Whose Cancer Is It, Anyway?

flying cadeuciiI recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”

She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.

If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.

But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.

First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.

The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.

A couple of years ago I wrote about being bullied.  I wrote about how after almost half a century the memory of being bullied as a child can still bring tears to my eyes. But, as I keep repeating: feelings are not the boss of me! It is time for me to sit with the very uncomfortable, painful feelings of being bullied so that I can move through them and release myself from their pernicious hold.

Dr. G was unprofessional, rude and mean to mock me. But it was the jeering of that girl gang in 1967 that held me back from responding as a mature adult. It was those little girls who had me backed into the corner of a school lavatory who made me apologize to Dr. G for her own bad behavior.

Well then. The problem is defined now and I know what I need to do to resolve it. It won’t be fun and it won’t be pretty, but at the end of the process I will have made significant progress toward being whole, being free, and being at peace with my past and my present.

 “Knot Telling”  is the pseudonym of a retired health care provider who is living with metastatic breast cancer and blogs at www.tellingknots.com. You can follow the author on twitter at @knottellin.

19 replies »

  1. Perry great comment! The physician you are speaking of is an excellent physician advocating for his patient. Sometimes family members forget about their loved one’s wishes and the discomfort they are going through to stay alive. They are telling themselves just as long as “Mom” is lying in the hospital bed hooked to machines then she is still alive and there is still hope. I have experienced this on a personal level and I recognize it as a ICU nurse. It is a very difficult for many to respect their loved ones wishes when they know they will pass on.

  2. “Knot Telling” I am sorry that you had to experience this type of behavior from a health care professional. Dr. G has the legal obligation to provide you with all treatment options and educate you on each of those treatments side effects and outcomes. However, you are your own advocate and it is your right as a patient to make those decisions. Dr. G’s responsibility is to help guide you in the right decision for you. As a health care professional, Dr. G knows that “just because you can, doesn’t mean that you should.”

  3. Ms.Raup:

    “got right in the doc’s face and said, if you lay a hand on her in way that I don’t like, I will make it my mission to destroy you”

    You’re glad when people talk to each other like that?

    Having been in a similar situation with a dying parent (where it was not known that I was a doc), I found respectful, polite communication very helpful.

    I guess you would rather threaten people.

  4. My goodness! Talk about crossing limits!

    There has been so good talk among my colleagues about how labeling patients affects the way we treat them. If someone is a “troublemaker”, we don’t bother to hear them out. We just cut them off and give them ultimatums. But if someone is “knowledgeably and assertively involved in their care” we listen to their concerns and discuss (or argue) the issues with them. All too often patients are considered troublemakers and my gut tells me that the label falls more frequently on women than men.

  5. @Knot I’m sorry Dr. G acted so inappropriately. I am a breast cancer survivor. My cancer was stage 1 and I’m at low risk of recurrence, but even in those circumstances I experienced bullying from oncologists.

    My first oncologist is nationally prominent and is the head of one of our local cancer centers in Washington, DC. She saw patients one morning a week. She recommended that I take tamoxifen for 5 years. I was just reaching menopause at the time of my diagnosis and she had a concern that an aromatase inhibitor might not work for me. I decided to switch oncologists, primarily because when I had questions I was not allowed to speak to my doctor. Everything had to be screened by her nurse practitioner and I did not have any faith in what the NP was telling me. She seemed to view her primary job as keeping the oncologist’s patients from bothering the oncologist.

    Anyway, I switched to a different oncologist. Things were ok at first, then one day he announced that he would be switching me to an aromatase inhibitor. I told him I was not inclined to switch, for several reasons (the reasons are not particularly important to this discussion). He was rude and abrasive during this discussion. Later he called me at work and harangued me. At one point he literally was shouting that if I stayed on tamoxifen, “You could have a stroke!” After that experience, I decided to switch oncologists again.

    I made an appointment with an oncologist at Lombardi Cancer Center at Georgetown. During our initial visit, the oncologist told me that if I was going to be his patient, “You will have to be on an aromatase inhibitor.” I told him that in that case I was not inclined to become his patient.

    I made an appointment to see another oncologist at Georgetown, who had no problem with my taking tamoxifen. I feel I was put through unnecessary stress due to the arrogance and paternalistic attitudes of the two previous oncologists.

    Another story about the second oncologist. He was also my sister’s primary care physician. He knew that she was my sister. He told her that she needed to take me off her advance directive or he could not continue as her doctor. In addition, he told her that if she did not take me off her advance directive, he would write a note to her next physician about how I was a troublemaker. My sister is disabled and I am her only relative in the area. For her doctor to interfere with our relationship seems very inappropriate. I also heard from one of my sister’s health care providers that the oncologist had bad-mouthed me. I ended up writing him a letter, which I copied to his two partners, telling him that his unauthorized discussions about me appeared to be a violation of HIPAA and that if I heard about any more such discussions, I would be filing a complaint with the Office for Civil Rights of the Department of Health and Human Services.

  6. I’m sad to hear how common doctor bullying is. I’m retired now, but I like to think I was never like that to my patients.

    @Vik Khanna: Thanks for the supportive words. After a decade with bone mets, I’m pretty much done with this. For the present, at least, I’m sticking to palliative treatment. Should symptoms indicate soft organ metastasis, I may revisit the issue, but it will most certainly not be with Dr. G.

    @BobbyGvegas I am deeply sorry for the loss of your daughter. She was very fortunate to such an understanding parent at her side.

