"Mishaps are like knives that either serve us or cut us, as we grasp them by the blade or the handle."
-James Russell Lowell
He looks sad, like the world weighs heavily on his shoulders. I mistakenly think I understand why. “You look very down today. Am I right?”
“Yes. It has been rough lately. I have been going to the counselor and am making some progress.”
Before we first met two years ago, he had already been through a very difficult course of cancer treatment. Months of chemotherapy had been followed by a rocky course of radiation therapy. First, he had lost his hair then he lost his sense of taste, his saliva, and his desire to eat. Because his cancer had persisted despite his treatment, he had seen me for surgery. Now, two years later, he remains cancer free, yet the scars persist on both sides of his neck, he has little sense of taste, and he is fighting depression. “Tell me about your days,”
I ask. “My family tries to get me to go out, but I spend most of the day in bed or sitting in a chair. I can’t seem to get motivated.” “You went through a lot with your cancer treatment,”
I mention, restating the obvious. “It was a difficult experience for you.”
Then comes the surprise. “That’s just it!”
he exclaims. “I was so fortunate!”
I look at him. “Right now, my cousin, who has always been really healthy and who was my rock throughout treatment, is sick. I don’t know what to say to him. I don’t know how to help him. I feel like I was so lucky and just breezed through treatment. I don’t deserve to be doing so well.”
I am startled and think back to how terribly sick he was in the days when he was just recovering from his therapy. “You don’t know what to say to him? What did people say to you when you were hurting?” “Oh, a few were helpful just by staying with me and keeping me company. I got some cards. A few people said some really stupid things. Most people just stayed away from me. Some still avoid me, I think.”
He pauses. “I think I am avoiding my cousin.”
He pauses again. “That’s what I feel like I am doing.”
He looks at the floor. “I feel so guilty. I don’t know what to say to him because I was I so lucky and he is sick.”
I sit and listen. It is clear that he has somehow found a way to blot out at least some of the memories of his very difficult treatment. Nevertheless, the scars, both internal and external, are still fresh. What are the real issues? Insight and healing are still a long ways off. “I think I will go and visit my cousin this afternoon,”
he decides. We talk for a few minutes and he rises to go to see the psycho-oncologist. He smiles briefly then I watch as he heads down the corridor to his other appointment.
The following is feedback received for this blog:
You manage tell a lot with only a few words!
This is another one of those great posts which instantly sucks the reader into the moment you describe.
Posted 9:26 AM
“Always tell the truth. That way, you don't have to remember what you said.”
-Mark Twain“She must not know she has cancer! Do not tell her!”
“I must tell her,”
I respond. “How can we treat her cancer if she doesn’t know what she has?”“Others in our family have had cancer and they died! It will cause her too much stress to hear that she has it, too. Tell her she has some sort of infection.”
The son pauses. “Doctor, in our culture, the family makes the decisions in matters like this. We are only trying to protect our loved one. You must respect our values.”
I realize I am a Western-trained physician trying to negotiate my way with this non-Western family. How will we obtain informed consent? What about privacy regulations? Who will speak for the family? Does the patient truly want to assign this responsibility?
Until about 30 years ago, non-disclosure was the norm in our own society. When little could be done to change the course of many cancers, the paternalism of the times often led physicians to hide the diagnosis and prognosis from their patients.
Now, however, over 60 percent of newly diagnosed cancers will be cured. Many of these survivors will have gone through rigorous radiation regimens, extensive surgery, and side-effect-laden chemotherapy. How can we not honestly tell patients what to expect or why they can expect their hair to grow back when treatment is completed?
There is no one right answer. On a practical level, a recent article provides some guidelines for dealing with a family that insists on non-disclosure:
- Do not overreact. Take a deep breath and avoid becoming emotional.
- Attempt to understand the family’s viewpoint.
- Be flexible. Work with the family on dealing with practical issues.
- Respond empathically to the family’s distress. Remain open to the patient and the family.
- Talk to the family about what the patient would want.
- State your views as your views. Don’t be dogmatic.
- Propose a negotiated approach.
- Talk with the patient about his or her own desire for information.
Of course, not every person in a particular culture will feel the same way about relinquishing their care to the family. The physician also has to keep in mind that, in some cases, deference to a family’s request might actually lead to harm, inadequate care, or gross violations of Western autonomy-based ethics.
These situations make me sit up and pay attention because of the added stress of keeping everyone properly informed. Inevitably, there are miscues, but, if the relationships are established early, things can move forward. Whatever the family and I decide, I realize that each step of the process will be “interesting.” I am going to learn a lot.
Ref: Hallenbeck J, Arnold R, A Request for Nondisclosure: Don’t Tell Mother, Journal of Clinical Oncology
2007 (Nov 1); 25:5030-5034.
