Clinical Judgement: Medical Decision Making in Oncology
McNutt states that ‘The patient –physician relationship is the sacrosanct epitome of
professionalism’.1 Much of this involves decision making with the goals of ensuring that
patients receive the care that is best for them, and is delivered carefully and humanely
with compassion. Decisions require viable options, upon which reasonable estimates of
benefits and harms are known, and upon which a trade off can be conceptualized. Every
decision exists in a medium of uncertainty and risk.
Decision making with respect to care of the individual patient essentially devolves into
two components,2 (i) estimating the likelihood that that an intervention will alter the
likelihood of an outcome compared to inaction or alternative interventions, and the
attendant risks of adverse events from any of these courses, and (ii) incorporating the
patient’s values and preferences.
In the first step, one must determine the likelihood of a particular benefit (in terms of
reducing the risk of a manifestation of their disease) from published studies, whether the
individual patient fits into the population described, and whether their individual (as
opposed to population average) baseline risks of that event can be estimated from their
known characteristics, and thus what the probability of changing this are for that patient.
An analogous step applies to the estimate of specific harms. What is often not appreciated
is that it is equally important to consider the risks of harm from not intervening. Adverse
events arise from both the underlying disease, as well as the intervention. This is often
referred to as the ‘mirror image’ (Joffe 1985).
The above concept forms the framework which patients and physicians will utilize in
making informed decisions, often referred to as disclosure. The next step determines the
amount of information that the patient actually desires, what specific information they
require, and how they want that presented. Equally important is determining the degree to
which the patient desires to participate in decision making.
The next step involves determining the values a patient places on their current health
status and on each of the potential outcomes, beneficial and adverse. Finally all of this
information can be incorporated into a decision, keeping in mind that no decision is
irrevocable, and that the individual patient’s experience can then be incorporated into
decisions regarding continuing, modifying or discontinuing an intervention, a model of
negotiated care.
While the phrase ‘shared decision making’ has crept into the literature, some critics
(McNutt 2004) point out that it is a misnomer, since only patients can appropriately
decide what is best for them. The final decisions belong to patients. The physician can at
best be the navigator, the patient remains the pilot. Physicians should be careful to avoid
making choices for patients. They are the guide and the fellow traveler (Quill 1996).
They can provide the information required to make an informed decision in the manner
requested, and as neutrally as possible, avoiding framing bias. However they cannot
assess the patient’s values and preferences. This is supported by both ethical
considerations (the primacy of autonomy3, see below), and by scientific observations. To
not do so is poor medical care (McNutt 2004).
For instance patients with hepatitis C were asked to rate different health states of living
with hepatitis, the side effects of treatment (values), and under what conditions they
would accept treatment (preferences). At the same time their liver specialists were asked
to estimate their patient’s answers. There was no agreement on any of these aspects of
health or care.4 This finding has been consistent across many scenarios.5,6,7
Decision making is not easy and is inherently conflicted. It is in the process of reflecting
on the values inherent in that process that the guided patient will derive the most
satisfaction.
Autonomy
Patients are unique human beings with unique life histories and values that must both be
incorporated in clinical decision making.8,9,10,11 Patient autonomy and respect for the
person12 has become a fundamental tenet of medical ethics, and granted a position of
primacy, the fundamental right to self determination (President’s Commision 1982). By
no means do all patients desire complete control over medical decision making in all
circumstances (Ende 1989). What is far more fundamental is recognizing and
accommodating the preferences of individual patients. Even when patient preferences are
in conflict with other considerations, patients’ preferences must prevail.13,14 They must
also be seen as dynamic not static entities. Cancer patients tend to have stronger
preferences for involvement in decision making.15
Values and Preferences
Sadly, patients with cancer rarely get the treatment they actually want 16. The root of this
lies in clinicians failure to recognize patient wishes in terms of information sharing and
decision making17, and the role that patients’ individual values and preferences play.
