For Patients and Professionals, Detailed Thoughts on Diagnosis and Prognosis Discussions — Part One

(Disclosure:  I already accidentally posted an early outline of this blog, and this is very significantly expanded from that listing of questions.  Interestingly, on looking back at it I realized that the earlier posting was written from the clinician point of view alone, although my expertise and legitimacy is as a patient.  I hope this does not mean that I have developed the perspective of the professionals — a salutary warning to myself.  Above all, for all of us,  it should be a reminder that true patient partnering means seeing both as a resource for problem solving and for helping each other think about both the individual situation and broader patterns and solutions.)

As a patient,  and I hope for a clinician too, the first stuff on this is easy:  Patient and (assuming the patient agrees) the family are entitled to the truth; different of us hear hard things best when told in different ways;  the clinician can not force people to know or accept more than they want or are able to do; as patients we need to realize that telling people bad news is hard, particularly for those who have gone into a caring profession in part because of their empathy.

But then it gets harder.  As a patient, family member and friend, I have been involved in too many of these situations, and find myself still not really knowing the answers to these questions.

As a clinician, how would you ensure that you actually have effectively communicated the bad news, and its implications, to patient and family?

When we run educational programs for judges, we emphasize both the risk that litigants have not understood what they have have been ordered to do, and the importance of asking litigants to repeat in their own words what they are to do.  Sometimes it can be hard to do this without being insulting.  The same must surely be true in the medical context, and I have often on my own asked the clinician if I can repeat back, for checking, correction, and addition what I have understood.

Finding ways as a patient to suggest to the clinician after an explanation, how words might have been better used is an important skill, and hard to develop.  Some do provide the information also in writing, and some of us have talked about offering to audio or videotape the explanation and discussion for later review by patient and family.

I am sure that for both “sides” looking together later at that tape would help improve communication and listening skills.  It would be interesting to air such recordings for “mixed” discussion groups.

How do both sides avoid using words that may mean different things to those in different situations?

I can still remember, back in 1977 in England, asking my sister’s melanoma specialist if he had told her , now suffering repeat metastases, that she was dying.  “I have have told her that this is serious.”  I still think that all that means is “you are at risk of of serious impact.”  Often things like that are said by clinicians who do not want to push things down patient’s throats.  OK, but do not comfort yourself as a clinician with the nostrum that “people will hear when they are ready.” Unless you take some responsibility for telling in a way that a person who is “ready,” whatever that means, actually will hear.  Indeed, a recent Washington Post piece by a doctor demonstrates this.  The doctor describes her own failure to follow up when told with respect to possible breast cancer gene risk, “when the person I spoke with told me that my family’s experience with cancer was ‘not clearly hereditary.’ I asked if he was sure, and he affirmed that they had no evidence for a genetic cause for our family’s cancers but that they would inform us if things changed. .  .  [After the discovery of BRA1 and BRA2] [o]bjectivity was overshadowed by denial, and the research institution’s ‘not clearly hereditary’ phrase gave me permission to start a new chapter without caution.  Consideration of a possible cancer predisposition was postponed until further notice.  The vagueness of the phrase ‘not clearly hereditary’ enabled my ‘truthiness.’”

As a general matter, I think that one should never use a word that has a very precise meaning in your context, unless you are certain of the listeners understanding of your context and meaning, without building the repetition by means of more words.  To go back to my first example, “This is serious.  I mean that it could kill you quite quickly, I am very sorry to say.  Lets talk about how to deal with this, I will be with you all the way.”  Or, “This is  serious but many people do live for years with this condition if treated right.”

I wonder how many physicians realize how much we patients can pore over every word later, like teenagers dissecting a date, trying to figure out what was meant, what was not being said, what else the medical staff might know.

As a patient how do you keep yourself open to news, encourage the clinician to give it, be aware of the clinician’s needs, and yet take care of your own needs?

It must be really hard to go from the bedside of a dying patient to tell one not yet there that that is where they are headed.  I would assume that most think you have to try to wash one patent out of your mind so you can focus on the other.  Yet that caries a heavy price, and may still result in a communication that is somehow forced — leading to god knows what miscommunication.  Personally I always ask my doctors how they are doing — particularly when they have been delayed.  On one occasion I got, “I am fine, but not the patient I just saw.”  I am sure it is different for every doctor-patient relationship.

I think that if you know bad news is coming, as many of us do since now more and more that bad news comes in steps, with the earlier numbers sort of predicting the individual ultimate bad result, it is helpful, if you can, to let your doctor know what you are expecting.

Also it is good to remember what a sense of failure most doctors feel in that situation.  Partnering means being present in that together.

What role do numbers play, for whom, and how do we best use them?

As statistics and understanding of statistics become more and more universal, more and more patients ask for, expect, and understand not only probability and averages but standard deviations and confidence levels.  Perhaps better sometimes than the doctor does!

One real skill, it seems to me, is developing a sense of how to couch these matters.  As I told one doctor: “I have always lived and died by numbers, and I will here too.”  Interestingly, she is always telling me not to worry too much about individual short term changes in numbers — itself wise advice.

I suppose one way to find out “number receptivity” is to drop a few numbers into the conversation, watch the patient’s face, and also see how they frame follow-up questions.  It would be an interesting conversation to have among patients and clinicians about what cues to look for in terms of how people prefer to be communicated with.

And generalizing that idea to the whole topic is probably a good note on which to end what has now become only the the first part of a two part series.  Please suggest more questions like this, as well as thoughts on all of them.

To be continued.