Focus on Quality
Perspective
Is It OK to Fire My Oncologist? By Stephanie Roberson Barnard Listen Write Present LLC; atHand Medical, Wilson, NC
Copyright © 2014 by American Society of Clinical Oncology
patients often have chemotherapy in a common room, but these little privacy breaches add up. My anger floats around me, unacknowledged. What I really want is accountability from Dr Clarke, without prompting, such as, “Stephanie, I’m so sorry it took over six weeks for your Oncotype results. That’s unacceptable. It must have been stressful for you.” In reality, he doesn’t even acknowledge the results, not even to say how pleased he is. This visit leaves my mouth bitter, like the tamoxifen he prescribed for me. My next appointment, a goserelin injection that will shut down my ovaries, becomes a farcical affair: the phlebotomist has to redraw my blood, the physician’s assistant is unprepared to counsel me, and they put the wrong name on my informed consent papers! Ordinarily infractions like these would not bother me. Today they’re maddening because they highlight a lack of detail. These people are not taking good care of me. Even more annoying is that nobody can answer my primary questions: When will the medicine start working? and How long will I have to take these shots? While we wait for a new consent form, David and I sit in the hallway outside the chemotherapy lab, next to a feeble older woman vomiting into a plastic rose-colored kidney dish. A nurse loudly asks her, “Do you think you need fluids?” Of course she needs fluids. And you don’t need to yell, she’s right here. I want to speak up for her but I feel like a voyeur peeking behind her privacy curtain. The highlight of this debacle is when Nurse Amy comes out to the public hallway where we’re seated in folding chairs and loudly says, “You might want to get financial aid for this injection.” “Excuse me?” asks David. “We’ve met our copay, so our insurance should cover it.” “Oh you’re good for this year,” says Amy. “I’m talking about next year when your deductible starts over again. Our social worker can help you with your $2,700 copay,” she says knowingly. “You have to pay that out-of-pocket.” “Right,” says David patiently. “The $2,700 is from our HRA.” “It’s an expensive shot,” Amy continues. Do we look like morons? “So how much Is it?” I ask “I don’t know.” “Can you find out?”
M A R C H 2014
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Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
Dr Clarke’s reception area is a bus station overseen by an unsmiling attendant behind a glass window. Dark wood chairs, upholstered in black vinyl, stand in rows with their arms pressed together. The requisite TV hangs on the wall—no remote in sight— blaring Dr Phil. A collection of outdated magazines, their covers mangled, are forced into a rack. This past month has been a tornado, ripping through my life, shredding everything. First I was diagnosed with breast cancer. Then I had bilateral mastectomies with reconstruction. The day my last surgical drain tubes were removed, I was admitted to the hospital with a staph infection. I stayed a week, tethered to a vancomycin drip, and underwent emergency surgery to remove the tissue expanders. Now I sit with my husband, David, in Dr Clarke’s waiting room, flat-chested and deflated, praying for good news. When we finally get to see the oncologist, he admits he doesn’t have the expected results of the OncotypeDX test that determines the odds for cancer recurrence. “Someone forgot to send the tumor,” he says. What? “I see,” I respond, agog. “I’m sorry about the mix-up. It’s my fault . . . well actually it’s not my fault.” “So when can we expect them?” “They’re shipping your tumor today, so it should take about two weeks,” he says, as if that will make it all better. We wait the 2 weeks and then another 2 weeks. When I call to check in, one nurse doesn’t know what an Oncotype is, and another fibs about checking on it. I’m starting to get angry. If I’d gotten my results in a timely fashion, and I needed chemotherapy, I’d be halfway done! Instead, my family is stuck in a holding pattern, postponing life while we circle and wait for clearance. Finally, after six-and-a-half weeks of waiting, Dr Clarke calls with the results: no chemotherapy. Whew! At my next appointment, as I wait for him to read my laboratory results, my emotions churn. I might erupt into tears. I’m mad at this crowd, and my anger critiques their every move. Why doesn’t the receptionist smile? I smile at her, and I have cancer! Why didn’t the ladies in the lab introduce themselves? I introduced myself to them, and they just stared at me! Why doesn’t anyone tell me what to do next? When I inquire, I feel like I’m interrupting. The office’s inefficient design is confusing and intrusive: they weigh you and dole out shots in the main hall with other patients sitting next to you. The hollow-core doors to the treatment rooms offer no sound barrier. I realize that oncology
