Communication is critical for those affected by a serious medical event or significant condition. The key word here is “affected” as the person who is ill or injured and their family, friends, as well as the medical team are all vested in understanding what is actually happening and how they can help. To that end, there are legal responsibilities; policies that some hospitals put in place and then there is the less understood role of how useful a go between can be for the patient and their caregiver(s).
Health Proxy: This is the designated person who can legally speak on your behalf if you are unable to do so. Up until 18, it's the parents’ responsibility to speak for a minor. Once 18, unless there is a competency issue, it’s up to the person to decide who can speak for them. If you are being admitted to a hospital, you will most likely be asked to name a health proxy.
Hospital Family Spokesperson: Depending on the person’s condition and unit they are admitted to, many ICUs and specialty care units request that a “family spokesperson” be identified. This person, who is not necessarily the health proxy, is the bridge between the medical care team and the patient’s family/friends. This approach not only helps to make sure that consistent and timely information is made available to the family, but it also helps to reduce confusion and keeps the medical team at the patient’s bedside and off the phone
The spokesperson selected should be:
• A good listener and communicator
• Can remain calm in a crisis
• Understands the medical condition and can accurately relay information
• Can take good notes-keeping a medical journal is ideal
• Able to provide information in a timely manner to family and friends
This individual may or may not be an immediate family member. It should be someone the family and patient trust. If you have difficulty in selecting such a person, talk to the social worker at the hospital where the person is receiving their care.
Spokesperson/Liaison: Someone who can accurately report to family and friends about a person’s condition, whether they are in the hospital or at home, can make life a lot easier. Just as in the hospital, this helps to reduce misinformation and minimizes disturbance. Those most directly affected by the situation-the patient and their immediate caregiver-are overwhelmed, so it’s better that someone not quite as close to the situation serve in that capacity.
In our Tweeting culture, people have come to expect immediate information, in 150 characters or less and become frustrated if that doesn’t happen. Fortunately, the free websites that help to coordinate information as well as volunteer support are incredibly easy to use and, if well run, are worth their weight in gold and then some. If you are not familiar with these websites consider some of the following:
I find that co-administered site works quite well. The person and their immediate caregivers can be involved when time and energy permit, while someone who isn’t as closely involved makes sure the site continues to inform and coordinate.
Understand that information is power and it can be a form of control. A person who is ill and secretive can make family and friends crazy and leave a very negative legacy. It’s important to recognize that people do want to help and their inquiries are generally coming from a place of concern. Unfortunately, HIPAA (Health Insurance Accountability Act of 1996) has now filtered out of the medical setting and into the general community, so we are more secretive about ill health then ever before. Ultimately, I think this is doing more harm then good, but that’s a discussion for another day.