The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device

Abstract

Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods of time rather than at home where there is improved quality of life and less exposure to hospital acquired infections. In our state pt < than 21 years of age are able to receive concurrent care home hospice (HH) and still remain listed for HTX. We hypothesize that the continued utilization of HH will decrease the frequency of clinic visits, emergency department (ED) use and hospital admissions. We now refer all pt <21 years old on chronic milrinone and/or VAD to HH when clinically ready for hospital discharge (d/c). The HH staff meet the pt and family in the hospital prior to d/c to establish a plan and set up the first home visit. Once home, pt are seen by HH up to 3 times/ week to assess vitals, weights, draw labs, change dressings, assess feeding and check supplies. The HTX team is updated after each visit on the pt's status and the plan of care. There is a HH physician, as well as a palliative care physician, who assess the pts on a regular basis and communicate directly with our providers. The HH team is on-call 24/7 to assist as needed. Other HH team members include a child life specialist, chaplain, social worker, and dietitian for added support as needed. Pediatric HH has made it possible for pt on chronic inotropic support and/or VAD, who previously may have been waiting in the hospital for HTX, the opportunity for d/c home, even several hours away from their HTX center. It limits the time the pts need to spend in outpatient labs, clinics and ED's as the HH team is able to provide services in their homes. In addition, families have to travel less, saving them time and money. Pediatric HH has provided our pt awaiting HTX on milrinone and/or VAD with well-rounded medical care and support in the home. HH staff provide the HTX team with information to help determine need for hospital admission, closer follow-up, and even de-escalating care. As our numbers grow we will evaluate the effects on all-cause hospital re-admissions, utilization of the ED/clinics, waitlist mortality and overall pt/family satisfaction.