The GOOD Acronym: 'Its Good
to Incorporate Patient and Family Preferences into Decision Making.'
Fortunately, in most cases there is a middle ground between these
extremes of consumerism and physician paternalism. Most patients and families
will willingly enter into a collaborative decision-making process if offered
the chance.
The GOOD acronym (goals, options, opinion, document) provides a
construct for communicating with patients and others involved in making such
difficult decisions. GOOD decision making for such problems is a cooperative
venture that involves input from patients, families, and health care providers.
The acronym provides only a crude structure for engaging in such conversations.
Flexibility and practice are required
if communication skills are to improve.
G: Goals
What are the "big picture"
goals for patients, families, and care providers? Understanding the big picture
is critical to good decision making and facilitates the identification of
explicit treatment goals. Often, these goals are not clearly stated by
participants and may not even be clearly conceptualized. Identifying and
clarifying such goals makes consideration of specific options much easier.
Sometimes goals can be obvious. A patient who shows up at an emergency room
with a cut on the finger probably wants it sewn up. We can assume this is a
goal we share with the patient. Rarely are goals so clear-cut toward the end of
life. Patients and their families may have very different goals relating to how
they wish to live and die. Often, we are simply unaware of patient and family
goals because such goals arise from long and complex life stories about which
we are understandably ignorant. We will not understand their goals unless we
ask. In terms of storytelling, goals represent possible story endpoints.
Steps in considering goals include:
- Identify stakeholders.
Whose goals do you need to consider? The patient's goals are most important,
but the goals of others are also relevant. Which family members are involved,
and what are their relationships to the patient? Are spiritual or community
leaders active participants? What clinicians, physicians, and other health
professionals are involved in the patient's care and decision making? Whose
stories do you need to consider?
- Elucidate stakeholders'
understanding. Stakeholders' goals for the future make sense only relative to current understandings. Consider asking
a patient (or relative), "What is your understanding of ..." (your
current condition, your illness, why you are here)? A related but distinct
question is, "What have you been told
about your condition/illness." A patient may have been told one thing but have a very different understanding of what is
going on. By analogy, imagine getting a phone call from someone asking
directions to your place. The goal is clear- to get a certain place. You would
first ask, "Where are you now?" If there was some uncertainty as to the
person's location, you might ask, "Where do you think you are now?" Then and only then could you give intelligent
directions depending on his or her location. If there were serious disagreement
among fellow travelers as to where they thought they were, it would be
impossible to decide on a route no matter how clear the final destination.
- Clarify "big picture"
goals first. A common mistake is to
rush too quickly to discussion/argument over specific therapies or options
before the big picture is considered. This is like arguing about which highway
to take before you have decided where you are going. For example, before
discussing the use of antibiotics in a terminally ill patient with a particular
infection, it can be very helpful to understand the relative priority of life
prolongation compared to a more exclusive focus on comfort without life
prolonging efforts. You might say something such as, "I'm trying to understand
how you see the big picture. We'll get to the specific decisions we have to
address in a moment. Do you have a major goal in your care? What is most
important to you?" In considering aggressiveness of life-prolonging
interventions, you might ask something such as, "Imagine a line where at one end
we would work as hard as we can and aggressively as we can to prolong your
life. We would still work to keep you as comfortable as possible, but the
priority would be on prolonging your life. At the other end of the line we
would work just as hard, focusing on your comfort, but would not attempt to
prolong your life at all. In my experience people with your condition might be
at either end of this line or anywhere in the middle. Where do you think you
are?" For patients unable to conceptualize this spectrum, you might break the
line into thirds, saying, "Some people would like everything possible done to
prolong life, some people would like modest means used to prolong life, and
some would not want their life prolonged at all. To which group do you see yourself
belonging?" Big picture goals can be thought of as a final destination along a
journey (or story). If one understands what this ultimate destination is, it is
much easier to proceed by choosing a general route that may reveal several
derivative decisions about where to stop along the way. A note of caution: Do
not be surprised if patients and families are confused when you ask them about
their goals. This does not necessarily mean that you are communicating poorly.
Patients and families are no more used to being asked such questions than
clinicians are used to asking them. Indeed, patients and families can become "medicalized" such that they get too caught up in a series
of actions, bouncing from one test or procedure to the next, without ever
considering what they are trying to accomplish.
