The physicians need to rethink how we reach decisions with
surrogates. You are listening to ReachMD XM 160, The Channel for Medical
Professionals. Welcome to the Clinician's Roundtable. I am your host, Dr.
Maurice Pickard and joining me is Dr. Alexia Torke. Dr. Torke is the Assistant
Professor of Medicine at Indiana University Research Scientist at the Indiana
Center of Aging and also the Director of the Ethics Fellowship at the Fairbanks
Center for Medical Ethics.
DR. MAURICE PICKARD:
Thank you very much for joining us.
DR. ALEXIA TORKE:
Thanks for having me.
DR. MAURICE PICKARD:
Recently you had a paper in the journal on clinical ethics
which focussed on this whole tension that may exists between doctors and
surrogates, but before we get to that, could you tell me as a background how
have we dealt with surrogates and what is the standard bioethical approach to
surrogate decision making?
DR. ALEXIA TORKE:
Well, the basic issue is that a lot of adults at some point
during their medical care lose the ability to make their own medical decisions
and ethicist have tried to come up with a standard framework to help physicians
and family members when they are making decisions for these patients and the standard
approach has generally involved 3 standards. The first one is advanced
directives where we ask individuals to indicate the kind of care they would
want to have if they ever became unable to make decisions in the future, so
this is something that we ask people to do before they lose their capacity and
then we can rely on these documents for decision making. Unfortunately, most
people do not have these documents and so we often have to turn to the second
standard which is called the substituted judgment and in this standard the
surrogate attempts to make the decision that the patient would have made and
this can be based either on statements that the patient has made or even under
general beliefs and values. In some cases, we do not really know what the
patient’s would have wanted at all and then turned to the third standard of
best interest in which decision makers try to determine what is best for the
patient overall, usually using their own judgment and their own values.
DR. MAURICE PICKARD:
Well, this is what we all learned in medical school, but has
not there been a lot of criticism about how this actually plays out at the
bedside?
DR. ALEXIA TORKE:
Yeah, there has been and there are really at least 3 main
arguments for why the approach is problematic. The first is that when people
have done studies in which they ask surrogates and patients to indicate the
kinds of therapies they would want. In certain situations, they found that
surrogates are actually pretty inaccurate. The way they generally do these
studies is that they will take a patient into a room and ask him a question
about the kind of care they would want if they had a particular medical condition
and then they take the patient’s presumed surrogate decision maker into another
room and ask him what they would do for the patient in that circumstance and
they found that there is a lot of disagreement. In fact, overall physicians
and surrogates probably only agree about 68% of the time and so the first
problem is that surrogates are just really not very good at predicting what the
patient’s would have wanted. A couple other concerns – one is that patients
even change their own mind over time. There have been several studies that
have asked the patients at time when they indicate the kind of treatment they
would want for a particular medical condition and have been gone back enough
from later and they found that a lot of people really do change their minds and
it makes sense given that their health conditions change. The third problem is
that the patients actually want their families and physicians to have a leeway
in decision making if the patient were ever to lose the ability to participate.
So, patients really want their surrogates to have some choice in the matter.
So, those are 3 things that really kind of pose a challenge to the idea that we
should rely on patient’s wishes as our first standard for surrogate decision
making.
DR. MAURICE PICKARD:
Do doctors themselves have a problem with this. I know this
is your research. How did doctors go about responding that this does not
really working out the way I thought it would?
DR. ALEXIA TORKE:
You know what we found in our research is that we did ask
physicians to articulate what they thought was the standard ethical approach
and by and large they described that 3-step process, but then when we
separately asked them to describe what they have done for a recent patient,
there was much more variety in their approach. So, I am not sure that the
physician would necessarily be able to say I know this is the right approach,
but I was not able to follow it for 1 reason or another, but what we find is
that even though they are aware of the standard textbook approach, when it
comes to making a decision for a real patient, their approach is much more
complex.
DR. MAURICE PICKARD:
When you interview these doctors, were there any particular
scenes that arose that you could focus on and deal with?
DR. ALEXIA TORKE:
When we ask them to describe the most recent patient for
whom they made as a surrogate decision, we found that they did use standard
ethical approach as to some extent, so there were for example physicians who
really said, “I tried to do what the patient would have wanted or indicated
that they encouraged the family to do what the patient would have wanted and
other times, they explicitly used the phrase of “best interest.” I really
tried to do what was in the patient’s best interest, so I tried to seal the
family towards what was in the patient’s best interest. One thing we found
though is that some patients relied primarily on patient’s wishes and some
relied primarily on best interest and sometimes they did not seem to have
insight into what they chose one or other. In addition to those major
categories, we found that physicians also consider the surrogates wishes and
interests which really does not appear anywhere in the traditional framework.
So, for example, sometimes the physician would ask the family member what do
you think we should do here and they would just take the family member’s
statement as face value without really exploring whether it was based on any
kind of patient’s centered principle such as patients wishes.
DR. MAURICE PICKARD:
And then there was a third, I think, where the physicians
himself begin to rely in his clinical judgment and what he personally felt was
right for the patient.
DR. ALEXIA TORKE:
Yeah, we did find that to be the case. A lot of times in the
traditional frameworks and even in some state laws the surrogate is supposed to
be the one who speaks for the patient and so the surrogate meaning the family
member or significant other is posed to articulate both what would be best for
the patient and also what the patient’s wishes were, but we found that
physicians also thought that they are to play a role in determining what was
best for the patient and they justified this based on a couple of things. One
was their clinical expertise, so they really thought that because of their
clinical background that they were able to best understand what was going to
happen to the patient, what was a likely outcome, and that they should bring
that input into the decision making and the second thing is that physicians
really felt a duty to determine what was best for the patient and in some cases
even to try to convince the surrogate of what they thought was best.
