Illness Experiences and Palliative Care Needs in Community Dwelling Persons with Cardiometabolic Diseases

Purpose: This study was conducted to better understand the illness experiences and palliative care needs in community-dwelling persons with cardiometabolic diseases. Methods: This qualitative descriptive study was conducted with 11 patients (and three family members) among 28 patients contacted. Interviews were led by the principal investigator in her office or at participants’ home depending on their preference. All interviews were digitally recorded and transcribed by a research assistant. The interviews were analyzed by two independent researchers using a conventional method. Results: Participants’ ages ranged from 42 to 82 years (nine men and two women). Three themes were identified: (1) same disease, but different illness experiences; (2) I am in charge of my disease(s); (3) preparation for disease progression. Participants were informed of the name of their disease when they were diagnosed, but not provided with explanation of the diagnosis or meant or how to do selfcare to delay the disease progression, which increased the feelings of uncertainty, hopelessness and anxiety. Taking medication was considered to be the primary treatment option and self-care a supplemental one. Advanced care plans were considered when they felt the progression of their disease(s) while refraining from sharing it with their family or health care professionals to save their concerns. All participants were willing to withhold life-sustaining treatment without making any preparation in writing. Conclusion: Education on self-care and advanced care planning should be provided to community-dwelling persons with cardiometabolic diseases. A patient-centered education program needs to be developed for this population.