|
| |
-
Breathe. Being diagnosed with a dread disease is a serious,
life-changing event. You have every right to worry, but just remember that
you are still alive. You can’t change your diagnosis, but you can
make the best of your situation and potentially change your prognosis.
-
Decide
for yourself how engaged you would like to be with your doctors and in
treatment decisions. If you’re a person who’d rather have full
faith in your medical team, who would not deal well knowing all the “warts”
of treatment, who would become overly disturbed upon discovering the array
of errors too often committed in hospitals, or who’d get too angry learning
that treatments are often dictated by immediate costs rather than long-term
cost-effectiveness, social costs, and patient well-being, then the approach
outlined below is probably not for you. Keeping your stress levels down
during treatment is hard enough, and knowing “too much” about the reality of
your situation may or may not make it worse; you can decide that for
yourself. On the other hand, if you think you can stomach some pretty
unpleasant details about cancer treatments and the way medicine is sometimes
practiced, do read on. Read these tips if you want to become active
in decisions about your treatment.
-
Respect your doctors... They are intelligent, skilled,
experienced, and caring, and they truly want the best for you.
-
...but
understand they are often constrained by "the system." Many
doctors are stuck in a cost-conscious and tradition-bound medical system
that discourages accommodating individual needs by deviating from standard
methods of diagnosis and treatment. It is a very hierarchical profession;
status counts, and the patient is usually near the bottom rung of the status
ladder. In addition, most medical institutions and insurance companies are
reluctant to pay for costlier new or “unproven” treatments or additional
tests that don’t fall within the boundaries of commonly used protocols, even
if there are good medical reasons to expect that these innovative measures
could improve their patients’ chances.
-
Realize that your worries about the costs of this "medicine by the book" are
justified. While it is clear that medical professionals must
adhere to well-defined, standardized rules and ethical procedures, mainly to
ensure the well-being of their patients, some discrepancies exist between
performing medicine by the book and doing what is best for the patient. The
danger in this is threefold: 1) Poor tests and testing methods may fail to
show that a patient is in danger, as would’ve been the case with me had it
not been for the three blood tests; 2) Faulty cost-benefit analyses can deny
patients needed drugs, which can lead to many risks, including additional
health problems, missed time at work, etc.; and 3) These flaws in “the
system” may cost medical institutions far more than the cost of the drug or
the extra test(s), and when multiplied by thousands of patients, could cause
long-term financial hemorrhage.
-
Also
understand that there are things only you can know about your body.
In most situations, the doctor does know best, but sometimes the patient
knows better, at least about how the patient feels and what the patient
needs. To best exploit your knowledge of your body and your doctors’
knowledge of your disease, you must form a strong partnership. In a full
partnership, you and your doctor should discuss all present and future
treatment options and decide on a course of action for the immediate and
long term.
-
Get an
advocate to help you in expressing to your doctors how you feel and what you
need and working with them to find the right treatment solution.
Your advocate can be a professional or a family member or friend – it’s your
choice. In selecting an advocate, you should decide what level of
interaction with medical personnel fits your personality, knowledge base,
and medical situation. Find someone who can intercede at the level you want
and help you think ahead about questions you should ask and requests you
should make. Of course, your advocate should be someone you trust with very
personal information and feel comfortable interacting with, so friends and
family members are often ideal.
-
Together, you and your advocate should consider the following topics:
-
Does the test tell you what you need to know?
There are countless examples in oncology and nearly all other fields of
medicine of tests not being given, even if they might give doctors and
patients more and better information. In addition, many tests are
avoided until “absolutely necessary,” at which point it is possible that
less effective – and in the long run, perhaps more expensive – means of
detection and treatment will have to be pursued. On a more optimistic
note, there are many instances in which the “right” tests are performed
as part of standard procedure. The difficulty any patient or his/her
advocate will have is in distinguishing between tests that tell them
what they need to know and tests that don’t tell them enough. Medicine
is constantly improving, but it is still necessary to be diligent,
consider what is being done and what it will—or won’t—tell you. Don’t be
afraid to ask the doctor why he/she is ordering certain tests and not
ordering others.
-
Subjective probability analysis.
