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Linking Complex End of Life Care<br />
With Research: Challenges and<br />
Potential Benefits<br />
Tracey Coleby<br />
Macmillan Clinical Nurse Specialist<br />
and End of Life Project Manager<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
End of Life Care and Research<br />
• Limited research already in this area<br />
• Because:-<br />
• Rapidly changing condition<br />
• Difficult to pinpoint what’s researchable<br />
• Often can only use snap shots rather than<br />
repeated visits due to limited prognosis<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
Rapidly changing condition<br />
• Timing crucial<br />
• Effects of disease burden<br />
• Multiple medications<br />
• Effects of medication<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
Difficult to pinpoint what’s<br />
researchable<br />
• End of life care is complex<br />
• Often a combination of things that has an<br />
impact<br />
• Researcher and clinical staff often have<br />
different view points<br />
• Difficult to get funding<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
Patients<br />
• Often can not tolerate long conversations /<br />
interviews<br />
• Too unwell to complete questionnaires<br />
• Only able to do snap shots due to poor<br />
prognosis<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
Carers<br />
• Might be distressed / struggling<br />
• Very different view point to the patient<br />
• Difficult to know when to contact carer<br />
• Whilst deteriorating<br />
• After death<br />
The Christie<br />
NHS Foundation Trust<br />
NHS
Potential benefits<br />
• Better understanding of the effects of what we do :-<br />
• Patient<br />
• Carer<br />
• Raise the profile of End of Life Care if more evidence<br />
available :–<br />
• Within organisations<br />
• With other clinicians<br />
The Christie<br />
NHS Foundation Trust<br />
NHS