Reaching the scientific community, a vital part of our project
The iLIVE Project was born with a powerful idea in mind: that it is possible to provide a better end of life care for patients, relatives and caregivers in general. The last stages of terminal illnesses are very hard and difficult times for all parts involved, also for health care workers. Pain, grief and mourning are not easy to manage.
That is why we want to make new protocols to alleviate the suffering of the patients and to make possible for those final days to be meaningful and compassionate. Our goal, then, is to change the policies, the very core of the regulations that dictate how terminal diseases are treated in our hospitals. To achieve this we need to reach out to the scientific community.
We have not all the answers as to how a good protocol should work in all cases. That is why we are interested in hearing all parts involved. We are already doing this with interviews with patients, relatives and health workers. But we also need to reach the policy makers, those who can make a difference. We are talking about politians, but also hospital managers and scientific and research teams.
By the end of the project we will have gathered a substantial core of data that will be very valuable to make a difference in the way patients are treated in very different ways:
-Being able to understand the feelings and emotional needs of patients and relatives. Their thoughts during the treatment and their ideas about how a 'good death' should work, alleviating the suffering.
-Being able to adjust the medication patterns in a more effective way to eliminate unwanted side effects and to promote the wellbeing of the patients.
-Being able to create a volunteers program that would be able to work in any given sanitary setting, avoiding those situations where the presence of volunteers would not be helpful, but also bringing that help where it is needed.
So if you are a policy maker, we are interested in knowing your input in any of this topics.