Bereavement and end of life

Helping people to live as well as possible in the last stages of life, and ensuring they die with dignity is always important, but during the pandemic it's proving more challenging than usual.

People with Covid-19 can deteriorate very quickly and restrictions on visiting sick and dying relatives and attending funerals are having a significant impact on people's mental health and wellbeing. Hospices and charities are playing an important role in helping to cope with loss caused by Covid-19.

Adapting existing bereavement support services

Support groups provide everything from advice for family and friends, to spiritual and religious support and training for other service providers. And at a time when visits are restricted to immediate family and people have not been able to say goodbye in person, supporting grief and loss is an essential service.

• Services have moved online and extra capacity has been diverted to phone support. Hospice UK is sharing links to official guidance and resources to support people, as well as collating other hospices’ response to Covid-19 and sharing this online.
  Wakefield Hospice is collaborating with other local hospices and NHS partners to offer care to patients who would not meet their usual criteria. Their grant will help staff support patients by telephone, Skype or Zoom and also share knowledge and skills with other organisations so they can support bereaved people.
• Supporting new people across the wider community. Ayrshire Cancer Support usually helps people affected by cancer, including a free transfer to hospital service for treatment. Funding has helped them expand to support the broader community through a new wellbeing check-in service - making regular telephone calls to people who are self-isolating. They're also extending their counselling services to local people who've been bereaved by Covid-19.
• Developing new services to support healthcare staff. Hospice UK are working with the NHS, Samaritans and Shout to staff a new mental health support helpline for NHS staff, who they have identified as needing extra practical and emotional support.

Practical advice and support

We’ve seen an increase in applications for a wide range of bereavement support.

• Supporting connection and wellbeing. Age UK Nottingham & Nottinghamshire volunteers are providing bereavement and emotional support to older people affected by the crisis through their welfare service. In two months, they've supported 114 people by phone, including signposting to bereavement support.
  
• Creating ways for family and friends to be in touch. St Rocco’s Hospice organises window visits, where family can see loved ones through their bedroom windows. Skype and telephone calls are available for all patients and support is provided by the family liaison team to make sure the technology works.
• Planning ahead for end of life. Compassion in Dying is offering support and advice on how to think about end of life care in the event of serious illness, including coronavirus. They offer guidance on making decisions, with a focus on how to make an advance decision (sometimes known as a living will). This is a legally binding document in England and Wales that sets out someone's wishes if they want to refuse some, or all kinds of treatment.
• Dignity and choice. In Scotland, Friends at the End are supporting people to put end of life plans in place. This provides important information for healthcare staff and family and can make dying easier for the patient and their loved ones.
• Helping arrange funerals and memorials. Cruse Bereavement Care, which works in England, Wales and Northern Ireland, has produced advice on funerals and memorials during the pandemic. This includes suggestions on how to plan a funeral, what to do if you, or someone else are unable to attend the service, and how to support someone else, even if you didn't know the person who has passed away.

Supporting children and families

Grantholders are offering a range of support to families and children bereaved during the pandemic.

• Tailored programmes responding to the crisis. In the North East, Holding Hearts recognised that bereaved children find comfort in continuing with their regular routines, and that lockdown has added extra challenges. Their six-week online programme helps parents and carers support their child to manage and express their feelings, with the reassurance that a therapist is on hand to guide and support them too.
  Cowal and Bute Play Therapy already offers family therapy support in isolated and rural areas of Argyll, using Zoom. Their grant allows them to offer further tailored one-to-one support sessions to those experiencing stress and social isolation as a result of the virus, including bereavement, grief and loss.
• Equipping teachers and schools with practical resources. NurtureUK is offering support to 200 schools in London with pupils affected by Covid-19. They'll each receive a free copy of The Bereavement Box which supports staff through a user manual and 60 practical exercises for a range of ages.
• Offering comfort and kindness. Take Our Hand are unable to offer face-to-face support so will use a small grant to give bereavement care packages to young people aged 16 to 24 in Norfolk . These packs will offer comfort through some nice treats, and also provide information and activities to help manage grief, plus positive messages from others who have been bereaved. They're working with local businesses to source gifts, like chocolate truffles from a dairy-free confectioner in Norwich, as well as asking supporters to buy items including journals, puzzles, toiletries and candles from an online shopping list.
  

