Walter F Baile, M.D.
Professor, Behavioral Science
The University of Texas M. D. Anderson Cancer Center
Dr. Baile:
Genetic counseling
is a very specialized component of oncology practice and today more
oncologists and more primary care physicians are being asked about it.
In the first scenario, the physician agrees to make a referral, but
it's important to note that he does not promise that the referral
center will do a blood test. As with any referral we make, we don't
usually try to anticipate what the specialist in question will say or
do.
Doctor:
Now, I as a family practitioner I don't
know the full details about this kind of thing, but there is somebody
in the center where we can actually get some really up to the minute
answers. The Cancer Risk Assessment Center, it's at least an hour and a
half journey, it's a long way away, but it's worth it because they will
talk to you about your family history and about whether a genetic test
will help or will not help work out whether you are already at
increased risk or not.
Dr. Baile:
The physician did outline some of the things that the center would do.
He could have been more specific in signaling Mrs. Kemp that she would
be asked a lot of questions about her family history, so she could have
been better prepared. In these interviews the genetics counselor used
two side-by-side strategies. She addressed the cognitive or
informational aspects of the interview while at the same time
monitoring the emotional content. Now, it's important that she
addressed Mrs. Kemp's knowledge of the testing at the very beginning.
This is a good way of synchronizing with your patient as it
acknowledges her part in the interaction and enables you to begin at
her point of information and knowledge.
Counselor:
The other thing I'd like to ask you is to tell me a little bit about
what you know about the cancers in your family and your perceptions of
risk for developing cancer. If I were to ask you what you thought your
risk for developing breast cancer was in your lifetime, what kind of
number would you put on that? Okay tell me so I have a better
understanding what, what do you know and understand about testing?
Dr. Baile:
In the pre-testing
phase the counselor uses charts and diagrams to explain the findings
from the pedigree analysis. She also signposts important information
and is careful not to use jargon in her explanations. These are all
very effective techniques well known to educators and I think easily
adopted in clinical situations where we are actually teaching.
Counselor:
...So for example if you look at
this family over here this is what we call sporadic cancers. You may
see several cases of cancer. Usually that cancer is in one or a few
affected relatives, you see several different kinds of cancer and
usually people get cancer later in life.
Dr. Baile:
Another important
aspect of these interviews is the explanation of the risks and benefits
as well as the possible test results before the testing actually takes
place.
Counselor:
Let me go through some of the answers
that we might get if, if you were to be tested and what each of those
answers might mean, okay? A lot of people think with this kind of test
that you are going to get a definitive answer back that it's going to
give you for example if you are feeling a little tired and sluggish and
you go see your doctor and say you think you are anemic, he can run a
test and pretty definitely tell you whether you are or aren't. And
unfortunately genetic testing is a wonderful tool, but it's very new
and we can't always do that.
Mrs. Kemp:
Okay.
Counselor:
There are three answers potentially
that you have to try to think about how you would react to those and
how that information might then be helpful for you in making decisions
about your health.
Dr. Baile:
This is critically important for genetic testing as misconceptions
abound as to what the results mean. So, it's important for people to
understand that having the gene is not definitive. Someone who
misunderstands that could actually forego important preventive
screening if he or she feels they are somehow immune by not having a
gene or on the other hand to feel doomed if they do. So that's
critically important, as is the issue of what can be done if there is a
positive test. Now those things are part of the informational content.
Let's look a little closer at the emotional content. We saw here that
this counselor paid a great deal of attention to how Mrs. Kemp was
reacting. She began the meeting by exploring the client's motive for
seeking testing and found out that there was indeed an emotional
trigger.
Mrs. Kemp:
Well, my mother she died of cancer.
It was believed to be ovarian cancer, but nobody really knew for sure
and then in this past year my sister was diagnosed with breast cancer
and so now I feel like I am at risk especially because of my sister's
breast cancer. You hear so much about that being hereditary and that
with my mother's cancer as well now I am not sure what is in store for
me.
Dr. Baile:
I noticed also that this counselor was especially sensitive in
introducing the idea of family coping without seeming critical of Mrs.
Kemp's sister.
Counselor:
So some people cope by getting more
knowledge and the more they know, the better that makes them feel about
dealing with their health, their life whereas other people tend to cope
more by what we call blunting. They don't want to know and don't want
to talk about it. So, how your family actually looks at cancer, how
they think about cancer and how it's even discussed within the family,
has implications for decisions you might make about whether or not
testing is right for you and your family.
Dr. Baile:
Having identified
that it would be a potential benefit for the client's sister to be
tested, the counselor then also offered some options that might appeal
to her. I mention this because it is a key negotiating strategy.
Counselor:
Sometimes once in a while family
members will agree to be tested, but they don't necessarily want to
know what their results are and so sometimes that's a possibility, that
she might be willing to do that.
Dr. Baile:
In the third
scenario the counselor must deliver bad news, the positive test result.
She uses the SPIKES method to do so employing a narrative approach to
synchronize with Mrs. Kemp's perception and the asking for the
invitation before disclosing the news.
Counselor:
So Mrs. Kemp we have just reviewed
what the three potential answers that we might get with your test
results are and what the implications of those might be for you with
respect to risk and management and so on. It seems a little bit
repetitive, but experience has taught us often times that people are
nervous when they come to get their test results and often times you
don't hear much of what we say after I give you your test results, so
we try to at least reinforce that upfront. Do you have any questions
about anything I just said or anything that's come up since our last
visit?
Mrs. Kemp:
No.
Counselor:
Okay. Well I need, first I want to just confirm with you that you do indeed want to receive your test results.
Mrs. Kemp:
Yes, I do.
Counselor:
Okay.
Dr. Baile:
After the counselor delivers the test results, she checks in for Mrs.
Kemp's reaction. She asks, "Was this what you were expecting?" And she
also asks her, "Tell me the immediate questions that come to mind?"
These are good ways to assess the impact of the news and finally in
another important part of the SPIKES protocol the strategy and summary,
she reinforces Ms. Kemp's desire to use the information in a positive
way discussing screening and surveillance. In the final scenario, we
see how a negative result is handled and it's important to recognize
the fact that a negative result is not necessarily good news and that
the client is still at risk and it also introduces the aspect of
uncertainty.
Counselor:
Is this what you were expecting? Tell me how you are feeling.
Mrs. Kemp:
Well, I just, I don't know I guess I
assumed I would have a positive result just looking at my family
history and everything we discussed before, so I guess I just feel like
I don't have a conclusion.
Counselor:
Yeah. And that can be kind of hard.
It's not a definitive answer, but the other side of that is hopefully
you've gained a lot of information through this process that helps you
sort of put your family in a little bit better perspective...
Dr. Baile:
Finally the
counselor acknowledges that questions may arise later and establishes a
follow up contact. So we have seen a sequence of genetic counseling
from referral to test disclosure. Although new technologies may change
some of the information that you've been presented, the principles you
have seen here remain the same: skills for establishing rapport, giving
the knowledge in an understandable way, and attending to the patient's
emotions and finally articulating a plan. I think those things will
always remain the cornerstones of good clinical communications in
genetic counseling.
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