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•
pop some ibuprofen—my head is throbbing—and burst into tears. I stew about my experiences in Dr Clarke’s office for days. He’s a nice guy, seems competent, and I want to do business with him. So why do I feel like screaming, “Hey people: Look at somebody when you talk to them! How about reading my chart before you counsel me? Bathrooms are not sanitary enough for medical procedures! HIPAA laws dictate that you should not talk about my finances in the hallway!” I don’t want to be tagged as a “difficult patient,” so I tolerate these indiscretions, and my blood pressure steams like black asphalt on a freshly-paved road. I spend the next few days contemplating what to do, arguing both sides in my head: Stay, it’s only a few visits a year. Go, run like hell to another doctor! I ask David his opinion. He says the choice is up to me, and he’ll support whatever I decide. I decide to fire my oncologist. Now all I have to do is tell him. I’m so torn up about this decision that I ask David to speak with them if they ask why—not my normal behavior. I’ve always been able to handle tough conversations. I was the kid who made hair appointments for friends who were too chicken to call. How did I get this way? Damn you, cancer. Isn’t taking my boobs enough? Do you have to attack my confidence, too? I dial the phone. Time to snatch off this Band-Aid and get on with my life. “Hello, Dr Clarke’s office.” “Hi. This is Stephanie Barnard. I need to cancel some appointments.” I’m deliberately brief, which takes great effort. “You have two appointments coming up. Do you want to reschedule?” “No.” “Hold on a minute.” “Hello, this is Amy. You want to cancel your appointment for the goserelin injection?” “That’s right.” “Do you realize that you really need this shot?” “Yes.” I’m doing well with short answers. I should do this more often! “May I ask why?” Great. Here we go. “I’m changing oncologists.” “Oh. Can you hold on for a minute?” “Sure.” “Dr Clarke wants to talk with you.” Oh joy—David’s on a conference call—I’m it. “Hello Stephanie, this is Dr Clarke. Is everything okay?” “Yes.” “May I ask why you’re leaving?” I feel the stories rising from my body and collecting like mercury in the back of my mouth. I take a deep breath and start to expel them. “I have several reasons,” I say. “First, six weeks for Oncotype test results is unacceptable. Somebody in your practice should have checked on my labs.” Then the examples flow: “You might want to implement a training program for your staff.” “I un-
V O L . 10, I S S U E 2
Copyright © 2014 by American Society of Clinical Oncology
Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
“It depends on what your insurance pays,” says Nurse Amy. “We don’t get reimbursed for what we charge. We get paid what they negotiate.” She obviously has no idea that David’s job is negotiating contracts in the pharmaceutical industry. “I understand,” I say. “But there’s a heck of a difference between a $200 shot and a $2,000 one.” David and I give up and go home. The next day I arrive for my noon appointment to find the PA and front office staff chatting. I wait for a break in the conversation and ask where to go. They send me to the folding-chair hallway to wait. After 20 minutes, I’m restless. I can see Nurse Amy talking in the chemo lab. Even though she waves to me, I’m worried that I’ll be late for my next appointment and then late to pick up from school. My anger rises, and I mutter to the gentleman sitting next to me: “I’ve got another appointment at 1:00,” as if that will help. Finally, Nurse Amy arrives to take my vitals. Everything is normal except my blood pressure, which is 198/98! She explains that my BP is too high, as in “potential stroke victim.” That’s weird because it’s