Is your child a “frequent flyer” at the hospital? My daughter is. I used to think it was absolutely dismal spending so much time there, even though the staff is amazing, the rooms are comfortable, and they have school and play therapy. In my mind, being in the hospital was equal to zero quality of life. Quality of life is our top priority in determining care, so what was I supposed to do when that conflicted?
I used to work as a birth doula (basically a labor coach for women) and I would help them write birth plans. One day while in the hospital with my daughter, I realized that I could write what essentially was a hospital plan for her using the same types of thoughts as the birth plans. For birth plans, women want to be as comfortable as they can be and have as much of their individual wishes honored as possible. Why not have that as a hospital patient in general?
With the help of palliative care, we developed the Top Ten List. It incorporates comfort measures, items to always remember to discuss with the team of doctors, and priorities. The team that worked with my daughter was so impressed that they made anonymous copies to help other parents. I have also shared my list with other friends to help make their children’s stays as comfortable as possible.
This is a great way to advocate for your child during hospital stays. This way, the nurses, doctors, and other staff know what is important to you and your child, and you don’t have to feel as though you have to ask for certain things each time. Never ever be afraid to communicate with your team! It helps THEM help YOU!
This is our Top Ten List:
- Our daughter’s comfort is our number one priority, even if her comfort means taking risks that might not otherwise be taken.
- Our daughter is highly anxious about procedures. Controlling her anxiety is key, and then giving her as much control over the situation as possible is very helpful.
- We would like to maintain our daughter’s home schedule as much as possible.
- We are not comfortable taking our daughter home until she is completely back to her baseline.
- It is difficult for our daughter to tolerate any extra medication in her J tube. Whenever possible, we would prefer an IV form, including home antibiotics.
- Whenever possible, we would like to have Palliative Care and Recreational Therapy involved with each inpatient stay.
- As much as possible, we would like for our daughter to be assigned to the same primary nurses who know her best, both her personality and her underlying disease. This will also help ensure continuity of care.
- We would like to avoid unnecessary procedures (nasal swabs, MRSA swabs, etc.) unless it is medically unsafe to do so.
- We would like to know about plans for pain, feeding intolerance, constipation, and nausea/vomiting before any procedures take place.
- We as parents would like to be in the position of comforting our daughter, not helping to hold her still for procedures.
Each item is asked with respect, but firmly states our values and needs. They are to the point, they acknowledge that things are not always possible the way we would like them and that we understand that everything is situational. Her favorite nurses may not always be there, or they may have a full load. Because she is on contract precautions, Recreational Therapy may not always have available staff to send to her each day.
However, by outlining what we feel is important, it helps the staff to keep in mind what is best for our daughter. No patient is the same and giving individual treatment, both medically, and in terms of daily care leads to the best possible quality of life even when staying in the hospital.
While your list will most certainly be different, creating a list of priorities and guidelines for your child’s hospitalization will make a huge difference in the care you receive. You and your child will be more comfortable, and it will be much easier to get the entire team on the same page.