“So you’re perfect?”
“Yep.”
“Unfortunately, you’re CT isn’t perfect.”
Today in clinic, I had to tell a family that there is a new nodule in their child’s lung.
After the family left, the fellow who follows this patient with me asked, “How do you decide how to break news like that to them?” An excellent question. I’m not sure I have the answer.
When I was a younger oncologist, I would never have just come out and said, “Your scan has something bad on it.” I’d have worked up to it, emphasizing how well the patient is doing (assuming that’s true), and ultimately would try to use a more gentle euphemism when first breaking the news. I’d also ensure that by the end of the discussion we had moved beyond euphemisms and were speaking frankly about what the scan showed, but initially it somehow used to feel easier to start out softly.
More recently, I’ve found myself just coming right out and saying it. Bluntly.
I don’t know which is the better approach. I think that once one of my patients has a scan, the parents can’t think of much else other than what it shows. I think that approaching a bad result softly, with euphemisms, just delays the inevitable, and doesn’t really change the impact of the bad news. I wonder if it even makes it worse somehow, because as I’m saying something other than what the scan showed, I may be drawing out the anxiety and making things worse.
Of course, I’ve been blessed not to have ever been the parent of a child with cancer. How would I want the doctor to break news like this to me? I’m just not sure.
Thursday, September 4, 2008
A Concerning CT
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17 comments:
While I've never had a child with cancer, I have had a child with significant medical problems.
My reactions tended to follow Kubler-Ross's five steps, almost in text-book order: denial, grief, bargaining, anger, acceptance.
However, for me, none of that process can begin until I know the full scope of what we're facing.
We are thinking about the scans weeks before the appointment. It's the most important thing on our minds. Anything said before we hear that news probably won't be heard. Please say it first and as plainly as possible. Walk into the room and greet us. Then immediately tell us about the scans, with specifics.
Perhaps say, for example, that the blood work was all normal, but the CT showed a small 4 mm nodule in the right lower lobe of the lung, near the major fissure. Hand us a copy of the radiology report. Show us the view of the location on the CT, if possible.
You might give some hope that it could prove to be something else, but make that in accordance with what you believe is more likely.
Talk about the options, waiting or biopsy for instance, and what future options are available if this proves to be true recurrence.
One of the things we have often struggled with is in making future life decisions in the midst of uncertainty -- college, jobs, insurance changes, etc. Sometimes we need help deciding how this should impact those decisions, so we need as much reality as possible.
Give us a little time to process this information and ask questions. Then go onto the physical examination and other aspects of the visit. We probably came with at least one question about something else or possibly the need for new scripts -- we might need to be reminded at this point.
Thanks for the opportunity to give imput.
Being that my son has had three relapses with osteosarcoma, I, unfortunately, can share my thoughts on it. I don't know about every family - It probably depends on individual situations. But, we want to know excactly what we are dealing with as quickly as possible, regardless of how bad it is, so that we can begin the process of a treatment plan. It is what it is, and there is nothing we can do to change it, but there are options on what to do about it.
We always feel much better when we have a treatment plan in motion. My son, who was DX at 7, and is 15 now, has always wanted us to be completely honest and up front with him, so that he knows what he needs to do and why. Hope that helps. PS, Beating around the bush in my opinion does not do anybody any good, usually only causes more fear and uncertainty. As parents, we will find a way to cope with it in our own way and time.
A couple of additional thoughts:
We were told of the original cancer by a young doctor who had a hard time breaking the news. I finally had to ask him to spell it out. It was excruciating. Tell your students that it makes it worse to hesitate. If they have trouble formulating the words, maybe pretend it's being told to their peers. Pay more attention to the tone and leave out some of the technical jargon. No euphemisms, please.
Don't feel the need to say "I'm sorry" -- especially before breaking the news. I might want to hear this if the news were that there's nothing that can be done or if I or my child had broken down into a hard cry/sobs at the news. Otherwise, it probably makes the news seem worse than it is.
