During the last weeks of my mother’s life, I was with her on a routine doctor visit when she began experiencing excruciating pain. She was rushed to the emergency room, where she was quickly given some sort of scan. Minutes later, a nurse administering pain medicine didn’t talk or look at me or my father. Her effort to avoid eye contact told me all I needed to know. My mother’s cancer had returned with a vengeance.
Memories of that nurse’s discomfort came rushing back to me this week as I read Dr. Pauline W. Chen’s latest “Doctor and Patient” column. This week she writes about the “dance of avoidance” that occurs when doctors have bad news to deliver.
In trying to protect patients, doctors may be misjudging them and the consequences of not sharing our suspicions. We may be assuming that patients and families are more fragile than they really are and that keeping our hunches to ourselves will protect them, when in fact we may be making the situation worse.
Click here to read the full column, “The Dance Before Diagnosis.” And please, share your thoughts with Dr. Chen below.
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Tell that to my mother’s oncologist, who led me to believe I would have weeks to say goodbye, when I only had days.
He only spoke to me once, and all he said to counter my misperception was:”Well, if breathing becomes very superficial…” Then what? And from that, I was supposed to understand that she would go so fast I should have started gathering family and friends right away?
Yes, he did know!
— SusannaThe truth never hurts as much as a lie. Liars are only protecting themselves.
— RKPYears ago, I was erroneously told by a physician that he strongly suspected that I had HIV. I waited overnight for the tests to come back and they ultimately showed that I did not have that disease.
Those twelve hours I spent awaiting the test results were very difficult. I wish he had kept his suspicions.
— JenniferWhen I was 13, the acne led me — and many like me — to a maintenance dose of tetracycline to which I responded very favorably, at least initially. About 3 months later, I started experiencing double vision. The optometrist who we saw suspected a brain tumor because my optic nerve was protruding into the retina. He referred us to a neurologist about 45 minutes away. My father, not wanting to alarm me, didn’t tell me anything except “we need to go see a different doctor.” His body language convinced me I was dying. When the neurologist finally talked to ME, he said, “Well, you might have a brain tumor,” and I was so relieved! My 13-year-old understanding figured they’d operate and I’d live. Turned out just to be a drug reaction.
My father was trying to SPARE me from worry. Instead he led me to some of the worst fears in my life. What one person imagines is sometimes so much worse than even the worst another may fear.
— older now….Tara:
I’m so sorry that you experienced such a failure to provide you with assurance, comfort and accurate information at a time when you and your family needed it so very much.
This perfectly encapsulates just why providing for and supporting all physicians and nurses to have true therapeutic relationships with all patients is so essential.
Bedside manner is only one small part of a therapeutic relationship: that’s built on professional and patient trust, sensitivity to individuals’ information and comfort needs, and an awareness of and response to their particular concerns, anxieties, questions and fears.
A therapeutic relationship allows providers to ask sensitive questions, elicit comprehensive life information, and then it demands that they provide care in that context.
As we all know, health care isn’t purchasing a product or a personal service. It’s trusting enough to put one’s very life in the hands of another and expecting them to provide the best options for your particular needs, wants and desires.
It isn’t a “consumer” transaction - it’s a therapeutic and professional one, and it needs to be valued as such.
— AnnieWho among us has NOT danced around bad news? Doctors are as human as the rest of us. The only thing that could allow them to overcome their very human inclinations is more training and awareness.
From Pauline Chen: Which is why I personally find so much hope in the studies on training
— Carolynphysicians (like the one I cited in the article).
After my medical injury, the oncologist and the whole team subtly distanced themselves. It was as if a wall went up.
Maybe they thought they were sparing me. Probably they were trying to medico-legally protect themselves as well. Looking back, I can’t believe they thought I would be so dense as not to notice. Silence speaks louder than any words, and sooner or later most patients and families are going to know there’s something they’re not being told.
The truth can often be painful, but it’s far worse to withhold it from patients who need to know where they stand. It’s paternalistic - who gave you the right to decide how much information I’m capable of handlling? - and it’s dishonest, and it’s the kind of thing that can rupture the relationship.
It was tough for me to hear that something had gone badly wrong with my cancer treatment. But you know what? I didn’t fall apart; I didn’t freak out; I didn’t yell and cry and look for someone to blame. I dealt with it, like I’d dealt with everything else leading up to that point.
