University of Liverpool |June 2018 | Hospice network must change ‘death house’ perception, academics tells MPs
Marketing experts from the University of Liverpool’s Management School have studied hospices and palliative care for the last four years. Academics Dr Philippa Hunter-Jones and Dr Lynn Sudbury-Riley argue that their research shows hospices must market themselves and their services more effectively in order to improve the experience of end of life care for both patients and families.
They cite how their data shows the general public have a lack of knowledge about the services available to the general public and how to access these services. The pair’s findings also highlight misconceptions about the term palliative, and a lack of emphasis on the importance of care at this life stage for the families of patients and the patients themselves (Source: University of Liverpool)
The academics were recently invited to Westminster to share their research with the All-party Parliamentary Group (APPG) Hospice and Palliative Care Inquiry into Improving Access to Hospice and Palliative Care.
Patients with incurable illnesses, among them dementia, liver failure are not receiving hospice care soon enough finds a Leeds University study. The NIHR funded study, which is also the first of its kind to look at this issue is (via Leeds University)
The researchers examined data from about one third of the UK’s hospices, including patient records of more than 42,000 people who died in 2015 with a progressive, advanced disease, after receiving community or inpatient palliative care at a hospice included in the study.
Among their key findings are that patients with cancer were admitted for hospice care 53 days before dying, for patients without cancer this was later with a referral 27 days before death. The team also identified variation across the coutnry with patients in the North admitted later than those in the South, Midlands and East of England.
Lead author of the study Dr Matthew Allsop said, “There are misconceptions held by the public and healthcare professionals about what palliative care is, who it is for, and when people can benefit from access to it.
“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer. It aims to help patients and their families achieve the best quality of life through treating or managing physical symptoms, and helping with any psychological, social or spiritual needs (Source: Univeristy of Leeds).
The research has now been published in Palliative Medicine, the article can be read in full via Sage
NIHR | March 2018 | Why the world needs to get ready for more people dying
“We are living longer and dying slower, but how well prepared are we for the challenges that come with that?”writes Dr Katherine Sleeman on the NIHR’s blog.
A swathe of medical and technological advances during the last century increased life expectancy dramatically by about 30 years rising to 83 for females and 79 for males, the consequence it meant individuals ‘delayed dying’. According to Dr Sleeman we are now at ‘tipping point’ as mortality rates are currently at half a million people a year in England, but this will be raised by about 20% in total over the next 20 years, until an extra 100,000 people are dying each year.
While palliative care is now appreciated as working best when used early and alongside other medical care; it receives, even in countries with high GDP, low levels of research funding. In England this is less than 1 % (0.5%) of the medical research funding allotted to palliative care and end of life research, at a time that Dr Sleeman recognises that demand for end of life care will increase by nearly 40 per cent in the next twenty years. Although advances have ‘changed how we die [they have]not changed the fact that it will happen to all of us.’
Tuffrey-Wijne, I. et al. Palliative Medicine. July 2016 vol. 30 no. 7613-615
People with intellectual disabilities are a sizeable minority group, making up approximately 2% of the population. They need specific attention when they reach the end of life. While many of the palliative care needs of people with intellectual disabilities may be no different from those of the general population, they often present with unique issues, challenges and disadvantageous circumstances that make it more difficult to meet those needs.
It has been shown decisively that people with intellectual disabilities have poorer health outcomes than the general population for reasons unrelated to the causes of their cognitive impairment, but rather, due to failings within healthcare systems. This is compounded by persistent negative attitudes and assumptions about quality of life of people with life-long cognitive impairments.1,2 These failings are not limited to acute hospital services or social care settings. In 2013, the Confidential Inquiry into Premature Deaths of People with Intellectual Disabilities (CIPOLD), which investigated the deaths of 247 people with intellectual disabilities, reported that
people with [intellectual] disabilities were less likely than the comparator group of people without [intellectual] disabilities to have access to specialist palliative care services and received less opioid analgesia in their final illness. Their deaths were sometimes described as not being planned for, uncoordinated and poorly managed.3 (p. 119)
The specific challenges for palliative care services have been well described.4,5 They include lack of knowledge and experience among palliative care staff in caring for people with intellectual disabilities, problems with symptom recognition and management, severe communication challenges, patients’ difficulties in understanding complex concepts including death and dying, multiple co-morbidities and complex social situations.