Mesothelioma patients and their families in the United Kingdom are being asked to participate in groundbreaking research exploring how caregivers can better support decision-making about where to receive end-of-life care and die—whether at home, in hospital, in hospice, or in a care or nursing home. Recognizing that the place of death has a profound impact on end-of-life experiences, the Yorkshire Cancer Research Fellowship study focuses on this important aspect of future planning for those facing the realities of this asbestos-caused cancer.
Mesothelioma Families Share Their End-of-Life Experiences
The end-of-life mesothelioma study involves both patients and their families who are living with this devastating disease and bereaved families who’ve already gone through the process. The participants will share their experiences through interviews about both current challenges and, for those who’ve lost loved ones, their final days in different care settings.
The research is using a mixed methods approach that values the lived experiences of those most affected by mesothelioma. It will analyze both national data showing where people with this disease die and previously collected research from the Mesothelioma UK Research Centre to identify patterns and unmet needs. For families who watched parents, spouses, or siblings suffer through the rare and painful cancer, participating offers the opportunity to help future patients navigate end-of-life decisions.
Mesothelioma Healthcare Teams Discuss End-of-Life Challenges and Solutions
In addition to patients, the study will solicit feedback from mesothelioma care teams, including doctors, nurses, and hospice workers. These professionals will participate in focus groups to discuss both opportunities and the challenges they face in having planning conversations with patients and families about the place of death and care preferences.
Led by Yorkshire Mesothelioma Clinical Nurse Specialists Simon Bolton and Helena Stanley from Mesothelioma UK, the study begins with the understanding that providing better support to healthcare professionals in facilitating these sensitive discussions can dramatically improve patients’ ability to die in their preferred location, surrounded by loved ones. The study’s final stage will involve assembling end-of-life decision-making resources that genuinely reflect patients’ needs rather than assumptions made by researchers alone.
If you or someone you love has been diagnosed with mesothelioma and you need support, the Patient Advocates at Mesothelioma.net are here to help. Contact us today at 1-800-692-8608 to learn more.
