Our local upstate chapter of Family Connections works with parents and 3rd year USC med students doing their residencies at Greenville Hospital System to provide PEAP - Physician Education Awareness Program. I have hosted this twice at my house, and hope to do it many more times in the future! It's a wonderful opportunity to get young doctors in the homes of our "incompatible" children, and show them what they are REALLY like. I also get to explain how seeing a child in the hospital, or even for an office visit, does not give any medical professional an accurate picture of who the child really is and what they can accomplish.
|This is from the Jan 2013 PEAP session. These 3 doctors hopefully have a more positive view of trisomy 18 in their careers.|
|This is Maddie, she as a 2q microdeletion and tag-teamed a PEAP session at my house in March 2012.|
|Our March 2012 session had a total of 6 med students. Here are four of them.|
|Here are the other two med students with Rebekah, my son - Jeremiah, and Family Connections' Michelle Johnson who coordinates this program in our area.|
I polled my special needs families and trisomy families for input on what they would want to tell doctors and medical professionals about our children. This is what we came up with...
PEAP – Physicians Education Awareness Program
What Do You Do When You Have A Pediatric Patient With Multiple or Life-Threatening Disabilities?
1. This is a child first and foremost
- Use People-First Language (I included some PFL handouts which was already part of what Family Connections gave the Med Students.)
- People First Language (PFL) represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first. PFL is not about "political correctness," it's about good manners and "the golden rule."
- Use the child’s name.
- Speak of an unborn child as a person, not a thing.
- Do not make assumptions about the capabilities of a child that you have only spent 5 minutes or less with. Ask to see pictures of the child in his/her home environment. Ask what milestones the child has reached. Ask how the child communicates. Children may be “nonverbal”, but still communicate effectively!
- Even if managing care for a child that has 10% chance to survive, that child still DOES have a chance. They are not “incompatible”, care is not “futile”.
- Parents (and doctors) can be realistic AND hopeful at the same time. Being realistic would include surgery recovery times, more aggressive and proactive care, etc.
- Parents want choices – do not force or assume palliative care or hospice is always in order for a specific child.
- Tell the WHOLE truth – not just the medical books truth. Give options and realistic expectations. If you don’t know what those are, don’t make assumptions. Be honest about it, or seek out documentation to support your views.
- Intervention is not always wanted to prolong life. Sometimes intervention is necessary to improve the quality of life a child has – regardless of how long they will be here.
- Give parents the information they need to make informed decisions. Don’t assert your personal opinion into the mix.
- SUPPORT A PARENT’S DECISION, whether you agree with it or not. Don’t question why a child is full code.
- Treat the child, not the syndrome. Each child is unique. Two children with the same syndrome will not have the same outcomes and issues. Don’t treat them with cookie-cutter care.
- Treat the family, not the medical issue. Each family is unique. The care path that one family takes will not be the same as another family facing a similar situation. Adjust your care to the needs of each family and child.
- Do not speak down to the parents, or treat them like they are idiots. For parents with an unborn child or infant, be compassionate. For parents with older children, they are probably far more aware of their child’s condition than you are.
- What you learned in school does not necessarily reflect “reality”.
- Listen to the parents – they will no doubt have insight into their child and maybe even the condition if it is something you have not had extensive experience with.
- Network with families so you can grow beyond book and clinical knowledge to understand how families manage caring for a child with disabilities.
- While you may see a child with a hopeless future, the parents see a child they love and cherish – no matter what. Don’t discount that love. A child cannot be replaced (“you can always have another baby”). One child is not more “valuable” than another (“save your time/effort/money for your other children…”).
- Families of children with disabilities need long term care and access to resources. Familiarize yourself with programs and support systems so you can pass that on.
- Be willing to search and provide medical journal articles and supportive research papers that will help the family cope with their child’s specific issues.
- Help connect families with similar disorders – peer support is critical!
- There is a huge difference between seeing a child critically ill in the hospital, or sick in the doctor’s office, and seeing that same child in their home environment surrounded by comfort, familiarity, and love.
- There are many children who react differently around “strangers” than they do at home.
- I love my child with fill-in-the-blank as much as I love my “normal” children.
- My child loves me back.
- My child communicates.
- My child experiences joy, love, happiness.
- My child with disabilities is special in many ways. They all have different needs.
- Ask yourself, “What would I do if (insert name) were MY child?”