Ref: Macklin R, Ethical relativism in a multicultural society, Kennedy Institute of Ethics Journal
1998 (March); 8:1-22. (Excerpted in Biomedical Ethics
. Mappes TA and DeGrazia D, eds. McGraw-Hill, NY, 6th ed. 2006. pp. 118-127.)
Posted 12:31 PM
“The possible solutions to a given problem emerge as the leaves of a tree, each node representing a point of deliberation and decision.“
His treatment had gone well and the large mass in his neck had completely receded during six weeks of radiation therapy. Now, I had recommended a CT scan to make certain that his cancerous lymph nodes had completely disappeared. I was surprised by his initial response.
“No way, Doctor! I don’t want a CT scan!”
I asked. “Why?” “I heard that CT scans CAUSE cancer. I don’t want one!”
Indeed, he had heard news reports of a study
in The New England Journal of Medicine
highlighting the explosive growth in CT usage and warning that the radiation exposure might have real, long term consequences. Over 60 million CT scans were done in the United States in 2006, up from 3 million in 1980. Although no long term studies of people undergoing CT scans have been done, atomic blast survivors and atomic industry workers who were exposed to similar dosages of radiation have an increased risk of cancer, and the younger the age of exposure, the greater the risk. The authors estimate that up to 2 percent of cancers might be caused by CT scans.
Having a patient refuse a CT scan was a new experience for me; usually, I am the one telling patients that they do not need a scan that they want. Unlike scheduled mammograms for breast cancer survivors, no studies have ever shown a benefit of routine CT scans for survivors of head and neck cancer. The financial costs, as well as the emotional toll chasing down inconsequential or equivocal findings, can be enormous. Adding to the confusion, some physicians now skip the “routine CT” and go right to the much more expensive PET/CT scans.
On the other hand, the studies DO occasionally identify findings that respond to early intervention; for example, the images of the neck CT scan might pick up a new cancer or non-symptomatic lung nodule. Not frequently, mind you.
After assuring my patient that, in his particular situation, the benefits of potentially identifying residual cancer outweighed the cancer risk from an additional scan, he decided to go ahead with the study. A few days later, we called to tell him that the scan looked great.
Follow-up testing for cancer survivors can pose real dilemmas. Patients and families crave good news, and, for some, that requires more certainty than I can provide with a physical examination. My patient who was worried about the risks of CT scans reminded me that each test requires thought and each result requires a deliberate reaction.
Ref: Brenner DJ, Hall EJ, Computed Tomography – An Increasing Source of Radiation Exposure, New Engl J Med
2007 (Nov 29); 357:2277-2284.
The following is feedback received for this blog:
Good post. I wondered how you and other cancer docs were having to deal with this.
I was just discussing this with a friend, who also happens to be my mom's oncologist. For us, the benefits outweigh the risks...as her latest followup CT found a cancer in her ureter. Part of the risk of being HNPCC+.
- angela marie
Posted 12:09 PM
The Three Tasks of a Physician
“You don’t build a bond without being present.”
- James Earl Jones “Will you follow me even after my cancer surgery?”
the patient begs. I will continue to see you for as long as you are willing to return,
I respond. “Can we call you when we have questions?”
the daughter asks. Of course,
I answer. “Why did she get cancer? What can we expect?”
the husband wants to know. Soon, we are deep into a difficult discussion.
Tough questions keep physicians of every specialty busy. In order to evaluate and treat diseases, the demands of 21st century medicine require staying current with piles of journals and innumerable research studies. Office and hospital time is filled with performing procedures, prescribing medications, and administering treatments. The “softer” side of medicine — taking time to talk, provide explanations, and offer hope — takes a backseat whenever we view our main mission as providing intricate treatments for complex diseases. We all just get pulled along in the maelstrom.
In an earlier time, Lewis Thomas, MD
— gifted physician, researcher, administrator, and essayist — described
the primary tasks of a physician like this:
“First of all, the physician was expected to walk in and take over; he became responsible for the outcome whether he could affect it or not. Second, it was assumed that he would stand by, on call, until it was over. Third, and this was probably the most important of his duties, he would explain what had happened and what was likely to happen.”
How were physicians equipped to accomplish these tasks? Dr. Thomas amplified:
“The first two [taking over and standing by] needed a mixture of intense curiosity about people in general and an inborn capacity for affection, hard to come by but indispensible for a good doctor. The third, the art of prediction, needed education and was the sole contribution of the medical school.”
Thomas’s description comes from medicine at the time of his father’s medical school graduation — 1911. Thomas found medicine to be much the same when he started medical school in 1933.
Being accountable, being present, and making honest, informed predictions on behalf of our patients is never easy. Interestingly, despite the revolution in health care and explosion of information, these three tasks remain vital components of our profession. Things, it seems, haven’t changed all that much.
The following is feedback received for this blog:
Informed and to the point. Great post!