- Assess values that
guide big picture goals. What is important to the individual? What is desired
and what feared? How do these values make sense and guide this person's
decision making? Assessing values fleshes out the context within which a
specific decision is being made. For example, in the case of Mr. C,
understanding the importance to him of finishing his book helped us understand
his goal of living for an additional year.
- Identify
option-specific goals. Having identified relevant treatments or the options
available (see the section on options below), what does the individual hope to
accomplish? Is there something in particular that the individual wishes to
avoid or fears? Different individuals who consider the same treatment or option
will have very different understandings of what will happen if the option is
used or not. Similarly, they may have very different hopes and fears relative
to the outcomes of particular choices. Although it is important to bear in mind
one's ultimate "destination" in a voyage (or story), value in the trip is often
found along the way, not just at the very end. This step usually follows the
identification of specific options, as discussed below. It is included here for
organizational purposes. In real interactions one often must move from
considerations of goals to options to values in a more fluid manner. In
responding to a request for antibiotics for a patient who is actively dying,
for example, if the inquirer's goal of care is the provision comfort only, one
can then ask how the person imagines that antibiotics will contribute to
comfort.
O: Options
- Start by making a
mental list of relevant options to consider. Is there a logical order in which
these options should be considered? Although many specific options may emerge,
a natural hierarchy usually suggests itself, often from considering big picture
goals. A clear decision on one major option will often resolve a subordinate
option. If, for example, a decision is made to stop dialysis, yielding a
predicted life expectancy of 10 to 14 days, decisions related to many other
potential options will then become clearer.
- Inquire if stakeholders
are considering options other than those on your list. The ultimate list of
options to be considered should be constructed from those of all relevant
stakeholders.
- Discuss benefits and
burdens. Up until now the focus has been on eliciting the hopes, fears, and
opinions of others involved in decisions. Now is the time to offer information
about the possible benefits and burdens of taking or not taking an action under
consideration. Before doing this it is critical to do your homework. Often
clinicians engage in discussions about difficult decisions in this area without
knowing basic facts. For example, in discussing a possible DNR status, what is
the chance of surviving an attempt at resuscitation? What chance is there of
surviving but having significant brain damage? What data exist (or do not
exist) relative to tube feeding and the chance of preventing aspiration
pneumonia in a patient with abnormal swallowing? What are the pros and cons of
treating patients who are actively dying with antibiotics and IV hydration? How
would hospice care be different from standard home care? Benefits and burdens
only make sense relative to goals. Prolongation of life, for example, may be
seen as either a benefit or a burden depending on one's overall goals and
values.
- Consider probability.
For many patients understanding the probability of success or failure will be
important in deciding on a particular course of action. For example, patients
frequently overestimate the overall success rate of CPR and may reconsider
their choice for CPR if informed that for patients in similar situations, less
than 1% leave the hospital alive following resuscitative efforts. On the other
hand, some patients appear to place little value on probability in making
medical decisions. Some patients will not care if the chance of successful
resuscitation is one in a billion - they will want resuscitative efforts. (Others
will decline resuscitation efforts even if guaranteed of success.) It appears
that for many patients and families, how a decision and related outcome states
fit into their particular stories is as important or more important than are
raw probabilities of particular outcome states.31 For example, a person may base
a decision on whether to have resuscitation attempted more on his view of
himself as a "fighter" (or not) or his belief that his affairs are in order (or
not) than on probability estimates.
- Honor values. Values
refer to the relative importance, or weight, that may be attached to particular
outcome states. How important is it to be able to live at home? How important
is it to be able to eat by mouth (in a patient for whom tube feeding is being
considered)? In terms of patient and family stories, again, values provide
context and meaning within which characters act and plots unfold. Although the
clinician can provide information on potential benefits and burdens of proposed
actions, the relative weight of these outcomes arises primarily from the values
of the patient and family. If, for example, one of the few residual pleasures
left in life is eating, this must be weighed in considering possible tube
feeding. Conversely, if the family believes that not providing nutrition when
technically possible will be tantamount to starving a patient to death, this
must be acknowledged and considered. Patient and family values may be
particularly misunderstood when patients and clinicians are from different
backgrounds. Care must be taken to elicit values in a nonjudgmental way. At the
same time, the clinician should consider carefully his or her own values
relative to the question at hand. Although some clinicians may like to think
that their preferences for certain decisions are based entirely on rational
processes and probabilities associated with scientific understanding, this is
untrue. We bring to clinical encounters very human values that shape our
preferences.
