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If you really want to help a family facing a sudden medical crisis go ahead and step up. Volunteer to be their medical accompanier, a role of crucial importance.
An effective medical accompanier will attend appointments with the patient and quietly take notes – a fly on the wall with a steno pad. Notes will be taken and the information they contain will be promptly and accurately conveyed to the family. Having some tissues on hand is a nice gesture as well. Rides home are useful – and so too is a stop along the way for a cup of tea or coffee.
You may ask permission of a doctor to record the consultation in audio format. Medical professionals will have different positions on this. Requests to record may result in information being delivered in a too comprehensive or overly legalistic way. This may be inadvertently overwhelming. For this reason, it may be advisable to stick with pen and paper. However, each situation is different and some doctors are perfectly comfortable with this tool.
A medical accompanier is a caring, calm and compassionate companion. This person may be once removed from the family. This can be beneficial as it enables a level of objectivity that those directly involved may lack.
Families who face a serious diagnosis must pivot quickly from the normal day-to-day to red alert crisis response. Following a serious diagnosis, families must gather medical information, meet with medical specialists, and decide about a course of treatment.
It is entirely too much information. There is too much fear and uncertainty to tease apart these threads. Sterile medical details are often obscured by human fears and a real terror of loss. Patients sit with doctors in consultation rooms. Still, they struggle to focus on the often frightening (and always technical) medical information coming at them – staccato and rapid fire. More typically, a mother (for example) will ponder her own mortality. Journalist Marjorie Williams (who died of cancer) poignantly wrote about her battle.
“Who will talk to my darling girl when she gets her period? Will my son sustain that sweet enthusiasm that he seems to beam most often at me? There are days I can’t look at them – literally, not a single time – without wondering what it would do to them to grow up without a mother. What if they can’t remember what I was like? What if they remember and grieve all the time?”
These questions – both urgent and intangible – are really those that swirl more in the consultation rooms following very bad news.
To compensate for this fact, the medical accompanier stays tight on facts. S/he is tasked with attending medical appointments with the patients, parents, or spouses.
We all know that questions always occur after the fact. As well, in an era of managed care, reaching a doctor for additional information/clarification is often stressful. It is cumbersome and difficult.
An effective medical accompanier will not ask questions.
They will not express an opinion.
Rather, they will write down the details of what is said in the consultation. This will enable the family to consider options and develop treatment plans.
Keeping track of “details” such as side effects and variable prognoses is very difficult in the immediate traumatic aftermath of diagnosis. Traumatic memory is a bear.
I myself have been on the patient end of potentially very bad news. I could not focus well on what was being said to me. I urgently needed my friend Allison to sit there and take notes. In so doing, she recorded accurately my treatment options. This permitted my husband to stay home with our two-year-old. (This was as normal as it was possible to be then.)
To Allison it seemed a small thing. However, to me it remains a memorably great and generous gift.