[D]eath and dying surrounds us, yet many of us see it as an uncomfortable taboo subject. As part of a series of articles on encouraging an open dialogue around death and dying, we asked various healthcare professionals, academics, and members of the public who have experienced palliative care the following question:
How important is it that we as a society are open to discussing death and dying?
‘It is never too soon in life to talk about death and dying: I have seen too many people regret the fact that they did not know the final wishes of a loved one – and I have also experienced the joy of attending a funeral that was a true reflection of a life lived… As a former Hospice Social Worker, but primarily as a human being, my advice would be:
For everyone’s sake – let the conversation begin!’
– Sue Taplin is a qualified social worker with a practice background in palliative care. She has held academic posts at the University of Nottingham, University of Suffolk and currently at Anglia Ruskin University, and has a Doctorate in Social Work from the University of East Anglia.
‘My mixed-race background has given me different perspectives when discussing death and dying. My Asian grandmother, totally dependent on her two sons, regularly has frank discussions about her end of life. I think these help not only her, but also close family in preparing themselves for the inevitable. Conversely, my English grandparents who live alone do not have the same level of openness about the topic with relatives, and consequently the future holds great fear of the unknown. To me, these personal examples highlight the importance of having these conversations.’
– Sian Warner is a Third-Year Medical Student at the University of Birmingham.
‘Death is certain. What is uncertain is when. So what do we do? Talking about death will help make the final stage of life as good as possible, instead of pretending it will never happen. So, advance care planning is a big part of the solution. All of us, including health and social care professionals, need to create opportunities for people to talk about the things that matters most to them, what they do and don’t want to happen. This will enable more people to live well until they die, allowing a good life to culminate in a good death.’
– Keri Thomas is the Founder and National Clinical Lead for the Gold Standards Framework Centre in End of Life Care in Shrewsbury. She is also the co-author of Advance Care Planning in End of Life Care, Second Edition (OUP, 2017).
‘I was given the news two years ago that I could not be cured of my cancer. I feel it is important to be able to openly discuss my fears and thoughts on dying. I feel that society as a whole has a taboo about the question of dying, and most people will side-step the issue when talking to me. Death is something we all face – rich and poor alike – and I think we can all do more to make the discussion more open and informative. I have found that Palliative Care is a refreshing format to further the discussion.’
– John Joyce is from Mayo, Ireland and has been fighting cancer for five years. John is a member of Voices 4 Care.
‘Palliative care should be available to anyone who needs it regardless of diagnosis or location of care. Talking about death and dying can be perceived as contentious with some suggesting that it can be distressing for people to think about their own mortality. However, recent research indicates that people appreciate the opportunity to talk about their preference for care at the end-of-life. Advance care planning provides people with the opportunity to think and talk about their wishes and provides healthcare professionals with the chance to ensure that these wishes, where possible, are met at the end-of-life.’
– Dr Julie Ling is the CEO of the European Association of Palliative Care.
‘Due to our ageing population, we can expect an increasing number of people dying in the next 25 years. Over half of these deaths will be people aged 85 years or over. It is important and timely for us to have a public debate on how we best prepare for this, to understand what aspects of care are important to people nearing the end of life, and where we should be directing investment to meet these growing needs.’
– The Palliative Care Research Society is a society dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination.
‘It shouldn’t be, but it is the complete conversation stopper: “Have you thought how you would like to die?”
Death, dying, and passing on surrounds us on a daily basis in our neighbourhoods, on the television, and on social media, yet we never personalise it, never look at our own bodies and imagine them injured, ageing, or terminally ill. We never try to visualise our own non-existence and its effect on others – we shiver, shrug, and continue with our finite lives. “All living things have a designated lifespan – but not me!”’
– Elizabeth Fuller is a long-term volunteer at the Specialist Palliative Care Ward at Our Lady’s Hospice, Harold’s Cross, Dublin.
Just as life and birth is a common part of society, so too is death and dying. The celebration of life and birth promotes it as a shared experience. The birth process is very patient and family-centered with attention to social, cultural, and spiritual context. However, death and dying is not celebrated in this way and results in isolation, avoidance, and surprise. The result is many deaths are medicalized and are not guided by patient preference. Society needs to make death and dying more patient-centered.
– Constance Dahlin is the Director of Professional Practice for the Hospice and Palliative Nurses Association in Pittsburgh, Pennsylvania and a Palliative Nurse Practitioner at North Shore Medical Center in Salem, Massachusetts. She is a co-editor of Clinical Pocket Guide to Advanced Practice Palliative Nursing (OUP, 2017).
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