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For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.
My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.
At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.
The building was beautiful, the staff attentive. They even assigned a nurse, whom they assured would follow me throughout my course of care. I had no doubt that the care would be top-notch.
Everything changed when my mother and I sat down with the physician. He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach.
“All of my patients use this protocol,” he said.
I was shocked. “Does this mean I could get better?” I asked.
“No, this is not a cure.” he answered. “But if you respond to the treatment, you might live longer, although there are no guarantees.”
My goals are to maximize my quality of life so I can live, work, and enjoy my family with the least pain and the most function. Would I undergo a year or more of grueling, debilitating treatment only to live with spinal fractures if the cancer progressed? Would the treatment strip me of the quality of life I enjoy now? I wouldn’t be cured by the treatment. Would I get the possibility of quantity and no quality?
I pressed him. “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.”
His brow furrowed. “Well, you don’t want to look at the cancer, do you?”
He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary. Right now, I feel fine. I can work. I am pain free. Did I want to trade that for a slim chance of a little extra time (no guarantees, of course)? Would they be years of living, or years of suffering?
“But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.”
He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied.
Inwardly, I shook my head. Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease. To me, there were real drawbacks. Undergo aggressive therapy that might buy me a longer life…at what cost? I might never recover my health for the limited period of time I might have following the aggressive treatment. This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival. He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.
Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.
I returned to my original oncologist. I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment.
What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.” We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.
Amy Berman, BS, RN, is Program Officer of the John A. Hartford Foundation. She writes at health AGEnda.
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There are so many competing interests in healthcare/medical care and so many misunderstandings in the conversations about it. It is really disappointing. There is a huge gulf as well between those who deliver care and those who receive, though there are many books/other pieces by those who experience both sides, like the original author of this piece, that provide some perspective.
I enjoyed the book, Mountains Beyond Mountains, about a Harvard trained and employed MD that might offer some perspective on delivering healthcare.
Why I got notice of this comment 4 years later is beyond me, but since it was forwarded, I will reply this one time. So you as an alias claim to be an advocate and then chastise me for writing patients should challenge direction of care that does not match the pateints’ expectations or concerns. What do you advocate people do if that opinion is so outrageous to you, just file a lawsuit?!
Did you read my initial comment that started the thread? I just read it again and I think it does a fair job of trying to empower and encourage being the best advocate for the patient: said patient!
And, as I wrote before, let’s have a moment of terse candor here: with what patients come into offices for assorted care needs of late, there is no authority by doctors anymore by in large, just looking for someone to do the SCUT work for the patient who risks coming across as being entitled and trumping clinical opinion.
I stand by what I wrote before 4 years ago, sorry you do not agree. Note I will not be coming back to read here again, as not checking off the box “Notify me of follow up comments”.
Good luck in your advocacy role, hope those you help improve by leaps and bounds.
Joel Hassman, MD
DeterminedMD: You say “If a provider is offering something that is disconcerning or disrespectful to you as an active patient, speak up in your defense and uncertainty, and tell your doctor in so many words, if comfortable to say it this way, “if I go out the door from this visit unclear, unhappy, or uninvested in the plan, it will disappoint all in the room.” Any provider who is listening and invested in your well being will hear this and entertain further discussion, I can say with near certainty: count on it!”
You are suggesting to put the responsibility on the patient to stand up to the “authority” of his/her physician. If I were your patient, I would not stand up to you in all of my vulnerability as I surely would be subject to your bias and opinion, instead of feeling heard as a patient with a valid need. A second opinion conveys the “data”, however, the physician has a responsibility to engage with the patient and make his/her needs the focus of the collaboration – not the second opinion “data”.
Very inspiring article. I admire you for sharing us your story.
“The good physician treats the disease; the great physician treats the patient who has the disease.”
This is just a matter of good physician-patient relationship. An understanding. The physician gives his/her patient options and make the patient understand about their effects and the patient can suggest and, of course, choose.
Thank you for this article.
hospital marketing
DeterminedMD just keeps making Amy’s case, and his handle says it all.
It’s isn’t just one doctor, doctor, it’s a whole lot of them who act as if “engaged patients” are a problem. Though it’s hard to see how a relationship can form without engagement on both sides. Me, I’d be happy if I got the sense my doctor actually read the chart before walking through the door.
Amy, thank you for sharing your story, and blessing upon you.
I just completed over 50 in-depth interviews with “thought leaders” in oncology. I can’t go into too much detail about the project – a qualitative research project seeking perspectives and observations about the drivers and barriers to cost-effective, patient-centered care. I’ve been doing health research for a long time and I have heard many things that disturbed me, but nothing has disturbed me like what I learned in these interviews. This essay hits the nail on the head. It’s time to start talking about QOL.
