Several years ago my mother-in-law was hospitalized with severe pneumonia. She was very ill, her condition was unstable, and the doctors began to suspect an underlying respiratory condition. There were multiple specialists involved and it was nearly impossible to get information. I requested a family meeting, during which I asked several questions regarding her care. While I was speaking my sister-in-law saw one of the doctors write the words “high maintenance” on a piece of paper and show it to one of her colleagues sitting next to her.
Patients and family members who are felt to be demanding are often labeled “high maintenance” by medical professionals. This term is sometimes used to describe people who are abrasive and rude, but it is also used to describe individuals who advocate for themselves and their family members. I can honestly say that I was not rude or abrasive during the family meeting. I started by providing a summary of my mother-in-law’s medical history, focusing on the breathing problems she had experienced in the past. I then asked what tests had been done and inquired about the results. I asked for a list of the medications they were giving her. I asked for the working diagnosis, as they had no idea what was wrong and were quite baffled by her lack of improvement. Finally, I asked if she should be transferred to a larger academic hospital.
At the conclusion of the family meeting the team informed us they would consult a lung specialist, who performed a few additional tests and ultimately figured out what was wrong. Thankfully, after several days she began to improve and was discharged from the hospital a couple of weeks later. I’m glad I was “high maintenance”. Who knows what would have happened if I had not spoken up?
You may be saying, “Well that’s great, Dr. Rochester. You’re a physician. What is someone like me supposed to do in that situation?” It definitely helped that I had a medical degree and that I could speak the lingo, but this is one of the key reasons I founded Your GPS Doc, LLC—to help others navigate these difficult situations.
You don’t have to be in the medical field to advocate for appropriate health care. Click To Tweet
If you or a family member is hospitalized, you must be an active member of the medical team. Click To Tweet
Here are a few tips for how to be a “high maintenance” caregiver:
- Ask questions! It’s that simple. If you don’t understand the answers, request that the physicians explain it to you in lay terms. Don’t be intimidated by healthcare professionals. Most are very busy, but want to help.
- Ask for written materials, such as brochures or flyers. This information can be useful to review after you’ve left the appointment/hospital room/Emergency Department.
- Make sure that the team has an accurate understanding of your family member’s medical history. You’d be surprised how often details are omitted or documented incorrectly, especially if the patient is unconscious, has dementia, or is otherwise unable to effectively communicate their medical history.
- Get the name and phone number of the physician leading the team so you can contact him/her if you have additional questions. Give the nurse your phone number and ask to be contacted for any significant changes or concerns.
- Visit frequently and make a note of changes in your loved one’s condition. When you arrive, request to speak to the nurse for an update. Take notes whenever you speak to a member of the healthcare team. Ask questions to clarify anything you don’t understand.
- If the condition being treated is complicated and/or there are multiple specialists involved, it is helpful to request a family meeting. Ideally, this will give you an opportunity to meet with all of the members of the medical team to discuss the care plan and to ask questions. For more information about how to arrange family meetings, check out these two articles: The Family Meeting: Part 1 and The Family Meeting Part 2: How to Prepare.
When you partner with the medical team, you improve the care you or your loved one receives. If that’s “high maintenance”, then I’ll gladly accept that label. I bet you will too.
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Great article! I believe in being appropriately “high maintenance”. A HM approach, with sincerity and not to offend, has definitely helped encourage a deeper dive into my concerns with testing to aid in the diagnosis of a condition.
Thank you for your comment. It’s so important that we advocate for ourselves and for our family members who are not able to articulate their concerns.