Dealing with loss, death and dying has three sections. Section one defines loss, and considers the different types of loss people can experience; it also investigates the stages of grief people work through when dealing with all kinds of loss, including death and dying.
The second section specifically explores dealing with death and dying. We know this is a challenging aspect of care for health and social care practitioners. However, we hope that this material will help you think about your own experiences and feelings, in order to put them in perspective so you can understand them and use them in your own practice appropriately. We also want you to learn about some of the signs related to death and dying so you are prepared if this situation arises in your practice.
The final section offers the reader the opportunity to engage with four real life stories exploring different types of loss; Sar in the community is a blog that details living with Motor Neuron Disease (MND) during a pandemic; ‘Nia’s Story’, presents audio extracts from ‘Blue Sky July’ a book written by a mother about despair, loss and joy when her son is diagnosed with cerebral palsy; Margaret’s Story is a podcast explaining what it is like to live with Chronic Obstructive Pulmonary Disease; Shirley’s Story is a story of personal loss and grief and introduces the concept of advanced decision making and care planning in end of life care.
By the end of this page you will be able to:
- Understand the different types of loss;
- Discuss and describe the stages of grief and acceptance;
- Consider the different strategies available for dealing with loss, death and dying;
- Explore the role of the health and social care practitioner in end of life care;
- Explore the role of the health and social care practitioner when dealing with death and dying;
- Reflect on personal and professional experiences of dealing with loss, death and dying, i.e. whether these are personal losses/experiences or relate to supporting others;
- Review and reflect on strategies to prepare for dealing with loss, death and dying in practice;
- Understand the link of dealing with, and supporting others with loss in terms of being caring & compassionate in practice.
Section 1: What is loss
Loss is the feeling of grief you experience after losing someone or something of value; or the experience of having something taken from you or destroyed. Most people grieve when they lose something or someone important to them. For the health and social care practitioner you can also experience loss when you loss a patient or client. This is a normal and natural response.
The way grief affects you depends on lots of things, including what kind of loss you have suffered, your beliefs and values, your age, your relationships, and your physical and psychological well-being.
There are lots of theories about how grief can affect a person, the Kūbler-Ross 5 stages of grief model (1969) is the most commonly used. In 1969, Dr. Elisabeth Kūbler-Ross wrote the book On Death and Dying, in which she outlined a conceptual framework for how individuals cope with the knowledge that they are dying i.e. coming to terms with their own death .
Today her stages are used as a way of describing the process people pass through in coming to terms with all kinds of grief or loss.
Take a look at the video below to understand the five stages of grief in relation to loss, death and dying. Not all people will go through each stage in sequence, and some may skip some stages altogether. It is important for you to have an understanding about these stages in order to be able to properly care for, and support others.
Now that you have listened to the stages of grief take some time to reflect on your own experiences of loss and of death and dying. These experiences can be integral to your own approach and ability to support others in a caring and compassionate way.
Just take a moment to reflect on the 5 stages. Can you recall them? Did you recognise any of the stages that are described? If so, how did you or the person(s) you are thinking of, experience them and manifest the emotion(s)? On reflection, now that you have learned about this model, would you have responded differently in these situations? Remember to be caring and compassionate to yourself as you reflect on these memories.
An important point to note is that the stages of grief, or adapting to loss, may not happen in any sequence, and that they can manifest themselves in different ways in different people. These different situations may vary considerably; so it is about applying these principles flexibly to meet need in the most appropriate way.
There are also a variety of theories and approaches, which offer a different way of understanding grief or loss. For example, Bowlby (1973) identified 4 overlapping stages described as shock, yearning & protest, despair and recovery.
Another you may find interesting is Worden’s (1991) approach, because that offers a framework for recovery marked by four tasks that could structure your approach to how you might support others to grieve or adapt to loss. These are:
- To accept the reality of the loss
- To experience and work through the grief and loss
- To adjust to the loss and adapt to the new environment
- To adapt to the new situation or loss, in essence, a process of ‘letting go’ or moving on.
Finally, the continuing bonds theory (Klass, Silverman & Nickman 1996), takes a different approach, suggesting that the process of grief is not marked by detachment or ‘letting go’ of the loved one, but forming a new relationship with them that might change and move over one’s life. This is a different way of conceptualising or describing the process of adjustment, which may be far more meaningful to some who are dealing with loss or bereavement. Many feel they cannot let go and their loved one will always be with them. This is a useful framework to consider in those situations.
Hopefully these different approaches and ways of thinking about about dealing with death, dying and loss will help you feel you have some understanding to support yourself and support others in this emotionally sensitive and challenging situations.
Take a look at this interview with Julia Samuel MBE founder/patron of Child Bereavement UK; she will talk you through some simple yet very effective techniques health and social care practitioners can apply to support others through the grieving process.
The next section explores death and dying in a practical way; we hope it will help you to develop the skills and strategies you need as caring and compassionate practitioners in health and social care arenas. It aims to help you to develop the knowledge and understanding you need to support your patients/clients, their families or loved ones, yourself and your colleagues in a positive way.
Section 2: Dealing with death and dying
In this section we explore and consider some of the ways you may have to adapt and change as a person in order to learn to support people who are dying or have died in a caring and practical way.
As health and social care practitioners it is important that we understand our own responses to death and dying in order that we can helpful support others when death occurs and deal with our own emotions; consequently much of the following material asks you to be reflexive (ie to reflect on your responses and consider how you may need to change or adapt them) as you engage with it.
This section begins with a reflective account by an experienced nurse who has researched death and dying and reflects on her own experiences as part of that journey. This is followed by two videos, one by Marie Curie considering what to expect at the end of life; and the second by Providence Health and Services considering how, as health and social care practitioners, we can deal with death at the point of dying in a respectful and supportive way.
