Patient Segment: Individuals with Advancing Illness
Patients with advancing illness have one or more serious conditions (like cancer, congestive heart failure, or dementia, for example) and are experiencing symptoms that impact their quality of life and activities of daily living. In addition, they may be having side effects from treatments, problems eating, frequent emergency department visits, or hospitals readmissions. They may be in an end-of-life stage and could be receiving palliative or hospice care. They rely heavily on paid and unpaid caregivers.
Isolated Isabel: Isabel hates feeling like a burden. Her caregivers experience high turnover, which weakens her social support system. She also worries about her finances and is afraid of falling. Isabel lacks reliable transportation and lives in a remote location, adding to her feelings of isolation.
Resigned Ryan: Ryan is deeply unhappy about his health; he resents his limitations and is struggling to come to terms with his dependency on others. He appreciates it when his doctors are straightforward, so he knows what to expect and how to prepare. Ryan wants to minimize his suffering and hopes to die quickly to avoid a prolonged decline.
Dignified Diana: Diana resolves not to let tomorrow ruin today and wants to be strong for her family. She values the support she receives from family and community members. She prioritizes these connections and her ability to contribute. Diana finds it difficult to accept new limitations but stays positive and hopes to live as long as she can.
High-Need Patients and the “Personas” Project
For patients with high needs — because of multiple chronic conditions, a limited ability to perform tasks like bathing or dressing, or other disabilities or conditions — health care can be challenging as well as extremely costly. Patients often report that their needs for care are unmet and that they don’t communicate adequately with their providers. A Commonwealth Fund project interviewed dozens of patients to explore their experiences and how their struggles to find support has affected their lives and those of family caregivers. As part of this research, we developed “personas” for different segments of the high-need patient population, including the caregivers attend to them. A persona is a tool that helps depict the experiences, motivations, and goals of a specific population – as well as the barriers they face. It helps to put a human face and voice on a patient population that is all too often seen only through a lens of clinical or cost data. Personas can help identify gaps in care or processes and can aid health systems in addressing these flaws.