There is a huge difference eeewbtn hospitals and care homes and that is one of accountability. The article completely misses the point that should a care home be neglectful or found to be in any way abusive then immediate sanctions are put in place to prevent any further admissions or even close the home down. This is quite simply not the case with hospitals that can be institutionally abusive to the elderly with impunity as there are no repercussions for the hospital or the staff. I am speaking as the son of a lady that was very well cared for in a care home for many years by dedicated staff who went out of their way to make my mom comfortable. When she had to go to hospital due to an infection she was there for three weeks and eventually returned to the care home having lost one and a half stone and gained three pressure sores that she never fully recovered from. She was nursed in bed at the home for 2 years and never had a mark on her skin but in a few weeks in hospital she was a shadow of her former self. The home raised a safeguarding vulnerable adults referral into the neglect at the hospital and social services were horrified at her treatment. The upshot of it all was a whitewash where the hospital blamed my mother’s health for the pressure sores when it was clear that they had neglected her by not providing the correct equipment, not feeding her or even providing basic personal care. I have a friend who was unfortunate enough to have his dad placed in a care home where he did not receive as good care as my mom did. He complained to social services and an investigation was launched. The result was a block on any new admissions and a review of each person in the home. Changes were made and the home improved as a result and a member of staff was dismissed. This is in stark contrast to the complete lack of action taken against the hospital even though my friend’s concerns were of a considerably less serious nature e.g getting up late and being put into pyjamas at 6.30 rather than 8pm.Sorry to ramble but I know that care homes are already far more accountable than hospitals as fundamentally people have a choice of which care home to use but do not have a real choice of hospital and also, care homes can be closed. The local police liaison for abuse of vulnerable adults told me that she had a huge number of complaints and allegations of abuse or neglect surrounding the hospital and stated that she would love to block new admissions or close the hospital but was unable to do so. She also stated that if the hospital was a care home it would have been closed years ago.
Good post you gather lot of information on your post i really enjoyed to read your post thanks for your hole research work and share with us.
Amy, Good luck with your courageous struggle. After spending 20 years working in health care I am not surprised at Amy’s experience with physicians. She’s an educated health care consumer so imagine what the general public goes through. I too advocate for better quality health care — which is why I wrote a short book (4000 words) of practical advice that I have successfully used to get better health care for my family and in winning billing and insurance battles (among other topics).
Dear Inspi Tof,
I enjoyed reading your response. It reminded me of a quote from William Osler, the father of modern medicine. He said, “The good physician treats the disease; the great physician treats the patient who has the disease.”
All best and thanks, Amy
One thing that might be helpful in this conversation is to remember that doctors are insecure too. They are insecure in part because they have chosen to put themselves between a person and his suffering. Additionally they are insecure because they are human — who doesn’t want to do a good job? Who doesn’t want to be recognized as successful?
So this is part of what the physician brings to his or her relationship with the patient.
Now what medical care has become in today’s world, particularly in the United States, is the delivery of highly complex procedures as responses to specific situations. It is not a relationship except to the extent some sort of interpersonal relationship is needed to set up the procedure. As far as the healthcare system is concerned, it would be better if no relationship existed at all. Then procedures could simply be done based upon some mechanical algorithm and their efficacy assessed against some objective standard, and all the messiness of being alive and involving quirky human beings could be bypassed. But of course that “ideal” is absurd and only serves to highlight the extent to which we have forgotten, or put aside, care in the healthcare industry of today.
But it is not easy to put care back into the equation. First of all, what’s care? I think most people would agree that while there are some common features, there is a broad spectrum of definitions no small number of which are mutually contradictory. Further as has been noted by other writers, the way care gets implemented is often time-consuming and definitely not compensatable within society’s current system of healthcare. It really was no surprise that, not long ago, counseling about end-of-life issues easily morphed into “death panels”. Things like “care” touch very close to the core structures of self and identity and vary from person to person no less than do our faces even as care also echoes our earliest life experiences. Simply said, caring is harder then procedures.
So when a person is confronted with the fact his life will not go on forever, there should be no surprise that a great deal of what had previously been settled and dispensed with should suddenly tremble like the proverbial leaf in a wind. How much of our world functions as it does because we have managed to deny or redirect that wind, if only temporarily?
This article is a gift. It opens windows between worlds that rarely get glimpses of one another. How one feels in response to those glimpses in the end may well at first drive us to our personal refuges of profession or belief and righteousness, but encountering responses that are foreign to our own seems a sure path for us all to bring more compassion into world.
Dear Senator Stevenson,
Thank you for your life long commitment to this country. I am deeply honored by your kind words. And on behalf of people struggling with serious illness, thank you for your advocacy on behalf of patient-centered care.
Warmly,
Amy
Amy- First off I want to say how moved I am that you wrote this. It took a lot of courage and faith to be able to post this.
I, too, believe in the notion of patient-centered health care. It is important for individuals to understand all of their options, and to be able to make an informed decision based on what they have learned.
In defense of the second opinion doctor, I’m sure he just wanted you to fight as hard as you can to stay alive. I’m sure he had the best of intentions. But aside from that, I do believe that every patient’s case is different, so a one-size-fits-all approach to health care is a nuisance.
My thoughts are with you. I wish you all the best and God Bless.
As a health insurance agent for over 35 years.I have wondered a lot about care that I felt was more of a painful way life than helpful to the person getting the care.My mother and I talked at lenght about end of life.I new what she wanted and I followed right up for her.It was hard but seeing her in a painful way of life was much worse.It was her wish and I honored it.I have clients that can not make that decison they do not want to be the one that tells the doctor to stop care.I have written down my wish’s there should be no mis-understandings.As far as the doctor they see upwards 30 patients a day.They can put but one face on,they can not read minds and they have a family to.Can you just think what it is like to tell someone bad news all day long.They can have the big money and the title I do not what to take there job.
