Blog by Dr Caroline Pearce, research associate at the Palliative & End of Life Care Group, Primary Care Unit, University of Cambridge. Caroline discusses her recent research on complicated grief in primary care.
Bereavement is a normal part of life, yet the death of a close family member or friend can have a significant impact on one’s mental and physical health. While most people seek support from informal support networks, a minority of bereaved people experience severe grief symptoms, known as ‘complicated grief’ or ‘prolonged grief disorder’, and may benefit from professional support.
Primary care plays an important role in bereavement. 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 across the UK, provision of bereavement support is variable. 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.
Our realist review
We conducted a realist review to identify what works, how, and for whom, in the identification and management of complicated grief in primary care, focusing on the implications for the United Kingdom. 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).
Eight databases were searched returning 4505 references. The search results were screened for studies of adults (> 18) who have lost a significant other, whose grief and/or bereavement experience is considered complicated or prolonged, and where bereavement care support was received in primary care. Studies of neo- and peri-natal bereavement, bereaved children and adolescents, and non-death losses were excluded from review.
Following the initial screening, we found no studies of the management of complicated grief in UK primary care settings. We then expanded our search to general bereavement care in primary care, resulting in a total of 42 articles. We analysed this literature using the realist approach, developing context-mechanism-outcome configurations to understand and explain how bereavement care is managed in primary care.
Challenges for bereavement care
We 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.
GPs and nurses report receiving insufficient training in bereavement care and awareness of complicated and prolonged grief is low. In the absence of clear and consistent guidance concerning bereavement care, our review revealed how assumptions, expectations and attitudes held by both clinicians and patients can play a significant role in bereavement care.
Concerns about ‘medicalising’ grief
Across the literature 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 their involvement with bereaved patients and could feel hesitant about taking a proactive role. The perspectives of patients is underrepresented in the literature, however our review suggests that bereaved patients experience positive benefits from feeling listened to by their GP and being contacted following a bereavement.
The emotional challenges for practitioners
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.
Bereavement is a normal, natural and inevitable part of life, and raising concerns over medical intervention into grief are appropriate. However, bereavement can have significant long term impacts on mortality and morbidity. Our review suggests that 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.
Responding to cases of complicated grief
Being attentive to the needs of bereaved patients in primary care settings is all the more important in the ongoing impact of the COVID-19 pandemic which is witnessing a rise in complex and potentially prolonged cases of grief. An increase in sudden, unexpected deaths; restrictions on visiting relatives and funeral arrangements; and limited social support, present multiple risk factors for complicated grieving.
GPs and nurses have an important role in 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.
New public conversations about bereavement
The long term impacts of the pandemic on bereavement are not yet known, however, one effect has been an opening up of public conversation around death, dying and bereavement. Concerns over medicalising grief need to be discussed openly, in order to ensure that bereavement care becomes a standard part of general practice, both during and after the pandemic.
C Pearce, G Wong, I Kuhn, S Barclay: ‘Supporting bereavement and complicated grief in primary care: a realist review‘. BJGP Open, 14 April 2021
Briefing on bereavement care during the pandemic featuring this paper and recent work by Dr Caroline Pearce about bereavement.
Lucy Lloyd, Communications, Primary Care Unit