This article from NY Times adresses the value of emotional support from doctors:
Thanks for such an insightful post. I think the part about being there to explain and predict what happens is very critical to building trust with patients. In addition to this, knowing when to say, "I don't know" is a important way to build trust even though it somewhat violates the first rule, because then others know that despite seeming to have all the answers, you are smart enough to know when you don't have all the answers.
- Christian Sinclair
Posted 11:18 AM
A Suspicious Case
“Nothing is insignificant.”
-Samuel Taylor Coleridge
Winter reminds me of an incident from my internship …
I was six months out of medical school and on-call at a local hospital. One evening, I was called to the Emergency Room to evaluate a 3-year-old boy with a bruise on his forehead. Through her tears, his mother told me what had happened. The toddler had gotten cold playing outside in the snow and his mother had filled the bathtub with water intending to warm him up. When she wasn’t looking, he had tried to climb into the bath on his own, slipping as he did so and banging his head on the side of the tub. Although the boy was now playing happily with a toy, the mother was clearly upset. She sobbed as I took the boy’s history.
“Tell me what he did after he fell,”
“He started crying immediately! He was so upset! Is he going to be OK?”
“I’m sure he will be fine. Has he been healthy?”
“He has been very healthy, just clumsy. He falls a lot.”
I looked him over and, indeed, he seemed fine except for a small bruise on his forehead and a couple of scars. No other obvious injuries. “I’ll be back in a minute,”
I said and slipped out to look at his old records.
I was surprised by what I saw in his old chart. This was his sixth visit to the Emergency Room over the past few months. Each trip had been for a traumatic injury of some sort: a bruised arm, a burn, a possible concussion, a fall, etc. His X-ray jacket contained at least four sets of skull films plus studies of a leg and his wrists. I was just starting out in my career, but it still seemed like a lot of injuries for someone so young.
I went back to the Emergency Room. “I need to talk to my attending,”
I told her, “but I would like to have him admitted to the hospital overnight as a precaution.”
The mother reluctantly agreed. A few minutes later, the toddler was settled into a bed on the pediatric ward.
I had other duties to complete overnight, but spent some time thinking about the little boy. Was I right to be concerned about a 3-year-old with multiple trips to the ER for trauma? Was he just clumsy, or was he being abused? I placed a consult and asked the hospital Social Service department to send someone by to evaluate his situation.
The next day, after being up all night, I was walking through the pediatric ward. As I looked in on the toddler, his mother immediately rose from her chair and walked directly toward me, glowering.
“You think I have been abusing my boy!”
I was taken aback. “I didn’t know what to think, Ma’am,”
I replied. “He has made a lot of visits to the ER this year, and I was just being careful.”
“The social worker came by and is having Protective Services come to my house! They are going to see if I am a fit mother!”
She nearly spat in my face, she was so angry. “How could you accuse me of such a thing?” “I’m sorry, Ma’am,”
I mumbled, escaping as quickly as possible.
I still remember how I felt as she confronted me: I was tired, overwhelmed, and confused. I also remember feeling that I had done the right thing by admitting the child for a safety evaluation, trying not to take any chances and looking for patterns of injury that might indicate abuse. On the other hand, had I done the family a disservice if the child was clumsy or had a subclinical neurological disorder? What if the mother was merely incapable of discerning real emergencies from supposed ones?
Even now, years later, that uncomfortable confrontation still disturbs me. I never did learn what the investigation uncovered. Most of all, I hope that the little boy, who by now would be in his late 20s, survived his childhood intact.
The following is feedback received for this blog:
No child is that "clumsy" - instead of labeling my child as clumsy, I would wonder why he is falling so much at the age of three.
If he had a subclinical neuro disorder, the hospital was the place to be. If he was being abused, social service was the right one to call.
I hope the child grew up healthy and happy, but don't second guess yourself for one minute on this one.
You did the right thing; in fact, for someone so early in training, it was a great pick-up!
- Kim McAllister
Thanks for the feedback and for the reassurance. It would have been helpful to get some feedback at the time from the pediatrician or social worker.
It is funny how those formative experiences (especially the negative ones) stick with you for a long time. I spent high school and college summers and vacations as a nursing assistant ("orderly" in those days) in an ER and I probably remember more of those stories than from the last 10 years. They had an impact.
Thanks again. I enjoy your writing (and your images) very much. Keep up the good work!
You absolutely did the right thing. The fact that the mom was so vicious, and purposefully sought you out to shame you for asking for a social work consult, suggests to me that she is exactly the kind of person who could abuse a child. If you're still feeling the effects all these years later... I bet she was guilty. An innocent mom might have said, "Hey, I appreciate your concern for my child and I don't blame you for being surprised by all these recent falls. I'm happy to have someone come to my house - maybe they can help me figure out why he keeps falling?" You may have helped to get that child on a completely different path and maybe even saved his life. We physicians must learn to move beyond our comfort zones and investigate events that don't seem right - how many children remain in dangerous situations because their provider is passive or apathetic? ;)
- Val Jones
Posted 5:28 PM