The words we use may comfort or shock, allay or provoke, sooth or batter. Words often imply layers of meaning that are not explicitly articulated, yet rest beneath the surface:
“I worry that time is short for you” (You are dying) (I care about you)
“I wish we could have done more” (Nothing would have changed her death) (I am on your side)
“I hope with you that you’ll get better, but I think we should prepare in case things don’t go as we hope” (You are not getting better) (I support your hope)
I can think of no situation in which there is greater variation in how our choice of words varies than how we explain cardiopulmonary resuscitation (CPR). Many people, including me, vary the language we use depending on our recommendation for treatment. Some use more drastic language than others. Here are some examples I have encountered, again with possible implied meanings in parentheses:
“Would you like us to restart your heart if it stopped beating?” (Please say yes) (I’m just asking as a formality)
“Would you like to allow us to let you to die naturally?” (Saying no goes against nature) (We have an unnatural power over life and death)
“Would you like us, in what would naturally be your final moments, to press on your chest and break your ribs, shove a tube down your throat and poke you with needles in lots of places in a chaotic attempt that has a very small chance of giving you more time to be technically alive but unlikely to ever return to meaningful communication with others?” (Please say no) (CPR is horrific) (I don’t want to have to do this to you)
“Do not punctuate the end of your life with a senseless act of brutality!” (You’re crazy if you say you want CPR)
Using persuasion to argue for something we believe is in a patient’s best interest is ethically permissible. Coercion - the use of force or threats – is not. Guy Micco, one of our contributors and a physician ethicist in the East Bay, talked with a philosopher who preferred the terms “influence” and “undue influence.” "Influence" is, of course, permissible - the line not to cross is the “undue” one.
Where do you see the line with these statements? What language do you use? Do you find yourself varying the language you use based on your recommendation for or against CPR? Does “unbiased” language exist?
13 comments:
Nicely put...I use lots of those statements depending on the situation. It is almost impossible to find truly neutral language - I usually try to create a sense of "neutrality" by starting out "most people tend to prefer something like..."
But I find that where I work the vast majority of patients and families care less about neutrality and are looking for guidance. Indeed the word "neutrality" implies that you are standing between 2 sides, when in reality there are many, many choices for patients. It's my job - indeed duty - to give them my expert opinion, explain why I think what I do, let them voice out their questions and concerns, and respect their choices in the end.
I've long felt that it's OK, even preferable, to paint a realistic picture of what CPR actually entails rather than use simple euphemisms that can obscure that realism.
So, a question like, "If your heart stops, do you want us to press on your chest?" accompanied by the gesture simulating chest compressions, though perhaps a bit more gently than actual practice, meets the criteria that Guy sets out.
So, too, with the question, "If your heart's rhythm becomes unstable, do you want us to try using electric shocks to see if we can bring it back to normal?"
The same goes for intubation and lining - language that's real, but not frighteningly surreal.
But ultimately, I think, the best language is based on whatever trusting relationship can be/has been established, and includes some variation on the question, "What's important to you?"
I do think that it is fascinating that we freely use the framing effect to persuade people of the 'right' medical decision to make, but when patients ask us what we would choose, we shrug our shoulders and tell them it is really their decision.
A clear, open, and honest recommendation to patients about what we think would be best to meet their goals and values seems the most reasonable and ethical way to go about this, rather than hiding our recommendations in colorful language.
I appreciate Eric's and Ori's perspectives, and think that there's a consensus emerging - namely for honesty and clarity in the context of the patient's and family's needs and understanding.
I think another of Alex's posts, On Teaching EKG's and Family Meetings, and the piece by Quill provides essential guidance.
I recently had a complicated and challenging situation involving a patient who had dementia but his ability to make decisions was not entirely clear, and truly varied based on moments of clarity and the complexity of the situation. His family and I reviewed his advanced directive and he said "I think if something can be done to save me then it should be done. But if I'm a goner then forget about it." Eventually his POLST was signed stated Do Resuscitate.
Two months later he had a sudden onset of undiagnosable pain that in order to be managed required analgesia that kept him sedated. It became clear he was in his final days. I was back on the phone with long distant family members, offering education and emotional support. And once again we were discussing code status.
That family really struggled to decide, but eventually made him DNR. I felt this heavy responsibility to guide them to that decision while also wanting for it to not feel like coercion. We discussed how CPR would no longer give their loved on a chance to be saved, which was the language he had used. I explained the difference between a peaceful passing with no CPR vs. the staff at the facility being required to do a code. Every word that came out of my mouth I questioned how I worded it. I still wonder how I could have been more graceful and articulate.
I frequently find these difficult conversations with patients and families are like live stepping through an overgrown wild forest.
A thorn bush over there, a clearing to my left. A shaft of light breaks through- then darkens. Rarely, I will twist my ankle(damn!)Occasionally I will panic and feel lost. More often I can take the hand of the other and walk into a less overgrown area where we can sit and breathe a bit more easily. Whew!
