As the population ages, health professionals and scholars are investing time to determine how to best communicate advanced care planning to patients. Research from Yale University suggests too few older adults plan ahead for end-of-life medical decisions, and when they do, their preferences aren’t always communicated or understood. The goal of advance care planning is to allow adults to prepare for future treatment decisions, however research has shown that surrogates often don’t know their patients preferences and goals outside of end of life decisions. Dr. Terri Fried interviewed 350 veterans 55 years or older as well as their surrogates. Dr. Fried asked if the patient would prefer treatment even if the treatment would leave the patient severely impaired physically, cognitively, or in severe pain. The research team found over 40% of the veteran-surrogate pairs agreed wishes were not fully communicated.
The Coalition for Supportive Care of Kidney Patients (CSCKP) is making strides to promote effective communication among patients, families and healthcare professionals to ensure patient-centered supportive care for patients with kidney disease. CSCKP was started by ESRD Network 5 as part of a recommendation that the Centers for Medicare and Medicaid Services (CMS) work with ESRD Networks to improve education and training on end-of-life care for ESRD patients. Most recently, CSCKP has released two new tools to assist patients and their care teams with advance care planning. The new brochure Planning Today for Tomorrows Healthcare: A Guide for People with Chronic Kidney Disease in conjunction with a Curriculum Guide for Advance Care Planning provides step-by-step instructions for creating a comprehensive advance care plan. These resources provide questions to ask your healthcare team, in addition to providing hypothetical situations to stimulate conversation between you and your healthcare agent/surrogate. Notably, the brochure includes questions about wishes outside of end-of-life care, the same questions Yale researchers determined were not fully communicated.
While discussing advance care planning can be stressful and scary, it is an important part of your current care plan. Discussing health goals will better guide your care team to keep you healthy and comfortable long before palliative care is necessary.
