As a social service worker, or someone who is caring for others, you may experience death, dying and bereavement during the current COVID-19 outbreak.

We know this is an incredibly difficult time. As a key worker you may be feeling anxious or worried about your own family as well as the people you support, your colleagues and yourself. We also know that your existing experience will help you lead the way in providing compassionate, person-centred care and support even in these most challenging circumstances.

During this outbreak new information is being produced all the time. Although designed to help, it can feel overwhelming. This guide brings together information to support you in delivering compassionate, person-centred palliative and end of life care. It aims to help you:

  • understand and feel confident in your role
  • know and use the skills you have for facilitating conversations about death, dying and bereavement
  • create a supportive network with colleagues.

If you’re new to the workforce, please use this information and speak with colleagues if you need support. If you’re an existing social service professional, we hope there is information here to enhance your confidence and help you share learning with others.

This guide is derived from the SSSC and NHS Education for Scotland's (NES) Palliative and End of Life Care (PEOLC) resources and accompanying guidance toolkit (eBook). We also want to thank the following partners who have contributed to this resource: Northern Ireland Social Care Council (NISCC), NHS Education for Scotland, Dr Paul Baughan, Open Change, The NHS Scottish Quality and Safety Fellowship, Dr Lara Mitchell, Dr Caroline Cochrane, Scottish Care, Healthcare Improvement Scotland, Professor Mark Williams and Scottish Partnership for Palliative Care.

Select 'Watch Video' below for a video from NISCC about holding onto hope in challenging times.

Your role: providing support in difficult times

These are unprecedented times. As social service workers we are coming face to face with death, dying and bereavement, both through our own experiences and through the experiences of people we provide support for.

The restrictions related to COVID-19 are particularly painful when someone is so seriously ill that they might die and they can’t always be physically near to those they love. Nevertheless, each person’s palliative and end of life care experience will be unique to them. What their care and support look like will depend on their individual needs, circumstances and preferences.

Discussing dying is usually something most of us shy away from. The potential discomfort is not just in the mind of the individual who is dying but also in the minds of all of us who are looking after them. This is normal. However, having the safe space, freedom and confidence to talk about what is important to us is a human need, especially in times of distress. Creating that space, being open to having a conversation about dying with those we provide support for is a key responsibility for all social service workers. Being compassionate and keeping people, including ourselves, at the heart of everything we do can help us meet this responsibility with confidence.

It is important to be honest with ourselves about the challenges we face in having these conversations and the added pressure on our own wellbeing. It is important that we care for ourselves so that we bring the best of ourselves and our skills into these critical, honest and compassionate conversations with others at this challenging time.

This illustration by NHS Scottish Quality and Safety Fellows reflects the challenges we may feel when talking about dying. It is one of six images created to help you think about having difficult conversations. You may wish to download the full presentation (PDF) or the combined images on one-page (PDF) to discuss further with your colleagues.

Click on each category below to learn more and find links to key resources.

Here are three videos to help you think about self-care, empathy and being resilient.

Stress, coping and resilience - Open Change

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Brené Brown on empathy - Royal Society of Arts

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Compassion can mean different things to different people.

Some people would call it kindness but no matter what you call it, compassion is important for all social service workers.

It is especially important for workers who are supporting individuals with death, dying and bereavement. It helps us respond to the needs and wishes of the people we work with.

Self-compassion involves responding in the same supportive and understanding way to ourselves as we would with others when we have a difficult time or when we notice something we don’t like about ourselves.

Talking about death, dying and bereavement is hard and even more so when our own experiences may be overlapping with those of the people we support. Instead of judging and criticising ourselves for feeling inadequate, it is important we accept our humanity and are kind and understanding of ourselves.

We will not always get it right. That is OK.

The FACE COVID video explains that fear and anxiety are inevitable when we face a crisis.

The video also gives advice on the practical steps we can take to help deal with these feelings.

Person-centred care starts with having good conversations with people about the things that matter to them.

This is even more important in the conversations we are having with people we support during these challenging times. Being focused on what matters to the other person can help us be more attentive and less distracted by our own thoughts and feelings.

