Remember – What You Say Matters!
If you are a parent of a child with a rare, chronic illness, you generally find yourself in the position of advocating for that child in medical situations. If the child is capable of advocating for himself or herself, by all means allow them to speak directly to the doctor about their medical issues. This is both good practice for the child and can protect the parents against overmedicalization concerns. If the child cannot take on that role, the parent must speak for the child, which requires great care and consideration.
As a parent, you know your child better than anyone else in the world. If you feel that your child is not getting adequate medical care or needs to start or stop a specific intervention, you need to make that known. Trust your gut instinct and do not be afraid to speak up. As discussed in more depth below, it is important to gather your evidence and keep your calm when discussing such important issues with your child’s care team.
If you find yourself clashing with a specific medical provider, be sure to pull in another trusted voice. Ideally, this would be the Mito specialist or a primary care provider who has known the child and the situation for a long time. Sometimes, allowing the other parent or a highly involved relative to take the reins can be sufficient to defuse a situation. Another option is to call in the hospital ombudsman, who can act as a mediator for different types of conflicts. At no point should you threaten, intimidate, use foul language or make accusations against the medical provider. While the stress of certain medical situations is undeniable, such behavior reflects poorly on the family and can come back to haunt the parents later. If you run into conflicts with multiple staff members, it might be worth consulting with an advocate or social worker to consider whether there is something in your own communication methods that can be improved upon.
Documents speak louder than words in most cases, especially where medical questions are concerned. As discussed in the Medical Records section of the Mito Navigator, keeping a copy of your medical records is one of the best ways you can protect yourself and your family. Be sure to separate out the records that documented or formed the basis for certain medical decisions and keep those handy. Refer to these key documents should issues arise during an appointment or a hospitalization.
How You Say It Matters Just As Much!
The old adage “you can catch more flies with honey than with vinegar” applies well to advocating on behalf of a child with a rare disease. Parents with a chronically ill child are under a good deal of stress, and sometimes this stress leads to irritation or aggravation when protocols are not followed or new decisions are made without consulting the specialists. Keep in mind that a level head and calm demeanor go much further in times of stress and frustration.
Unintentional vs. Intentional Exaggeration
Unintentional exaggeration happens with relative frequency in the medical world. For example, a parent may state to the child’s doctor that the child had a “high fever” with a temperature of 101.2 degrees Fahrenheit, whereas the child’s doctor might only consider a high fever to be over 103 degrees Fahrenheit. Similarly, a patient may claim to have a hyper-mobility syndrome which, upon examination, turns out not to be the case. Such situations happen regularly in medical practice and often are taken in stride by medical professionals. As described above, frequent reference to select and important medical records is the best way to ensure that you are not misrepresenting symptoms or findings in the patient’s history.
When patients and parents are desperate for a diagnosis or treatment for themselves or for their child, however, they sometimes may intentionally exaggerate symptoms or medical issues out of fear that they may not otherwise receive the help they believe is needed. For example, a parent may state to a Mito specialist that the child is having seizures, but a subsequent conversation between the Mito specialist and neurologist indicates that she is not, or a patient may represent that the gastroenterologist instructed them to go off of a medication when that was not the case at all. Such misrepresentation is done with no intent to cause harm to themselves or to their child, but it is misrepresentation nonetheless and has a strong impact on the patient or family’s trust relationship with the medical providers.
Suspicions of Medical Child Abuse sometimes arise when parents mislead medical professionals regarding diagnosis, previous treatments, symptoms, or involvement of other medical professionals, even if the parents harbored no intention of harming their child. It is therefore essential for parents to keep good records and convey accurate information to every medical provider at all times, for exaggeration (especially when intentional) can lead to far more significant problems if Medical Child Abuse allegations are later brought against the family.
Advocating Tips provided by Johna and the Whale Foundation
- Never go to a doctor appointment alone.
- Have the person going with you take notes on what is being discussed and who is in the room.
- Never report the events of a previous doctor appointment. Instead ask the physician at hand to contact the previous doctor for a better understanding.
- If possible, encourage your child to talk to the doctor about what he or she is experiencing and how often they experience it, to the best of their physical and mental ability.
- When your child is in the hospital do your best to have others stay with your child periodically and have them take notes on everything that occurs while there.
- If your child’s disability and/or disease is in question, always refer to it as suspected and NOT diagnosed. Better yet, if there is any question, do not answer. Instead refer the doctor to the physician or facility that brought it to your attention. (It is the physician’s responsibility to clarify and confirm-NOT YOURS!
Protect Your Family
- Never make a major medical decision about your child without the presence of your spouse, family member or even a trusted friend.
- Always require copies of any written appointment report (it is your legal right). Review and make any corrections necessary to discrepancies that you observe in the report. Contact the office or facility and ask that the corrections be made immediately and a new report rendered so as to prevent a cascade effect of miscommunication between physicians and/or parents.
- Do your best to involve third parties in your home life either through friends, neighbors, or even agencies to ensure that you have others observing the reported symptoms in your child.
- Never be the only one caring for your child! Encourage your spouse to be more involved, and if a spouse is not an option, turn to friends, extended family, or even your local church.