The organization that sets standards for cancer care does not include cognitive issues in their patient consent document
Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.
That wasn’t hard to do. As I told the audience, I know our book has made a difference. Yet I continue to receive letters from patients and former patients telling me that although they now understand what’s happened to them cognitively as a result of treatment, they can’t seem to get their medical teams to take their concerns seriously. A common thread is, they bring up their memory issues with their doctors only to have their worries waved away, dismissed, as if it’s all a figment of the imagination.
To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the American Society of Clinical Oncology (ASCO) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.
So what’s on this form that patients are asked to sign? Basically, it’s a list of all the potential side effects (you'll find the actual document here):
Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and other professionals who care for cancer patients.
And even though ASCO is highly respected and tremendously valuable, at least on this point, it doesn’t seem like it’s doing a very good job. If the professional association that sets standards for oncologists doesn’t seem to be aware of cancer-related cognitive dysfunction, is it any wonder that clinicians in their hospital and community practices dismiss their patients’ concerns as frivolous?
Adding another bullet and line of text to this 2008 consent document would take two seconds. But it’s really not about that. It’s about awareness. It’s about leadership.
That wasn’t hard to do. As I told the audience, I know our book has made a difference. Yet I continue to receive letters from patients and former patients telling me that although they now understand what’s happened to them cognitively as a result of treatment, they can’t seem to get their medical teams to take their concerns seriously. A common thread is, they bring up their memory issues with their doctors only to have their worries waved away, dismissed, as if it’s all a figment of the imagination.
To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the American Society of Clinical Oncology (ASCO) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.
So what’s on this form that patients are asked to sign? Basically, it’s a list of all the potential side effects (you'll find the actual document here):
- Nausea/vomiting
- Hair loss
- Low red blood count
- Fatigue
- Risk of infection
- Risk of bleeding
- Constipation
- Diarrhea
- Mouth and throat sores
- Skin effects
- Muscle/bone effects
- Nerve effects
- Kidney/bladder effects
- Sexual effects
- Heart effects
- Lung effects
- Reproductive/fertility effects
- Other
Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and other professionals who care for cancer patients.
And even though ASCO is highly respected and tremendously valuable, at least on this point, it doesn’t seem like it’s doing a very good job. If the professional association that sets standards for oncologists doesn’t seem to be aware of cancer-related cognitive dysfunction, is it any wonder that clinicians in their hospital and community practices dismiss their patients’ concerns as frivolous?
Adding another bullet and line of text to this 2008 consent document would take two seconds. But it’s really not about that. It’s about awareness. It’s about leadership.
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Great post, Idelle. I so wish I'd been able to hear your presentation in Washington last week.
ReplyDeleteThe lack of patient inclusion at ASCO events is an issue of mine and a topic of advocacy across all patient groups, from the Society of Participatory Medicine to those patients suffering from rare diseases. At ASCO's annual conference in June there were even panels on social media....with no patients. There are panels on clinical trials.....with no patients. This needs to change and conversations like yours are one way to begin.
Thanks so much,
Jody
Really, Jody, I had no idea there was such a lack of inclusion, that really does need to change. Knowing the work that advocates like yourself are doing to bring the conversation back to the needs of patients, helps me stick with it too. Thanks so much for all that YOU do.
DeleteIdelle,
ReplyDeleteThank you for attending the conference and for speaking out on this topic. Oddly enough, I don't even remember signing such a consent form before beginning chemotherapy, but I imagine I must have...I wonder if this alone says something! I do believe this particular side effect has been brushed aside and not taken seriously and it's great to see it finally being at least talked about more. Adding possible cognitive effects to the list would be so simple. Might this be yet another example of ignoring emotional/mental well-being issues during cancer treatment as well? I guess they have all the bases covered with the "other" category. Finally, before I started chemo I thought the term/condition chemobrain was sort of a "joke." I certainly know better now. Adding cognitive issues to the list would be yet another way to better prepare/inform the patient. Thanks for writing about this.
Nancy, I used to think that the term, "chemo brain," was a joke too. But that was before there was so much research supporting cancer-related cognitive issues. So many of us do know better now. Thanks so much for your comment!
