OP-ED

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.

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Cassie StegemanMarilyn MannKnot Tellingjack danielPerry Recent comment authors
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Cassie Stegeman
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Cassie Stegeman

“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.”

Marilyn Mann
Guest
Marilyn Mann

@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… Read more »

Knot Telling
Guest

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.

Knot Telling
Guest

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… Read more »

jack daniel
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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.

Perry
Guest
Perry

“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.

Sandra Raup
Guest

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.

Vik Khanna
Guest

That physician acted with integrity, compassion, and honesty. Lost values in our healthcare system.

Cassie Stegeman
Guest
Cassie Stegeman

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.

Bubba For President
Guest
Bubba For President

@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?

userlogin
Editor

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.

@BobbyGvegas
Guest

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.

Vik Khanna
Guest

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,… Read more »

Granpappy Yokum
Guest
Granpappy Yokum

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.

Vik Khanna
Guest

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,… Read more »

Sandra Raup
Guest

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… Read more »

Granpappy Yokum
Guest
Granpappy Yokum

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.

Vik Khanna
Guest

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.

John Ballard
Guest

Good comment, Dr. Khanna,

I just posted your post on FB. This needs wider exposure.
http://khannaonhealthblog.com/2014/04/15/health-care-renewal-planned-obsolescence-disguised-as-innovation-oligopoly-disguised-as-a-free-market-and-the-enrichment-of-oligarchs/

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.