These are uncertain times for many in the CHD Community. CHD clinicians provide reassurance about the importance and value of telemedicine and how resources like Conquering CHD’s Guided Questions Tools are helping in communicating with patients and families from a distance.
People with CHD are working hard to navigate social distancing and the uncertainties about what the future holds. One important change is how a patient interacts with the medical system. Gone are the days of dropping in for a quick check-up. Scheduled visits are canceled and even elective procedures are being postponed. Urgent care is taking place in parking lots.
There is no familiar way to do things anymore. This results in uncertainty about when and how to connect with your care providers.
Receiving care through telemedicine has rapidly become the new norm during this COVID-19 crisis. With this new way of managing care, patients and families are encountering new challenges when making healthcare decisions.
Telemedicine is described as the diagnosis and treatment of patients from a distance, using remote technology and communication. While telemedicine provides a safety net for CHD patients and families during this global health crisis, it adds more stress to the decision-making process. How can patients and families continue on their treatment journey when they are not seeing their care team face-to-face?
Conquering CHD’s series of Guided Questions Tools to the rescue! Designed to guide the conversation between the patient and family & care team, tools are available for adult patients and youth patients & their caregivers in English and Spanish. Patients, families and clinicians may download or link to these documents for free at any time:
As centers around the country move towards telemedicine appointments, patients and families should be prepared to have discussions via email and phone calls. Care teams are working hard to meet the needs of their patients while protecting them from unnecessary visits to the hospital or clinic.
Aaron Kinney, Executive Director of Herma Heart Institute at Children’s Wisconsin, notes their hospital and heart center staff are very concerned about families who are afraid to interact with the system during this time.
“If I could tell families one thing, it would be to just pick up the phone and call. The healthcare team is very worried about their patients at home and would love to hear from them. They will do everything they can so they don’t have to come to the clinic or hospital. New rules are being put into place to make that easier than ever.”
Mr. Kinney also explained that new laws are allowing telemedicine visits to be counted as clinic visits, so healthcare teams can actually discuss medical concerns over the phone.
Clinicians at Herma Heart Institute are providing Conquering CHD’s Guided Questions Tools to patients and families electronically on their website. Their digital companion tool further assists in shared decision making when patients and providers cannot be face-to-face.
Amy Lund, Nurse Practitioner in Fetal Cardiology at The Children’s Heart Clinic in Minneapolis, says her center is working on a plan for telemedicine appointments and is already giving families electronic copies of our Guided Questions Tool.
I am sending patients the Guided Question Tool via email in addition to the electronic PDF of our answer key. I have been reviewing the tool and our answer key via phone, and families have been able to email back and forth if questions come up as they continue to review the document.
Amy adds that she has found email communication to be a valuable communication tool during this crisis. She continues to review our Guided Questions Tool line by line however possible, so her families get the education they need to care for their baby once born.
In addition to the Guided Questions Tools, Conquering CHD is working behind-the-scenes on final approval for its Hospital Navigator program. This program will provide an interactive website where patients and families can learn more about congenital heart surgery centers and their outcomes, helping navigate a conversation with their care team.
Conquering CHD is proud to provide a robust library of educational resources, ensuring patients and families have the information they need to make the best healthcare decisions possible. We encourage patients and families to review our website for the resources available and email us with any questions. Stay well!