Subjective probabilistic analysis, or “Bayesian updating” – named after
Thomas Bayes (1702-1761), a clergyman who invented this method for
assessing so-called conditional probabilities – is an important
decision-making tool. “Subjective,” in this context, means being based
on knowledge, experience, intuitive judgment, and/or expertise, and
not on preexisting hard data, as too little exists in most
situations in which subjective analysis is most useful. This method of
decision analysis involves forming an assumption, called a prior
probability, and modifying it based on new data to form what is called a
“revised prior” – what the Bayesian statisticians call an “a posteori”
probability (simply an updated probability based on new information).,
in the real world, as topics of inquiry become increasingly complex and
involve questions about the future, scientists do not always enjoy the
luxury of extensive, comprehensive and reliable frequency data (like
clinical trials data) when they need them. Such situations are ripe for
the use of subjective probabilistic analysis.
-
Distinguishing frequency data from process knowledge.
In dealing with your dread disease, you or an advocate will learn
quickly to distinguish between frequency data and “process knowledge,”
which is just what it sounds like: knowledge about what treatments do
and how the body reacts. In treating dread diseases, doctors have come
to rely on frequency data, which basically consist of large sets of
historical results from clinical trials that were conducted on hundreds,
or even thousands, of patients, some who got the medicine, device, or
procedure being tested, others who got placebos. Such data allow for
statistical analysis and observations on what course of action is best
for the “average” patient. You may also hear frequency data being called
statistical, objective, empirical, or clinical trial data. However, if
such data don’t exist for your disease or you are far from being an
“average” patient, you may need to rely more on process knowledge and
the use of subjective probabilistic analysis.
-
Thinking ahead. Simply thinking ahead
may very well give you a leg up in fighting your dread disease. Make a
point of always prepping before appointments so that you come prepared
with a list of questions and suggestions.
-
Prognosis: The news may be better now.
The internet is home to a huge amount of data on clinical trials and new
treatments, but the information is not centralized or completely
up-to-date—and most of it is written in medical shorthard that the
average person is not trained to follow. Most sites containing clinical trials databases are months
behind in listing new clinical trials, and none include all the
trials currently underway. Even the National Cancer Institute’s Web site
(http://www.cancer.gov)
fails to list some private clinical trials sponsored by pharmaceutical
and other companies. To compound the problem, some cancer Web sites give
information that just isn’t true or has never been tested. The good news
is that the treatments for your cancer may be improved and your
prognosis may be better than the Web would lead you to believe. Your
doctor should know how to sort bogus data points from credible ones and
could very well have information on clinical trials and improved
treatments that are so new that they cannot yet be found on the Web.
Your doctor may have learned of new treatments from trials that he/she
or another doctor in the same hospital or medical facility was
conducting, from outside trials, or from attending a medical conference
where not-yet-published results were presented. The U.S. National
Institutes of Health (NIH) has produced detailed requirements regarding
the dissemination of clinical trial data, and one of them states that
the institution sponsoring the study should distribute data on the
study’s findings to all relevant health care professionals, either prior
to or concurrent with the public dissemination of the data. In many
cases, your doctor will receive these data well before the majority of
the public and well before they are published in medical journals. In
choosing a doctor, you will want one who seeks out such information, not
one who is too busy to keep up with the literature or learn new
techniques, or who sticks to old-fashioned or familiar protocols.
-
Informed consent. Stay as well-informed
as possible about your disease and the pros and cons of various
treatments. Read up on the side-effects of different drugs and how they
generally affect people of your age. It is up to you and your advocate
to decide whether the benefits of treatments outweigh the costs.
-
What do you really want to know in advance?
Is there a balance between knowing what is most important and not
knowing so much as to invoke a power of suggestion (i.e., the “reverse
placebo effect”)? Each patient and his/her advocate will have to grapple
with this issue and make the decision that is right for them based on
the patient’s preferences. It is easier for many of us to accept
hardship when we understand the benefits, but that approach might not
work for everyone. Decide with your advocate what level of knowledge
works for you.