LifeCoachRN, points out that hospice is vastly under-utilized. There are misconceptions in the consumer and clinical worlds about hospice care. They should know that pain and symptom management are a priority and can include oxygen and other supports. The level of expertise focused on the physical and psychosocial needs of the patient and family beg the question–why is this chosen so close to the end when the care would be beneficial far sooner?
Margo, my thoughts go out to you in support of your patient advocacy. A dear friend and colleague of mine works for a health care foundation that was established after a terrible medical error. It takes a strong person to use a challenging situation as an opportunity to make the world we live in a better place.
And jonathan I very much appreciate the positive findings on physician satisfaction in the United States. I–like many of THCB readers–am a student of the history of medicine, nursing and healthcare. I do not fault clinicians. We should be grateful for the excellence that is out there. But our expectations have and should continue to evolve. Healthcare was formed around acute episodes of disease that focused on curative treatment. Today chronic disease rules the healthcare roost. The delivery system and providers aren’t ready. And with all the technology and technique we don’t handle the complex choices that require patient involvement and decision-making when one is dying. I know.
jonathan, I think that Osler would be proud of the profession today. But even he would likely suggest there is room for improvement in the way we address patient and family-centered care.
Amy, Thank you for your courage ad desire to help others at this time. I am a cancer survivor and have survived 3 life-threatening medical errors. I am trying to teach people how to educate themselves and better advocate for themself or a loved one. I am currently going through tests to determine if I have breast cancer. Thank God it will be earlier stage if it is there, but during the process I got new insights into “sloppy” medicine, have written letters and talked with doctors involved to try to get them to reassess the princples and guidelines they are using when doing diagnostic procedures. I have 4 blog entries in the “Medical Test” category of my blog at savvypatient.org if you are interested. I’d like your your comments if you choose to read them. God Bless you and give you the peace only He can give.
Some recent empirical findings on the topic of physician authority. People report more, not less, trust in physician opinions than they did eight years ago.
First let me say Amy is that my prayers are with you and your family in this difficult time. Secondly I admire your courage to look at and speak out in this situation. My heart is moved with compassion for you as it is when I see so many patients in the same position. For the most part we do not practice patient focused care because we’re not listening to them. I worked for Hospice where this scenario was repeated over and over again. When a person is given a devastating diagnosis they look to the healthcare professional (usually MD) to tell them the truth about the prognosis and ALL available options. A lot of Drs treat until death without ever having a conversation with the patient about their goals. The average time people spend on Hospice is 7 days. Usually they were just given the truth of the prognosis and now they all have 7 days to adjust to imminent death and all that comes with that. Even among nurses and other healthcare professionals they don’t want to talk about “quality of life” vs sometimes “over aggressive” treatment when faced with terminal illness. We need to acknowledge as Amy does that this is a problem. It’s not just one Dr or one facility. It is a problem we all need to look at, examine our own thinking about terminal care holistically and then put the patient and their goals first. The financial piece is a whole other factor that is important also. God Bless you Amy.
Fair Warning: This post is a off-topic:
DeterminedMD sure does get around. I’ve met him (and his female version) several times over the years. How do I recognize this person in all his/her many forms? By the nearly belligerent use of power, bearing and being when interacting with someone who dares speak up for him or herself.
Don’t they get it? No, they don’t. They are just people (shhh…let’s not hurt anyone’s feelings).
Wow, that is just crazy. I guess that is why everyone should get a diagnosis by more than one doctor to see which doctor meets their goals.
However, I can also see that a doctor is geared toward either healing or extending. That is their purpose. And sometimes, adhering to these standards allow the cure to happen even if it is unlikely or not likely at all.
Nonetheless, very interesting read and I appreciate you posting this.
What powerful comments. Let me gently lob back over the net that I have a great clinician and will say more on communications in the next blog.
Healthcare should certainly be a partnership as suggested by Kathy Torpie. Sadly, partnering often means something different depending upon where we sit.
Today we lack a fundamental infrastructure to support patient-centered care. The incentives work against the care you might want for yourself and your family. And measurement has not come to terms with these important decisions that will bear heavily on cost and quality, decisions that ultimately should be made by informed patients and their families.
Opportunity is-a-knocking.
I guess Ms Berman found her choir to denounce health care:
As she wrote above, “Oncology is not alone in its perverse financial incentive structure that promotes treatment and not the conversations that should be informing the treatment.”
You know, if I wanted to be inappropriate, I could take shots at some nursing behaviors, but that is unprofessional, especially between health care providers, and I am trying to be supportive and invested in the origins of this post.
Now it is not only the specialty, but the profession as a whole as the few represent the majority. I get it, the doctor in Philadelphia did not listen to you as you desired. Maybe it is time for this country to discuss openly how we treat potential terminal illnesses in a manner that is frank, realistic, and respectful. Yes, the gorilla is in the room, and the beast will not be shown to the door! Just do not mess with people’s hope and faith!
“Perverse financial incentive structure”, yeah, what bastards doctors are to try to help people live as much a quality of life and perhaps contain cancer in the process. If it doesn’t fit your personal agenda, then damn the whole field, outside your own personal provider.
By the way, is this provider supportive of your writings, much less aware of this post here? And Elaine’s comments may be her experience, but why do these commenters dismiss legitimate providers’ concerns and experiences when we are either demanded by others, more often outside the patient to do “everything possible”, or asked at the other pole to “let it go” without at least hearing the options, from least to most intrusive?
