Faces of Caring is a community to share deeply human stories about caring for others, especially those facing serious illness. These issues have been amplified during COVID-19. It harnesses the advice of those with lived experience to better prepare those who are just starting their caring journey. Dr. Samantha Winemaker and Dr. Hsien Seow started this movement because they continually hear how the system lets people and their families down.
They almost gave up that anything could change. But then a few key insights gave them renewed hope. They realized:
Although they had expertise in end-of-life care, the pain points for patients and families began right at diagnosis. To improve the end, you have to improve the beginning.
Few wanted to plan for death, but many wanted to prepare for the uncertainties ahead.
Those who had gone through the caring journey had a great deal of lived experience that they wanted to share, but had never been asked.
We cannot do it alone. Individuals, families and communities can be the catalyst for improving the care experience. Collectively, we can show what caring looks like. And learn from one another.
Dr. Samantha Winemaker is a palliative care physician who has cared for thousands of people dying at home. Because she cares for people with serious illness and their families in their homes, she sees up-close how much unnecessary suffering exists for them. They express feeling abandoned, isolated, ignored, terrified, unprepared, unsupported, and overwhelmed. Despite her efforts to change the system to make it better, she says it is like déjà vu every day. She is hopeful that change can happen by empowering patients and families.
Dr. Hsien Seow is a researcher who studies how the sickest in society use the health care system. He has interviewed hundreds of patients, families, and clinicians to understand how to care for those with serious illness. Patients and families often say the caring experience is like hiking while blindfolded--never knowing what to expect next. Despite the evidence he has produced to improve the health system, he realized research can only go so far in creating change. He now believes large-scale change can only happen by empowering individuals, families and communities.