Bereavement resource for health and social care professionals

The current coronavirus (COVID-19) crisis is having a significant impact on how people experience bereavement. For those who have lost someone from COVID-19, the events leading up to the person’s death and the shock of their death will have been very distressing. For others who have lost someone during the pandemic, physical distancing will have prevented them from saying goodbye; holding the funeral they would have liked, and getting face to face support from family and friends. In either situation, this is likely to have a detrimental effect on the bereaved person’s physical and mental health for some time.

In addition, the COVID-19 crisis is and will continue to affect bereavement services, which for now, will need to be delivered in a different way due to physical distancing.

Grief is a normal reaction to the loss of someone. Although usually thought of as an emotional reaction it can also include physical, cognitive, behavioural and spiritual dimensions that vary from individual to individual. It is common for people to feel that every aspect of their life is affected.

The table below shows some of the common normal feelings and emotions people may experience as a result of loss or losses, whether this due to bereavement or for other reasons. People may experience many of these at the same time and alternate between them.

• Shock
• Crying
• Numbness
• Disbelief
• Disorganisation
• Uncertainty
• Reflection
• Searching
• Volatile emotions 
• Anger
• Bitterness
• Hostility
• Guilt
• Regret, such as 'if only' or 'what if?'
• Frustration 
• Pain
• Resentment
• Depression
• Relief and recovery
• Reorganisation
• Longing
• Emptiness
• Confusion.

Grief may be especially intense when the loss of someone was traumatic, sudden, or severe.

Sadly, for many people, their memories of losing someone during the COVID-19 crisis, will impact their grief. These might be negative or even distressing memories of losing someone suddenly, not being able to see them, say goodbye or have what they would consider a ‘proper’ funeral.

There are different types of grief a person may experience: anticipatory, complex and disenfranchisement grief.

When someone is facing the loss of a loved one, they will usually try to prepare themselves in the way that seems right for them. Often this is displayed in emotions and behaviour which may not necessarily mirror their grief experience following the death. This can be an exhausting process as the period leading up to the death may be months or years. However, when the loss occurs, the person may feel more prepared, have put plans in place and be able to cope better afterwards. In the case of COVID-19 this preparation may not be possible: in some situations, the disease can be overwhelming and cause a sudden deterioration and subsequent death. There is still a lot of uncertainty around the nature and impact of COVID-19 on the individual, which makes it harder for people to plan ahead. This sudden loss and death can have a severe impact on feelings and behaviours and may be a trigger for a complicated grief reaction (see below).

Open and honest communication, including advance care planning discussions (if these are possible) will help the individual and their loved ones to manage this challenging time.

Grief can be immensely painful and challenging, especially in the early weeks and months. For many people the intensity of this acute pain does become more manageable as grief is integrated into life, and it becomes possible to enjoy activities and relationships again. Memories, anniversaries or times of stress can bring the acute grief back at times, but inner resources and the support of family and friends help.

But for some people, grief remains acute, prolonged, overwhelming, or seriously impairs a person’s long-term ability to function. This can be described as ‘complicated grief’ or ‘prolonged grief’ and may require more specialist support.

The Centre for Complicated Grief has produced a short video explaining what complicated grief is:

There are many factors that contribute to complicated or prolonged grief. Some of these include factors caused by the current COVID-19 pandemic: isolation, limited family support, inability to attend a funeral (due to physical distancing) and also for some, coping with a sudden death.

Because of these factors there is a greater likelihood that more people will experience complicated grief post COVID-19.

Factors that could contribute to complicated grief:

• family context (young, single parent, no family support)
• other losses (job, pregnancies, multiple bereavements)
• stressors (financial/loss of job, family tension, addictions)
• physical and mental illness
• isolation
• toxic ideas (‘did they die because I am a bad person?’, ‘did I pass on the virus?’)
• type of loss (sudden, child, adolescent, suicide)
• unable to engage in mourning (unable to attend funeral, social distancing, estrangement)
• professional decisions overriding personal choices (for example: place of care of a loved one; escalation or non-escalation of care; admission to intensive care unit or not).

Although managing complicated grief may not be part of your role, it’s important to know who to signpost a person to. For example, their GP or local bereavement services if you are concerned that they may be at risk of complicated or prolonged grief.

People coping with a sudden death may experience a traumatic stress reaction and post-traumatic stress disorder (PTSD), some time after the death. If you are supporting someone who has experienced a sudden death, Sudden has advice for carers and friends.

This type of grief may occur when an individual is unable to publicly mourn the loss of a loved one. For example, disenfranchised grief related to COVID-19 might happen if family or loved ones feel they cannot publicly mourn the death of someone because of shielding/self-isolation restrictions.

Ken Doka, the creator of the term disenfranchised grief, discusses how it originated and why it is important:

NHS Scotland have produced:

• a video about talking and being with people who are bereaved
• a guide on dos and don’ts of communication for those who are bereaved, which have been developed by Cruse Bereavement Care.

Macmillan has top tips for providing bereavement support in a resource for primary care teams, which is also relevant for other health care professionals.

Macmillan also resources to help prepare a child for loss. These resources are for people with advance cancer, but they are relevant for health care professionals: 

• Booklet
• Digital.

The British Psychological Society has information on supporting yourself and others while coping with death and grief during COVID-19.

The death of a colleague can be a challenging and emotional experience. Below are resources available to the health and social care workforce.

NHS Education for Scotland have produced:

• a document for staff teams and managers in health and social care experiencing the death of a colleague during the coronavirus (COVID-19) pandemic
• guidance for managers supporting employees who are bereaved.

It is important that you look after yourself too as giving support to others can be emotionally draining. We have information on emotional health and well-being for health and social care professionals.

• The British Psychology Society - Death and grieving in a care home during Covid-19: The experience of care staff, residents and families
• Macmillan Cancer Support - In Your Area
• Winston’s Wish
• Mind
• AtaLoss.org
• The Good Grief Trust
• Sudden
• Marie Curie
• National Bereavement Alliance - Keeping in touch with someone who is sick enough to die
• NHS Scotland – Support around death
• NHS Education Scotland – Supporting LGBT+ people around bereavement
• Good Life, Good Death, Good Grief
• Dying Matters
• PCPLD Network
• Parkes CM. Bereavement in adult life. BMJ. 1998;316(7134):856‐859. doi:10.1136/bmj.316.7134.856 Bereavement in adult life
• PDQ Supportive and Palliative Care Editorial Board. Grief, Bereavement, and Coping With Loss (PDQ®): Health Professional Version. 2020 Jan 13. In: PDQ Cancer Information Summaries [Internet]. Bethesda (MD): National Cancer Institute (US); 2002-.
• Wallace CL, Wladkowski SP, Gibson A, White P. Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers [published online ahead of print, 2020 Apr 13]. J Pain Symptom Manage. 2020;S0885-3924(20)30207-4. doi:10.1016/j.jpainsymman.2020.04.012.