Increasing hospice capacity to support more people

Hospices are supporting the NHS by taking on more patients who need palliative care. Greenwich and Bexley Community Hospice is looking after an extra 300 people in the community. At the same time, redeployment, illness, and the self-isolation rules have led to staff shortages. Many regular volunteers have had to self-isolate. Here's how grantholders are dealing with growing demand:

• Proactively recruiting more trained staff and volunteers. In East London, St Joseph’s Hospice is trying to increase its staff by advertising on social media. Many services that provide direct care to people at the end of their lives rely on volunteers, who often fall into an at-risk category themselves. Wirral Hospice have a small number of essential volunteer roles in patient care and are asking people to volunteer if they can.
• Transforming existing spaces to create safe areas. Wirral Hospice converted its Wellbeing Centre into a temporary six-bed ward for Covid-19 patients who are particularly frail or need palliative care. This space is entirely separate from the hospice’s main inpatient unit.
• Pooling staff, expertise and resources. In the West Midlands, three hospices are working together through a single hub - Hospices of Birmingham and Solihull (HOBS). It's available 24 hours a day, seven days a week with 40 end of life specialists on call. They jointly provide access to hundreds of specialist hospice staff across the region.
• Meeting new and emerging needs. Willen Hospice in Milton Keynes, is recruiting a Social Work Assistant until September 2020, to offer more capacity to help implement the government's decision to allow people to visit their relatives before they die. They will also support the existing social work service which helps with other practical support, including: links to care agencies and nursing homes, writing a will, and access to benefits and income support.

Ensuring the safety and wellbeing of staff

Some carers have reported shortages in personal protective equipment (PPE), testing equipment and cleaning supplies. St Joseph’s Hospice in Hackney launched an appeal and received donations of PPE from the local community and NHS hospitals. The local authority issued staff with parking permits so they could avoid using public transport. St Ann’s Hospice in Cheadle has shared a template for face shields, which supporters with 3D printers can make and donate.

Supporting a good death

A good death is important for those approaching the end of their life and can soothe grieving family and friends. There are lots of important elements to a good death, from pain and symptom control to compassionate care, and choice about where to die.

• Caring at home. Hospice UK have provided guidance on how to care for dying people with Covid-19 at home.
• Emotional and spiritual support. Birmingham St Mary’s are offering confidential non-judgemental spiritual support to patients, relatives and staff over the phone. The Ann Robson Trust ‘Message to a loved one’ service has already delivered 250 messages to patients at The Princess Alexandra Hospital, Harlow. They share the model they have used for this on their website for others to use.

Encouraging community support

Covid-19 has brought out a sense of community spirit and compassion in many people, who have come forward to volunteer and support others. This extends to peer support and end of life care.

• Networks to share skills, training and bereavement support. Greenwich and Bexley Community Hospice are working with others to provide virtual training and support to community and mutual aid groups on end of life care and bereavement.
• Showing we care. St Andrew’s Hospice is asking people to crochet, knit or sew pairs of 'hospice hearts' – one to send to the patient at home, and one to hang on the hospice heart tree in their reception area, for a daily reminder.
• Creating a community of peers. In Greater Manchester three families who had lost loved ones to the virus formed a WhatsApp group. During lockdown this small community, Crown Together, has grown to 17 people who support each another with their feelings of loss and anger. A small grant is helping them to grow and offer support to others, including refugees, asylum seekers and those on low incomes.

New approaches to fundraising

Hospices are very reliant on fundraising events which can’t continue in their usual form. Charity shops have also had to close. Estimates of the losses so far for individual hospices range from one to two million pounds. The government’s commitment to provide an additional £200 million for hospices will relieve some of this pressure, but hospices are taking further steps to plug the gaps.