I really enjoyed this post - always looking for creative ways to teach eol conversations, incl. CPR - think I'll use some of these scripts & ask the housestaff to fill in what could go in the parentheses ... re CPR - there is an interesting article on this, Point/Counterpoint Chest 2007;132, which I have found helpful in teaching & practice; see also Clayton, et al., Med J Aus Suppl Vol. 186, No. 12, 2007 which gives scripts one can try out, and modify with experience. I agree several articles by Back, Arnold, Quill have also been very helpful. The influence/undue influence and trust-relationship vs autonomy issues are worthy of reflection. Paul McIntyre
Alex, great post!
To answer your questions:
"Where do you see the line with these statements?" I love the "influence"/"under influence line", it is sufficiently vague that I can sleep at night regardless of what I say
What language do you use? I use the 'allow natural death' language but it never feels right - seems like it has a built in coercion. Who am I to say what a "natural death" is? I'm not god.
Do you find yourself varying the language you use based on your recommendation for or against CPR? No, given that the societal default is CPR, I have never had to recommend for CPR.
Does “unbiased” language exist? The intent underlying language can definitely be unbiased - whether the language is unbiased, I don't know.
I agree that language is important but there is a downside on focusing too much on words and it has to do with trainees. If we are constantly correcting trainees on the words they use, we may create a generation of doctors even more scared to talk about difficult subjects with patients. Communicating in advanced illness is extremely difficult, you have an involuntary communication scenario with a historical power structure (doctor/patient) with one party being extremely ill. I always tell medical students that it is inevitable that at some point, you will say something wrong to a patient. I then tell them that the key is not what you say, it's what you say next. I remind them that we are all human but that you should commit to the clarification.
Summary: our intent should be unbiased, our language will likely be biased, and we should be committed to the clarification requied.
All of these comments are obviously from PC/Geri Practitioners who have put much thought into communicating with their patients.
Unfortunately, I often am trying to help patients who don't have the benefit of this kind of guideance. When you are in a large teaching hospital after hours, as a nurse, you find MD's who are unprepared and unwilling to even broach these conversations.
I have repeatedly heard an MD ask a patient when deciding if they should intubate and go to ICU: "Do You Want To Live?"
It's a rare thing to have a dyspeic patient say "no..."
I see a terrible lack of taking responsibility for years of education and experience by giving any recommendations: "What do YOU Want to do?" instead of giving an opinion on what's happening and exploring what the patient would have wanted or wants if they can talk...
The key would be having these conversations long before the drama ensues. But it's just not happening very much still...
I know I'm just preaching to the choir here, but the entire focus of the discussion should be the patient's values and how they view the end of his or her life. To describe the brutality of a code in the hopes that someone will agree to a DNR status may be effective, but sounds like coercion to me.
Say you have a young healthy mom who needs a C-section. Would you describe the surgery to her as slicing her open, burning any bleeding blood vessels that you see along the way, then slicing open her uterus, pushing on her chest and abdomen to pull her baby out of her, etc etc? Unlikely. You'd put it in perspective of the goal of getting the baby out safely. The details of the procedure are secondary to the goals.
A discussion about the patient's values at the end of life would obviate the need for many of these difficult discussions. Focus on the goals, and forget the details.
I follow the school of Dr. Weiss. After all, we are the experts in this field. If we think solely of the medical benefit versus risks of pursuing resuscitation then we should be able to give a recommendation. We all know that CPR, for example, was not meant for a 92 y/o end stage Alzheimer's patient without a meaningful chance of recovery! I feel very comfortable giving my recommendation in any given situation but let the family know that I respect their wishes if they choose different than my recommendations. Some families have a difficult time and may choose an outcome for their family that we wouldn't choose for ours. That is why we must take a deep breath and go home (shameful plug for my new blog entry).
TA makes an important point - "To describe the brutality of a code in the hopes that someone will agree to a DNR status may be effective, but sounds like coercion to me."
The key phrase here is "in the hopes that..." because it raises the notion of intent. The question, "What am I trying to accomplish?" is an important one in this context, as is the question, "Whose needs are being met?"
To use the C-section example (an example which, to me, runs the risk of establishing a false equivalency) - patients have a fundamental right to giving an informed consent.
So, yes, effectively conveying the risks of the procedure is basic ethical conduct.
It's also essential to convey them in a manner suited to the context of the event - a calm discussion during a prenatal office visit is not the same as a life/death ED situation.
Discussions should certainly be based on goals - no argument here.
But I think anybody who ignores the details is skating on very thin ice.
I have recently (over the last year) encountered several physicians who appear to be guiding all patients toward CPR. When patients have a living will or are making the decision, if they state they don't want to be on a "breathing machine", physicians are flat out promising them that it will "only be for a few days" or "it won't be forever". When someone is mechanically ventilated no one knows how long they will require such support or if they will EVER be able to be successfully extubated. This then puts an unnecessary strain on family members to have to decide when or if to discontinue life support. It seems to me that more often than not, physicians are disregarding the patients choice and talking them into what they (the physician) would want. To me, this is coercion too.
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