Questions about Patient-Doctor Relationships within our community - 1247625

Mon, 09/03/2012 - 15:21

I just wrote a post about the changing roles of patients and doctors due to the presence of online communities as a new "third party" in the exam room:

http://cancergrace.org/cancer-101/2012/09/03/internet-as-third-party-ch…

I feel that the way we collect information has changed faster than our societal roles. I just wanted to get some thoughts from people here about how they work with their doctor(s). If you've had situations in which you're bringing in new information, is that welcomed, or did you feel that the doctor was defensive about it? Do/did you feel that, if you do provide information found online that your own doctor wasn't aware of, did that lower your esteem for the doctor?

Do you feel that the doctor's role is to know everything worth knowing?

-Dr. West

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apat33

I don't believe any one man can know all there is to know about cancer, too many changes are being made daily. A physician could read from morning to night, have no time for patients & still not keep up. That's why I find so exciting their testing that I B M Jeopardy computer in cancer treatment. Hopefully in a short time you'll be able to punch in a question & have the latest most updated info. to aid you on your decisions.

Andy

Dr West

That's another big question. Vinod Khosla made big news when he prominently stated this week that he looked forward to doctors becoming obsolete when computers can do a better job...suggesting that this isn't way off in the future. I do think that there's a lot that computers and artificial intelligence could help us with, but I also feel that if there is any area of medicine that requires a huge amount of judgment and nuance, based on individual case scenarios from which we need to make creative, reasoned judgments rather than draw from hard evidence, it's oncology. I just can't foresee IBM's Watson doing most of my job...though if it could fill out insurance paperwork for me, I would welcome it without reservation.

-Dr. West

njliu

With better informed patients, doctors could be spared some time in explaining the case and thus be facilitated to deliver the treatments with good understanding, cooperation and confidence from the patients and care givers. The doctors' role is to provide the expertise to guide the patient in overcoming his ailment and deliver the best treatment of choice to the patients. While the information available on line helps to keep the doctors on the toes, it does not serve to undermine his expected authority over the best treatment.

double trouble

I think one of the reasons patients should educate themselves about their own health problems is because our doctors can't be expected to be on top of all of the advances in health care. They are very smart and dedicated, but still human, and have lives of their own going on. I don't expect my physicians to remember everything about my case from visit to visit either, and help them with the review as needed. I feel like my physicians are directing me in my decision making, and I don't always agree with them. I appreciate a doctor who is willing to talk these doubts through, and who will correct me on pronunciation and details that I don't quite understand. I think of it as a partnership. In days (long) past doctors were considered M Deities. We blindly followed their every recommendation. That was a simpler time. And they are humans, not Gods. And the best relationship is one in which the respect goes both ways.
Debra

apat33

I see no reason, Watson, artificial intelligence, in any way has to replace a doc or any tasks of a doc. What I envision is you, punching in questions. What does xyz drug vs xxx drug do in such & such cancer. Your screen would fill with the latest information, studies, toxicity whatever. All this to help you make the most informed decision with the most up to date information based on your judgment. I submit there's no way you can keep up to date on the latest developments from around the world. A Watson could give you this information to guide your decisions, not dictate them.

Andy

bh

I second what Debra has said. You have been my rock this past year and no computer could take the place of this forum. That said, to answer your question, mom's onc looks awfully young and that did raise some doubts in my mind initially though the doc herself has made mention that she is around 40. I asked her about the mutation testing because I had read about it on this forum and the doc was very receptive to it. It reassured me that she knew about the tests but had not thought of doing the tests at that stage as mom had recently been diagnosed. Even before chemo was started, mom was tested for both mutations, thanks to GRACE. The onc has been very open to suggestions and I have even emailed articles I have read on this forum.

certain spring

I find this subject really difficult. In fact it was my first question on GRACE:
http://cancergrace.org/forums/index.php?topic=10276.0;wap2
Interestingly, it was interpreted as a question about personal chemistry, whereas in retrospect I think it was on this very topic: the balance of knowledge between doctor and patient in the internet age.
What Debra and others have said makes perfect sense, but it is not my experience, sadly. I don't feel I am in a partnership with any of my doctors, although some of them are lovely people and obviously very good at what they do. In general, I find doctor-patient relationships very paternalistic, which I suspect reflects the rather feudal nature of medical training, and perhaps also the way health care is organised in the UK. I conceal the extent of my knowledge, partly because much of it is irrelevant (no point in talking about drugs or trials that aren't available in this country), but also because I do not want them to know that I know they are occasionally wrong. It would shatter the basis of the relationship, and unless I change doctors (or they leave), I am in that relationship until I die. Similarly I suspect a couple of my doctors realise that I am better informed than they might expect, but it isn't acknowledged because that isn't in the script. The script is that I have things done to me: I have MRIs and scans, I sign consent forms and take my shirt off so they can listen to my breathing.
The exception is my GP (primary care doctor), who - perhaps because she is a generalist by definition - has no hang-ups and said to me at the outset: "I don't know much about cancer drugs, but I can make people talk to one another." She is willing to try new things, including suggestions I bring in from GRACE, and she is prepared to get on the phone and make things happen for me. I for my part have learned that all the knowledge in the world is no use without the ability to make the system work for you.

Dr West

certain spring,

You are always so remarkably articulate. On behalf of the medical world, I'm sorry you need to suppress what you know and play a role. But the world is changing very quickly..faster than the styles of almost anyone who has been practicing medicine for more than the last decade. The reason this is an interesting and difficult question is entirely because we are all needing to adapt to rapidly changing roles and dynamics.

-Dr. West

certain spring

Dr West, please don't feel you have to take responsibility for the medical world! And it isn't all one-way. I am complicit in the paternalism - there is a part of me, deep down inside, that would probably have liked some grey-haired professor (male) to tell me what's what. There are two sides to the partnership equation: the patient has to get over the 'myth', as you put it, that their doctor is omniscient; and the doctor needs to stop trying to enact the myth. I agree with everyone who says that you can't expect a general/community oncologist to keep up with every development in lung cancer. And I know my oncologist takes suggestions from colleagues. I would just like to contribute something occasionally without feeling as if a unicorn walked into the clinic.
I think when the illness is acknowledged to be terminal, there is a substratum of fear which makes it hard to negotiate with or challenge the person who's treating you. I am sure that if my husband were the patient, I would be using my knowledge far more assertively. But I do not like to tangle with people who are symbolic figures in my psyche (healers/angels of death), as well as professionals doing the job they trained for many years to do.