Support with death, dying and bereavement for carer support staff

Introduction:

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

In this resource we use the term carer support worker to mean any worker providing support to unpaid carers of any age across Scotland which includes young carer workers, young adult carer workers and adult carer support workers.

We know this is an incredibly difficult time. As a carer support 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 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 support. 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 carer support worker, 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 carer support workers you may be coming face to face with death, dying and bereavement, both through our own experiences and through the experiences of carers you 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 involved in 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 may not be something carer support workers are used to, but may become part of yourthe role during this current pandemic. Being compassionate and keeping people, including ourselves, at the heart of everything we do can help us do this 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.

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

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

Self care for frontline workers and line managers, NISCC

About YouTube

Brené Brown on empathy - Royal Society of Arts

About Youtube

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 carer support workers.

It is especially important for workers who are supporting carers 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 support starts with having good conversations with carers about the things that matter to them.

This is even more important in the conversations we are having with carers 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 carer support workers we will already have skills and experience that we can draw on to be truly present in our conversations with carers 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 carers 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.

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).

Equal Partners in Care (EPiC)

Working in partnership with carers results in better outcomes for everyone involved – for the cared for person, for the carers and, ultimately, for the service. EPiC is intended for all staff who come into direct contact with carers in their day to day jobs. It is also intended for anyone with a workforce education and learning role, and/or managers who support the workforce to improve outcomes for carers and the people they care for.

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 Government Coronavirus (COVID-19): returning to work safely guide

Guidance for workers and employers on returning to work safely during the coronavirus pandemic.

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 carers 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 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 is a video to help you have conversations about dying and bereavement with compassion and honesty.

Talking and being with people who are bereaved - NES

When working with carers during this time, we may encounter some who are bereaved. It is important to be aware of some ways to sensitively approach these interactions; to have the confidence to talk or just listen. This eight minute video, although aimed at health and social care staff, can offer some tips on communication with carers in this situation.

As a carer support worker you may find yourself discussing Anticipatory Care Planning with a carer. This may be a plan the carer wishes to write for her/himself, or one the person being cared for is completing.

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.

These resources are aimed at health and social care staff, but as carer support workers you may find useful information to help with discussions with carers.

Scottish Government mental health support for health and social care staff

All health and social care workers in Scotland will now have access to mental health support 24 hours a day, seven days a week through the new national helpline.

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.

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.

What Matters to You

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

Carers UK resources for speaking with carers about death, dying and bereavement

This website has advice and information on practical support following a breavement.

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 service's 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 two videos to help you think about emotional support for others.

Grieving in extraordinary times - NISCC

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Spirituality - NISCC

About YouTube

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.

How Mindfulness Empowers Us: An Animation Narrated by Sharon Salzberg.

Mindfulness allows us to see our thoughts and feelings as they really are, freeing us from old ways of thinking.

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.

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

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.