normally low. “Maybe you need to get The Man,” I say, referring to Dr Clarke. “He’s at a Tumor Board meeting,” she says. Aha! Now I know why nobody’s working! “Are you nervous about the shot?” “No. I’m a little stressed. I have another appointment at 1:00 and school pick-up at 2:30. I’m worried I’ll be late.” “Well if everyday life is causing you this much anxiety, that’s bad.” What did she just say? I don’t live an “everyday life.” I’m being treated for CANCER! I’m worried I might die! I’m in an oncology practice surrounded by sick people and incompetent staff! I have two young daughters! You’re about to give me an injection that will initiate menopause about 10 years early, so if my BP is high right now, it might be your fault! “Well this is my least favorite office,” I say. Oops. Did I just say that out loud? Great. Now I’ve hurt her feelings. I try to explain away her shocked expression: “I mean, it’s just not fun to go to the oncologist.” She politely leaves me to prepare the injection. I attempt to calm down with deep breathing. Amy returns and says, “Follow me to the bathroom.” Did I hear that right? Follow her where? I get up and follow her—into the BATHROOM! Yes, she’s going to administer an injection that’s so expensive people seek financial aid to afford it, IN THE BATHROOM! Holy cow! I’m a patient who’s obviously susceptible to deadly infectious diseases, and I’m stressed to the point of having a ministroke. So the solution is to take me into an unsanitary bathroom for an injection? Since Dr Clarke’s out, aren’t the treatment rooms empty? What would the Joint Commission say about this? I’m completely dumbfounded so I comply by sitting on the portable potty seat—I promise this is a true story!—as she sprays topical freeze spray on my abdomen and sticks in the needle. On my way out, the PA stops chatting to ask me how it went. “It was fine,” I say. Then I drive to my next appointment, park,
Is It OK to Fire My Oncologist?
Author’s Disclosures of Potential Conflicts of Interest Although all authors completed the disclosure declaration, the following author(s) and/or an author’s immediate family member(s) indicated a
Copyright © 2014 by American Society of Clinical Oncology
financial or other interest that is relevant to the subject matter under consideration in this article. Certain relationships marked with a “U” are those for which no compensation was received; those relationships marked with a “C” were compensated. For a detailed description of the disclosure categories, or for more information about ASCO’s conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors. Employment or Leadership Position: Stephanie Roberson Barnard, Listen Write Present LLC (C), atHand Medical (C), Eli Lilly & Co. (C) Consultant or Advisory Role: Stephanie Roberson Barnard, ConvenePro for AstraZeneca (C) Stock Ownership: Stephanie Roberson Barnard, Eli Lilly & Co. Honoraria: None Research Funding: None Expert Testimony: None Patents, Royalties, and Licenses: None Other Remuneration: None Corresponding author: Stephanie Roberson Barnard, Listen Write Present LLC, 2206 Greenwich Ln NW, Wilson, NC 27896; e-mail: [email protected].
DOI: 10.1200/JOP.2013.001243; published online ahead of print at jop.ascopubs.org on January 21, 2014.
M A R C H 2014
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jop.ascopubs.org
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Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
derstand you’re building a new office, but in the meantime, you need to protect your patients’ privacy.” “You should make a list of the top ten oncology drugs, and instruct your PA to learn them inside-out.” “That vomiting woman just needed somebody to take care of her.” And the pie`ce de re´sistance: “It’s never okay to administer an injection in the bathroom.” Poor Dr Clarke. He’s a quiet man, and this lesson has sucked out any viable excuses. It’s clear that his employees supervise him, and my dissatisfaction is a surprise. “Wow. I’m sorry,” he says when I finally stop talking. “Thank you for sharing with me.” Now I feel bad for jumping into consultant mode. I hang up the phone and report to David, who says, “You did the right thing, Steph. Somebody needed to tell him. You’ve done him a favor.” OK. Maybe it was a public service. That poor barfing woman didn’t have anybody to speak up for her. I’m glad I spoke up for both of us.
