Blind-Sided: Cancer 101 & Informed Consent

Themis, Lady JusticeThis post was edited on 10/9/14 to update links & make minor text corrections.

The Amazon on the left here is Themis, also known as Lady Justice. It appears that, like me, she’s missing most or all of her right breast. She’s also fit and carries a weapon, like any good Amazon. She’s here because I am constantly astonished at how many of us do not know or understand the concept of informed consent. We submit to slashing, burning and poisoning to rid ourselves of cancer, often enduring permanent deterioration of our quality of life. Yet we don’t even comprehend this bedrock concept of medical legality and ethics, nor demand that it be consistently applied to us by our doctors.

Lady Justice was “blind” so she could weigh all options and evidence fairly. But we needn’t be. I work as a physical therapist, and believe me, we studied informed consent in great depth in grad school. It’s not always easy to get my patients to let me carry it out. Let’s face it. We all want someone to just fix us, to wave a magic wand and make us all better. When a doctor evaluates our respiratory symptoms and gives us a prescription for a drug that makes our cough and fever and sniffles go away, it may seem like she’s waved a magic wand. But whether we acknowledge it or not, we give our consent to our doctor’s treatment as soon as we agree to get the prescription filled and take the medication. There’s no magic involved.

With physical therapy, “audience participation” is de rigueur. I can’t prescribe magic pills and I can’t do my patients’ exercises for them. So it is essential that I get my patients to assume responsibility for their treatment, to set their own goals. The only way I can do that is to make sure I listen to them. I have to ask them to describe their symptoms very thoroughly. I have to find out what they want to change, what they want to accomplish. I have to understand their expectations and make sure they’re realistic. Above all, I usually have to give them homework, and if they don’t do it, they won’t get better. So, I also need to assess them well in order to explain what I think is wrong, and what I can and cannot do about it, as well as make sure they understand what they can and cannot do about it. It’s therefore crucial that I inform my patients as well as I can, and that they consent to work with me.

It’s been quite a revelation for me to be a patient, especially a breast cancer patient. In retrospect, it’s frankly appalling how inadequately the principle of informed consent was carried out by my cancer doctors. All three of my cancer docs — the surgeon, the radiation oncologist, and the medical oncologist — initially presented only one treatment option. After presenting this option, the first two did not invite discussion. Instead, I got “my way or the highway.” The surgeon talked about my having a lumpectomy, describing it as a minor excision, with the implication that I would hardly notice. Instead, I later discovered I’d had half of my breast removed. By the time I saw the radiation oncologist, I was more skeptical and researched other options beyond the six-to-seven weeks of daily radiation he initially recommended. During our second meeting, I asked to be evaluated for two other, much shorter, radiation protocols. Fortunately, I was able to qualify for one of them, but I wouldn’t have had I not found out about them on my own and asked. The medical oncologist, fortunately, was more open to discussion, and thus I felt much more that the decision about what kind of oral chemo I might take was mine. Like the other two, however, she provided little information about the collateral damage and possible long-term side effects of treatment. Those I had to discover — and endure — on my own.

Frequently, an insurance company ends up making our choices for us, in effect, because our plan may only cover certain options but not others, regardless of which option might be best for us. The system as a whole also financially rewards some doctors — particularly certain specialties — disproportionately, compared to other doctors, and certainly a great deal more than clinical specialties like mine, despite the fact that we are often in fact the key players in the successful administration and outcome of treatment.

The insurance reimbursement system certainly seems to reward physicians for spending less time, not more, with each patient. Too bad if you’ve just been told your cancer has metastasized and your prognosis stinks and you are crying your eyes out. If your doctor doesn’t see six patients an hour, he may not make enough money in reimbursements to pay his staff or his rent or his malpractice premiums. And it takes time to listen well and explain thoroughly. Insurance companies don’t care if you and your doctor are dealing with matters of life and death. Then again, maybe it’s the way physicians are educated. And not educated. To my knowledge, the average medical school curriculum is not necessarily required to include classes in social skills or listening skills or humility or compassion. Medical schools — and physical therapy schools, for that matter — are filled with academic nerds, because you have to get A’s in science to get into them. Scientific knowledge may provide the foundation for someone to become an adequate doctor. But it does not make someone a great doctor. Or physical therapist.

And yet, every newly minted doctor takes the Hippocratic Oath. And implicit in the Hippocratic Oath is the notion of compassion and the principle of informed consent.

From the Classical Version of the Hippocratic Oath:

  • I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.
  • I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan….
  • But I will preserve the purity of my life and my arts.

Hmmm. A magic wand might be helpful.

