A new report shows that nine out of 10 respondents (86%) providing end of life care in the UK do not have time or resources to provide holistic care for patients and families. Seventy Years of End of Life Care in the Community, published by the Queen’s Nursing Institute (QNI) and end-of-life charity Marie Curie, found that if this remains constant, by 2048, there will be a 25% increase in the number of people needing end of life care. It said the UK would need a new health and care model to respond to this future need.
‘Nurses working in the community know that they only have only one chance to get it right when it comes to end of life care. Having the right resources in place, alongside careful advance planning, are absolutely critical. If not properly resourced, there are huge risks inherent in services’ capacity and capability to deliver high quality palliative and end of life care,’ said Dr Crystal Oldman, the QNI’s chief executive.
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In their national survey of health and care staff, the two charities noted that nine out of ten (86%) of respondents said they do not have enough time to address their patient’s needs, especially psychological and social needs.
‘Feel like I am rushing and not giving the right amount of time, especially psychologically. Also, if visits come in for symptomatic patients, it puts added pressure on staff who already have unrealistic lists and we should have capacity for these priority patients,’ said a palliative care nurse.
Moreover, access to resources that are time-efficient and enable access to patients is limited. Just over one-third (35%) of respondents said they offered remote support, including virtual consultation, by phone, video, text or email.
One of the most serious challenges noted by the report is financial difficulties that significantly impact end of life experiences. 87% of respondents shared that they had at least some patients who faced financial hardship leading to physical pain. ‘Patients have been turning off oxygen machines as it has become expensive on electrical bills – leaving them breathless and in pain, often self-medicating with Oramorph,’ said a community nurse.
Respondents noted that access to relevant information, vital equipment at the right time, understanding what lies ahead and knowing who to contact in a crisis were key to helping them provide the best support for their patients during hardships. ‘Clarity around support (financial and practical), reduced barriers to accessing help, not having to fight for things, improved communication, honesty from professionals on reality of provision available and how to access it are important. We need to make things as uncomplicated as possible,’ said a consultant doctor.
The report notes that despite 70 years of wealth and medical advancements, palliative care in the UK continues to face ‘considerable hardships’ in the 21st century. The charities call for a national palliative and end of life care (PEoLC) strategy and funding plan to provide holistic support for people at the end of life.
‘This way of working is not sustainable for nurses, the individuals and families served or for the system as a whole. The clear evidence presented in this report should be a wake-up call for politicians of all parties,’ said Dr Oldman.
‘The extent to which our politicians are prepared to support the recommendations in this report might be seen as a measure of our respect as a society for human life,’ he said.