Again, I still do not see muzzle prints on patients’ foreheads when treatment options are offered. Last I checked, people have freedom of choice. Maybe this post covertly is about how patients aren’t offered what they infer or demand in treatment options. If you as patients know better, why are you coming to us physicians? Oh yeah, the internet does not give out medical degrees and the license to self prescribe!!! That last sentence was harsh, but I read this attitude throughout my travels in this medium.
You know why providers like me comment at sites like this, at least from my perspective? To at least neutralize this “physician hate party” that simmers on the internet. If you are looking for the person to whip for the struggles of health care, everyone in the room is at risk to be struck, and the room has many participants. Objective and unbiased readers, get all the facts and experiences you can to form your own independent, unbiased conclusions in this debate about health care.
In other words, be informed, don’t be dictated.
In my opinion, should this travesty of the PPACA survive the efforts to rework it, watch a sizeable portion of invested, caring providers either leave the field, or just accept this true “one size fits all” agenda the legislation is about and then really disappoint patients. Mark my words, you lose providers like me trying to keep this debate alive and contested, those of you seeking care after 2014 will really be unhappy! Careful what you wish for.
I am sorry I am not able to put the positive spin at the end here. Hope you find a way to beat this illness and gain all the hope and faith you can from sharing your situation in the process. I am done commenting at this thread hereon.
I’d like, if I may, to offer a perspective on this conversation that reflects on the conversation itself, rather than on individual comments. Here, so painfully played out, is evidence that the problem lies not with doctors or with patients, but with the relationship between them. There is clearly a battle going on that reinforces the divide between “them” and “us”. For health care to be at all effective MUTUAL trust is essential.
In any relationship, in any argument, attacks on the “other” will almost definitely diminish trust even further and inhibit the chance of any meaningful communication. So will generalizations. We all know this, but we do it anyway. To be right, it is not always necessary to prove the other wrong. When “winning” insures that one or the other will “lose”, positions become entrenched. No one wants to be a loser, particularly where one’s self esteem is concerned. The underlying issue being discussed here is not about life or death. It is about status. The patient wants to be respected and listened to. The physician wants to be respected and listened to. Each bristle when they don’t feel listened to.
The ‘physician centered’ model of care put the physician’s skills and expertise at the center of care. The ‘patient centered’ model puts the patient at the center of care. But good care can not be an either/or proposition. It is the RELATIONSHIP between the clinician and patient that needs to be at the center of care. That requires changes from both sides of the bed. This is a message that I continue to present at medical conferences internationally. Change is slow. Every year I face conference centers full of medical professionals committed to quality improvement. We are on the same side. We each – medical professionals AND patients – need to learn how to relate differently.
What a brave and selfless woman Amy is. She speaks things that I have heard so many times before from many individuals. Healthcare seems to assume that one size fits all, no matter what. Some providers are so lost in that fable, they tend to lack compassion or concern for individual patients. I shall keep Amy Berman in my prayers and thoughts, hoping that a miracle happens for her, as I do believe in such things. I also hope that her words will reach the masses with honor and truth, not dismissed as simple opinion. In healthcare reform, much can be learned by this courageous healer. Please pass her story on to as many people as you can.
Ms. Berman, I am so very sorry for the terrible time you are going through. And seeing a doctor like the one you went to for a second opinion only exacerbates your emotional pain. He simply did not listen to you – it seems as if, in his eyes, you were a second class citizen in relation to him because, after all, he is the doctor, and you are the patient. I write about my own painful, off-the-wall experiences with Harvard doctors at a Harvard-teaching hospital in ELLEN IN MEDICALAND:TRUE STORIES OF HOW I FELL DOWN MEDICINE’S BLACK HOLE AND STILL LIVED AFTER ALL, which is now on Kindle. You really cannot believe the arrogance of some of these people. My centerpiece chapter, Medical Care from Hell, tells of my experience with an Ivy League oncologist, who was also a graduate of Harvard Medical School, and who misdiagnosed me with terminal cancer after I had had Stage 2 breast cancer. I did live to tell the tale, but she never apologized and I think she was really sorry that she was wrong and that I was going to live after all. I wish you all the best and hope that you find a doctor who is competent and who cares about you. That is all we patients ask for.
It would be difficult to write down in words the red-hot outrage I have in reaction to some of these posts. The Medical Ego Explosion that hits patients blindsided in our healthcare system was so obvious in DeterminedMD’s posts that I won’t even bother to comment. Everyone except Determined can see it.
But the subtle put-downs in the sentences below were less obvious and it took me a few seconds to realize how insidious…
“The patient wants less done than we do.” (Note to doc: the patient or family is the one who gets to make this decision — it’s not about you! You aren’t the one in the bed – the one who has to live with the consequences of the decision!)
“We eventually did acquiesce to the families wishes.” (Acquiesce? You mean the family had to twist your arm to do what they wanted done? Who do you think you are????)
No, I’m not some uninformed “layperson” as was referred to in one of the posts. I work in the system and see the good and the bad. But I’ve watched two family members with cancer die in ICUs, guided by “do everything” mentality. I’m raising my hand for hospice at the first mention of Stage III or IV of anything compared to the hell of aggressive cancer therapy.
Amy, God bless you. Your courage to share your story in the face of such a challenging and difficult diagnosis and disease is nothing short of heroic.