When I first wrote this post, here’s what I found on the American Medical Association site about informed consent:

Informed consent is more than simply getting a patient to sign a written consent form. It is a process of communication between a patient and physician that results in the patient’s authorization or agreement to undergo a specific medical intervention.

In the communications process, you, as the physician providing or performing the treatment and/or procedure (not a delegated representative), should disclose and discuss with your patient:

  • The patient’s diagnosis, if known;
  • The nature and purpose of a proposed treatment or procedure;
  • The risks and benefits of a proposed treatment or procedure;
  • Alternatives (regardless of their cost or the extent to which the treatment options are covered by health insurance);
  • The risks and benefits of the alternative treatment or procedure; and
  • The risks and benefits of not receiving or undergoing a treatment or procedure.

In turn, your patient should have an opportunity to ask questions to elicit a better understanding of the treatment or procedure, so that he or she can make an informed decision to proceed or to refuse a particular course of medical intervention.

This communications process, or a variation thereof, is both an ethical obligation and a legal requirement spelled out in statutes and case law in all 50 states. Providing the patient relevant information has long been a physician’s ethical obligation, but the legal concept of informed consent itself is recent.

Sounds good, doesn’t it?  The link to the above description is no longer active on the AMA’s site, but when I searched for a replacement, I found this summary instead under AMA Code of Medical Ethics – Informed Consent:

The patient’s right of self-decision can be effectively exercised only if the patient possesses enough information to enable an informed choice. The patient should make his or her own determination about treatment. The physician’s obligation is to present the medical facts accurately to the patient or to the individual responsible for the patient’s care and to make recommendations for management in accordance with good medical practice. The physician has an ethical obligation to help the patient make choices from among the therapeutic alternatives consistent with good medical practice. Informed consent is a basic policy in both ethics and law that physicians must honor, unless the patient is unconscious or otherwise incapable of consenting and harm from failure to treat is imminent. In special circumstances, it may be appropriate to postpone disclosure of information, (see Opinion E-8.122, “Withholding Information from Patients”).

Physicians should sensitively and respectfully disclose all relevant medical information to patients. The quantity and specificity of this information should be tailored to meet the preferences and needs of individual patients. Physicians need not communicate all information at one time, but should assess the amount of information that patients are capable of receiving at a given time and present the remainder when appropriate.

It all sounds reasonable, but it’s not what I got from my cancer docs. The American Cancer Society says this:

Informed consent is a process that includes all of these steps:

  • you are told (or get information in some other way) about the possible risks and benefits of the treatment
  • you are informed of the risks and benefits of other options, including not getting treatment
  • you have the chance to ask questions and get them answered to your satisfaction
  • you have had time (if needed) to discuss the plan with family or advisors
  • you are able to use the information to help make a decision that you think is in your own best interest
  • you share your decision with your doctor or treatment team

Ah, yes. That’s more like what usually happens, with a subtle shift of emphasis. The ACS shifts more of the responsibility for being able to give your informed consent to you.

If you ever have to be brought to the Emergency Room, barely conscious and profusely bleeding, you are in no position to grapple with informed consent, and no reasonable, ethical doctor would withhold life-saving treatment in such a situation. But when you are told you have cancer, it’s difficult not to feel a similar sense of urgency. In fact, it’s appropriate to feel a sense of urgency. This is no head cold here. Your life is being threatened. All you want to do is get rid of the threat, as quickly and efficaciously as possible. Which is not a bad thing.

However, it’s not that simple. When you first hear the word cancer applied to you, you’re too numb to assimilate information and weigh options and discuss anything sensibly. You look at your doctor and yearn for that magic wand. But cancer and cancer treatment are complicated. And there’s nothing like being told you have cancer to force you into learning about all the flaws in the behemoth that is health care, not to mention the informal crash course in oncology you end up taking. I have no great words of wisdom to impart here. But I will say that the most useful, pertinent information I’ve acquired about the consequences of cancer and cancer treatment has come from other cancer patients, as well as from good, reliable Internet sources that present evidence-based treatment options. I discovered those further options for radiation therapy first by hearing from other breast cancer patients, and second, by verifying them by reading published research studies. But not everyone is able or willing to read research. However, the best advice I can impart is this: however you make it happen, the most important part of informed consent is you, babe.

