Some people have severe pain, confusion, difficulty breathing, or other problems at the end of life that cause unbearable suffering. Sometimes, the symptoms are so extreme that no available medications help relieve patient suffering. In these cases, patients may receive palliative sedation. Palliative sedation is when the patient is put to sleep (sedated) with medications called sedatives, so they no longer feel the symptoms that are causing them to suffer. The best way to provide palliative sedation, such as when and who to provide it to, is still not well known. In this project, we will conduct interviews with healthcare providers, review medical charts, and review existing research to create an online training program for healthcare providers to learn more about palliative sedation and be confident in the decisions they make with patients and their loved ones at the end of life.
Recruitment to platform at one of the hubs
Consent and enrolment in platform
Collection of key data, minimizing participant burden for individual trials
Screening automatically for all trials taking place on the platform, maximizing options for patients and caregivers
Trials – patients and caregivers participate in trials they are eligible for
Ongoing check-ins – patients and caregivers are followed until they choose to stop participating or until patient death
Bereavement – we follow caregivers for up to three years and offer them bereavement interventions
By linking practice and research, the platform will improve care for patients and families affected by advanced cancer.
Practice
Clinicians, patients, and caregivers identify areas for improvement in care.
PCPCRC
Supports foundational research that identifies promising interventions.
Research Platform
Comprised of Phase 3 RCTs, Research Hubs, Data Strategy.
Evaluation of hub model and data strategy to optimize research.
Training and mentorship underlie and uphold all activities in the cycle.