At Gillette Children’s Specialty Healthcare, family members are valued members of a patient’s health care team.
We understand that caring for patients with special needs or having a family member in the hospital can be stressful. Patients may see several specialists, and communicating with all of them can be challenging. But it’s important that you understand recommended treatments and know your rights and responsibilities so that you can advocate for a patient’s needs.
The Patient Bill of Rights guarantees:
- Respect for patients and families
- Access to staff members who listen patiently and take your concerns seriously
- Courtesy from health care providers
To make sure patients get the best possible treatment, you’re responsible for:
- Understanding the patient’s care plan and how you’ll help to carry it out
- Asking us to explain things you don’t understand
- Taking part in care and discharge planning
- Contacting the patient’s health care provider if the patient’s condition worsens or doesn’t follow the expected course
When you have questions:
- Talk with the health care team.
- Make a list of questions and concerns.
- If you don’t understand a treatment or why it’s necessary, ask for more information.
Sometimes situations involve complex care. Information about treatment goals might seem confusing. Family members may need an update on progress or disagree with actual or proposed treatments.
Often there’s not enough time during clinic visits or medical rounds (when doctors follow up with inpatients) to talk with a doctor about your concerns. If that’s the case, you can schedule time with the patient’s doctor or nurse, request help from a social worker, ask for an ethics consultation or contact Gillette’s Quality Improvement at 651-229-1706. Or you can schedule a meeting with the health care team. These meetings are called care conferences.
Care conferences are helpful when:
- Treatment isn’t going as expected.
- You have concerns about a treatment’s effectiveness or appropriateness.
- The patient has special emotional or behavioral needs that need to be addressed.
- You need more information about providing care after discharge.
- You need help coordinating the patient’s many care needs.
Care conferences might include you and the patient’s doctor, or they may include staff from various disciplines (e.g., doctors, occupational and physical therapists and psychologists). Sometimes an entire team is present. In addition, families can bring someone they trust to provide added support. Typically, care conferences are held during a hospital stay, but sometimes they take place before a hospital admission or at a clinic visit.
Care conferences are good opportunities to:
- Be assertive and ask for what the patient needs
- Advocate (or speak up) for the patient’s rightful health care needs
- Express your needs clearly and directly without feeling guilty
- Disagree respectfully and express your feelings
Requesting a Care Conference
Patients or families can request a care conference at any time. Ask a nurse, social worker or physician. Gillette will schedule the care conference and help set the meeting agenda.
Negotiate To Reach Agreement is a useful resource that is published by PACER Center and available through Gillette’s Child and Family Services. In addition, Health Resources and Education has an extensive library of books, magazines, publications and videos and Internet access.
- Child and Family Services: 651-229-3855
- Gillette Patient Representative: 651-578-5218
This information is for educational purposes only. It is not intended to replace the advice of your health care providers. If you have any questions, talk with your doctor or others on your health care team.