As discussed in Assessing the quality and appropriateness of care patients place values
on individual outcomes both qualitatively and quantitatively. For instance some patients
value quality of life more highly than increased survival, and the possible increment in
length of survival that justifies undergoing a treatment course varies widely from person
to person. Those values will then drive individual preferences for choices in treatments.18
These values are not tied to demographic factors, vary widely from patient to patient, are
relatively fixed (do not change after patients actually undergo treatment), and are
unpredictable. It is for this reason that Brundage (2001) and colleagues state
“the choice of treatment is best judged by the patient”.
Consistently, a substantial majority of patients state that they wish to be involved in
making treatment choices.19
Equally consistently clinicians fail to appreciate what their patient’s understanding20 and
wishes are.21 Not only do patients’ and doctors’ attitudes to treatment options often differ,
but patients welcome the opportunity to be included in the decision making process.
Patients with cancer who felt satisfied with the degree of participation offered to them
have higher levels of hope. As Kassirer states ‘even if patients’ preferences are highly
idiosyncratic, they still must be respected’. To do otherwise would be usurping their
prerogatives.22
Slevin23 compared the values of cancer patients and their cancer care providers, including
medical oncologists, prior to a decision regarding treatment. They found not only a wide
range of preferences in terms of what benefits patients would consider worthwhile in
terms of undergoing treatment, but also in terms of what risks they would accept. Also
these values were completely different to those of the oncologists. Patients were prepared
to undergo treatments and accept toxic side effects for relatively small amounts of
benefit, while their physicians were much more risk adverse. When these values were
resolicited after patients had actually undergone treatment they did not change. Others
have confirmed this.24 Physicians make subjective judgements in making treatment
recommendations to patients, and their assessments of the quality of life of their patients
correlate poorly with those of the patients themselves.25
While oncologists are often accused of being over enthusiastic about the benefits of
chemotherapy, patients are actually more enthusiastic than their doctors. Patients consider
a high degree of toxicity to be acceptable for minimum benefit. Whether their physicians
consider their patients’ choices rational or not, as Slevin says;
‘the only people who can evaluate such life and death decisions are those faced
with them’.
A more recent example is provided by Doyle (2001) from Toronto studying women on
last resort chemotherapy for ovarian cancer. Questioning of the women showed that the
reasons they were taking chemotherapy was very different from that which their
oncologists had assumed. What patients thought was important in terms of potential gains
were also very different and much lower than that of their physicians, and that they
exercised a preference for undergoing chemotherapy for a very small expected benefit.
Perception of side effects of chemotherapy
What is often forgotten is that more intensive therapy is not necessarily associated with a
lower quality of life.26 Patient satisfaction and reporting of the worthwhileness27 of their
treatments are often surprising (Doyle 2001), and oncologists overestimate the impact of
chemotherapy side effects. What needs to be appreciated is that the side effects of
chemotherapy are relatively transient while the symptoms of cancer are relentless.
What is not often appreciated is that patients actually expect a high frequency of side
effects when they enter a treatment programme.28 As Grifin29, notes, patients expect
information that is relevant to them generated by other patients, the incidence and
severity of side-effects have improved, and that one needs to assess the actual impact of
these effects on people’s quality of life. These investigators found that psychological and
emotional problems were the things that impacted on patients as much as physical side
effects, as did Cooper and Georgiou.30 Furthermore, as Lindley31, and others32 have
found, patients with cancer have much lower concerns with side effects of chemotherapy
than do other patients, as do people who have had friends or family members who have
experienced chemotherapy, and that these have a relatively small impact on their quality
of life. This has been my experience, since I routinely ask patients to compare their actual
experiences with their expectations, and the usual answer is that is was not nearly as bad
they thought it would be. As Michael and Zalcberg33 state;
“Patients should be allowed to make an informed decision, because only they can
balance the modest gains in survival and improvements in quality of life from
chemotherapy against the potential adverse effects of treatment”
Similarly Duric and Stockler34;
“These studies confirm that people with cancer consider small benefits sufficient
to make unpleasant and inconvenient anticancer treatments worthwhile…
People who have experienced a treatment consider much smaller benefits
worthwhile than people who have not experienced it”
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