In Atul Gawande’s book, “Better”, he explores the reasoning that drives physician recommendations and decisions. Gawande does this in a way that is human and free from ego. Perhaps we all would benefit from picking it up and giving it a read.
Amy, my very best wishes for the highest quality of life filled with blessings, happiness, and peace.
DJK
@a_musinghcblog
Panacea, your focus on cost of treatment is a critical aspect that should be openly discussed and weighed by the patient. Excellent point.
Maggie, thank you for sharing Peter Eisenberg’s insightful blogpost on the financial underpinnings of oncology. Oncology is not alone in its perverse financial incentive structure that promotes treatment and not the conversations that should be informing the treatment.
In a healthcare environment that responds to sticks and carrots we need strong policy that supports aligned incentives and measures that are sensitive to patient-centered care.
“Jonathan, this argument of “defer to authority” used by doctor beaters really has little traction these past 10 years or more since the internet became entrenched in our society”
@DeterminedMD: Deference to authority may be losing traction, but to say it has “little traction,” is turning a blind eye to how patients look at physicians. All too often I talk to patients who either don’t understand what the physician is telling them (and are too afraid or embarrassed to ask questions), or who think that if the physician said it, it must be so.
I then have to advocate on the behalf of these patients, whose needs or resources may not match the physicians desires. One more than one occasion, when I’ve told a physician that a patient cannot afford the latest greatest antibiotic (costing hundreds of dollars), I’ve gotten the response, “Well, does he want to die?” NO, he does not want to die. He wants a treatment option within his means, and he understands it may not work as well as the latest greatest antibiotic (and in some cases may not work at all).
The physician patient relationship hinges on one word: RELATIONSHIP. You can’t have a relationship without dialogue. To have that dialogue, the physician needs to invest himself into the needs and concerns of the patient. And in Ms. Berman’s case, it is clear this did not happen with the 2nd oncologist.
Ms. Berman, I am very sorry to hear of your devastating diagnosis. You will be in my thoughts and prayers, and I wish you the very best.
Amy–
Thank you for your courage and eloquence.
Facing death, you are able to express your concern for other patients. This is extraordinary. I salute you.
I am so glad that you found a physician who supports you (your original oncologist in N.Y.)
I believe that Barry is right: oncologists are particularly reluctant to focus on the patient’s quality of life–and more likely to believe that the goal is to win 2 extra months, 3 extra months, 2 extra weeks . . .
They have been taught that they “succeed” if they win more time. So ego is involved. But I also think that oncologists have been affected by our national preoccupation with waging a “war” on cancer. The “good patient” is the patient who wants to “fight” the disease.
And then, of course, there are the perverse financial incentives created by the way we pay oncologists– for administering chemo, but not for spending an hour or more talking to a patient about her options.
Most of what I know about oncology I have learned from Dr. Peter Eisenberg, an experienced oncologist in California.See his post “A Very Open Letter from An Oncologist” here http://www.healthbeatblog.org/2009/01/a-very-open-letter-from-an-oncologist.html
What I like most about Eisenberg is that, if the cancer is incurable, he believes in telling a patient the truth. And then asks the patient what she would like to do with the foreshortened time that she has left–
“spend it my office, with me and my assisants, undergoing chemo– or do something else?”
If the patient wants chemo, Eisenberg will provide it.
But he understands that the choice is the patient’s and that for many, quality of life is most important.
I wish you the very best. You have helped many by wirting this post. (I am going to link to it on HealthBeat.)
It may interest readers to know that both of the treatment approaches I was offered are protocols recommended by the National Cancer Institute, suggesting that neither would be considered overtreatment according to guidelines. And as Graham suggests, “…predictions are just probabilities.”
We do know that there is a much smaller investment in my rare and most deadly form of breast cancer. It does beg the larger policy question, how do we relook at our national investment in clinical and health services research? When we make strides in one area can we consider upping the ante in areas that continue to have a poor prognosis? We know that 63% of cancer patients are age 65+. Given the aging demographic shift are we making an appropriate healthcare investment in this area?
Great dialogue, friends. Thank you.
Given the facts in this situation, and that average survival at 5 years is 20-50% for stage 4 IBC ( various sites ), I would like to know what characterises those that survive 10 years vs those that survive 1 year. Is it aggressive treatment vs minimalist treatment? Where’s the data? You now have two conflicting opinions. And since the lesion is hormone sensitive, are there trial drugs that are an advance on herceptin and the like?
The first doc claims their opinion is evidence based, but the problem with EBM is that in diseases of relative rarity, thare is an insufficient body of evidence. And even if we do have this, predictions are just probabilities …
Thank you for sharing this experience. You are right to focus on the personal aspects of this story. I want to comment on the unnecessary care component, however, to demonstrate why medical care costs too much in our health care system.
Unnecessary care contributes more that $600 billion to health care costs and it is rising. The failure of the health care establishment to control these costs will eventually lead to draconian rationing.
While there are many well identified reasons for the unnecessary care – defensive medicine, patient demands, greed, the need to utilize expensive equipment, etc., there is no doubt that at least 35% of of all medical costs are unnecessary.
It is absolutely clear that insurers – both government and private, cannot or will not assure appropriate care.