Out with it, Dr. D. There's really only 2 things being said, either "Your child is fine" or "The cancer is back". Our ears and hearts are ignoring everything else till we hear one of those things.
The rest is just window dressing.
Speaking from my own experience, the first time I was never told anything but the lightest details. Never even understood that cancer was in the equation. Having moved away and never having follow up was dangerous. But, what did I know. By the time it was huge and serious and hemipelvectomy was scheduled, I most definitely wanted to know the facts from the new doctors. One preferred euphemisms and didn't want to scare me needlessly. Thank heavens his partner was able to lay the cards on the table after he left the room, and answered all my questions without flinching.
Even through all the recurrences, I was grateful to know what the end result could be. I felt relaxed that I had thought about it, dealt with it, come to terms with it. I have grown up through all this, and now running a support group for others with the same diagnosis, I can say that when patients have doctors who speak gently about the new reality, especially if it is metastasis that will not respond to treatment, the family is much more likely to come away from the event feeling out of touch with reality, and are surprised and shocked when it hits. It seems to me much more damaging this way than when having to be confronted "bluntly" right up front.
On the other hand, I have seen those who were so offended that the doctor had even spoken so "negatively" and quickly sought out other opinions of those who would speak more "positively".
As difficult as it may seem for the family to face the facts right up front, it is much more traumatic when they have been hiding it from themselves behind some ambiguous statements from the doctor trying to soften the blow.
Please continue do as you did the last time and described in this post. I would like it this way as now your patiënts and their parents will have time within that visit to process while you examine the child and they need that time to come up with questions as otherwise it feels so "empty" when you have the news in the last minute and you cannot think, let alone talk about what has been said. The direct way is the only way that leaves time for a little chat. I know drs are very busy and wouldn't want to extend a visit so will get out and feel alone and full of questions...
Just my experience (am a grown-up with a sarcoma).
You know we hang on every word that is said in those circumstances. Clearly and succinctly give the results is my thought. Like you do.
I will say the one thing I wish I never heard was the "if you have to have cancer this is the one to have" line. I know it's statistically true sometimes. I know the comment is made to comfort the person. But statistics lie.
My two main bone cancer docs say either, "Everything is fine," or "I have a concern" when they walk in the exam room door. I like it that way.
We absolutely love and respect the doctors we have been working with regarding my son's osteosarcoma. They have been frank and immediate in sharing the exact situation we have found ourselves. My son was 6 at diagnosis. We have always tried to give the doctors an opportunity to give us critical news outside the presence of our son to give us an opportunity to either share the news with him ourselves and have them clarify or let them share the news with him. If you look for the date 3/26/2008 on the News section of our blog (www.greendrakkoman.com)you will see what I would describe as the only and best way I can imagine finding out osteosarcoma had metasticized to our 7 year old sons lungs and lymph gland. Be direct, honest and truthful. If you don't know tell us. If you have questions about how someone will want to get information after intial diagnosis you can always give them the option. With children I would say the question is more how much should come from doctor and how much from the parent. Our doctors have been great at putting things in terms that Ben understands and we know that as hard as it is when our primary oncologist is talking to him she isimagining how she would tell her own child. That is why I am in such awe and amazement at the quality of spirit pediatric oncologists have. There has to be a special wing in heaven, nirvana or whatever afterlife there is for pediatric oncologists.
I don't have a child with cancer, but (1) I am a breast cancer survivor and (2) I have a child with a genetic disease that requires lifelong treatment (heterozygous familial hypercholesterolemia). My cancer was discovered on a mammogram and the few days between being called back for another mammogram and when I got the diagnosis were excruciating. On the day I had the second mammogram I then had an ultrasound during which the radiologist said he was checking to see if it was a cyst. He said "it's not a cyst, you need to come in Monday for a biopsy." Actually, I didn't immediately "get it" when the radiologist said it wasn't a cyst, but then I made the mistake of calling my GYN that same day (after he had talked to the radiologist). He immediately starting saying "I'm going to get you a good surgeon and make sure you have the best care and the survival rates these days are very high." When I asked him what the radiologist had told him he would say only "I am not a radiologist . . . the radiologist is concerned . . . I don't want to ruin your weekend . . . we will have more information for you in a few days." Oops, too late, my weekend was already ruined.