    @Bubba For President: Dr. G has been my oncologist for a decade. She has accompanied me from first diagnosis, through the diagnosis of metastasis until the appointment I refer to in this post. Until then I had always agreed with her treatment, so this issue never came up, and we had a reasonably pleasant relationship, certainly not an adversarial one.

    Unfortunately, many oncologists–thankfully, not the majority–are power trippers. Since publishing this post I have heard a large number of similar stories from other patients.

    Thank you all for reading my post and taking the time to comment on it.

  7. http://www.ipmdoctors.com/ know that pain interferes with every aspect of your life. We have put our years of experience and success into this practice and its patients. We approach each case with enthusiasm for discovering the roots of the pain and the most appropriate of our many treatment protocols.

  8. Why is following a patient’s wishes brave? It’s hard to face a emotional family member, and I’ve seen physicians cave to that pressure, especially to buy time to let family adjust. Not necessarily the nicest thing to do to the patient just to make the family members feel better.

  9. “I know you don’t want him to die but I’m his doctor not yours. I know he didn’t want to be on a ventilator because we talked about it. I have to remove it because that’s what he wants.” He was firm but kind – the best, most lovely thing I ever saw a physician do in one of those difficult situations. He’s my doctor now – hope he’s still around when I need him to tell my family the same thing!

    Also a very brave thing to say in this litigious climate.

  10. Vik, I’m glad you were able to get your mother’s wishes known because you were there. I often saw the opposite, however, in families who weren’t prepared for those situations. Sometimes family members arguing, making it hard for clinicians. But my favorite memory was a man with end-stage lung disease who had been admitted and intubated after his wife called 911. His doctor said to his very distraught wife, and said it very respectfully, “I know you don’t want him to die but I’m his doctor not yours. I know he didn’t want to be on a ventilator because we talked about it. I have to remove it because that’s what he wants.” He was firm but kind – the best, most lovely thing I ever saw a physician do in one of those difficult situations. He’s my doctor now – hope he’s still around when I need him to tell my family the same thing!

  11. Sorry, I guess I did not get the memo that I was supposed to fawn at the feet of some overzealous, overpaid technician who was up in the middle of the night (which is exactly what she is richly compensated to do…her job) and who made not an iota of effort to ask me, the son who had power of attorney and my mother’s authority to direct her care, whether my mother had expressed wishes about what ought to be done.

    This entire conversation happened as the “care team” was conversely openly about whether to intubate my mother.

    No, instead, I should have played along with the script, right? She hews to convention, which is idiotic on its face, instead of thinking, gee, maybe I ought to see what this son, who is obviously deeply concerned about the status of his surviving parent (and last blood relative in this country), can tell about what he and mom have discussed. Life is not TV show where you follow the script. What do you suppose happens if I get to the CCU 10 minutes later after my mom is intubated AGAINST all her expressed wishes, including what was written in her medical directive, which was in my hands? Think they take the tube out and say, hey, maybe we shouldn’t have done that? I doubt it.

    You’re damn right I’ve got issues.

  12. Attending cardiologist up in the middle of the night to care for your mother, and makes a conventional, innocuous statement like that, and you rip her head off like that?

    You’ve got issues.

  13. @Knot

    Thank you for sharing this —

    At the risk of prying, this sounds like a very odd encounter – can you tell us a little more about your experience with Dr. G to the extent that you are comfortable doing so? Avoidig the unpleasantries, what did Dr. G say when she called?

  14. At around 1 am on Y2K, my mom suffered a simultaneous stroke and MI. Shortly after admission to the CCU, she had another MI, and the attending cardiologist did not expect her to survive the night.

    The physician told me that they were prepared to “do everything,” to which I said — simply, but unmistakably — no, actually, you won’t. My mom had suffered greatly in her life and she was ready to go and join my father. I got right in the doc’s face and said, if you lay a hand on her in way that I don’t like, I will make it my mission to destroy you, and I will succeed. Pain relief, supportive care. Nothing else.

    She hung on for a few days, but then got the relief she sought so desperately. I wouldn’t change a thing I said or did, and I would repeat it for anyone of my family or friends who empower me to act on their behalf.

  15. OMG! That is terrible.

    After 26 months of cancer hell, my late daughter just decided “enough.” Nurse came in with her chemo shot one morning, Sissy just pushed her hand away, and said “I’m not doin’ this shit any more.”

    She died 3 weeks later. Everyone understood.

  16. Shortly after she suffered from a stroke, a doctor on Long Island said to my mother: if you don’t take this medicine, you’ll end up a “drooling vegetable and spend the rest of your life in a wheelchair”

    She literally spent weeks lying awake at night in terror and eventually sufffered a minor heart attack

    Alive and well and feisty to this day, she tells the story to every new doctor she sees.

  17. Good comment, Dr. Khanna,

    I just posted your post on FB. This needs wider exposure.

    I’m interested to read the response to this message as well.

    Terry Gross did an interview this week with someone researching microbiomes. He described efforts to preserve vanishing microbes in an “archive” before they become extinct as the result of widespread use of broad-spectrum antibiotics.

  18. Next time you need to see the buffoon masquerading as a doctor, let me know. I’ll go with you. Dr. G needs to hear a different perspective.

    Doctors are vendors. I wouldn’t let the guy who services my sprinkler system talk to me in the manner described here, why would anyone let a doctor do it?

    To the extent that you have the strength and energy, replace this chemo-village idiot.