As social service workers we will already have skills and experience that we can draw on to be truly present in our conversations with people experiencing death, dying and bereavement. It is important to be consistent in our verbal and non verbal actions, show genuine expressions of empathy and respond to the people we are caring for and their families with warmth and humanity. It is as important for us as for them to be able to connect and find meaning in the conversations we share.

This 22 minute video was created by Dr Justin Amery to help professionals during the current crisis. It can help you think about how to have the hard conversation.

Hope, Hints and "How To" - Helping you respond to living and dying issues during COVID-19

Online module from The Northern Ireland Social Care Council (NISSC).

Workforce support and wellbeing during the COVID-19 outbreak

Having these conversations may impact on your own health and wellbeing. This resource from SSSC was designed to help you focus on your wellbeing, and the wellbeing of others at this difficult time.

Informed about palliative and end of life care, NHS Education for Scotland

This is an introductory learning resource for anyone who comes into contact with people who need palliative and end of life care, their families, and carers. It is made of a mixture of reading and learning activities that can be applied to any work setting.

Scottish Palliative Guidelines

These guidelines are produced by Healthcare Improvement Scotland and NHS Scotland. They reflect a consensus of opinion about good practice in the management of adult patients with life-limiting illness. They are designed for healthcare professionals from any care setting who are involved in supporting people with a palliative life-limiting condition.

Coronavirus (COVID-19): palliative care toolkit

This toolkit provides health board planners with options that can be adapted and utilised locally in their response to COVID-19.

What matters: personal outcomes focused support

Talking about death, dying and bereavement is not always easy.

However, it is important that we offer a safe space for individuals and their families to have a conversation about what matters to them to help reduce feelings of isolation, loneliness and distress. An open and empathetic conversation is also necessary to ensure people have the right information to make the best decisions about their care and support.

During the coronavirus pandemic people are facing a tragic loss of life, often under very difficult circumstances. We may be providing support to people who are bereaved and having to deal with increased trauma, while also being cut off from some of their usual support networks.

These types of conversation are often emotional for people but also bring the relief of having the opportunity to describe what matters to them.

We need to listen to both the content and the feeling of what people are sharing with us and we need to make sure they have the space and time to ask the questions important to them. We need to be confident in active listening; holding silence, repeating things back, checking what we've heard and being honest if we feel we haven’t used the right words.

The Bereavement Charter for Scotland describes how in Scotland we can support a person or group of people during bereavement.

Here are three videos to help you have conversations about dying and bereavement with compassion and honesty.

We need to talk about dying - Open change

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Care homes and coronavirus - Open change

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Talking and being with people who are bereaved - NES

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The ‘What matters to you’ question approach helps establish a trusting relationship and helps you understand the person in the context of their own life and the things that are most important to them.

This approach is about compassionately connecting with others, especially when we need to find out what’s important to someone before they become seriously ill or incapacitated, and to record these positive choices on an Anticipatory Care Plan.

Asking about what matters is one of the six principles in the REDMAP framework, which guides you through anticipatory care conversations.

Active listening

This short film was produced in Ireland and provides a useful guide to active listening.

Having an Anticipatory Care Plan (ACP) encourages people to make positive choices about what they should do themselves and from whom they should seek support.

An ACP provides an important opportunity for people to have conversations with carers and loved ones about the type of care that they would like to receive should they become unwell.

Healthcare Improvement Scotland has developed COVID-19 specific ACP templates and guidance to help support health and social service workers with ACP conversations.

Healthcare Improvement Scotland have a range of resources to support ACP during the COVID-19 pandemic. This includes an Essential Anticipatory Care Planning Guidance and Template (Download Word Document).

Living Well in Communities anticipatory care planning team

This video from Healthcare Improvement Scotland’s ihub gives an overview of anticipatory care planning, its benefits and how it can help to deliver person-centred care.

Support Around Dying (SAD)

This website by NES has a collection of resources aimed at helping professionals during the COVID-19 pandemic.

Healthcare Improvement Scotland

is working with the Scottish Government to develop COVID-19 specific ACP templates and guidance. Please check this page regularly for the latest national resources.

