An email from Helen, a soon-to-be independent advocate, posed this question to me:
When I read the codes of ethics and best practices for advocates, I am clear that we can’t make decisions for clients. But how can I give them advice without sounding like I’m making a decision for them? Example: they asked me to find a neuro-oncologist for them. So I did. But now it seems like I was deciding which doctor they should see – making that decision for them?
Helen’s question is fair and good. It also points out a thin line we sometimes walk as advocates and care managers. And, it’s an opportunity to examine some nuance.
Nuance – as in, figuring out what we can and cannot give advice for. What we need to avoid is the impropriety of making any medical decisions for clients. We need to avoid any suggestion that we advise a client to choose one treatment over another, for example. The way I draw the line is to ask myself whether my advice would affect a medical outcome, positive or negative. Suggesting (advice) we make a doctor appointment for an early afternoon won’t affect an outcome except as it affects how long we might sit in the waiting room. Suggesting (advice) that my client choose to participate in a clinical trial will most definitely affect his outcome.
Those who have worked in clinical professions previous to their advocacy sometimes struggle with this. Doctors, in particular, have been well-trained in the advice-giving arena. Many don’t know how to conduct their practice in any other way! But – important! – if you are a former clinician, or your previous profession has been an advice-giving profession, you need to learn not to do so (unless you continue to pay for your clinical license and insurance.)
Sometimes that line is so thin it’s difficult to tell whether it will have an impact on a medical outcome. The question about finding specific specialists is an example. If you can find only one doctor in a specialty area for your client, then you aren’t really giving them a decision to make.* So let’s look at the request a few different ways – more nuance.
Any specialty has at least dozens, if not hundreds of professionals who work in that specialty. What’s limited is not a specialist’s existence. The limitation is usually on accessibility. A client who lives in a rural area of Missouri won’t have the same geographic access to a specialist as one who lives in San Francisco or Houston or Boston, for example.
So the nuance to the situation is this: You’ll need to clarify with your client whether he/she only wants to limit geography. Your advice can be that they expand their willingness to travel, or even be seen by video / telehealth.
“If you were me, what would you do?”
And then there is the situation of a client who, when faced with a difficult decision and few options, turns to you and says, “If you were me, what would you do? Which choice would you make?”
Providing a specific answer to that question is most definitely crossing the line. There’s no nuance there. It’s a major no-no.
However! That’s what you can pull this little gem out of your response quiver: “Consider this…” Examples:
“Consider this, Mrs. Smith. If you see Dr. LivesNearby you won’t be able to get in to see him for almost four months. But if you are eager to get some answers sooner, we can get an appointment with the neuro-oncologist in Timbuktu through video telehealth week-after-next.”
— or —
“Consider this, Mr. Jones. If you choose to begin chemo right away, it will be completed before your daughter’s wedding. On the other hand, if you wait until after her wedding is over, your condition may worsen and become tougher to treat. Why don’t we ask your oncologist how a delay would change your odds of success?”
By using “consider this” you have not made a decision. You have not crossed the line. You are providing your client with information he or she may be able to use to make their own decision.
My last advice around this sort of thin-line situation is (consider this!) – to recognize the danger of crossing the line, and therefore the utility of “consider this.” Should you actually offer advice (or just as bad, should your client believe you are offering advice even if you would not describe it that way) – you could be endangering their health, and your practice and reputation as an ethical advocate. Neither is useful to you OR to future clients.
So – consider this! Now you have a new tool for preventing impropriety and making sure your client gets what he/she needs.
*Whenever you need to help a client find the right doctor, the best practice is to offer at least two or three names, with some basic information about them, and let them choose their preference with no coaching from you. You can absolutely include possibilities that are outside the patient’s local geographic area with notations about how an appointment would be attended (travel, telehealth, other?) Then have them document their choice by circling the name on a slip of paper with their own signature, or sending you an email. That covers you should anyone ever question who chose a specific doctor.
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