DR. MAURICE PICKARD:
We are talking about the tension that may develop between
physicians and surrogates and certainly I personally have always found this to
be one of the most difficult situations in medicine. It is so much easier to
deal with a competent patient and to direct them or at least give them your
advice. Now, you are dealing with a person that possibly has never seen you
before. You know I know that your article you talked about clinical judgment
and the physician always wanted to do what was right for the patient. I wonder
though there were several different kinds of physicians in your paper and if we
just focussed on interns as opposed to attending them, did you notice any
difference in how they dealt with it, some of these interns, this might be the
first patient they ever had to deal with as far as a surrogate that were part
of your research. Others might have been an attending man who had gone through
this many, many times. Did you see any difference there?
DR. ALEXIA TORKE:
You know unfortunately, because this was a very small study
really involving 20 people, we were not able to sort out those differences. We
did find that when interns were involved in decision making, they often sought
advice from the residents or attendings and a couple of the attendings that we
interviewed described giving advice to their teams about how to do surrogate
decision making well. So, we did find that there was a discussion among the
team, but in future research we do want to look a little bit whether there are
differences between the experience of those physicians who are more junior and
those who are more senior as far as the approach to decision making.
DR. MAURICE PICKARD:
The other thing that struck me when I arranged you paper was
and this has to do with really my personal contact with my colleagues. How
often physicians do not deal with their own mortality on a personal level that
many of them do not have a living will, many of them do not know who their
surrogate would be, may of them have never been surrogates. I wonder how their
own personal experience motivates them to their contact with other surrogates.
DR. ALEXIA TORKE:
Yeah, I think it will be interesting to explore that. We
did not specifically explore that in the study, but it certainly is the case
that many physicians do not have a Living Wills or other advanced directive
documents and they certainly mere the general population that a lot of people
do not feel these documents out and do not have them available when they became
seriously ill, but I think that would be a great question for future research
as the extent to which physicians own experiences with their willingness or
lack of willingness to deal with their own mortality might affect their
interactions with family members.
DR. MAURICE PICKARD:
I am sad on many ethics communities as you have and this
often comes up and you ask people at the table to raise their hands if they
have Living Wills or advanced directives and it is always amazing and of course
this mirrors I think the whole medical profession. There is an undercurrent
about dealing with their mortality that I think doctors do not want to
necessarily deal with and then it expands into how they deal with patients
personally. I am sure you know experience this same thing.
DR. MAURICE PICKARD:
I would like to ask you, you know we have no problem dealing
with competent patients as far as how do direct them, how to give them
information, how to give them choices, what we think is the best thing for
them. Why is it different when we deal with the surrogate? Why they were
doing this with competent patients, why should we do it with people who are
standing supposedly and they chose the patient?
DR. ALEXIA TORKE:
Well, I think you are absolutely right that spending time
counseling and supporting the surrogate is an extremely important part of
surrogate decision making. I think the reason why we have not paid as much
attention to that has at least 2 reasons- one is that we have tendency to view
the surrogate sort of a mouthpiece for the patient or as an objective
individual who is going to help us make decisions for the patient who can speak
for themselves. In reality, the surrogate is often a close family member or
close friend of the patients and is dealing with an incredibly stressful
situation. Often it is a loved one who might be a risk a dying or might be
seriously ill and in many cases, the surrogate decision maker is having to cope
with all of that while making very difficult decisions. So, I think that
conceiving of the surrogate as sort of an objective motionless decision maker
is a big mistake. I think the second issue is because we focus so much
attention on advanced care planning, we have not focussed enough attention on
the process that actually has to occur when the surrogate really has to make a
decision together with the physician. So, in my research I am trying to pay
more attention to the time when decisions actually have to be made rather than
the time when advanced care planning might occur.
DR. MAURICE PICKARD:
The other thing when I read the very scenarios that you
described was that very often physicians seem to mix ethics and clinical
judgment, they will give a reason which they think is a clinical judgment and
it often sounds like an ethical approach and the opposite was also true. Do
you find that doctors seem to merge this in a complex way?
DR. ALEXIA TORKE:
Yes, I think that is true. In fact, sometimes I would be
surprised when I would ask one of the subjects, a question about why they took
a certain action or why they thought a particular type of care was best for the
patient and they would give me an answer that was entirely clinical. When I
expected an answer, it would be based on ethical principles and it made me
realized that in the minds of many physicians those two are very closely
lined. I think that probably makes sense in some situations and which for
example are judgments of best interest should be based on a patient’s clinical
condition and/or prognosis and what to expect in the future, but I think it is
important that physicians be able to recognize the types of principles or the
type of knowledge that were lying on when they make an important decision and
be able to identify when they are basing something on an ethical judgment
versus on a clinical judgment.
DR. MAURICE PICKARD:
I want to thank Dr.
Alexia Torke for being with us today. We have been discussing this very
complex issue of reworking and re-looking at ethical frameworks for surrogate
decision-making, a problem that's going to become more and more frequent as our
population ages.
I am Dr. Maurice Pickard and you have been listening to
the Clinician's Roundtable on ReachMD XM 160, The Channel for Medical
Professionals. To listen to our on-demand library, visit us at reachmd.com,
and if you have comments or suggestions, please call us at (888 MD XM 160).
Thank you for listening.
You are listening to ReachMD XM 160, The Channel for
Medical Professionals.