A good enough death for whom?
This section offers the an opportunity to read a personal reflective account of delivering end of life care for vulnerable older adults by Dr Denise Shanahan. In the narrative Dr Shanahan explores the notion of the good enough death and considers the question good enough for whom? This reflective account was part of a larger PhD study and can be found here.
At the end of the narrative are some reflective questions. Please engage with these and write down you responses. Take time to reflect on these before progressing on with the materials. Try and summarise what you have learned about dealing with death and dying. Essentially, also really reflect on, and think about, what you have learned about yourself.
Once you have completed the tasks above listen to the videos below about dealing with death and dying. The first one is from Marie Curie and will help you to consider what to expect at the end of life. It explores this from the perspective of weeks, days and hours. When you have completed listening to the video write down your thoughts, feelings and responses. Some of these feelings and responses may have been uncomfortable and this is OK; it is natural to feel upset, to reflect on personal experiences of loss, or to feel empathy and sadness for the dying person and their family.
However, as a health or social care professional you may have to deal with death and dying in your work; you may have to take quite a practical, yet caring and compassionate approach to it. So, as you engage with the materials below think:
- At that practical level, what have you learned about the signs and process of death and dying?
- At the caring and compassionate levels, what have you learned about dealing with death and dying?
- At the personal level, what have you learned about yourself and your practice in terms of dealing compassionately and practically with death and dying?
To support you with this, you may also find Marie Curie’s page on supporting healthcare professionals to care for people in their last days useful. You can find the link here.
The second video is called ‘The Pause’ and it is really about taking a moment at the point of death to consider what has happened, to respect the person who has just died, and to support the team who have tried to save the person’s life. This reflective moment or ‘pause’ is a thoughtful and positive strategy to enable a moment to breathe and settle oneself, as well as to take a few minutes to acknowledge others, and to be caring and compassionate to all who are involved at the moment of death.
Please reflect on these materials and take your time to assimilate your own feelings and responses. Think about how you have adjusted your own sense of personal meaning; so for example, how your own values and beliefs may have been challenged or changed.
A useful model of reflection to prepare for dealing with and responding to death and dying as health and social care practitioners has been developed by Verhoeven, Schuling & Maeckelebrghe (2011). In this model they suggest that three key areas need to be considered when you reflect on responding to, and dealing with death and dying in your work. These are:
- Your professional values and experiences
- Your personal values and experiences
- Your own opinions about what constitutes a good death.
We have lots of materials on this site that can help you with this. As well as the materials you have engaged with on this page, including Dr Denise Shanahan’s blog on a good enough death for whom and the associated reflective exercises essential reading, you will also find the exploring personal beliefs, values and behaviours page, the exploring spirituality in practice page, and the resilient practitioner pages (look at the subcategories within this section too) all useful.
You may also find the reflective models on the critical thinking and reflection page more helpful than the one suggested previously, and this is, of course, a personal choice. The materials on care and compassion also have relevance, so do visit these pages if you have not already done so.
Finally, watch the Youtube video below on detailing a practical approach to confirming death. It is clear, uses a simulation model and offers a staged process that may help should you be present at such a time as this.
Section 3: Real stories of dealing with loss
Below, are four different real life stories about loss; use them to reflect on and develop your strategies for dealing with loss, death and dying. Each is different and thus all four offer a unique window into a different aspect of loss or death and dying. Please respect these stories and treat them with the dignity and respect they deserve.
Sar in the community is a weekly blog written by Sarah Watts-Peters who was diagnosed with Motor Neurone Disease (MND) in August 2019. The blog is a frank and honest account of living with a cruel incurable disease. Sarah writes poignantly about the loss of her ability to speak, to eat and to move as she once did. She writes about her growing anxiety in the world of COVID-19. Click on the image to read her blog
In the book ‘Blue Sky July’, Nia Wyn writes about the joy of a new born baby that turns to despair and loss in a few weeks, when her newly born son ‘Joe Alexander’ is diagnosed with cerebral palsy.
Told that he would never see, walk, or know who she was, Nia’s exquisite, lyrically written memoir charts the first seven years of her life with Joe. Her intimate day-by-day musings explore her thoughts and feelings, while revealing the development of a most extraordinary relationship between mother and son.
Click on the book cover to listen to some excerpts from this book voiced by Dr. Geraldine Latchem-Hastings
Wyn, N. 2007. Blue Sky July: A True Tale of Love, Light and ‘Impossible Odds’. Cardiff, Seren Publishers.
Margaret Barnard suffered loss of independence and mobility when she was diagnosed with Chronic Obstructive Pulmonary Disease, listen to how she learnt to cope and lead a full and active life.
Shirley’s story is a family perspective on Advanced Care Planning for End of Life. It is also a very personal story of loss and we are very grateful to the person who shared this narrative with us. Click on the image to launch the story.
To learn more about compassion in dying and end of life decision making please go to the following web pages
Compassion in Dying is a charity that supports end of life decision making including how to make an advance decision.
The Christian Perspectives on Death and Dying Toolkit was created by Cardiff University Researchers Dr Julie Latchem-Hastings and Professor Jenny Kitzinger. The main part of the toolkit involves recordings of a series of short presentations addressing key issues about end-of-life decision-making and reflections from Christian perspectives.
End of life Care has been developed by the UK Coma and Disorders of Consciousness Research Centre at Cardiff University for healthcare staff who want to learn more about caring for patients, and their families, after feeding tube withdrawal. It is particularly pertinent given the current challenges faced by staff caring for patients in vegetative and minimally conscious states during the COVID-19 pandemic