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Rhiannon Wilson looks at a recent study which highlights the merits in patients and families talking about death more openly.
End of life decisions
A recent article published in the Independent newspaper last month has highlighted some key issues surrounding end of life care and in particular the need to initiate open and frank discussions between patients and professionals to ensure that patients and their family have a real say in how they wish to spend their final days.
If people die in circumstances they had not wanted this can be traumatic for all involved. So why are we so uncomfortable with these discussions and what can be done?
The Independent newspaper article stated that more than 62,000 people died from cancer whilst in hospital last year. This statistic, albeit undeniably sad in itself, is made even more distressing by the fact that the article goes on to say that the majority of these patients had wished to pass away peacefully at home, rather than in a clinical setting.
A recent study conducted by Macmillan revealed that 38% of people who die from cancer pass away in hospital, when only 1% of those people would choose to do so, with a further 64% saying they wanted to spend their final days in their own home. The rationale behind this, the article says, is the idea that dying in an unfamiliar environment serves to exacerbate the already prominent fears a patient with terminal cancer may have about dying.
This new study has served to highlight a wider issue in the medical field and that is the reluctance of British people, both patients and professionals to discuss the topic of death causing it to become something of a taboo.
Macmillan’s study also indicates that around a quarter of their study sample of people with cancer said that they thought about their death constantly or at least often, but were reluctant to share these thoughts with anyone due to the controversies surrounding the discussions of death. This is reflected in a further statistic revealed by Macmillan that says that 64% of people think British people do not talk enough about death.
Why change is needed
The lack of discussion surrounding death may lead to wider issues, by failing to have an open discourse about the possibility of death, particularly in patients with terminal diseases this can create problems for families during distressing time.
The article explains that the number of people enquiring with the Citizens Advice Bureau about people who had died without making a will has more than doubled in recent years.
Often patients find it difficult to discuss their own mortality, which makes it even more crucial that medical professionals are able to initiate an open and empathetic discussion with patients and their families about their end of life care. From a practical standpoint as well as an emotional one, as for many family members, the knowledge that a loved one passed away in circumstances they were not comfortable with can have far reaching emotional consequences.
In recent years there has been a call for a shift in the relationship between patient and professional, with arguments being made that doctors need to keep patients more informed about their care and the importance of establishing a relationship in which a patient’s views and wishes are given the weight they deserve.
In order to break down these walls, there are events being held to try and make the discussions around death more accepted. So-called Death Cafes are supposed to provide a platform where people are able to “drink tea, eat cake and discuss death” in order to break the taboos and ensure patients and families alike are able to ensure that they receive the best care and support possible towards the end of their life with being constrained by the difficulties we face as a society in discussing death.
Hopefully, this open discourse will enable a more frank discussion with medical professionals to ensure that patients with terminal illness are able to regain some control of their circumstances.
If you or a family member have been affected by these issues or have concerns in relation to care received, please feel free to contact our clinical negligence team and we will be happy to advise.