This experience is just one of the tens of millions that happen every year. Stories like this will continue until we focus on correct methods for incenting the medical community to provide appropriate care and not over treat. We cannot rely on patients to understand and choose appropriate care. Only the medical community holds the solution.
“He also noted that sometimes the second opinion doctor may either be reluctant to contradict the first doctor or might try to “steal the case.”
Barry, I think this is a good point as “professional courtesy” or presetting the mindset may inhibit a new clear look at all the facts and course of action. That’s why I would recommend that on second opinions no mention be made of previous diagnosis and start second opinion as if it were the first.
In 2004, I sought a second opinion for a surgical procedure. As it turned out, the second opinion doctor told me that the first doctor did a very thorough workup and the recommendation for surgery was reasonable and appropriate. When I discussed the matter with my PCP, who referred me to the first doctor, he made a couple of interesting points about second opinions. He said that when he does his teaching rounds and the medical students ask him when they should recommend that a patient seek a second opinion; his answer was if the patient brings it up. He also noted that sometimes the second opinion doctor may either be reluctant to contradict the first doctor or might try to “steal the case.” My takeaway from the whole episode was that if I want a second opinion, I need to be assertive and seek it. We’re talking about a significant procedure that I need to feel comfortable with. There is no reason, I believe, for the first doctor to take offense.
What I find interesting in posts like these across the internet is relate one example of a physician who did not portray the exemplary skills of physician-patient relationships, and then damn the majority of the profession with the comment you made that I have referred to in both my above comments, Ms Berman. By the way, you did not clarify what I missed in your original posting that I raised as important information to relay to readers in pursuing this second opinion from the physician in Philadelphia, that being what was presented to him in your original workup that lead to your New York provider’s original diagnosis and recommendations for treatment. It may be inconsequential for you to note that in the post, but, you could have made some reference to it in your follow up comment in the thread.
Or, did I miss something in that follow up as well? You seemed quick to clap for a fellow disdaining comment by another while summarizing my offering as : “Why isn’t DeterminedMD on board? Why don’t we have systems in place to guarantee our goals are considered?”
Guarantee our goals are considered? As I reviewed your Foundation and your backround, you are a nurse and I have to ask, what guarantees are there in health care, both from a doctor and a nurse? None that are iron clad and irrefutable, to discuss in a thread of this magnitude at least. So, I have to ask what is your angle here in discussing your personal health issues and then taking what amounts to pot shots at doctors who do not “guarantee patient goals”? To critic a doctor who did not have the best bed side manners, who you asked to see?
I stand by what I wrote about the possible consequences of seeking second, even third opinions by patients. Sometimes it is the best course of action, and sometimes it becomes a complicating factor. You can dispute my perspective, but I am really completely out of place in offering this point of view, having been there on both sides with patients?
I am on board from what you have presented, I just think you should do your best to clarify things when asked, and if your clarification puts me in my place, then you may be shocked to read I would acknowledge it and thank you for correcting me, if at not at least educating me.
But, for me, the internet seems to be a sounding board for unilateral disillusionment, if not frank attacks that offer the chance for making statements without responsible rebuttal and well rounded debate. Therefore, I participate where I sense there is some opportunity for fairness and equal dialogue, so unbiased and objective readers can benefit maximally from such interactions. And I appreciate the authors of this site allow some anonymity so we can speak as freely as able without risk of retaliation. As long as we do so with respect and consideration.
Again, to end the comment on as positive a note I can offer,
I feel the majority of providers offer patient centered care the best we can as trained, it just cannot be expected to be universal with every single one of us. As I noted before, I hope patients are empowered to speak for themselves and expect that doctors continue to do their best for their patients, and people can maximize their health potential with what the system can allow them to access. And with end of life issues, dignity and compassion in that quality of life pursuit are maintained and championed by all affected from the experience of the patient. Hope and faith as part of that focus.
Hopefully that clarifies what I am attempting to say from what I have gleemed from this dialogue so far.
You can find more health related articles here in this website http://www.healthandwellnesscentral.com
Such is the case in law, accountancy, psychiatry, restaurants, politics, hospital executives…welcome to life and freedom and individuality in capitalist America. However, it sounds like your doctor in Philadelphia needs intensive training in the psychology of the sick patient.
I just want to say first off that it is amazingly courageous for the author to share their struggle with the public like this. I have a few observations:
1. The story presented here is not the norm. The author is clearly has first hand knowledge of what it means to sacrifice quality of life for quantity and was prepared for a less aggressive treatment approach to maximize her quality of life. I think most laypeople in similar situations (or families of them) want to go in guns blazing full court press when faced with this prognosis. Having been on the delivering end of this type of bad news while some people are accepting, many opt for more rather than less care.
2. The author sought a 2nd opinion at a “big name” academic health center. Most folks who get seen at these types of health centers are looking for the latest and greatest experimental therapies and want a full court press and as such the folks who work at these places often have that mentality.
3. Many of us in the medical field are uncomfortable in situations where the patient wants less done than we do. I’ve been in a situation or two where a child’s family wanted a more conservative approach to things that the medical team felt was too conservative. (We eventually did acquiesce to the families wishes).
