Patients with late-stage serious illness often face a struggle to live and die with dignity while in the care of a largely fragmented and impersonal health care system. As a result, research shows that patients often feel depressed and alone, and experience care that didn’t align with their deepest wishes.
“We know that our health system is not configured well to deliver care for elderly people in general — especially for those in palliative care,” says School of Public Health Associate Professor Tetyana Shippee. “The question is ‘how do we deliver sensitive care for people with multiple chronic conditions who are close to death?’”
According to a new study from Shippee, one answer is an approach that uses lay care guides to help patients with advanced-stage serious illness navigate the medical system and live to the fullest during the final few years of their lives.
The research was recently published in the Journal of Applied Gerontology.
Care guides are the main component of a program called LifeCourse, which prioritizes improving a patient’s quality of life (QOL) when they are within a few years of death. Care guides get to know patients as whole people in order to effectively provide emotional support, answer questions, and coordinate care with the medical team. LifeCourse was tested on individuals with advanced-stage cancer, heart failure, or dementia. Shippee measured their QOL using a survey tool specifically designed to assess the wellbeing of patients in palliative care.
“We found there was significant improvement in overall quality of life scores of patients between the baseline and six-month measurements,” says Shippee.
The main improvements in patient QOL were found in the areas of emotional health and a palliative domain measuring an individual’s preparedness for dying.
“Patients reported many benefits, such as saying that before LifeCourse, they felt alone and with it, they felt there was someone supporting them who cared,” says Shippee.
Shippee also pointed out that LifeCourse and its care guides successfully helped families talk about emotionally difficult topics, such as advanced care directives and hospice enrollment.
Shippee said that health systems should be eager to adopt the LifeCourse model because the results demonstrate that it can help a vulnerable population in need of compassionate treatment. She also stressed that adopting the approach will require the participation of not just health care systems, but also policymakers and payment providers in order to establish this new paradigm of care.