve understanding of the role of health and social care services, in particular the role of primary care and community services, in order to better support bereaved people and provide care that meets their needs.
Additionally, research can identify ways to improve resources for existing bereavement services and enable coordination between local, regional and national networks, to encourage a sustainable model of bereavement care.
Bereavement care during the pandemic
Publication: A silent epidemic of grief: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic. Caroline Pearce, Jonathan R. Honey, Roberta Lovick, Nicola Zapain Creamer, Clare Henry, Andy Langford, Mark Stobert, Stephen Barclay. BMJ Open https://bmjopen.bmj.com/content/11/3/e046872
The COVID-19 pandemic has had a profound impact on bereavement care, and increased the risk of complicated or prolonged grief responses. At present, however, it is not clear what forms of bereavement support are appropriate or effective during and following pandemics.
This study is the first to capture the scale of the impact of the pandemic on practitioners, health and social services, and bereaved families.
Health and social care practitioners in the United Kingdom (UK) and Ireland participated in an online survey concerning changes in their bereavement care practice during the COVID-19 pandemic.
Over 800 responses were received from a wide range of practitioners working in primary care and the community, hospice, hospital and care home settings.
Practitioners reported significant changes to the mode of delivery of bereavement support with the transition to remote forms of support, increased demand for bereavement care and the emotional stresses experienced by practitioners.
Relevance
The increased mortality due to the COVID-19 pandemic has left many bereaved family members facing increased difficulties in their grieving process. Deaths from COVID-19 tend to be sudden, unexpected deaths which put bereaved families at increased risk of complicated and prolonged grief.
Social distancing measures have necessitated restrictions on visiting relatives in hospital and arranging funerals which have impacted on all bereaved during this period. The availability of possible means of social support has also been affected, impacting on those bereaved prior to the pandemic.
Bereavement care providers are being forced to adapt to new remote ways of consulting and supporting patients, as well as manage the physical and emotional stress of supporting increased numbers of bereaved people experiencing complex grief. Evidence to inform practitioners and policymakers is vital to ensure bereaved people are supported over the immediate and long-term impact of the pandemic.
Case: Covid challenges & opportunities
During the first wave of the pandemic, service adaptations brought both challenges and opportunities to how bereavement care was provided.
Adapting care to online or telephone formats was particularly challenging with limited access to the equipment needed and staff requiring training to use them. Where bereavement services and resources were already insufficient, services struggled to keep up with demand.
Hospices and hospital teams reported widening access to their bereavement support to patients from across the local community or hospital, whereas this had previously only been available to relatives known to the services. In addition, services began to adopt a proactive approach to contacting bereaved people.
Collaborative efforts were described, bringing together local agencies such as hospices, district hospitals, and charities. New services were developed, often telephone helplines or online support that would offer compassionate support and information on local and national services.
Other innovations included allowing families to email pictures to place in patients’ rooms, providing bereaved families with mementoes such as knitted hearts, sending condolence cards, and arranging for the return of the deceased’s property.
Potential impacts
As the world navigates the ongoing challenges of the pandemic, urgent consideration is needed of ways to ensure all those bereaved receive optimal support.
This study highlights that bereavement care is a significant component of health and social care across a wide range of settings and clinical roles although many practitioners may at times feel poorly equipped to manage bereavement. The emotional and personal impact felt by bereavement care practitioners is a particular area of concern.
Bereavement service provision has for many years been highly variable across the UK. The study identified the development of new and expanded services, but it is unclear how sustainable these will be in the longer-term.
In the early stages of the pandemic, physical health needs were understandably prioritised. However, there is now a need to also focus on the mental health needs of the population, including the needs of the many people bereaved over the course of the ongoing pandemic.
Given the increasing need for bereavement support highlighted during the pandemic, it is imperative that policymakers, funders, health, social care and community services work together to develop a sustainable model of resourcing at local, regional and national levels.
Making a difference
This research aims to improve the experience of bereavement during and after the pandemic in the following ways:
- Draw attention to the need for improvements to service provision and ensure practitioners have the resources they need to deliver optimal care.
- Increase awareness of the availability and accessibility of bereavement support so people find help if they need it, reducing the potential for complicated grieving.
- Promote understanding that bereavement care is a legitimate part of health and social care.