When I went to get the biopsy on Monday, I told the radiologist that I wanted him to tell me what he had told my GYN. He said "I think we're proving cancer here."
In the case of my daughter, it took years before anyone came out and said the words "heterozygous familial hypercholesterolemia." This, even though my daughter's lipid profile is classic for heFH and there is a family history of very early heart attacks, including my husband's uncle and grandfather who suffered fatal heart attacks at 40 and 35, respectively.
I eventually sought out advice and information by reading cardiology journals and corresponding with cardiologists and FH experts in the Netherlands and elsewhere. Now my daughter and husband are being treated by Steve Nissen of the Cleveland Clinic.
One of the most painful things was how the various cardiologists we went to would go on and on about my daughter's diet. One wrote to my daughter's pediatrician that my daughter "admits to eating Poptarts." Guess what? You can't control heFH with diet and exercise to any significant degree.
Marilyn Mann
After rereading my comment I realized that it could be read as overly concerning, so I want to note that
1. my cancer was stage I, my nodes were negative, and my Oncotype score was only 5 (meaning a 5 percent risk of distant recurrence over 10 years if I take tamoxifen for 5 years).
2. My daughter's LDL is well-controlled with 20 mg atorvastatin (Lipitor).
My husband, on the other hand, is considered at high risk and is being treated aggressively with atorvastin 80 mg and other medications to reduce his risk of having a heart attack.
Now that I've said that, I hope the anti-statin people don't descend on your website.
When I was a working Oncology RN I had a patient say to me, "Bad news doesn't get better with time."
He said it well.
I would say it straight out, but don't necessarily expect your patients' family to hear you. When my daughter was first ill all that we knew was that there were 3 tumours, and it was almost a month before she was stable enough to have surgery. I'd assumed that it was cancer from the first moment that we saw the ultrasound, and all of the medical personnel that we talked to implied that it was most likely ovarian cancer.
She had her surgery and we found out that it was a germ cell tumour which had spread (still a great prognosis). The most surprising thing to me was that when we talked to the surgeon my ex-husband asked if it was actually cancer. No fault of his- he'd had a lot of contact with the doctors and nurses pre-surgery as well, but he just didn't process the words the same way that I did.
I don't think that beating around the bush really helps anyone, even if you need to repeat yourself a few times.
I want to thank each and every one of you who left a comment here, or who took the time to email me your thoughts directly. Although I may not have responded to you, I read every email and every comment. It's feedback like this that will allow me to keep getting better at what I do, and help me become the doctor I hope to be.
My daughter was diagnosed with type I diabetes when she was 4. Her pediatrician called me on the phone, told me she had bad news, and asked me to sit down. Now she is a brilliant, caring, and compassionate doctor who I completely trust with my child's health. But those few instants before she spit out the words 'diabetes' were among the worst in my life. I know it isn't cancer, but I echo the sentiments of others who say "spit it out." At least then you can begin the process of knowing what you're dealing with.
My daughter was dx with Wilms tumor stage IV w focal anaplasia in Sept 2010. I didn't get it at first. It took a moment too click that I was speaking to an oncologist about tests. Fast forward through the operations, radiation & chemo I almost speak your language & I loath NOT being fully informed. Since she is treated at a teaching hospital I have observed many different levels of experience and I know that it must be an extremely daunting task to break bad news. Early on her oncologists chose not to mention a nodule in the T11 for 7 weeks. I was very upset. The explanation was "oh, we thought it was nothing but now it looks necrotic on the scan." Now I can tell when there is something we are not being told & it's horrible because I need to trust whomever is treating my girl! She has gone into remission & we have 3 chemos remaining. Love this blog. Thank you!
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