-
Asking for answers and attention. A
single word of advice for patients and advocates: persevere. When you or
someone you know has a dread disease, you deserve to have your questions
answered and your fears addressed, but it might take some work. Once you
have received your diagnosis, and perhaps a prognosis, begin by
researching your disease and jotting down a list of questions and
concerns you have about your condition and treatment, and make note of
any related apprehension that has surfaced. As time passes, you may add
to or subtract from the list as necessary –an example of Bayesian
updating. If there comes a point at which you have questions you would
like answered by your doctors, mull it over or discuss it with your
advocate to decide on the best course of action, and then approach your
medical team with your request. Remember that your doctors are merely
mortals, albeit busy ones, and your concerns should be theirs. It is
possible to approach them in a polite-yet-firm manner, and I imagine
you’ll be surprised at your own courage under fire. When your life is on
the line, there’s no room for backing down or settling for second best.
-
Fight or
flight? In
dealing with a dread disease, it is impossible for a patient or his/her
advocate to fight every single battle over treatment, but there is a way to
decide when to fight and when to take flight. First and foremost, if
something comes up that could dramatically impact your outcome, it is well
worth a fight. Don’t be afraid to ask to have a protocol overridden or if
alternate solutions are available. If such a problem seems to have many
solutions, great, but if not, don’t give up; it may still be worth pursuing,
as your advocate and medical team may have ideas. When problems arise that
most likely won’t affect your long-term health, you must pick and choose
your battles.
-
Coulda, shoulda. To avoid having too many regrets about your own
treatment, do all the research you can about your disease. Any information
on new and successful treatment protocols or new machinery will likely be
helpful. If you’re fighting for some treatment option that you think could
significantly improve your long-term health, don’t back down! It’s possible
that your doctors, who are highly intelligent but sometimes get stuck in
routines dictated by protocols, will come to see things your way, or they
may give you good arguments why you are wrong. Then, either outcome will be
positive and will at least give you peace of mind.
-
A dose
of common sense. Sometimes, common sense may be the best
medicine. Your doctors do want what’s best for you, but as you
might’ve guessed by now, you can’t assume their systems are flawless. If
something doesn’t make sense to you or your advocate, ask about it.
-
Just
say yes. In the hospital, the street rules about “just saying no”
to drugs don’t apply. Sometimes, more drugs can improve the quality
of your life, especially if you are able to find a solution that allows you
to be coherent when you want or need to be. Once your pain is out of
control, it can be very hard to bring it back under control, so don’t feel
like you’re a junkie when you just say yes. Your body and mind will thank
you.
-
A
patient's best allies. Nurses – the primary caregivers, night
watch people, sympathizers, and listeners – are a patient’s best allies
during treatment. Befriend your nurses and appreciate their continuous care
and desire to accommodate you in every way.
-
A left
brain vacation. You have a right to mourn, and you should, in
order to let your right brain – the more emotional side of the brain – to
recover from your dread disease. Don’t be afraid to let your emotion flow.
Let the anger and the hurt and the ‘How could this happen to me?’ come out.
It is all part of the recovery process.
-
You
can mourn, but don't "borrow trouble." There is only so much you
can do in fighting a dread disease. If you and your doctors have agreed on
and are pursuing what appears to be the best course of action, there’s
nothing else you can do. Stay alert, but don’t “borrow trouble.”
-
The
importance of feeling human. During outpatient treatments, if
you’re feeling up to it and your doctor permits it, don’t be afraid to allow
yourself a taste of the “real world.” Seeing friends, going out to dinner,
and even doing some work may be satisfying and make you feel more like a
human than a victim. You’re not just a cancer patient, but a human being,
and you owe it to yourself to keep your body active and your mind engaged.
Just don’t overdo it. Let your advocate and your doctors help you figure out
how to strike a healthy balance.
-
A
silver lining in the cancer cloud? Appreciate the positive
aspects of your experience with a dread disease, especially if they are
aspects that might not have occurred otherwise. For Schneider, it was
understanding the extent of the love his friends and family had for him,
discovering that his work as a climate scientist had touched people around
the world, and realizing that his doctors had gone out of their way to form
a partnership with him that led to many positive outcomes. Enjoy the silver
lining – it will help you to get through some difficult times.
|