DeleteYou TELL 'em Idelle..... Can I reprint this with a link to your post on my blog?
ReplyDeleteInterestingly, I did an "interview" in ASCO post..... It appeared in March.
http://www.ascopost.com/issues/march-15-2012/surviving-cancer-means-making-many-difficult-decisions.aspx
You did all of us a tremendous service!
Hi Bud!
DeleteI read your interview in the ASCO post last March and just reread it. Your points that patients need to be made aware of the risks and benefits of treatment and that they are their own best advocate, goes to the heart of what so many of us want for ourselves and for those we love. I'm so glad that you're there and that you keep writing. Of course, feel free to reprint and link, with my appreciation.
Hugs xoxo
It is beyond belief how many times I spoke to my treating physicians about what I'll call "brain fog" since having had chemotherapy. Not one of them responded at all, I got blank looks as if to say "It is only you, maybe you have a screw loose". Only after talking to other survivors was I able to realize that this loss of and impairment of certain brain functions is absolutely real. It has been almost 20 years since my chemo, I thank God for that, but I wonder why the medical community doesn't educate itself to respond better to patients like me who after 20 years still have those effects?
ReplyDeleteHi Barbara,
DeleteI can assure you that you don't have a screw loose (of if you do, it's unrelated to treatment -- a little joke, hope you don't mind (-:) But seriously, your frustration is understandable. So many of us are enormously grateful to be here but we can't understand why our doctors didn't warn us that cognitive issues could happen. That's why comments like yours are important: they help get the word out. Thanks so much!
Hi Idelle,
ReplyDeleteThanks for posting this, and for drawing mine and others' attention to this document. Surely it could use some work, for the reasons you point out, and then some -
Thank you, Elaine, I appreciate your comment, especially knowing your expertise in oncology. It's also good to meet you, at least through my blog. Good luck with your book, "Medical Lessons," and with your writing. I'll follow you on Twitter.
DeleteI remember signing something in the hospital before surgery, but I don't think I signed anything before chemo or rads - I'm in Switzerland tho, so procedures differ. My oncologist and I did talk about brain fog, chemo brain, cognitive effects at length, however, as did my primary care doc. There was agreement that it existed - not much one can about it, but we all knew it was there. At one point, my primary care doc said it was no wonder that I felt strange - chemo "intoxicates your brain".
ReplyDeleteBut now I'm trying to figure out things that will help me. I'm dyslexic, and I've got ADD, so I've always had working memory issues. So I'm working through some ideas....
3lainess, it sounds like you had wonderful, caring doctors who are well-informed about chemo-related memory issues. There are many docs in the U.S. who keep up with the scientific literature too and are equally as attentive to their patients. But I think there needs to be more recognition in terms of public policy. All the best!
DeleteHi Idelle,
ReplyDeleteThanks for your comments and for pointing this out. I agree this is an important omission. I see this model consent form is copyrighted 2008, so it seems that it is due for updating. Let me investigate with ASCO and see how to go about doing that. And I would agree with you that historically medical professionals including oncologists have been slow to recognize the long-term cognitive effects of chemotherapy. I do believe that is changing, as more and more research is being done on the topic, including some studies just presented at the ASCO Annual Meeting in Chicago this month. Two examples would be a study about the effects of chemotherapy on cognitive function in Asian breast cancer patients (http://goo.gl/6w4NJ) and a report on cognitive symptoms in non-Hodgkins lymphoma survivors (http://goo.gl/n39ng). Also, ASCO’s Cancer.Net has some information about chemo brain (http://www.cancer.net/patient/All+About+Cancer/Cancer.Net+Feature+Articles/Side+Effects/Understanding+Chemo+Brain).
Of course, much more work needs to be done in this area, particular in understanding mechanisms of action and prevention. It’s unfortunate that many patients still seem to be facing health care professionals who deny or minimize these types of symptoms, but as I said I am hopeful that greater recognition of the problem will promote better dialogue between oncologists and patients, particularly during those difficult discussions weighing treatment benefits and long-term risks.
