Imagine you take your car to the shop, it’s a good old car but lately it’s been stalling out occasionally, the check engine light comes on; something just isn’t right.
The mechanic looks it over and tells you, it’s complicated, but he can fix it. He gives you a list of repairs, some items you recognize and nod your head at, trying to appear knowledgeable, other items on the list seem big and ominous, but he reassures you with a calm smile and says, “trust me, it’ll all be okay, we’ll get you through this.”
When you pick up your car the mechanic warns you: “you’ll have to check the oil frequently, bring it in if the check-engine light comes back on and it would be best not to make long trips in hot weather. She’ll keep going at least for a bit.” You look at him doubtfully, that wasn’t what you signed up for, but you take the keys and you drive off.
That first week you break down twice and have to have it towed back to the shop. The repair bills are not covered by any warranty or insurance and they’re substantial, but it’s worth it, you love this car! By the end of the week the check engine light is on, there are flames rising from the hood and you are stranded waiting for rescue; the car isn’t going to make it.
You call your mechanic, irate on the phone, and he empathizes with you and tells you how sorry he is, but explains he did as you asked, he didn’t want to destroy your hope, so he tried and did what could be done. Would you accept that answer? Would any of this seem acceptable to you? Honestly – in car repair would this have ever really played out this way?
Variations on this very scenario play out time and time again in healthcare. They may not seem acceptable to us, especially in retrospect, but we let them play out.
At some point in the car scenario you would have stopped the mechanic, examined the itemized list of repairs and questioned if it made sense to put so much into an older car which clearly was nearing the end of its life. You might have asked where the compromises were to keep it going for a bit longer, perhaps until you could find another vehicle to purchase.
You have the expectation that once repairs were done, driving it would be to the same standard it had been before the issues started. If this wasn’t the standard to which it could be repaired, one would expect to be informed, up front.
We go to the doctor searching for a diagnosis and the list of needed medications and procedures with the expectation that once these are done we can return to life as it was before. The doctors, pressured by their own desire to not fail our hopes and expectations as we sit in front of them, offer us a list of repairs, which can be done to extend the longevity of these bodies. We nod, often overwhelmed and trying to appear strong and knowledgeable in the face of difficult news about the status of our bodies, often in a state of relative denial as well.
We don’t want to let go of our expectation that life, as it was, can go on. So often we agree to the plan of care offered without a true understanding of what it means to us in its delivery or its effects on life to come. There is often little-to-no discussion of the goals of care.
With those vital conversations swept under the rug we forge forward on a path that will potentially, leave us feeling misled, misinformed, cheated, and far from where we allowed ourselves in hope to believe we would be.
In the realm of motor-vehicle repair, we’d quickly cross a line into calling the lack of this discussion and clear communication – negligence. Careful though – whose responsibility was it? The owner knew the car was older and having issues and the mechanic knew it too – but both forged ahead without asking the obvious questions or tackling the more difficult questions – so it is not so easy to lay the blame on any party.
In the realm of healthcare, there’s this tricky little thing where clinicians don’t like to upset patients, thereby, when the patient doesn’t bring up such discussions, often clinicians won’t either. It’s still a zero-sum game – there’s rarely a malevolent reason behind not bringing up the elephant in the room, but the lack of these goals of care conversations can be absolutely devastating, and the devastation affects all sides, the patients and families and even the providers.
Sometimes “doing everything” just results in prolonged time of suffering, break-downs, frustration, overheating, tow-trucks and ambulances taking us back to the place that was supposed to have repaired us and returned us to life as it was before. Sometimes doing everything is negligent, but that negligence usually takes two participating parties to achieve.
Goals of care discussions are collaborative acknowledgements that doctors and are experts in their field, but they work on human beings. The human beings they work on are the experts in what is quality for them, what treatments are right and what they are willing to go through to continue this life. It is only the patient who can decide for themselves where and when they’re willing to let go.
What we need is to work together collaboratively, to understand the situations we are in, what can be done and what it means to do it, what life during and after treatments might look like, and where it might make the most sense to grab the keys one last time and take that last ride into the sunset.