The children’s hospital that we go to has has a huge initiative around making sure that there is transparency between the patients, parents and the medical staff. In order to make this happen over the course of the last couple of years they have started doing shift changes in front of the patient and parents (unless requested not to). Parents have always been invited to attend rounds, which is when every person involved in your child’s care during the hospital stay gets in the room and discusses the events of the previous day and the upcoming plan. My husband and I became very familiar with these when my daughter was in the NICU. We attended rounds as often as we were able.
In this realm, often during some of a patients final hospital stays, parents can call ask for a Care Conference. This is a meeting with all of your child’s major doctors. It’s similar to rounds but it would include all of your care providers, including your Pediatrician. The only people that know your child and their care like you do, only like… half as much… With my hospital, care conferences can be arranged by working with a hospital social worker but as the parent, you are the boss. You can work with your Pediatrician to make this meeting happen at any time during your complex child’s care.
Having a hard time putting one together? It’s understandable, these are important, and usually very busy, people! In a pinch? Make it a conference call. It’s important, you can make it happen, if they care about you and your child, they will make it happen too. Even if you have to be the “squeaky wheel”. As a parent who knows what’s best for their child do not be afraid to be the squeaky wheel if you need to!
But, once you have them all in the room together, what next? Where do you start when you are in a room with so many people so closely involved in your child’s life? How do you go about this without stepping on toes? What do you ask? What if you cry?
Here are some tips to a successful care conference from some of the most experienced special needs parents.
- Be grateful – Recognize that you are thankful for the time that everyone there is taking to discuss your child and their plan. Thank them for their effort in working with you in the past and any special care that they have given to your child.
- Have your personal notes – Prior to your conference carry a note book around with you and jot down any notes or concerns that you might want to discuss with their care givers. Consider jotting down a few helpful phrases to remember to use during the conference. “I understand that you think this should be the next step, but I feel…” or “I know my child will benefit from…”
- Have a hand out – Pass out a document with your concerns at the start of the meeting. This will be appreciated because not only will it serve to make sure all your concerns are addressed but it will also keep you on task. It will be hard to get them all here, make them realize it is as worth their time as it is yours.
- You don’t have to agree – As long as you are choosing your words wisely, even if you don’t agree it is okay. Not all doctors are going to agree on how to move forward, be sure to advocate for what you feel is the right course of treatment.
- You can cry – It is okay to take a minute to compose yourself and cry if needed. Ask for a moment, take a deep breath and move on. Respect goes a long way, if the doctors don’t feel like they are being blamed or responsible for your anger or sadness it will be a lot easier to accomplish your goals.
- Remember, they are human just like us. Doctors are armed with text books and ‘most common cases’ but as you well know, each child writes their own book. Not all cases are alike, they are trying to figure out your complex child too. Shoot, text book cases of what my daughter has show only 6% making it to birth and only 3% of those beyond three months! She is 7! There is no text book for some things!
- Take notes – Consider having a family member or friend come to take notes. Sometimes when we are caught up advocating for our children and we have emotions rolling we may miss some of the conversation. I always tend to forget way too much when I try to formulate my thoughts after the fact.
I know of people who have had great success with care conferences and others who have given up during the planning stages. Remember, everything worth having is difficult. If you now this is something your child will benefit from, don’t be afraid to make a care conference happen. Good luck!
Have you had success with a care conference for your child? Let us know!
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