How Much Do You Want Your Doctors To Say About Risks of Treatment?
When I was diagnosed with breast cancer, I was working as a board-certified oncologist. The initial decisions most patients face – which doctor to see, what kind of doctor to see, and at which medical center to see them – were basically non-decisions. I knew, within an instant of my diagnosis, who I’d ask to be my oncologist, surgeon and plastic surgeon. Those choices were straightforward, because I knew what those physicians were like in terms of how they cared for patients, their knowledge and other aspects of their practices and personalities.
The harder decisions were what treatment to take, or not, for my early-stage breast cancer. I was perhaps the most informed cancer patient who could walk into an oncologist’s office. I was familiar with the different regimens. I knew that adjuvant chemotherapy would, roughly and over the long haul, reduce my odds of recurrence by a third. I was aware that, if I opted for a lumpectomy, radiation treatment would reduce the local recurrence rate but was unlikely to affect my long-term survival. I understood that dose-intense regimens were more likely to make me sick and more likely to cause problems down the road.
And yes, in the back of my head I knew that chemotherapy can cause another cancer. Did I think about that possibility? The best answer is, probably, not so much. I was coping with the present.
But that knowledge did influence the decision I made to take a relatively “light” dose of chemotherapy. I was lucky, also, in that I understood my pathology. My tumor, at 1.5 cm, with a negative sentinel node and generous expression of hormone receptors, was a good-prognosis tumor. I was 42 years old, and wanted to live for a few more decades if I survived my spine surgery (another story). I chose the minimal amount of chemo that had been shown in clinical trials to reduce the odds of recurrence.
Last week, I wrote a piece for the Atlantic on how doctors and patients talk about the risks of chemotherapy, or not, and whether patients listen or necessarily want to listen. The reason I put it out there is because I’ve seen doctors shy away from this part of the conversation about cancer treatment. I’m a firm believer in informed consent, and in patients’ access to as much information as they choose to have. If you get chemotherapy, you have the right to know about these risks, and to ask your doctor about them.
I’ve been there with patients who’ve said: “please, don’t tell me this. I can’t deal with it.” Some might even consider it cruel to tell patients with a serious, urgent and treatment-needing condition details of all the possible side effects. Many ask, “what would you do, doctor, if it were someone in your family?” And if they like and respect you, they go with your recommendation.
This kind of paternalism, when a doctor assesses the risks and benefits, and spares the patient’s “knowing” seems anachronistic. But it may, still, be what many people are looking for when and if they get a serious illness. Not everyone wants a “tell me everything” kind of physician. What do you think?
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Elaine, this is a great topic and something that causes many a great deal of discomfort and anxiety.
Risks need to be addressed and understood and placed in the context of overall survivorship. Even though it was fourteen years ago I distinctly recall the discussion of risks from chemo – heart problems from adriamycin, a possibility of later cancers, infection, and so forth. But I also understood that those risks were rare. That’s where one problem is, in my estimation. Robin Roberts case is rare. Yet when an unusual side effect manifests itself in a public personality many suddenly feel as if their doctor skimped on the negative details. Maybe he/she did. Maybe he/she didn’t. While there are some who may want their physician to simply tell them what to do I think that is a minority, and one that’s shrinking. People can not make informed decisions if the risks clearly are not understood.
And I also think it’s possible that woman with breast cancer, mired as it is in fear, have extra difficulty if they feel they have to make a decision “right away.” Separating facts from fear……it’s a terrible conundrum. Obviously I have no answers, other than to encourage women to take their time, learn what they can, decide, and then move forward.
Thanks for starting a conversation on this.
Jody
Hi Jody, Thanks for your thoughts on this. You hit the nail on the head: It’s hard to separate facts from fear. The disease is scary, and so’s treatment. Making informed, rational decisions in this context is not easy.
Seems clear enough to me: good care depends on knowing and honoring the patient’s wishes!
As activated as I am, there were times when I just felt like: “Just TAKE CARE OF ME. Thank you.”
People put a ton of thinking into asking “What is patient-centered care?” All I know is, you can tell whether it happened by asking the patient later: “Did you FEEL cared-for?”
Dave, Yes, I think it depends on patient’s preferences, regarding how much they want to be “in control.” But if there is a side effect much later, and the patient later wishes it had been mentioned…there could be a moral issue, besides a legal one.
Such a sensative subject, with pros and cons. My question is how can a patient make an informed decision if they are not completely informed? I understand patients being overwhelmed, scared, and quite lost when facing complicated and life threatening situations but how can someone else ethically let them make these kind of decisions without all the facts? Doesn’t that lead to issues later on if the outcome is not a good one?
I think it depends on the patient. I didn’t want to know details about surgery or any of that stuff going in, but I did want to know about risk, in my case the risk of DCIS becoming invasive. It definitely factored into my decision making. Excellent post!!!! You have such a unique perspective as both an oncologist and patient. So wonderful of you to share it with us.