Dear Amy; I read your article, and thank Matthew for sharing this with all of us. Let me say at the outset my remarks are for you. You already know the answer,and after only one second opinion. Ultimately the right choice is yours alone, with some input from your family. Life itself is fatal, for some with heart disease it takes ten to twenty years to die. Some are dying when they are born. It sounds as if you have lived a good life, one rewarded by your career and family and friends. If you have all three you are truly blessed. An academic is coming from a different place than your primary care oncologist or PCP. Some of the aforementioned comments address those issues and their particular view of ‘fatal tumors’. Continue on, eat well, try to maintain all your activities as long as you can. Enjoy your family, and live well. I agree with all your reflections, and anger is okay…find the right PCP to talk to and often.
DeterminedMD raised a host of interesting issues regarding physician distrust of the motives behind a second opinion.
“When I find out a patient is seeking out a second opinion, at least two things have to be determined by my involvement: one, is the diagnosis accurate and most likely irrefutable by subsequent evidence not known to the first doctor, and two, what is the patient searching for by seeking another opinion, and it is not always just about treatment. Second opinions are almost always a double edged sword for both patient and involved physicians. Doubt, annoyance, and possible loss of trust are at risk, and leads to compromise of further care depending on how things proceed from here. Is the first doctor dismissed or just feel dissed, is the second doctor shaming or embarrassing his prior colleague’s efforts or looking to take away another colleague’s relationship, and does the patient step back and hesitate to not know who to believe, where to go further?”
Shaming? Embarrassing? Dismissed? Dissed? The pointed language used by DeterminedMD suggests that the physician ego should be of central concern when seeking a second opinion. Do the THCB readers agree?
Thankfully, my physician was more enlightened. We were both interested in gathering information. Because I have a rare form of breast cancer, my oncologist felt that meeting with one of the few researchers in the nation focused on this rare cancer might offer new treatment modalities not yet published. That, unfortunately, did not turn out to be the case.
In the end my oncologist and I agreed that the course of treatment chosen might afford a similar lifespan and shouldn’t strip me of the quality of life I enjoy today. I chose to feel good for as long as possible.
My heart goes out to you both, firao and Laura. Whether agressive treatments hasten death or make life unlivable for some, there is a discussion that should occur. A recent NEJM study suggested that lung cancer patients lived longer when a palliative care provider was involved at the start of their illness. I am very fortunate to have a team that has ongoing open discussion and I have a palliative care provider. The point that you both reinforce is that everyone deserves that discussion.
Why isn’t DeterminedMD on board? Why don’t we have systems in place to guarantee our goals are considered?
And as jonathan suggested,”For the ‘authority’ not to present all the options or inquire about the patient’s values and desires, and then brow-beat with disdain when objections to the recommended course of treatment are raised, is more than enough persuasion in many cases.” Here. Here.
As we implement health care reform, patient-centered care will be the critical litmus test for the value of our health care.
Jonathan, this argument of “defer to authority” used by doctor beaters really has little traction these past 10 years or more since the internet became entrenched in our society. Patients more often come to physician offices with more information and outside dialogue from others to have more input to their diagnoses and treatment options, some of this good and some of it bad. Hence sites like this as proof!
I do feel for this person’s situation, as I said in my initial comment, but I took issue with her generalization about how “…reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.”
I guard my responsible colleagues’ backs when people voice such comments that bash our efforts to be the providers we honestly and efficaciously try to be for our patients. No surprise Peter was quick to chime in after you one of his attack protocols.
If I do comment further on this thread, I will do my best to finish with a positive, reaffirming direction, and here it will be this:
If a provider is offering something that is disconcerning or disrespectful to you as an active patient, speak up in your defense and uncertainty, and tell your doctor in so many words, if comfortable to say it this way, “if I go out the door from this visit unclear, unhappy, or uninvested in the plan, it will disappoint all in the room.” Any provider who is listening and invested in your well being will hear this and entertain further discussion, I can say with near certainty: count on it!
My mother was diagnosed with stage four colon cancer in 1992. She wanted to live of course and did everything the oncologist recommended.
The aggressive treatment did no good and seemed to make the cancer progress even faster; the treatment certainly did not make her feel any better, and that’s an understatement.
When did doctors forget that the beginning of the Hippocratic Oath is “First, do no harm?”
God bless you with peace of mind and heart and soul.
Dear Amy: As a woman who just completed a year of aggressive treatment for what was eventually acknowledged to be a Stage III breast cancer, I’m deeply moved by your courage and honesty in the face of your diagnosis. Your experience with a medical practicioner who prescribes a “one size fits all” approach is extremely common…. my online BC support group reports it several times a month! My own encounter was with a highly respected surgeon who was insistent I opt for breast reconstruction. This said, the health professionals I encountered, nurses, doctors, technicians, all of whom had opted to practice in oncology, impressed me with their compassion and caring. In particular, the front line technicians, who spend day after day working with cancer patients who are in every stage of every variety of the disease, were consistently stalwart, patient, and kind.
No doctor wants to tell a patient there is “no hope.” In oncology, the battle is never ending, and I think that some practicioners shield themselves from depression and hopelessness by internalizing the “war on cancer” stance, and never considering whather it’s always appropriate. It’s difficult for any breast cancer patient, no matter what stage or variety, to wrest control of the information from her health care providers, and then make sense of it. I’ve heard stories of patients whose surgeons resisted giving them the biopsy reports! In that you are an experienced nurse, and well aware of the implications of your diagnosis, you are an exception. I hope that you will continue to communicate and blog about your journey as long as you can…. many women with stage IV feeled muffled in their fear and are afraid that their emotional ride will scare and discourage other BC patients… you are facing this with courage and insight and this article is in many ways an act of generosity to other women in your situation. Thank you and all good wishes for you and the people in your circle of care.