O: Opinion
- Offer your opinion. So
far, you have largely listened to others and probably shared some information
that may be important in considering specific decisions, such as possible
benefits and burdens. Now it is the time to offer your opinion. Although patients
and families welcome your involving them, they also usually welcome a clearly
stated opinion as to which option(s) might be best.
- Separate data from
opinion. Sometimes clinicians pretend to be neutral when, in fact, they have
strong beliefs as to what course of action would be best. Certain choices,
especially those regarding end-of-life care, have become culturally framed for
clinicians in such a way that the issues are seen as entirely personal and
outside the boundaries of medicine. Thinking that it might be improper to
offer an opinion in such cases, clinicians may subconsciously avoid sharing
data that would lead patients to a desired choice while avoiding stating an
opinion directly. This practice is to be discouraged. Consider the two following
examples as ways of "shading" data: "If you want us to smash your chest and jam
a tube down your throat, hey - that's up to you. Don't let me bias you," or, "We
can massage your heart and slip a small breathing tube in to assist your
breathing. You want to breathe, don't you? But of course, it is up to you." It
would be better to use more neutral language in giving data accompanied by a
separate, clear opinion: "Cardiopulmonary resuscitation, or CPR, involves
pressing on your chest and inserting a breathing tube...."
"In my opinion you would be best served by not having resuscitation attempted
(or having it attempted)."
- Explain your opinion,
incorporating data from earlier discussions. Try to link your opinion to
patient and family views, clinician goals, benefits and burdens of care,
probabilities of outcomes, and the values of those involved. You might say
something like, "You've told me that quality of life is the most important
thing to you. There isn't good evidence that a feeding tube will improve your
quality of life. You've told me that eating gives you great pleasure, so in
your case, I'd recommend against a feeding tube." In terms of stories, this is
your chance to suggest a change in the story line and to bring together
divergent story lines. Suggested changes in a story line for patients,
families, and clinicians will be accepted only if others understand the change
as a reasonable alternative to their own stories. In
the case of Mr. C, when I suggested that he might not want continued aggressive
life support if he were permanently "out of it," he accepted this, I think,
precisely because it made sense in terms of his own story line. His goal for
wanting everything done at that time was to revise his will and come to grips
with his situation, neither of which would be possible if he were "out of it."
My opinion that continued short-term ventilation was not futile was accepted by
the ICU team because a concrete, but alternative, goal had been established
with which they could help. This was acceptable within their story line.
D: Document
A quick survey of many hospital
and clinic charts will reveal that documentation of important discussions is
often lacking. This is not only ill advised clinically, but also medically and
legally. Imagine a patient with whom you have discussed code status who agrees
to a DNR status. She then dies. A relative subsequently states that the patient
had always wanted "everything done." The first source of information would be
the medical record. A (common) note stating simply "DNR" would not document
that the patient had been involved in the decision. You might be sued.
Conversely, if you wrote only "Full Code" or nothing at all and the patient
arrested and was resuscitated with serious neurologic
sequelae, you might be accused of resuscitating a
patient against her wishes. The family might refuse to pay the bill. What you
should document in your note should include:
- A list of the
participants in the discussion and decision.
- A brief account of the
essence of the discussion, with attention to the final decision. A note
regarding possible tube feeding might say, "I discussed tube feeding with the
patient and his daughter. Possible benefits and burdens were identified. I
recommended against tube feeding at this time, and patient and daughter
agreed."
- If discussing advance
care planning, pay attention to both what the patient wants now (a current advance directive) as well as
what the patient might like if certain things happen (an advance advance directive). For example,
many patients would like an attempt at resuscitation to be made. However, many,
if not most, would like a switch to comfort care if it became clear that the
chance of recovery to a reasonable quality of life was very low, as was the
case for Mr. C. You might write something such as, "At this time the patient
would like resuscitation attempted. However, he agrees that were he thought to
be permanently unable to interact meaningfully with his environment, then he
would like only comfort care at that time." A statement such as this can be
worth its weight in gold for the patient in the ICU who is not thought likely
to recover following resuscitative efforts.
- Make sense of the
decision. Was the decision in keeping with an advance directive? Why else does
this make sense? This is your chance to write a short story. Such stories can
be very brief and state something such as, "This decision makes sense as the
patient and family understand he is dying and that their primary goal is now
quality of life," or, "This decision is in keeping with the patient's written
advance directive."
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