It’s not always easy to talk to someone who is dying. Conversations about future plans and wishes may appear insensitive and fuelled with great pain and distress when it’s somebody we love.
For some, not knowing what to say or being afraid to say the wrong thing, it is easier to avoid the person than engage in conversation where the D-word becomes the elephant in the room.
Many of us have a superficial familiarity with death. We’re used to seeing it in faraway pictures and footage in the news and on the internet or as fiction in films. But the reality for many of us who know someone who’s dying or care for them, it can be incredibly challenging and emotionally labour intensive.
For the dying, though, there is often a lot to say. This might be about putting things to put to rest, making plans about end of life care or how much therapy to have or making funeral arrangements. Most importantly, they might want to be reassured that life will continue for their loved ones when they have died.
Undoubtedly, talking to someone who is dying can be difficult, but it can also be therapeutic. And knowing about your loved one’s wishes is incredibly important as death nears. It can comfort the bereaved knowing they have carried out their wishes during their final hours.
Even for nurses, who care for the dying and the bereaved on a routine basis, it can be one of the most stressful parts of their role - both professionally and personally.
While some find it the most rewarding aspect of nursing, others tend to avoid investing in the nurse-patient relationship that should develop with a dying person. Using avoidance as a coping mechanism is dangerous and the research showed these nurses are more at risk of burn out, occupational stress and ill health.
Care of the dying is known as a source of anxiety and occupational stress and if left unmanaged can lead to them leaving their nursing career altogether. More importantly, it also results in a poor experience for the patient and their relatives.
In order to meet the goals of the NHS end of life care strategy and improve the quality of care to those near the end of life, there is a fundamental need to focus efforts in two areas. The first needs to be on raising public awareness about the end of life experience and managing public expectations of advances in medical treatments and the limits of intervening with resuscitation.
The second is support. Nurses are uniquely placed to care for the dying and are influential in how this is co-ordinated in our health system, but we need to support all those who care for the dying - the healthcare professionals and informal carers - who develop close relationships and read intuitive cues.
As death nears, people often become more tired and communication diminishes. Knowing them is fundamental during the last hours of life in order to provide the individual comfort care they need. What do certain hand gestures mean? What is indicative of pain? When is the patient ready to die? This requires a special understanding between the patient and the nurse. Recognising the dying process and the importance of this relationship in somebody’s final hours can help.
In 1000 hours of observation and interviews with people with terminal illnesses, their families and healthcare staff, we found that patients equate care to the attention they receive. Nurses do not need to be doing anything medically for them but their presence is what patients and their families view as “quality care”.
“No one actually knows what they should be saying,” one nurse told us. “There is no practical advice. It is just from experience, really, and a lot of the time I worry I am going to say or do the wrong thing.”
For nurses, caring for the dying patient is a unique and privileged position that can make a considerable impact on the care they and their family receive. Their experience coping with fear of upset can teach us important lessons. So too can those who are dying. They just need to be given the opportunity to speak and be heard.