Maggie Keeble writes:
Sex and politics are common subjects of discussion these days, but conversations around death and dying remain taboo. Throughout history - until about a hundred years ago - people were familiar with death. People most often died at home surrounded by family or friends, they died at a younger age, relatively suddenly and there were much higher rates of infant and child mortality. There were cultural norms associated with preparation for death, the dying process, and the aftermath. There is barely a Victorian novel without depiction of someone dying and even Little Women portrays the death of sister Beth; sad of course – but expected, peaceful and in her own bed in her own home, surrounded by loved ones.
These days, death happens out of the home in hospitals, hospices and care homes. Death has become a medicalised rather than a social event. Many people don’t see anyone die until faced with it in a parent or spouse. It happens behind closed doors which means people are more frightened of it, don’t know what it looks like and aren’t sure how to talk about it. Whilst we have little choice in the cause of our death, we do have some influence over the manner of our dying. Experience and evidence shows that conversations about what we want and more importantly what we don’t want results in a calmer, more dignified death and more often in the place of our choosing. If we are going to enable more people to live well until the very end of life, we need to encourage everyone to have conversations and to express and even record their wishes and preferences.
Maggie Keeble (Care Home GP and Clinical Lead for Integrated Care for Older People in Worcestershire)
Lucy Martin writes:
As a person’s life progresses and they experience different life events, they often have an internal thought process about their wishes and preferences around death and dying - ‘Do I want to be buried or cremated?’, ‘What music would I play at my funeral?’. In the absence of illness and disease, these thoughts can seem quite abstract and non-threatening. It’s not strange to us as humans to consider death, but sometimes it really concerns us to discuss this out loud with friends and family, ‘Oh don’t be so morbid!’ ‘We don’t need to talk about that yet’ or simply that this is too upsetting to contemplate. Many of us don’t want to burden our loved ones with complex decisions after we have died, but equally we don’t know how to bring it up with them without causing distress and upset.
Research has shown that most people faced with a terminal illness or diagnosis expect their health professional to bring up the subject of dying with them; however many health professionals also feel uncomfortable with this. The medical model of care today is all about prevention and treatment, hoping for a cure, and less attention is given to death and dying - even though it is still the only thing guaranteed to affect us all. Professionals say they feel worried about ‘looking like we are giving up hope’ and ’not wanting to upset people without adequate time to deal with it’. Patients and loved ones need to feel empowered to ask these questions of their health professionals and they in return need to feel skilled and empowered to answer questions and have honest discussions about what people do and do not want for themselves at the end of their lives. We need to normalise talking about death and dying in every setting to enable this to happen.
Lucy Martin (Clinical Lead, Cancer and End of Life Care Dudley CCG).
These blog extracts about dying well can also be found in our Dead Good Education Pack, which you can download here.