• Emergency appeals and online events. St David’s Hospice, in Gwent and South Powys, had to close 38 charity shops and postpone numerous events so turned to online crowdfunding. Leicester City manager Brendan Rodgers launched Northern Ireland Hospice's appeal, with a series of virtual events including gaming, exercise, craft and meal-based challenges.
• Lockdown-friendly challenges. Greenwich & Bexley Community Hospice is holding a virtual mini-marathon, asking people to run, jog or walk 2.62 miles around their own homes. In Manchester, fundraising events for St Ann’s Hospice have included live-streamed music concerts and a series of virtual bingo nights. Others are calling on people working from home to “donate their commute”, giving the money they’re saving on transport or entertainment; like the Wirral Hospice donor who gave money he wasn’t spending at the pub.

Good practice in bereavement support

More bereavement support is likely to be needed in the longer-term, particularly because the help people can receive now is limited. Bereavement is a risk factor for other wellbeing issues like loneliness, so we need preventive approaches that support people before this happens. Here's what we know about good practice:

• Bereavement support should be person-centred. Everyone feels grief in a unique way so support can’t follow a one-size-fits-all approach.
• It needs to be available at all times, because feelings can change very quickly and people may need support at any time. Cruse Bereavement Care has seen a fall in demand, with people putting grief on the back burner while they concentrate on staying safe. But the calls they are receiving are more complex. They are changing their approach and offering more brief interventions, prioritising treatment by need and urgency.
• Help to navigate services and know what to do after the death of a loved one is important. Advice needs to be clear, culturally appropriate and available in a range of languages and formats. This is important due to the disproportionate share of deaths amongst people of Black, Asian, and minority ethnic (BAME) backgrounds.
• People and communities need help to build resilience. This means finding ways of connecting in spite of social distancing and recognising how people can take care of their own health and wellbeing. Some simple lockdown tips can also help people who are grieving: setting routines, checking in with others, rest and exercise.
• It’s important to let a bereaved person talk about how they’re feeling, and about the person who has died. It's important to show that it’s okay to ask for help, or to admit you're struggling.

Don’t forget volunteers, staff and carers

Carers need care too. The impact on them is huge and they often feel invisible and unsupported. This, combined with worries over infection, lack of PPE and an increased workload due to more complex cases, means projects must consider and address wellbeing. New staff and volunteers will need training to carry out bereavement support. Cruse Bereavement ensures all volunteers are trained in a foundation programme before starting.

Help people find new ways to remember their loved ones

People can write or record messages to read out or play at a funeral or remembrance ceremony. For young children, Daisy’s Dream suggest drawing a picture as a way to say goodbye and placing messages or drawings in the coffin.

Others are setting aside time for their own memorial – perhaps on the day of the funeral, or a time chosen together with family and friends. Looking at pictures, playing the person’s favourite music, writing messages, lighting candles or following personal cultural or religious practices can all be ways to remember and grieve.

An online memorial page can be a good way to share messages, photographs and memories.

It can also help to plan a future event, deciding a time and place when everyone can come together safely. This could be around a memorial event, such as planting a tree.

Think beyond the immediate to consider the long-term impact

As well as the immediate issues, end of life providers face a number of questions about their long-term future. Will they be able to raise finances in the same way? Will they be able to respond to the medium- and long-term needs resulting from Covid-19? Will the partnerships that have been established continue?

Consider what services will look like months and years into the future. The implications of Covid-19 are yet to be seen, we do not know what the true impact on bereavement, and those who are working closely with people at end of life, will be over the long term. We need to start planning for this now, as well as responding to the current crisis.

We’re making sense of what we’re seeing and hearing from our grantholders at pace, so there’ll be things we’ve missed, haven’t noticed yet or, perhaps, misinterpreted.

We welcome comments or challenge, so that we can continuously improve and develop, and make this work practical and useful.

Please send feedback and suggestions on this content to knowledge@tnlcommunityfund.org.uk

This page was last updated: 1 June 2020.