When my mother was recently diagnosed with COPD, I thought I could help her. We had worked on the gold-standard treatment for a decade, knew the data, the leading clinicians in the field and the course of the disease. However, knowing the answers is one thing, effectively communicating them to a parent is quite another.
Two main hurdles hadn’t occurred to me. Forgive my sweeping generalisations, but I think these may apply to a lot of people of her generation.
Firstly, she has entrenched, hierarchical viewpoints when it comes to receiving health information, namely:
- Whatever I say is of no consequence—I am not a medic, I’m her child.
- Whatever the nurse says is of no relevance—she is “insolent” and shares anecdotes about her own mother’s illness, which is “inappropriate.”
- Despite having a “machine” (MacBook Air), searching the web for relevant information, tools or support doesn’t occur to her.
- Whatever the doctor says is sacrosanct (hierarchy is everything), but she’s unlikely to remember it.
Secondly, obtaining an accurate account of what had been discussed during her many consultations was almost impossible. Precise questions such as, “Ask them to give you your FEV score” were met with vague responses: “They wouldn’t give it to me, they said they think it’s that thing—emphysema—they explained what the blood tests were for but I can’t remember what they said,” etc., etc.
Trying to interpret patchy feedback from the consultations was frustrating, especially when it was further confused by her misconceptions. At one stage, she said they thought it was asthma, but this was an assumption she had made because they had prescribed an inhaler which she equates with asthma. My mother is an intelligent woman—it’s just hard to listen and remember everything when you are scared and confused. And the more I speak with her, the more evident it is that she doesn’t understand the disease or the need for treatment: “I’m going to go back and find out just how long they expect me to use this medicine” and “What happens if I don’t take it?”
I spend my working week devising new, innovative ways of communicating health messages to patients—via the media, apps, crowd-sourcing communities, videos, Vine, Twitter—you name it, we’ve done it, but what I’ve learned from this personal experience is that sometimes there is no substitute for clear advice provided directly by an HCP.
What my mother needs is a consultation with a doctor in which he or she clearly explains:
- The disease
- The role of treatment
- The consequences of nonadherence
- The outlook
All could be covered in a short conversation, but this needs to be given by the doctor and backed up with written information.
My final thought is, wouldn’t it be great if there was a network of impartial adults—call them consultation buddies—available to accompany people to their healthcare consultations and take notes on their behalf? Not to aid diagnosis, but to aid understanding by capturing the relevant information in written form.
If anyone is interested in starting a consultation buddy business, call me!
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