13 May 2021

Dying Matters Awareness Week focuses on having conversations about the end of life in advance - so that people's wishes can be acted on and respected. In this blog, Dr Lisa Dvorjetz, Macmillan Highly Specialist Counselling Psychologist, focuses on how we can 'be' with people at the end of life, how to navigate conversations with the individual and family members, and how family members and health professionals can make sure they look after their own emotional needs.

“In my early professional years I was asking the question: How can I treat, or cure, or change this person? Now I would phrase the question in this way: How can I provide a relationship which this person may use for his own personal growth?” – Carl Rogers (American Psychologist)

Witnessing death and dying as a healthcare professional can be one of the most challenging parts of the job as it can highlight our own anxieties around mortality, feelings of helplessness and struggles to contain a patient or their family’s distress. Over the past year, as a result of the COVID pandemic, we have been caught in the waves of losses that has crossed over between our personal and professional lives with little time to make sense of it all. Putting it into context, we work within a larger structure and organisation that relies heavily on a medical model that focuses on curing or fixing a patient and yet we are faced with something as incurable and unfixable as death. The wider implications of working with death is a feeling of being de-skilled and failing the patients we work with.

A valuable skill that everyone possesses is that of ‘being with’ a patient, family member or colleague in their time of loss. Listening and empathising can be both simple yet challenging at the same time. The simple act of not trying to fix someone’s emotions but rather giving them the space to express how they’re feeling can be extremely powerful. No matter what part of the organisation you work - in a clinical, administration, allied healthcare, researcher, or student role we can all use our listening skills and empathy to connect to their distress on a human level.

One of the most common things we hear colleagues, family members or friends say following a death is that they don’t know what to say to someone for fear of saying the wrong thing. The truth is that there is no right thing to say as it very much depends on the person and the situation. Another fear that people have is they are worried about causing emotional distress in the other and are apprehensive about opening up a Pandora’s box of emotions without the ability to close the lid afterwards. As Carl Rogers says, it’s about providing the relationship to facilitate personal growth in the other. When the lid is opening, and you do not know what to say, just being there and listening is the best thing to do. Asking specific questions or paraphrasing what someone has just said is a way to show that you were listening and provide them the space to say what they want to say.

When people are in a heightened state of distress the brain is working hard to deal with the strong emotions the person is experiencing. Having another person understand reduces anxiety levels and ultimately them helps them to cope. Most of the time people don’t want solutions but they want to be heard and understood. Communicating empathy can take a verbal and/or non-verbal form. A word of comfort, a touch of the hand or a smile. With social distancing practices still in place, it is now even more important to vocalise your empathy towards others as some of the non-verbal ways may not be possible.

As healthcare professionals, we are trained to put the needs of our patients and their relatives first but that can quite often leave us neglecting our own emotional wellbeing. When working with death and dying, there inevitably comes some form of grief yet we spend little time reflecting on the impact that this grief can have on us. A common type of grief amongst workers in a healthcare setting is that of disenfranchised grief. It’s the kind of grief where we feel we might not have a right to grieve a patient as they weren’t one of our own family members. Sometimes the grief that we feel for those patients is about the professional relationship we had with them but it can also have triggered previous losses that we have experienced in our personal lives. There can be a strong sense of ‘I shouldn’t feel upset about this’ but I would like to encourage you to spend some time acknowledging your feelings and finding ways where you can be with those emotions. All forms of grief are valid.

In summary, when working with the emotional impact of death, dying and bereavement, it is important to remember not to try and fix the situation. Try to empathise and understand with the person or family that you are communicating with. Ask specific questions or reflect on the emotion the person has just expressed. Furthermore, it is vital to reflect on the emotional impact working with this topic has by allowing yourself a grieving process if required.

The past year has brought an even greater awareness of death, dying and bereavement to many of us. It has also highlighted the kindness, compassion and shared experience of humanity that we sometimes take for granted. I hope that going forward we can continue to open up conversations amongst ourselves and the people we look after to talk about how it feels to be human through life and death.

Photo by Olga Mironova from PexelsCup and saucer of tea set on a blanket

Supporting People Coping With Bereavement
The below resources can help people who have been bereaved and advise on ways friends and family can support someone who is grieving the loss of someone.