Yes, this is a complicated, multifaceted issue, and thank you for bringing it to light. I remember being an intern in the mid 80s seeing a patient in the ER with a deep vein thrombosis in her leg, which occurred several weeks after she had fractured her fibula and was wearing a plaster cast. When we diagnosed the DVT, I remember saying that there probably was a connection with the fracture, and the patient and family became outraged at the orthopedic surgeon for not telling them this was a possibility. I remember thinking that fractures are common but DVTs in people without other risk factors are not, so how can the surgeon be expected to put every patient on notice that a rare complication could happen to them and that they should be on the alert for certain things. In the case of cancer and chemotherapy, the list of potential side effects and complications is endless, and the organ systems potentially affected is essentially the entire body. Even if my staff and I had hours and hours to spend with each patient, would it be desirable – and more importantly educational – to go through a laundry list of potential side effects and long term risks, even if some of them almost never occur? One of the issues I have with research consent forms is that they often present the list of adverse reactions without the necessary context to understand what is common vs. very rare, what is reversible vs. not, etc., many times leaving patients more bewildered than informed.
But I do agree and try to practice with the idea of tailoring the information to the patient’s desires and need to know. Occasionally patients will say, “Don’t tell me the bad stuff,” which incidentally doesn’t almost mean an easy out for the physician, since I worry that they truly might miss something critical. More commonly patients tell me they want to know “everything” when it comes to side effects. But what does that really mean? In the case of myelodysplasia from Adria/Cytoxan, I do always include that in my discussion of risks from AC-Taxol, even though in 18 years of practice I have seen only one case. But it is a horrible side effect and usually life-threatening, so it deserves a mention, with the unintended consequence that the disclosure will mean a few patients will develop crippling fear and anxiety over that happening to them, with a definite impact on quality of life. Many other potential toxicities are in a grayer zone. I recall a patient a number of years ago that developed a side effect from her chemo that was mostly manifested by some blood test abnormalities, and while initially we were concerned that it could represent a more serious degree of organ dysfunction, that was not borne out on further testing, and as was typically the case with this particular toxicity, resolved completely without any harm or long term effect. However, she was unhappy that I didn’t mention this as a possibility in my pre-chemo consent discussion with her, particularly since she felt it caused her a number of days of significant anxiety and fear over what it meant.
What I try to do with every chemo patient is tell them, these are the side effects that virtually everyone gets (e.g., fatigue and hair loss), these are the unpleasant but generally self-limited side effects that some patients get (e.g., vomiting), and these are the scary and dangerous side effects that very few people get (e.g., cardiomyopathy). But even more importantly I acknowledge that there are many more reactions that are possible since chemo by definition is toxic and powerful stuff, but if anything should occur, my team and I would do everything we could to keep them informed and minimize the effects. That may not pass for true informed consent 100% of the time, but IMHO it’s a realistic middle ground, and I don’t think it is too much on the paternalistic side.
Finally, and this goes without saying, if so many cancer treatments like chemo and radiation – for want of a better word – didn’t suck so badly, these issues wouldn’t keep coming up. Which is another reason to be very judicious in the use of toxic therapy and support clinical trials to define more effective and less toxic targeted approaches.
Robert, Thanks so much for commenting here. I’d highlight your point on reasons to be “judicious in the use of toxic therapy.”
Elaine,
Great post. I do remember being told about risk of chemo, but at the time as you said, I was dealing with the present. I was more focused on immediate side effects. I do very clearly remember my oncologist telling my husband (after he specifically asked about this) that I would be receiving the most aggressive chemo regime. Had I fully understood the risk, would I have changed my mind on course of action? Probably not. Still, I do wish the risks had been further discussed. I like to know every detail. Thanks for writing this. I’ll be sharing.
Terrific point by Bob:
“One of the issues I have with research consent forms is that they often present the list of adverse reactions without the necessary context to understand what is common vs. very rare, what is reversible vs. not, etc., many times leaving patients more bewildered than informed”
Info w/o context: the fine print.
Jody
Drawing from my own experience, and the experience I’ve read about others – it seems that there are a million and one different emotions & approaches to chemotherapy . . . from the patient who just doesn’t want to know (that was me, thankfully my husband wanted to know EVERYTHING) to someone like yourself who arrives prepared.
Personally, I think the side-effects need to be covered – we have a right to know the risk. But at the same time, giving those potentialities with compassion and asking, “Do you need a moment?” is an essential part of the delivery.
I want to be fully informed, both about the common side effects of a treatment and the rare ones. Unless I have this information how can I compare the benefits versus risks of a treatment? After all, I am the one who has to live with the consquences of treatments and side effects.
