There are other ways to think about decisions, but the three ways we talk about here are a good place to start. Your health care team will want to talk with you about any ways you have of thinking about things. Be as clear as you can about what is important to you and what you are thinking.
Please note: The following information was obtained from Children's Hospital and Clinics of Minnesota.
Parents are given a lot of medical information. They also bring important information about what is important to their child and their family. Parents are the experts in their child's life, and also learn a lot about their child's medical care. Health care teams ask parents to guide us about what is best for their child. But parents are not alone in these decisions. The doctors will let you know what is possible and should make recommendations about what they believe is best.
You should ask as many questions as you need to about how your child's doctors and health care team understand your child's condition. Understand that you remain the person guiding the direction of treatment. Your job is to do the best you can even when we don't know for sure what will happen or what is right. Working together, you and your child's health care team will be able to arrive at what is best for your child.
The Hand in Hand Program Team Members
Andrew Macfadyen - Medical Director
Our Medical Director for Hand in Hand is a board-certified pediatric ICU doctor with many years experience in caring for children with complex, chronic medical conditions, especially those requiring a lot of medical technology. His role is to help the patient's primary care physician with symptom management.
Sue Bace - Coordinator & Social Worker
Our licensed clinical social worker is available to answer any questions about referrals to Hand in Hand and is involved in staff and community education on pediatric palliative care. Her focus is on psychosocial assessment, coping and referral to financial and supportive resources available to patients and their families. She is also the Coordinator of the Hand in Hand/Palliative Care Program.
Cheryl Darnall - Nursing Case Manager
Our Palliative Nurse Case Manager helps families understand the medical care
needed for their child. Due to the higher level of care, our nurse case manager provides care coordination and helps with communication between the family and health care team. She also assists the family and palliative care team in development of a palliative plan of care that describes the family's goals related to quality of life for their child. Once the plan is developed this nurse helps to ensure that the plan of care is communicated to all care providers.
Nicole Walker - Certified Child Life Specialist
Our certified child life specialist is available to families, primarily focusing on the
patient and siblings to aid in coping and understanding of a diagnosis. This is accomplished through a variety of methods such as providing support and explaining medical information on the patient or siblings developmental level. She also can be a resource to parents and assist with memory making.
Sheila Mee - Chaplain
Our Chaplain is available to patients and families for spiritual support. She can
assist with a variety of religious needs and or/questions. She is also able to help
process quality of life and end of life issues.