This week is Dying Matters Awareness Week (May 11-17) – an awareness week led by Hospice UK to provide an opportunity to discuss the importance of talking about dying, death and bereavement. Here, Sharan Watson, Programme Leader for PG Cert Palliative Care at the University of Derby, discusses why it is more imperative than ever that health and social care workers feel confident and supported to talk about bereavement.
The theme of this year’s Dying Matters Awareness Week is ‘Dying to be heard’, which feels so much more pertinent in our current challenges of delivering person-centred care during the coronavirus pandemic. This week marked International Nurses Day (May 12) and 200 years since Florence Nightingale was born. Being a nurse has given so many of us the platform to develop such a diversity across all settings and has highlighted the true importance of interprofessional working.
Nursing is one of the most adaptable professions, embracing so many different roles and constant flexibility to meet the needs of those patients we care for, their loved ones and our colleagues. Seeing how the nursing profession, as well as the wider health and social care sector, has grown in strength and visibility during the current pandemic, has been incredible. While it is a time of such uncertainty for all, the one certainty we do have is that we are all in this together and are all reaching out to listen to one another.
This year Dying Matters Awareness Week has adapted different ways of delivering support, and Hospice UK has enabled all of its support information around the theme to be freely available. The focus this year is on how to help by listening. How many people want to talk about death but feel they have no one to talk to about it? How many people are ‘dying to be heard’?
The importance of listening when talking about dying
Listening has never been more important than now, as nurses and health and social care professionals are adapting to new ways of working, new ways of reaching out to start conversations and to provide opportunities to be there to listen to others.
We can all be there to listen, sometimes we don’t need to say much at all. One way the healthcare profession has been adapting to new ways of working during the current pandemic has been by supporting less experienced staff and volunteers to feel confident to truly listen and be curious about the person they are supporting. This can be done over the telephone, online and also through safe social distancing doorstep conversations. Staff at a local hospice, Treetops Hospice Care, have been delivering “cake and comfort packs”, which is just one example of many to demonstrate reaching out during these times.
Over the past year, I have been working with Alison Hembrow from Treetops Hospice Care on the development of a series of LISTEN principles. Through the simple mnemonic L.I.S.T.E.N, the principles encourage conversations and listening about thoughts for future planning and what is important right now in quality of life conversations. This mnemonic is not intended to be worked through as a list, more as a guide to tentatively inquire and open opportunities, which is explored in the training sessions delivered alongside this with volunteers and support staff.
L – Life – Tell me about your life
I – Important – What’s important to you?
S – Support – What support do you have?
T – Time ahead – What’s important for your time ahead?
E – Ending – What would make a good ending for you?
N – Now – What’s important to do now?
Barriers to listening
Treetops Hospice Care, in partnership with the University of Derby, has commenced a research project exploring the outcomes of developing support workers and volunteers in initiating such conversations around quality of life. The ‘conversations’ around what’s important right now to the patient/carer and what can make a difference right now towards end of life, can be enabled through opportunities to ‘listen’.
There are numerous reasons and sometimes barriers around developing these conversations. Possible reasons are that we may be short of time, not feel confident to start these conversations or think that someone else will be able to offer these opportunities, sometimes there may be a lack of clarity as to whose role it is anyway. However, we can all offer these opportunities to listen and we have supported volunteers and support workers in this. Our research follows the principles of a public health approach to end of life care and a “de-professionalisation” of supportive care – involving volunteers and support staff to engage in these conversations could result in being able to include more individuals.
Being open and honest
Being able to listen and encourage others to feel heard will help us all to explore the importance in talking openly and honestly about quality of life, about dying and about loss and grief. We know this has been affected even more by the current context. Adaptation and flexibility to individual needs by all in health and social care is so important, alongside looking after ourselves and ensuring we are all resilient to be able to be prepared to hear thoughts and concerns of others. We are all developing compassionate communities, adapting services and outreaching in new and different ways for now and beyond the coronavirus together.
Sharan is among a team of researchers and professionals providing guidance to clinicians who are likely to be having – and training people who will have – difficult conversations with patients suffering from COVID-19 or those closest to them. Read more here.
For more information on active listening and advance care planning, visit the Dying Matters website.