Improving End of Life Care
The Observatory undertakes research at local, national and international levels through primary research studies and reviews. Its 29 staff bring together a wide range of methodological and theoretical expertise drawn from clinical and social science perspectives.
Recent research undertaken by Professor Sheila Payne, Director of the International Observatory on End of Life Care, has shown the value that palliative care techniques could bring to stroke care. The study, performed on behalf of the Stroke Association, revealed that people who have had a stroke, and their families, are not being given to the chance to prepare properly for death and to decide whether to die at home.
Professor Payne found that found that care for people who have had a stroke was very much focused on rehabilitation, which though successful in some cases, did not take into account that approximately 30% of people with stroke die in the first 28 days. Diagnosing whether someone is likely to die through the adoption of a routine test could greatly assist the care of stroke patients, along with skills and good practice in pain management and preparation for death which many cancer patients already benefit from.
Unpacking the Home
The burden of caring for someone dying at home, possibly over many months, are huge. It will only be possible for more people to die at home if the people who care for them can rely on much better personal support and medical care. People want to die with their families, without being a burden to them. Many elderly people will die while they are on their own; to die at home they will need special support.
The International Observatory on End of Life Care is investigating how people care for relatives or friends who die at home. A two year study, starting on June 1st and funded by Marie Curie Cancer Care, will feed back into the NHS End of Life Programme and inform government policy on how best to support carers. The in-depth study entitled “Unpacking the home” will involve interviews with approximately 50 bereaved carers in the North West and South West of England, where there is a large population of older people.
Pain Medication in Europe
A key component of palliative care is pain relief, yet access to appropriate pain medication for those at the end of life is not consistent across Europe. Legal controls over opioid medications make it very difficult to prescribe these drugs in some countries, even when they could be of significant benefit in palliate care.
The Observatory is working to address this issue with a consortium of academic institutions and public health organizations through the ATOME Project (Access to Opioid Medication in Europe). The project’s focus includes legislative, medical and social barriers to pain medication access, ranging from specific legal constraints to misperceptions around opioids and dependence in end of life care.