Academic institutions by nature can be overwhelming to patients and their families when they are called in for an organ transplant procedure. The facilities can be complex and difficult to navigate; when patients and families are called to the hospital in the middle of the night, anxiety can be over and above what is already a stressful situation. There is no predictability in terms of when patients will be called in for their transplant procedure and although the clinical team is in the hospital 24/7, patients and family members have questions about the logistics — where to stay and what will happen next. In some instances, patients and family members may not be thinking of questions to ask.
Using the Patient and Family Centered Care Methodology and Practice (PFCC M/P), we Shadowed patients and family members being called in for their transplant procedures. The Shadowing results showed specific areas of opportunity to improve the patient and family experience by providing additional information about the transplant process itself, the importance of companionship for family members, as well as a need for additional logistical information about the facility and lodging resources. One of the family members who participated in the Shadowing experience commented that a “guardian angel” would be helpful in assisting them through this overwhelming process.
A Liaison, a Companion, a Resource
The goal of the Transplant Guardian Angels Program* is to provide on-site resources 24/7 to patients and their family members when called in for their organ transplant procedure. Transplant guardian angels go beyond the role of “navigator” to serve as a clinical liaison, facilitating communication between the family members and clinical care team, providing companionship to lessen the anxiety and stress of the family members, and helping with navigation of the facility and other resources. The Guardian Angel job description and orientation includes direct observation in the clinic as well as attendance at didactic sessions about the transplant process conducted by members of the transplant team.
The Measure of Success
Since implementation of the program in 2011, the Transplant Guardian Angels Program has provided services to a total of 228 individuals representing Adult Heart, Lung, Liver, Kidney, Pancreas and Intestinal transplant patients. A follow-up survey was implemented to obtain feedback related to the services provided. Patients who received the services of Transplant Guardian Angels were asked five (5) questions:
- Were you kept updated regarding your transplant status?
- Did your guardian angel assist you with navigating the hospital?
- Did you find the guardian angel beneficial to your transplant process?
- Would a guardian angel have been helpful to you during your pre-transplant evaluation process?
- Do you have any suggestions for the Guardian Angel Program?
Seventy-one (71) patients, representing a 31% response rate, have completed the questionnaire; and 100% of those surveyed responded yes to questions 1 thru 4.
Recurring comments received in response to question 5 were: “keep up the good work,” “great job,” “excellent program,” “the angel was kind, helpful, comforting and answered all of my questions.” Based on the feedback to question 4, the program has recently been expanded to the pre-transplant evaluation process.
The value of companionship cannot be stressed enough for patients and family members when they are awaiting what will be a life-saving and/or enhancing organ transplant procedure. Having a dedicated resource available to assist with logistical items as well as to listen is value-added in the patient and family care experience.
*The Transplant Guardian Angel program received grant funding in 2011 from the Picker Institute’s Always EventSM program (now a program of the Institute for Healthcare Improvement) in keeping with the Always Event goal of Always providing accurate, real-time information and seamless transitions in care.