Also, as you are probably aware, ASCO recently formed a dedicated committee to promote quality survivorship care (http://chicago2012.asco.org/ASCODailyNews/Survivorshipcommittee.aspx). Ongoing input from survivors and patient advocates would be great.
Dr. Miller,
ReplyDeleteI can’t tell you how much it means to receive your prompt and thoughtful response. And of course, I am aware of many of the studies that are presented at your annual meetings that advance the science in cancer and cognition. I have, in fact, “tweeted” and blogged about many of those abstracts and full texts (including the study on Asian breast cancer patients, which was fascinating to read), and highlights of several ASCO-presented studies appear in our book. So there is no question, at least in my mind, that ASCO is invested in this area of clinical research.
It’s in partnering with patients – the “consumer,” if you will – where I think ASCO needs a helping hand. The omission on the consent form illustrates that gap between research and the patient experience (and I am so pleased that you will look into updating it, thank you), another is as Jody Schoger said above, the lack of patient inclusion at ASCO events.
So I am also pleased to hear that ASCO has formed a committee to promote quality survivorship. Are there patient advocates on that committee? Please let me know if I can help in any way or provide input.
And just FYI, I simultaneously posted this blog article on the Huffington Post where I also report on occasion (there’s usually a wait of a couple days before my articles appear on their website). So feel free to repost your comment there as well.
Thanks so much. It’s so good to know of you and again, I appreciate your response.
And thank you for your reply and your insights as well. Regarding the ASCO Cancer Survivorship Committee, my understanding is that, like most professional organizations, committee membership is restricted to ASCO members, who in most cases are health care professionals or researchers. I do see that Ellen Stovall, Senior Health Policy Advisor at NCCS, is on that committee, and there may be others. I know ASCO does have a Patient Advocates Program at the Annual Meeting, and for this year’s meeting in Chicago earlier this month, “e-Patient Dave” deBronkart was a speaker on a panel discussing leveraging virtual patient communities for clinical care and research. I was in the audience for that session and he was great. But I agree with you, further dialogue and more attention to the patient voice are needed.
DeleteAlso, just to clarify, while I am a volunteer on several ASCO committees, I am speaking here as an individual and not formally as a representative of the organization. However, I will alert them to your blog post and this comment string.
These side effects are unbelievable. I went from being 40-some to feeling 80 some!! My Daughter before one of my surgeries saw the anesthesiologist come back.. after I was out.. He went back in my room to ask me a Question. So she went in there and asked him what do you need? he replied he had to ask me something? My husband & daughter left for I was "out". There's so much I was never told of. I feel like I was tortured and left to die. These side effects are so brutal and disabling.. I just keep thinking there has to be a Better way to a better life. I know I'm alive I feel all of this pain. But I'm still here to live to love another day..
ReplyDeleteThank you for sharing this very important post and bringing to light an important omission in the forms. It's been 2 1/2 years since chemo and I'm just now regaining my memory. As a recruiter (pre-cancer), my memory used to be one of my biggest assets and with chemo, it literally disappeared overnight. Now, it's a big feat when I remember the name of someone's spouse or kids or even where they spent their last vacation. I am happy you are continuing this important conversation.
ReplyDeleteIdelle,
ReplyDeleteThank you for a truly excellent post and very informative about the lack of complete informed consent regarding cognitive impairment due to chemotherapy. I feel so validated. It makes me angry as a patient that nothing was mentioned to me -- orally and in writing -- about this chemo "side effect." I would've still gone through chemo, but I would've been more prepared. I guess nothing really prepares us for all the things that can go wrong during cancer treatment, but as patients, we have the right to know.
And I also wasn't taken seriously by several doctors when I complained about chemobrain. I'm glad it's out in the open, thanks to your book and patient advocacy efforts.
Hi Beth,
ReplyDeleteI can't tell you how often I hear people say just what you said above: they wish they had known so that they would have been more prepared. This lack of knowing and preparing extends to their families too. Spouses, children, parents also wish they had known so that they could have been more understanding and less judgmental of the cancer patient's forgetfulness. It's just like they say that cancer affects the whole family. The same can be said for cognitive issues.
I really appreciate your comment and your support here and on Twitter. Thanks so much for being there and for all the good work (and good writing) that you do for all of us.