- Promote understanding that bereavement care is a legitimate part of health and social care
Supporting bereavement in primary care settings
Publication: Supporting bereavement and complicated grief in primary care. Caroline Pearce, Geoff Wong, Isla Kuhn and Stephen Barclay. BJGP Open https://doi.org/10.3399/BJGPO.2021.0008
This realist review aimed to understand what works, for whom, under what circumstances and how in identifying and managing bereaved patients experiencing complicated grief in primary care and community settings. Realist review is an interpretive, theory-driven approach to evidence synthesis that is rooted in the principles of ‘realism’, a philosophy of science. Realist reviews build causal explanations for outcomes that take the form of context-mechanism-outcome-configurations (CMOCs).
Following a systematic search, evidence of the management of complicated grief in UK primary care settings was found to be limited. Therefore the search was expanded to literature on general bereavement care in primary care, resulting in a total of 42 included articles. This literature was analysed using the realist approach, developing context-mechanism-outcome configurations to understand and explain how bereavement care is managed in primary care.
The review found that primary care provision of bereavement care faced challenges in three main areas: 1) identifying when a patient has experienced a bereavement; 2) understanding patients’ expectations of a GP’s role following bereavement; and 3) communicating with and responding to grieving patients’ needs.
Relevance
Primary care is often considered to be ideally placed to support people in bereavement, yet bereavement care provision remains variable. GPs are often uncertain how to support bereaved people, and there is a lack of evidence to guide best practice. There is no consistent approach to management of grief in primary care, despite previous calls from practitioners and researchers to improve guidance in this area.
In the absence of clear and consistent guidance concerning bereavement care, assumptions, expectations and attitudes held by both clinicians and patients can play a significant role in bereavement care. Our research found that GPs and nurses report receiving insufficient training in bereavement care and awareness of complicated and prolonged grief is low. Further, practitioners’ hesitancy to offer support in bereavement may mean patients at risk of complicated and prolonged grief could fail to receive the support they need.
Case: Medicalising grief
Concerns of ‘medicalising’ grief were expressed by clinicians, and patients at times also worried that bereavement was not a ‘valid’ reason to visit their GP. Clinicians often experienced ambiguity and uncertainty concerning the extent of their involvement with bereaved patients and could feel hesitant about taking a proactive role.
In addition to this hesitancy to ‘intervene’ into patients’ grief, GPs and nurses described finding bereavement care often emotionally challenging which could contribute to feelings of low confidence and lack of preparedness.
Practitioners with personal experiences of bereavement reported drawing on these experiences to foster a sense of empathy with patients, and which could help bolster confidence in dealing with bereaved patients. Drawing on personal experiences in this way could however make encounters with patients more difficult, by resurfacing practitioners own feelings of grief.
Potential impacts on policy and practice
Being attentive to the needs of bereaved patients in primary care settings is all the more important in the context of the ongoing impact of the COVID-19 pandemic which is witnessing a rise in complex and potentially prolonged cases of grief.
Implications for research and practice include clinicians developing a better understanding of patient needs in order to provide appropriate bereavement support and taking a more proactive approach to identifying and contacting patients following a bereavement.
GPs and nurses are an integral part of developing a community level response to bereavement that focuses on developing the existing ‘assets’ of community resources and creating ‘compassionate communities’ that includes both professionals and local informal caring networks. This involves tailoring support according to risk to help ensure that neither clinicians nor patients are left to manage the burden of bereavement.
Social prescribing may be an appropriate means to offer bereavement support in UK primary care, and link worker roles could be utilised to connect patients with local services and community groups. This may allow GPs to focus attention to those with prolonged and complicated grief who may need medical attention.
Making a difference
Improvements to primary care education and training in bereavement will help ensure bereaved patients feel supported by primary care services and can prevent people from experiencing severe grief symptoms that could lead to complicated and prolonged grief.
Improved training and awareness will also help practitioners feel more confident and prepared when dealing with bereaved patients, reducing hesitancies around intervening into bereavement.
Additional resources:
A silent epidemic of grief: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic. Caroline Pearce, Jonathan R. Honey, Roberta Lovick, Nicola Zapain Creamer, Clare Henry, Andy Langford, Mark Stobert, Stephen Barclay. BMJ Open 2021;11:e046872. https://bmjopen.bmj.com/content/bmjopen/11/3/e046872.full.pdf
Supporting bereavement and complicated grief in primary care. Caroline Pearce, Geoff Wong, Isla Kuhn and Stephen Barclay. Supporting. BJGP Open 2021.0008. https://doi.org/10.3399/BJGPO.2021.0008
Story on University of Cambridge website: A silent epidemic of grief
Palliative and End of Life Care Research Group website
http://www.phpc.cam.ac.uk/pcu/research/research-groups/end-of-life-care/
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