You need to trust that, one way or another, patients and families will figure out how to cope with bad news. We need to trust that you’ll be there as we work our way through it.
This I know: We’re all stronger than we think.
P.S. I think it might actually be a good practice for physicians to routinely query their patients’ preference for information, in the same way that patients are asked about birthdate, allergies, prescriptions and so on. We all have different communication styles, after all, and wouldn’t it be better to ask, rather than try to stumble through a difficult conversation?
— Perrindoctors are human and like all humans they are cowards. we have to remember that even when doctor’s egos make them “think” they are smarter than they are. Doctors have to remember how hypocritical they are and how much of cowards they are and admit this. When doctors finally let go of their egos and start admitting their faults only then will doctors and patients be able to work together in a more civil manner. If they can’t do that, then there will always be a disconnect between the Doctor and Patient that will never be bridged no matter how “nice and touchy feeling” classes they may take.
— jayNurses are not allowed to tell patients about their conditions, so avoiding eye contact is a defense mechanism.
— CatdancerFROM TPP — I realize that. But I think it would have been better if she just treated us normally — said hello, reassured us that the doctor would be in soon etc. Hospice nurses understand this concept so well, but not every healthcare worker does.
My doctor told me I had cancer over the phone. But he didn’t exactly tell me. Neither did the pathologist’s report. Both refused to commit, instead telling me the biopsy was “highly suspicious.”
Instead I heard it in his voice: the nerves, the concern, the shock, the fear. That was what I reacted to when I burst out in sobs, not the words “your biopsy has come back highly suspicious for cancer.”
My surgeon, to his credit, had a pair and told me I definitely had cancer. He also told me metastasis was suspected based on suspicious lymph nodes seen on ultrasound. That was a little something my original doctor never told me, though he very well knew, referring to them as “possibly pathological” in my patient status report. I was infuriated beyond comprehension when I discovered that he clearly suspected cancer before I ever had a biopsy, but yet, never said a word to me.
All people are different in how much they want to know. I want to know EVERYTHING. This was no secret. I have a proud reputation as a difficult patient. But yet, I was patted on my head like a little girl and was told “it’s probably nothing but let’s biopsy anyway” and sent on my way.
(In the end, it was cancer like my surgeon said but I had no metastasis.)
— KWMy roommate right after college, who was NOT sexually active, was told by a doctor that she had herpes. It was a urinary tract infection.
I was once told by a doctor that a spider bite on my rear end that was causing me to go into anaphalactic shock was herpes.
I know 1 in 4 Americans have herpes, but come on!
— SharonTwo years ago I had a breast biopsy. After ten days of waiting and imaging all kinds of tragic scenarios I received a call from the radiologist (M.D.) who told me she was sorry but I had cancer; a surgeon would be contacting me within the hour to make arrangements for surgery. I went into the bathroom and threw up. Fifteen minutes later the radiologist called back; sorry, she had read the wrong name, I didn’t have cancer after all. I asked her to check the records again to be sure and her response was, in a loud voice, I TOLD YOU YOU DON’T HAVE CANCER!
Sometimes doctors need to be told how to deliver good news, too.
FROM TPP — Wow, that’s an awful story.
— MJ CarterMy mother for years had a persistent cough, one her doctors never seemed able to get to the bottom of. Then she came down with pneumonia, and her (new) doctor booked her for a lung endoscopy for some weeks in the future. I spent the meantime in dread of the results.
Finally the day came, and my sister and I were there waiting when the doctor wheeled her out. When he saw us, he broke out in a smile. I was so relieved, because I thought it meant that the news was good. But it turned out he had found a tumor, which eventually killed my mother. I’ve always hated that doctor for that smile.
— Michael LuskWhen people die, there is no way to handle the situation correctly. I triy to tell people I care about them regularly, just in case.
There is no guarantee that a helicopter isn’t going to fall on your loved one today. If that would make you feel guilty, it’s time to remedy the situation now rather than later. You don’t need 30 days notice to handle the situation properly.