Perspective
Is It OK to Fire My Oncologist? By Stephanie Roberson Barnard Listen Write Present LLC; atHand Medical, Wilson, NC
Copyright © 2014 by American Society of Clinical Oncology
patients often have chemotherapy in a common room, but these little privacy breaches add up. My anger floats around me, unacknowledged. What I really want is accountability from Dr Clarke, without prompting, such as, “Stephanie, I’m so sorry it took over six weeks for your Oncotype results. That’s unacceptable. It must have been stressful for you.” In reality, he doesn’t even acknowledge the results, not even to say how pleased he is. This visit leaves my mouth bitter, like the tamoxifen he prescribed for me. My next appointment, a goserelin injection that will shut down my ovaries, becomes a farcical affair: the phlebotomist has to redraw my blood, the physician’s assistant is unprepared to counsel me, and they put the wrong name on my informed consent papers! Ordinarily infractions like these would not bother me. Today they’re maddening because they highlight a lack of detail. These people are not taking good care of me. Even more annoying is that nobody can answer my primary questions: When will the medicine start working? and How long will I have to take these shots? While we wait for a new consent form, David and I sit in the hallway outside the chemotherapy lab, next to a feeble older woman vomiting into a plastic rose-colored kidney dish. A nurse loudly asks her, “Do you think you need fluids?” Of course she needs fluids. And you don’t need to yell, she’s right here. I want to speak up for her but I feel like a voyeur peeking behind her privacy curtain. The highlight of this debacle is when Nurse Amy comes out to the public hallway where we’re seated in folding chairs and loudly says, “You might want to get financial aid for this injection.” “Excuse me?” asks David. “We’ve met our copay, so our insurance should cover it.” “Oh you’re good for this year,” says Amy. “I’m talking about next year when your deductible starts over again. Our social worker can help you with your $2,700 copay,” she says knowingly. “You have to pay that out-of-pocket.” “Right,” says David patiently. “The $2,700 is from our HRA.” “It’s an expensive shot,” Amy continues. Do we look like morons? “So how much Is it?” I ask “I don’t know.” “Can you find out?”
M A R C H 2014
•
jop.ascopubs.org
151
Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
Dr Clarke’s reception area is a bus station overseen by an unsmiling attendant behind a glass window. Dark wood chairs, upholstered in black vinyl, stand in rows with their arms pressed together. The requisite TV hangs on the wall—no remote in sight— blaring Dr Phil. A collection of outdated magazines, their covers mangled, are forced into a rack. This past month has been a tornado, ripping through my life, shredding everything. First I was diagnosed with breast cancer. Then I had bilateral mastectomies with reconstruction. The day my last surgical drain tubes were removed, I was admitted to the hospital with a staph infection. I stayed a week, tethered to a vancomycin drip, and underwent emergency surgery to remove the tissue expanders. Now I sit with my husband, David, in Dr Clarke’s waiting room, flat-chested and deflated, praying for good news. When we finally get to see the oncologist, he admits he doesn’t have the expected results of the OncotypeDX test that determines the odds for cancer recurrence. “Someone forgot to send the tumor,” he says. What? “I see,” I respond, agog. “I’m sorry about the mix-up. It’s my fault . . . well actually it’s not my fault.” “So when can we expect them?” “They’re shipping your tumor today, so it should take about two weeks,” he says, as if that will make it all better. We wait the 2 weeks and then another 2 weeks. When I call to check in, one nurse doesn’t know what an Oncotype is, and another fibs about checking on it. I’m starting to get angry. If I’d gotten my results in a timely fashion, and I needed chemotherapy, I’d be halfway done! Instead, my family is stuck in a holding pattern, postponing life while we circle and wait for clearance. Finally, after six-and-a-half weeks of waiting, Dr Clarke calls with the results: no chemotherapy. Whew! At my next appointment, as I wait for him to read my laboratory results, my emotions churn. I might erupt into tears. I’m mad at this crowd, and my anger critiques their every move. Why doesn’t the receptionist smile? I smile at her, and I have cancer! Why didn’t the ladies in the lab introduce themselves? I introduced myself to them, and they just stared at me! Why doesn’t anyone tell me what to do next? When I inquire, I feel like I’m interrupting. The office’s inefficient design is confusing and intrusive: they weigh you and dole out shots in the main hall with other patients sitting next to you. The hollow-core doors to the treatment rooms offer no sound barrier. I realize that oncology
