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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

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