Elaine,
Great post as always. We all recognize that people are very different in the way they want to have or use information. Some are voracious to a fault and over-learn to the point of being paralyzed by “too much” info (not necessarily “knowledge”). Others want their doc to make all the decisions since they are almost incapacitated by the prospects and the fear.
To me, the best oncologists are ones who recognize this spectrum, and a wide spectrum it is, and be patient with those who bring in every last bit of info and try to streamline their decision making. But in the other end of the spectrum, I think that docs should try to ease their patients into a more accepting frame of mind so that they can have the opportunity to participate in their own decision making. But I would not push to the point of making that person so uncomfortable and so stressed out that it becomes counterproductive.
Ultimately we all have to respect that people are very different in their “preferred” coping strategies and we need to try and work as best we can within the boundaries that each patients sets.
Although not a clinician, I was an administrator with a statistical background. Between diagnosis and surgery, I read a lot of papers, and understood a lot of the risks as they applied to large population studies. It’s quite different when you become part of that population.
I thought that I’d want to know every minute detail. But what I found was that I wanted to have doctors I could trust, and rely on them for information and treatment, and have autonomy about the final decisions. I wanted the big picture, and the ability to ask about weird, out of the ordinary things – but I didn’t want to know about them. I found that I trusted my surgeon and my oncologist, as well as my radiologist. And while I didn’t have formal second opinions, I was able to ask other physicians what they thought on an informal basis. My surgeon told me what she would do if it were her, and my oncologist told me what he would suggest for a member of his family. I understood what each support medication would do during chemo, and this made me feel reassured. I didn’t know every side effect of each chemo, and I didn’t spend time thinking about them. But for example, I was relieved to know I’d get antihistamines with taxol since I was concerned about an allergic reaction. And I asked specifically about that.
Now that I’m nearly a year out of chemo, I continue to be reassured about my treatment choices, with occasional moments of panic. I know there are risks of recurrence, of complications, but I try very hard to stay in the present. Oddly, I think this experience has helped me deal with anticipatory anxiety.
For me, trusting my physicians has made me comfortable with their decision making, and has allowed me to give them some control in the sense that they suggest treatments, etc, but I still maintain autonomy. I also know that I can call my physicians whenever I have a question or concern.
During chemo, I found that I looked forward to my treatments – each one made it closer to completion, and it was a way, I felt, of decreasing my risk of recurrence. Long term, I don’t know what the impacts will be. No one does. I am more tired, a little fuzzy headed and have side effects from the aromatase inhibitors. I understand the theory behind my treatments and this has helped me think about them as largely positive, despite their toxicity. And I suppose I will continue to do so unless I develop really adverse effects down the line.
Elaine,
Your approach – of finding doctors you trust and generally following their advice, is not uncommon. It’s more or less what I do for most of my health issues, because I don’t want to “be my own doctor.”
Nice to have another “Elaine” commenting here!
As a gynecologic surgeon, the most challenging informed consent I give is in preparing a patient for surgery. As an advocate for patient information/education, I even hear myself rambling away at all the risks of the proposed procedure, and wonder how a patient can ‘make a decision’. Over the years I’ve learned to give as much information as I can (benefits,risks,and alternatives), but most importantly, I’ve learned to put the discussion of risks into context/perspective/likelihoods for the patient. I use diagrams and analogies (“the bladder is like a delicate balloon that can be easily injured in this type of surgery”) in helping patients to understand their anatomy, as well as the risks, when making their decision.
Most patients still consider physicians as authorities on health/medical information. As such, our statements are both respected and feared. There is an art to this ‘contextual’ informed consent conversation in terms of balancing the discussion of benefits vs risks. It takes time, patience, and good communication.
@drsuzyyhall
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Thank you for sharing your unique insight on this topic. Personally, as a BC patient, I probably annoy the heck out of my medical team because I want to know everything, and then more. I feel that it’s my body and my illness, and that if treatment is to work properly, I need to buy into it, and understand as much about the whys, the risks and the benefits. My team have been very good about this, and take the time and trouble to explain everything. I even had one of them contact me because he had read my blog and it was clear I hadn’t quite understood my prognosis, which wasn’t as bad as I thought it was! I know many people just want to be a passive participant in their treatment and to know to much would carry the extra weight of increased anxiety. Oncologists and patients should perhaps work together to find a viable way of asking exactly how much each individual can cope with knowing. Then there are some who might want to know everything at some point but “today” there is just too much else to process and they can’t deal with all of it.
However, for you all that knowledge, without having the choice of wanting to know it all or not, must have been a mixed blessing at times. I really hope you’re doing well with everything, including your spinal operation.
Very best wishes, and for the coming year. Yvonne
Thanks so much, Yvonne. Hard to balance, these decisions – on how much information we want – are tricky for all of us. Best wishes to you for the new year, Elaine