Stephanie Roberson Barnard
152
JOURNAL
OF
ONCOLOGY PRACTICE
•
pop some ibuprofen—my head is throbbing—and burst into tears. I stew about my experiences in Dr Clarke’s office for days. He’s a nice guy, seems competent, and I want to do business with him. So why do I feel like screaming, “Hey people: Look at somebody when you talk to them! How about reading my chart before you counsel me? Bathrooms are not sanitary enough for medical procedures! HIPAA laws dictate that you should not talk about my finances in the hallway!” I don’t want to be tagged as a “difficult patient,” so I tolerate these indiscretions, and my blood pressure steams like black asphalt on a freshly-paved road. I spend the next few days contemplating what to do, arguing both sides in my head: Stay, it’s only a few visits a year. Go, run like hell to another doctor! I ask David his opinion. He says the choice is up to me, and he’ll support whatever I decide. I decide to fire my oncologist. Now all I have to do is tell him. I’m so torn up about this decision that I ask David to speak with them if they ask why—not my normal behavior. I’ve always been able to handle tough conversations. I was the kid who made hair appointments for friends who were too chicken to call. How did I get this way? Damn you, cancer. Isn’t taking my boobs enough? Do you have to attack my confidence, too? I dial the phone. Time to snatch off this Band-Aid and get on with my life. “Hello, Dr Clarke’s office.” “Hi. This is Stephanie Barnard. I need to cancel some appointments.” I’m deliberately brief, which takes great effort. “You have two appointments coming up. Do you want to reschedule?” “No.” “Hold on a minute.” “Hello, this is Amy. You want to cancel your appointment for the goserelin injection?” “That’s right.” “Do you realize that you really need this shot?” “Yes.” I’m doing well with short answers. I should do this more often! “May I ask why?” Great. Here we go. “I’m changing oncologists.” “Oh. Can you hold on for a minute?” “Sure.” “Dr Clarke wants to talk with you.” Oh joy—David’s on a conference call—I’m it. “Hello Stephanie, this is Dr Clarke. Is everything okay?” “Yes.” “May I ask why you’re leaving?” I feel the stories rising from my body and collecting like mercury in the back of my mouth. I take a deep breath and start to expel them. “I have several reasons,” I say. “First, six weeks for Oncotype test results is unacceptable. Somebody in your practice should have checked on my labs.” Then the examples flow: “You might want to implement a training program for your staff.” “I un-
V O L . 10, I S S U E 2
Copyright © 2014 by American Society of Clinical Oncology
Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
“It depends on what your insurance pays,” says Nurse Amy. “We don’t get reimbursed for what we charge. We get paid what they negotiate.” She obviously has no idea that David’s job is negotiating contracts in the pharmaceutical industry. “I understand,” I say. “But there’s a heck of a difference between a $200 shot and a $2,000 one.” David and I give up and go home. The next day I arrive for my noon appointment to find the PA and front office staff chatting. I wait for a break in the conversation and ask where to go. They send me to the folding-chair hallway to wait. After 20 minutes, I’m restless. I can see Nurse Amy talking in the chemo lab. Even though she waves to me, I’m worried that I’ll be late for my next appointment and then late to pick up from school. My anger rises, and I mutter to the gentleman sitting next to me: “I’ve got another appointment at 1:00,” as if that will help. Finally, Nurse Amy arrives to take my vitals. Everything is normal except my blood pressure, which is 198/98! She explains that my BP is too high, as in “potential stroke victim.” That’s weird because it’s normally low. “Maybe you need to get The Man,” I