Advance Care Planning: the heart of living and dying conversations

This NISCC video by social worker Deirdre McKenna, Southern Health and Social Care Trust (SHSCT), provides a simple ’how to’ guide to having these conversations and encourages all of us to think about what really matters to us in living and dying and to talk about it with the people we love.

End of Life Aid Skills for Everyone (EASE)

The Scottish Partnership for Palliative Care has produced this online education module. The module does not look specifically at COVID-19 but introduces and explores dying in general - what to expect and how to help. It is useful for those without previous experience of palliative and end of life care.

What Matters to You

This website provides help and guidance on using this type of approach to help build sustainable relationships with others.

Personal Outcomes resources (including eBook)

These resources help support you to develop and embed a personal outcomes approach within your day to day practice.

Emotional support: looking after colleagues

During this challenging time, it is even more important that we acknowledge the support we can offer to and receive from our colleagues.

Our relationships at work have a significant impact and the social and emotional support of colleagues can buffer the stressful impact of our heightened exposure to death, dying, grief and bereavement.

This is a time like no other when we need to bring to the forefront the characteristics and behaviours in ourselves that support, sustain and build confidence in others. We need to be kind to one another, offer help in managing concerns, be true to our social service values and inspire trust and collaboration.

We also have a responsibility to regulate our own emotions before communicating with others and create an emotional climate that encourages empathy and hope.

The image on the right summarises key advice from the Mental Health Foundation. With thanks to Hayley Lewis for permission to use her sketchnote.

Here are three videos to help you think about emotional support for others.

Development of a bereavement charter - Scottish Care

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Mindfulness is being aware of your body, mind and feelings in a moment of time, paying more attention to the present moment, to your own thoughts and feelings and to the world around you.

When times are challenging, we may lose touch with the way our bodies are feeling and end up living ‘in our heads’, caught up in our thoughts without stopping to notice how those thoughts are driving our emotions and behaviour. By being more aware of our thoughts and feelings as they happen, we can see the present moment clearly. When we do that, it can positively change the way we see ourselves and our lives.

Why Mindfulness is a Superpower: Practising mindfulness is one of the single most powerful things you can do for your wellbeing.

Workforce wellbeing during the COVID-19 outbreak

Having difficult conversations about death, dying and bereavement may impact on your wellbeing. This website brings together resources and guidance to help you look after your wellbeing.

Self-Care for Frontline Workers and Line Managers

This eight minute video is part of a resource called Hope, hints and how to- helping you respond to living and dying issues during COVID-19 . It was developed by the Northern Ireland Social Care Council. Watch from 6:30 onwards for advice about supporting team members.

Bereavement Charter

The new charter was launched on 15 April 2020 along with guidance.

Coronavirus (COVID-19) learning materials on TURAS Learn

NHS Education for Scotland have death and bereavement, and palliative and end of life care resources on their TURAS Learn website to support health and social care practitioners with care and communication at the time of and after a death.

Life during lockdown: understanding mental health and wellbeing

Life has changed considerably for everyone in recent weeks. Whether you have recently started to work from home, are unable to spend time with loved ones or are shielding completely, life in the UK is evolving rapidly. UWS experts will be delivering six short, simple webinar sessions on topics that may help to make life easier and support our mental health and wellbeing over this period of change and uncertainty.

Cruse bereavement care

Cruse have put together resources to share how bereavement and grief may be affected by the pandemic. It covers some of the different situations and emotions bereaved people may have to deal with.

Supporting Children during illness and to cope with bereavement

A video by the Northern Ireland Social Care Council

Marie Curie Palliative Care Knowledge Zone

This website has a range of tools, resources and guidance to help support health care professionals deliver the best possible care for people with terminal illness.

Stories for Education: Living with Death

You may find it helpful to use this video from NHS Education for Scotland as a discussion piece during team meetings or as a separate development session with a colleague. It is about the emotional impact on professionals who are caring for people at the end of their lives.

Mindfulness resources

There are a range of resources on the NHS UK website.

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