If I think about it for more than two minutes, I still feel frustrated and not a little angry that my doctors did not prepare me more thoroughly for what I would experience both during and years after cancer treatment. But in the end, it doesn’t matter how I was informed or by whom. It matters that I realized that it was my privilege and responsibility to get informed. Ultimately, informed consent means you — no one else — are the one who has the final say in how you live your life and what treatment you get. Cancer is a hugely dis-empowering diagnosis, but you can and you must make your own choices. And that means that sometimes you might not agree with your doctor. And you might not find your girlfriend’s unsolicited opinion very useful. Or care to explain to your impatient spouse that, no, you aren’t “all done with cancer yet.” Sometimes nobody will understand you and what you are going through. Sometimes you might just piss everyone off. And that’s okay. Because they don’t have cancer. You do. And it’s not their life. It’s yours. And you don’t get through cancer by being nice and agreeable and trying to please anybody. You get through cancer yourself, as best you can.

Knowledge is power. So go get some. And tell everyone to get the heck outta the way. You got some major cancer ass to kick.

Hippocratic Oath, Medicine.Net
“Hippocratic Oath,”  definition, Wikipedia
Informed Consent, American Cancer Society
Informed Consent, American Medical Association
“Informed Consent,” definition, Wikipedia
Institutional Review Board of Samford University

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Saturday, October 03, 2009 at 02:10 am, filed under Chemotherapy-IV & Oral, Diagnosis, Recurrence, Screening, Health & Healthcare, Life & Mortality, Nitty Gritty, Radiation, Research, Surgery & Reconstruction, Survivorship and tagged , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

11 Responses to “Blind-Sided: Cancer 101 & Informed Consent”

  1. Hey Kathi…
    Well said!! I have been reading through some of your blog, and I think it’s really wonderful!!

    Only another breast cancer survivor can truly understand just how it feels to hear those words: “You have cancer”. they strike terror in my soul, even now…

    Thanks for keeping up your blog, so that everyone can read and share your experience with breast cancer.

    Love you!! <3<3<3

  2. hello, this is my first time i visit here. I found so many interesting in your blog especially its discussion. keep up the good work.

  3. What can I say when you blog Kathi.. you are always Amazing the way you express yourself. I was lucky to find a good doctor who took care to inform me about everything and allowed me to make decisions,. He actually advised me not to go for radiation… and with every cancerversary I feel so grateful to him…
    It is sad that is not always the case. I may have been misinformed or not well informed but then I was so desperate to be there for my 11 month baby that I may not have cared. Not until I met you have I ever pondered whether the doctors have done justice to me.. Thank God I feel yes.

  4. Hello Kathi,

    I am like you. There seem to be so few of us!I keep meeting women with breast cancer who sigh when I ask them questions and then say “I’ve left it all up to my doctor/Oncologist/etc.” I know we are tired, upset, etc but I still use up my couple of hours per day when I can focus on research to double, triple and quadruple check facts or data. My surgeon was great, My Oncologist and Physio also. Information including information contrary to what they were recommending, simply flowed out of them. Who were the pits? The medicos dealing with machines – the nuclear imaging and radiation oncologists. Condescending sods who made a game out of withholding medically pertinent information I was telling them verbally as well as in writing I must have. The Radiation Oncologist in particular was a disgrace. Would not understand the concept of informed consent if it bit him. Anyway, I have lobbed a huge document on his head containing my research on what he failed to tell me as well as a list of questions he needs to answer to give me enough information to be able to make an informed decision about treatment. Along with an instruction that it go back to the case review team in full so they know why I am so ticked off and I insist on being given treatment options -not one recommendation which I suspect is the one cheapest and most convenient to them but also the one most likely to do me most harm. It will be interesting to see how they deal with my challenge to their feeble attempt at informed consent window dressing.

  5. This is a fabulous posting filled with so many truths that people aren’t aware of. I love my doctors — they are not only scientists but see medicine as an art and have wonderful bedside manners — but now that I really think of it, I didn’t get full informed consent.

    I wasn’t told about the long-term side effects that cancer treatment would cause. I guess even if I were told, I’d still go through with the treatment (lesser of two evils), but at least I would’ve been informed.

    You are so right when you say that “informed consent means you.” I feel so strongly about self-advocacy and feel that a patient must advocate for him/herself, for nobody else will.

    Bravo on an informative, courageous piece. Now I’m going to list your blog on my blogroll.

  6. Thanks, Beth. This whole experience has made me passionate on this subject.

  7. I know I’m late to the party on this one, but I have said from day one of my diagnosis. The doctors need to preface their treatment plan with “Should you wish to seek treatment…” because frankly, I seriously thought about bailing on the whole thing. That said, informed consent must include that No treatment is an option.

  8. Excellent point, Les. Any treatment is subject to our approval. Including none.

  9. […] and Far be it from me, a staunch advocate of informed consent, to eschew gathering as much information as possible when one has been told one’s biopsy is […]

  10. […] posts: Blind-Sided: Cancer 101 & Informed Consent The Numbers Game Hormones + Breast Cancer = […]

Leave a Reply