— Gene VenableMy doctor told me the lump on my neck was a bugbite and would go away within three months. Unfortunately, he wasn’t hiding bad news from me, he just misdiagnosed it. So I went thru a couple of months of increasing problems in my throat until I went to see a specialist who at the end of 5 minutes of examining me said he was close to certain I had cancer. He was right. MORAL: Correct diagnosis is preferable to “kindly” words.
My daughter developed a sore throat and while I was at work, my wife took her to the doctors, who decided to operate on an abcess in her throat right away. I found out years later that they had told my 10 year old that they were going to put her to sleep for the operation… and that her only connection to that statement was that animals get “put to sleep” when they are killed. Here’s a case where the doctor correctly informed her what was happening, but didn’t realize the different perspective a child might have on the language used. My daughter was VERY HAPPY to wake up and find herself alive (the pain in her throat was so bad, she apparently thought death would not be a whole lot worse). MORAL: Making sure the patient understands what you are telling them is sometimes more important than telling them “the truth”.
— ShedwannabeSomeone should not be admitted to medical school if she or he is unable to talk about difficult subjects in a compassionate, non-technical manner. It’s that simple. You cannot teach these abilities to someone; either they’re innately present or they’re not, and if they’re not present, the individual should not be trained as a physician. While they’re not sufficient to make someone a competent physician, they are absolutely necessary.
I can imagine that some folks in medical education will respond to this by saying that those are difficult abilities to assess. Nonsense.
— ZhenyaThank you, Catdancer, for making NYTimes aware of the fact that nurses cannot deliver diagnoses to patients, regardless whether it is a recurrence of a disease or a new diagnosis. It is considered outside the scope of nursing practice. Disclosing a diagnosis is within the purview of the physician alone.
This nurse was probably trying not to give information away before the doctor had a chance to speak with the patient, which is why she couldn’t/wouldn’t make eye contact.
However, there are definitely more therapeutic ways in which to maintain confidentiality between the patient and physician. This nurse could have been compassionate and present for the patient as she was in crisis, and maintaining eye contact is an important part of establishing trust in any relationship. RNs must continue to refine this aspect of nursing practice, as it is much more an art than a science.
FROM TPP — Yes, as I said earlier, my point was just that she treated us so differently. The nurses during various medical crises in my family have been wonderful caring people. This wasn’t a criticism of this one nurse. I think she was worried we were going to ask her something so she was avoiding us — but a few words of reassurance, that the medication would make my mom feel better and that the doctors would be in soon to speak with us, was all we really needed to hear. My guess is that she was inexperienced. Most experienced nurses I’ve dealt would have handled the situation differently.
— Sarah“Bad news” is a very difficult situation, because there are no net positives to breaching the subject. And let’s be clear here: “bad news” is a terminal prognosis, with little or no hope of recovery. No one closes the door and sits to break “the bad news” that yes, your ankle is indeed broken.
There is a lot of avoidance in health care today, because everything is specialized. There are specialists to talk to patients about the bad news itself, there are specialists to discuss treatment options, and there are specialists to discuss options that fall outside of treatment. “Bad news” is rocky and treacherous ground to cover in a conversation, and it is a much easier (not to be confused with better) road to leave it to the specialists who deal with “bad news” on a day in, day out basis.
In the nurse’s defense (in TPP’s case), I have seen health care workers act differently when there is even a moderate possibility of “bad news”. It is difficult to be cheery and chatty when the patient in Room #717 is showing signs and is being worked up for cancer or another terminal diagnosis. While often times the “bad news” diagnosis is the preliminary diagnosis that is the simplest and makes the most sense, it is not always the case. The pressure is there to not be the Negative Nancy doctor spending half an hour talking about metastasis, palliative therapy and hospice options when a mass or effusion or unexplained pain turns out to be due to a more benign cause. There is very real psychological trauma associated with these kinds of discussions.
Cancer and other “bad news” possibilities are also omnipresent for doctors. Many benign sounding complaints and presentations often have an unspoken “cancer” in the differential diagnosis. Sometimes the patients that you least expect will turn out to have only six months to live, and the ones with the classic presentations of a “bad news” diagnosis turn out to be just fine. It is impossible, impractical and potentially harmful to talk about “bad news” whenever it is a possibility in a presentation, because the possibility comes up much more often than patients think. It is a difficult task for a doctor to ascertain the point when clinical suspicion rises high enough to cross the line of when to start laying the groundwork for having the “bad news” conversation. It is definitely part of the Art of medicine, and not the Science.