Peter – I suspect that oncology is probably the special case area of medicine where aggressive treatment is most prevalent and where doctors take a “Here’s what we’re going to do” attitude without trying to draw out what the patient wants or doesn’t want. Indeed, they often resist allowing a palliative care specialist to come near their patients even when the patient asks for a consult.
By contrast, second opinions and shared decision making are becoming much more common with hip and knee replacement, back and spine surgery, and prostate surgery among others. With Alzheimer’s and dementia, by contrast, family members who can’t let go may often push for aggressive treatment even if it’s not what the patient wants but the patient can no longer communicate.
Back to oncology, in this age of the Internet and social networks, I think more people are likely to become more assertive in bringing their goals into the discussion. In the case of the elderly, if they can’t do it themselves, an adult child or other family member or friend can do it for them. At least I hope so.
“He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach.
“All of my patients use this protocol,” he said.”
I bet he makes a good living satisfying his goals and not the goals of his patients, or the goals for lower utilization and appropriate care. So much for the tort reform myth of lowering costs of care. Just think how a nurse can have these issues then think about non-medical people confronting the same considerations. Would the oncologist have offered the same treatment regimen to an uninsured patient?
“I do not see the muzzle prints on patients’ foreheads to agree with care options as offered by doctors.”
DMD, you lost your inner battle to be sensitive there. As you know, or should, human beings do not require physical coercion in order to be persuaded against their best interests, particularly when they are uninformed about the options. The physician is the authority, and most people most of the time defer to authority. For the “authority” not to present all the options or inquire about the patient’s values and desires, and then brow-beat with disdain when objections to the recommended course of treatment are raised, is more than enough persuasion in many cases. That’s the main point of this aching, inspiring post.
This is a post I feel I have to tread very delicately and cautiously to challenge the author’s conclusions and opinions, because I am truly sorry to read of your diagnosis and dilemmas in treatment options, and I mean this very sincerely and supportively.
That said, I think there is more to your relating of your second opinion that may be glossed over, if not just completely omitted due to the outrage you relate to the interaction. When one comes to a physician for a second opinion, there has to be some information provided by either, or both, you and the original physician offering the initial diagnostic impression and treatment option(s). I mean, let’s be frank and candid with non clinician readers, please. Second opinions can’t proceed without the facts/direction of the first one, because if you as the patient do not want just sheer repetition of the original premise, information has to be provided, and if that is true, then I guess I, as a fellow physician (but not an oncologist or surgeon) have to ask, what were you expecting to hear if you were searching for another opinion for care? Doesn’t the oncologist want to offer something of hope and faith when faced with a difficult diagnostic impression, albeit I agree with you he should also inquire to what level of intervention would you commit to? His suggestions may have been excessive options, as you relate, but your outrage he was advising aggressive means to treat an aggressive cancer, I am not totally understanding this.
You had the right to disagree, and you did, and I hope you seek out the level of care that matches your needs and goals. Again, that said, I take issue with your summation and then generalize it to care overall:
“He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.”
Sorry to say this, but I do not see the muzzle prints on patients’ foreheads to agree with care options as offered by doctors. If anything of some consistency to give some validation to your last sentence in your comment, it is the guilt and misguided expectations of significant others and family that play a sizeable role in those outcomes. I have spent too many moments in ERs and hospital rooms hearing someone else, besides the patient, push the full court press. And to watch the patient be waved off or just purely interrupted when advocating for themselves to pursue what you correctly note is to die at home with dignity and honor is only enraging.
When I find out a patient is seeking out a second opinion, at least two things have to be determined by my involvement: one, is the diagnosis accurate and most likely irrefutable by subsequent evidence not known to the first doctor, and two, what is the patient searching for by seeking another opinion, and it is not always just about treatment. Second opinions are almost always a double edged sword for both patient and involved physicians. Doubt, annoyance, and possible loss of trust are at risk, and leads to compromise of further care depending on how things proceed from here. Is the first doctor dismissed or just feel dissed, is the second doctor shaming or embarassing his prior colleague’s efforts or looking to take away another colleague’s relationship, and does the patient step back and hesitate to not know who to believe, where to go further?
Hey, second opinions have their place in health care, and I have been on the providing and receiving end of both as a provider. I just want to say one thing to readers as patients: if you do not trust or understand what your doctor tells you is your diagnosis or treatment options, I respect that and may tell you myself to seek out a second opinion, but as far as I am concerned, be careful not only what you seek as alternatives, but I may not be so receptive and agreeable to continue providing care to be told I was wrong, and then be told to do what the other doctor said was the course of action if I do not concur with said second opinion.
I hope to end this comment with a positive direction that should be the primary purpose to this thread, and that is offering a source of inspiration and motivation, and don’t let the date of the source deter you or any reader from pursuing it, as it is a timeless publication:
“Getting Well Again”, by O Carl & Stephanie Simonton, by Bantam Nonfiction publishers, 1978. I have referred it to patients as recently as 2009 and still get feedback it is of some value at least. Mind and body go hand in hand, do not underestimate their worth in any treatment intervention.
Good luck in your treatment options, and I genuinely hope that other readers have valuable feedback.