Spotting signals key to end of life care for homeless

The final few months of life for homeless people with advanced liver disease could be much improved by spotting key signs of deteriorating health so they receive the right palliative care at the right time, says new research published today.

The Marie Curie Palliative Care Research Unit   at University College London conducted the study in partnership with homelessness charity St Mungo’s.

St Mungo’s and Marie Curie Cancer Care have been working together since 2008 to deliver an innovative specialist palliative care advice service with the support of funding from a three year grant from the Department of Health. This funding ends in September.

The research described in the report reviews the experiences of 27 St Mungo’s residents with advanced liver disease who died last year:

• The majority of the deaths of people receiving care from St Mungo’s each year are associated with liver failure (31out of 56 deaths in 2009/10).
• In this group there is a high rate of hospital admissions, as well as significant distress in the last six months of life.
• UCL academics studied the cases of 27 St Mungo’s residents who died between January 2009 and April 2010. Of these, 26 were men, one a woman, aged between 32 and 84 years with an average age of 55.

Peter Kennedy, St Mungo's Palliative Care Service coordinator, said: "Hostel staff are best placed to recognise when a resident’s condition is deteriorating. Most commonly, around two months before death, there can be an increase in jaundice, bleeding, social isolation or a reduction in someone’s self-care.

“This research will help our staff and others to better spot key signals and then to offer the best possible palliative care to that person, while also preparing friends, family and staff.

“There are no nationally-recognised indicators in this area and this is very welcome early research into how we can better support people who’ve often experienced much trauma in their lives already.”

Dr Louise Jones, Head of the Marie Curie Palliative Care Research Unit, UCL, said: "Liver failure runs an unpredictable course. It is often difficult to judge when significant deterioration is occurring and the end of life is approaching.

“People who are homeless often have a range of difficulties to face, and best and appropriate care at the end of life for them is as important as it is for any other group. This report looks at the issues, where gaps could possibly be filled and gives some good insights into how services could develop further."

Key findings included:

• A combination of physical, psychological and behavioural signs and symptoms are observed in homeless people with liver disease as their health deteriorates and the end of life approaches, such as memory problems, increased jaundice, spontaneous bleeding, low mood, social isolation and poor self care.
• Residents are often in denial about their alcohol intake and its impact on their health. They can be reluctant to take responsibility for their drinking or to work with health or social care services. While the majority of residents are registered with a GP, they do not use their services.
• Residents access healthcare mostly from secondary services in the last six months of life.  However, this is limited by their reluctance to be admitted to hospital because of restrictions placed on their behaviour.
• Hostel staff are not often able to plan for end of life care with residents and access to palliative care is minimal. Hostel staff and other residents also need support following the death of a resident.

Find out more on the St Mungo's website.

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