— DrRonWhen my wife was pregnant and having complications the doctors at St. Luke’s in Tokyo in 1989 told me everything was fine, that she just needed to be “observed” after her water broke a month early. The culture of doctors in Japan is to never say bad news.
— Michael RowleyI got more and more furious as days past.
My wife nearly died.
I have found after attending college as a Chemsitry major that those who intended to become doctors had little interest in helping people. They did, instead, wish to be part of a profession so that could make tons of money. It is no wonder that whenever I meet a doctor they appear to be bothered to have to speak to a patient.
I hope that someday doctors are givng only a modest middle class salary. This way, we will attract people to the profession who are interested in becoming doctors to help people.
— TheresaFriends tell me I’m a hopeless optimist. But we all have our ups and our downs, and right now, I’m feeling pretty bleak about the doctor-patient relationship.
I saw some of the crazy back and forth from some doctors about empathy, as if it’s reasonable even to debate that it’s an essential part of health care.
I also read some very elevated academic discussions about the wonderful ways med schools are teaching it (sorry I’m feeling cynical about that).
In contrast to this, I have had my share of unfortunate experiences. And I see very believable posts, about the heartaches patients suffer, simply because many doctors and medical professionals do not or cannor integrate their minds with their hearts.
I like Dr. Chen’s spirit and the intention behind the column, but I really cannot justify the lack of emotional intelligence in caring for people’s health. There is absolutely no way to treat anyone’s body without taking their humanity into the package.
I’m not pointing any fingers, lest I provoke more complaints about the sacrifices of doctors, the lack of time and the pressures of the system. I’m only reporting what I see and how it affects me.
So far, the column isn’t bridging a gap for me, it’s widening one.
From Pauline Chen: I agree with how you feel about the doctor-patient relationship; it is in a pretty bleak state. But I have also found tremendous hope in the comments here. The comments have come from people who have widely varying perspectives and backgrounds. That these people have taken the time to write with such candor and heart means, at least to me, they care deeply about the issue. I can’t help but believe that that care will help bring us one step closer toward bridging the gap.
— WesleyThis has to be one of the most difficult jobs that any doctor faces — delivering bad news. (Full disclosure: I’m the child and brother of physicians.) I have been the recipient of bad news; the physician was clear, concise and also clearly upset to have to tell me that I had a positive result on an HIV test. He took some time to speak to me, and reassured me that he would be available to help me. While not a suprise given my “risk factors,” it was certainly a shock, and I think he handled it well.
That said, sometimes no matter how the news is delivered patients and their families will not react well. It is painful and frightening to know that you or someone you love has a life-threatening and/or incurable illness. If physicians want to minimize the hurt that can follow, honest communication is key, delivered with compassion.
— DMHWhen I was a mother of very young children, I remember experiencing a scary thing one day after picking them up at day care: Suddenly, as they played while I was making them dinner, a curtain descended on my vision and I could no longer see. I saw my kids though a windpw that let through perhaps 10 per cent of my normal perception.
— Mary Jo PattersonThough normally loathe to see a doctor, I made an appointment with an othamologist. He listened to my story and then said: “Either you have a brain tumor, or it is nothing.”
I was shocked and said nothing. My kids were 2 and 4. He said, “You seem upset.”
I said: “How old are you? Do you have children?” and “What are their ages?
He just stared. After a long silence, he said. “I get your point.”
I have had cancer, and only realized afterwards that I hadn’t been told the “whole truth,” and I did not like that.
However, I am not so sure about the example in the article, because nurses aren’t supposed to report the results of tests. What was the nurse supposed to do?
Tell me how the doctor handled it. ;)
— Gail PerryI’ve been doing two in depth graduate programs in preparation for my career as psychotherapist. I’m just now starting my third year.
In almost every course the “therapeutic relationship” is emphasized and in the practicums our therepeutic relationship skills are analyzed and critiqued and experimented with, with our colleagues. I’ve also found that in my professional work in social services the “therapeutic relationship” must be the first step in assisting others.
Perhaps bed side manner skills take as long to develop and study as do skills that serve how to set a broken leg?
— AnneLike, we wouldn’t expect the heart surgeon to also specialize in commercial plumbing!