After brain injury, many family members meet with a variety of healthcare professionals. Families often have many questions about what treatments their loved one needs, how much and how fast the survivor will get better, and what the survivor is able or unable to do. Family members often hear different or conflicting advice from healthcare professionals. Differences in opinions and advice can leave families feeling even more confused and distressed.
Here are some scenarios that might sound familiar to you:
Mrs. Surrey: The surgeon told me that most neurological recovery will mostly occur in the next six months. The psychologist told me that she’d seen people improve for as long as 15 years after their injury.
Mr. Best: His doctor told me he needs at least three more weeks of inpatient rehabilitation. The social worker told me yesterday that our daughter will be discharged in two days.
Mr. Stern: The neuropsychologist told me there was no way he would be able to work for another year. The vocational counselor told me that they’d have him back at his old job within three months.
Mr. Davis: The physiatrist said that my son should be able to drive within a couple of weeks. The occupational therapist said he needs special driver’s training. She said that training couldn’t guarantee that he’d ever be safe on the road. He can’t work or live by himself if he can’t drive.
Ms. Renton: The specialist told us they could operate and fix the ringing in his ears. Our family doctor told me not to bother because that surgery never works.
There are a number of reasons why advice from healthcare professionals can seem contradictory.
First, the science of rehabilitation and recovery is not as advanced as other fields in medical science. Professionals may not have scientific information on which to base their opinions.
Second, no two brain injuries are exactly alike. Level of progress can be affected by a number of things including age, motivation, injury location and severity, access to services, physical health, and mood.
Third, professionals in the same discipline may have different experience, training, and preferred techniques. For example, a therapist with traditional training may believe that she has “run out of treatment options.” A newly hired therapist just out of school may see more possibilities and have a lot of ideas for new, different, and more “aggressive” treatments.
Fourth, professionals vary in their philosophies and how they view medical information about your loved one’s brain injury. Some are deliberately optimistic, hoping that patients will do better. Others are very pessimistic, believing that one must prepare for the worst. Some prefer not to be wrong and decline to offer information about recovery.
Finally, professionals may develop different opinions when they observe the patient’s behavior in different settings. A physical therapist in the inpatient setting may see the patient as a highly competent walker when navigating the hospital grounds. Another physical therapist may see the patient as far less competent after observing much stumbling and falling during a visit to a nearby shopping mall.
In summary, family members often hear different professionals expressing different opinions about the same patient. Contradictory information from professionals can lead family members to be upset and confused. Know that you can use several strategies to help you sort out different opinions.
First, let professionals know when you’ve been offered different opinions and how you feel about the inconsistencies. Most will make an effort to explain their point of view and the basis for their opinion.
Second, talk with the each person who offers an opinion. Get a sense of their training, philosophies, experience with the patient, and the information they are using to form their opinion. Understanding why professionals have different opinions will help you sort out their different recommendations
Third, be an effective communicator. You may be getting different information from different professionals because you’ve asked your questions differently or given people different background information. What can you do?
- Give professionals detailed information about your situation and the person with the injury.
- Keep a copy of medical records with you to ensure that health professionals are looking at the most up-to-date and consistent information.
- Let professionals know what’s special or unusual about your situation and the person with the injury.
- Explain yourself and make certain that your questions are properly understood.
- Paraphrase responses you get to make certain that you understand what you’re being told.
- Make sure that you give each professional a fair chance to explain themselves. Asking questions of people “on the run” can get you incorrect or incomplete responses.
Fourth, encourage information sharing and discussion between professionals who offer different opinions to correct misinformation and help resolve inconsistencies. Whenever practical, involve yourself and your injured family member in their discussions to better understand and appreciate the opinions offered.
Though you may feel frustrated, try your best not to react in anger when you hear different opinions. Keep in mind, most professionals offer opinions to try to be helpful. Directing anger toward them probably won’t help you or the patient. Some families have found it helpful to consider all opinions as potential outcomes or best and worse care scenarios.
From the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Reprinted with permission. www.neuro.pmr.vcu.edu.
Jeffrey Kreutzer, PhD, Jeffrey Kreutzer, PhD is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University, Medical College of Virginia Campus, and professor of Neurosurgery and Psychiatry. He is director of Virginia's Traumatic Brain Injury Model System.
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