say, referring to Dr Clarke. “He’s at a Tumor Board meeting,” she says. Aha! Now I know why nobody’s working! “Are you nervous about the shot?” “No. I’m a little stressed. I have another appointment at 1:00 and school pick-up at 2:30. I’m worried I’ll be late.” “Well if everyday life is causing you this much anxiety, that’s bad.” What did she just say? I don’t live an “everyday life.” I’m being treated for CANCER! I’m worried I might die! I’m in an oncology practice surrounded by sick people and incompetent staff! I have two young daughters! You’re about to give me an injection that will initiate menopause about 10 years early, so if my BP is high right now, it might be your fault! “Well this is my least favorite office,” I say. Oops. Did I just say that out loud? Great. Now I’ve hurt her feelings. I try to explain away her shocked expression: “I mean, it’s just not fun to go to the oncologist.” She politely leaves me to prepare the injection. I attempt to calm down with deep breathing. Amy returns and says, “Follow me to the bathroom.” Did I hear that right? Follow her where? I get up and follow her—into the BATHROOM! Yes, she’s going to administer an injection that’s so expensive people seek financial aid to afford it, IN THE BATHROOM! Holy cow! I’m a patient who’s obviously susceptible to deadly infectious diseases, and I’m stressed to the point of having a ministroke. So the solution is to take me into an unsanitary bathroom for an injection? Since Dr Clarke’s out, aren’t the treatment rooms empty? What would the Joint Commission say about this? I’m completely dumbfounded so I comply by sitting on the portable potty seat—I promise this is a true story!—as she sprays topical freeze spray on my abdomen and sticks in the needle. On my way out, the PA stops chatting to ask me how it went. “It was fine,” I say. Then I drive to my next appointment, park,
Is It OK to Fire My Oncologist?
Author’s Disclosures of Potential Conflicts of Interest Although all authors completed the disclosure declaration, the following author(s) and/or an author’s immediate family member(s) indicated a
Copyright © 2014 by American Society of Clinical Oncology
financial or other interest that is relevant to the subject matter under consideration in this article. Certain relationships marked with a “U” are those for which no compensation was received; those relationships marked with a “C” were compensated. For a detailed description of the disclosure categories, or for more information about ASCO’s conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors. Employment or Leadership Position: Stephanie Roberson Barnard, Listen Write Present LLC (C), atHand Medical (C), Eli Lilly & Co. (C) Consultant or Advisory Role: Stephanie Roberson Barnard, ConvenePro for AstraZeneca (C) Stock Ownership: Stephanie Roberson Barnard, Eli Lilly & Co. Honoraria: None Research Funding: None Expert Testimony: None Patents, Royalties, and Licenses: None Other Remuneration: None Corresponding author: Stephanie Roberson Barnard, Listen Write Present LLC, 2206 Greenwich Ln NW, Wilson, NC 27896; e-mail: [email protected].
DOI: 10.1200/JOP.2013.001243; published online ahead of print at jop.ascopubs.org on January 21, 2014.
M A R C H 2014
•
jop.ascopubs.org
153
Information downloaded from jop.ascopubs.org and provided by at UNIVERSITY WESTERN ONTARIO on March 7, 2015 from 129.100.58.76 Copyright © 2014 American Society of Clinical Oncology. All rights reserved.
derstand you’re building a new office, but in the meantime, you need to protect your patients’ privacy.” “You should make a list of the top ten oncology drugs, and instruct your PA to learn them inside-out.” “That vomiting woman just needed somebody to take care of her.” And the pie`ce de re´sistance: “It’s never okay to administer an injection in the bathroom.” Poor Dr Clarke. He’s a quiet man, and this lesson has sucked out any viable excuses. It’s clear that his employees supervise him, and my dissatisfaction is a surprise. “Wow. I’m sorry,” he says when I finally stop talking. “Thank you for sharing with me.” Now I feel bad for jumping into consultant mode. I hang up the phone and report to David, who says, “You did the right thing, Steph. Somebody needed to tell him. You’ve done him a favor.” OK. Maybe it was a public service. That poor barfing woman didn’t have anybody to speak up for her. I’m glad I spoke up for both of us.
