Reaching Across the Divide
They may forget what you said, but they will never forget how you made them feel.
-Carl W. Buechner
He was resting on a cart in the pre-operative area being prepared for his surgery. We had first met at the initial office visit, and I felt that we had made a connection. He looked up at me and smiled. "Did you get a good night's sleep, Doc?"
I pretended that I was trying to control my shaking hand. "Not too bad. I was up most of the night reading about your surgical procedure and weeping uncontrollably."
He laughed. "You kill me, Doc!" "We'll try not to,"
I promised. I stepped closer and laid a hand on his shoulder. "Do you have any questions for me?"
He shook his head and grinned. "Nah. I'm ready. Take good care of me, okay? And keep Betty posted, willya?"
He reached up and patted my hand. "Of course."
Pretty soon, he was wheeled down the corridor to the operating room.
I always assume that patients must have come to some comfort level with me before they would allow me to perform surgery on them. Then I ran across some remarkable writing by poet, author, and farmer Wendell Berry
In a lecture entitled "Health is Membership,"
Berry describes the giant chasm he sees between the healthcare system and its patients.
On the one side, the patientâs side, is the world of love. It is not a perfect world, but it depends on the interconnectedness of family, friends, and community.
On the other side, the healthcare side, is the world of efficiency, machinery, and statistical probability. The patient and the family are "amateurs." The healthcare workers are "professionals."
As Berry writes "... the amateur is divided from the professional by perhaps unbridgeable differences in knowledge and language."
As his brother was undergoing heart surgery, Berry and his family made several observations. "We realized that under the circumstances, we could not be told the truth. We would not know, ever, the worries and surprises that came to the surgeon during his work. We would not know the critical moments or the fears. If the surgeon did any part of his work ineptly or made a mistake, we would not know it. We realized, moreover, that if we were told the truth, we would have no way of knowing that the truth was what it was."
He also notes: "That these two worlds [of patients and caregivers] are so radically divided does not mean that people cannot cross between them. I do not know how an amateur can cross over into the professional world; that does not seem very probable. But that professional people can cross back into the amateur world, I know from much evidence."
We caregivers were, after all, born on the "amateur" side of the chasm, so we should know how to journey back. As for me, I like to think that I am reaching across each time I greet and shake hands with family members and then spend time listening to the stories they share. I try to cross the divide as I wait until patients have exhausted all of their questions.
Still, Berry reminds us that, in a hospital, "the world of love meets the world of efficiency or, rather, these two worlds come together in the hospital but do not meet."
The chasm exists even if we don't pay heed to it and it remains our responsibility, as caregivers, to reach across the divide whenever we can.
Posted 1:45 PM
A billion here and a billion there and pretty soon you’re talking real money.
My new patient looked very discouraged. I studied the reports from his treating physicians at the outside hospital. “Doctor, what happens next? They told me that the cancer didn’t go away! The doctor who sent me said you would have to do a big surgery!”
The questions poured from him. “I am just now feeling better. I can swallow and the pain is almost gone.”
I reviewed the outside studies and reports. He had presented with a cancer of the throat about four months before and he had undergone radiation and chemotherapy. “Let’s see … you finished your radiation and chemotherapy about a month ago, correct?”
He nodded. I checked his mouth and throat carefully and felt for enlarged lymph nodes in his neck. Indeed, his examination was perfect. There was no visible cancer anywhere. “But, Doctor, what about the cancer they saw on the scan last week?”
Ah, the scan. I pulled up the images of the most recent PET/CT, a sophisticated study that merges images of the anatomy (the CT portion) with a PET scan that shows abnormal uptake in areas cancer or inflammation. Each PET/CT takes over an hour to perform and costs several thousand dollars. The scans often yield very valuable information and have become important in the evaluation and follow-up care of cancer survivors.
His recent scan did, indeed, still show activity in his throat with only slight improvement from the scan performed a week before his treatment.
I looked at him. This was going to be a complex discussion. “The new scan is not very helpful,”
I told him. “Research has shown that PET/CT is often misleading in your situation when performed earlier than three months after completing treatment. Patients with head and neck cancer treated with radiation and chemotherapy almost always show continued activity while the body is healing. After three months, the healing activity goes away and the scans become more helpful. I am pretty certain that is what we are seeing here…your body is still recovering.”
He stared at me silently, not knowing whether to believe me or his other physicians. “You mean the test was useless?”
He paused, apparently remembering the out-of-pocket costs. “Are we going to have to do repeat it in a couple of months?” “Not necessarily,”
I responded. “When you come for another appointment in a few weeks we’ll decide what kind of tests to perform based on how things look.”
Why had his previous physicians ordered the PET/CT so quickly after finishing his treatment? No doubt, they had never run across the data and recommendations
buried deep in the medical journals. In addition, there is no system in place that flags expensive and marginally helpful tests to ask if they are truly indicated.
There are also certain characteristics of “typical clinicians” that might help explain why we do not always practice the most appropriate and efficient care (see the JAMA editorial
that is the source for the list):
(1) Physicians believe in what they are doing.
(2) Physicians prefer action, even with little chance of success, over no action at all.
(3) Physicians see apparent cause-and-effect relationships even when there are none.
(4) Physicians tend to rely on personal judgment more than evidence.
(5) When things go wrong, physicians tend to assign the bad outcome to chance.
I am no better than the next physician, especially in areas where I might not be expert. For people like me, we need to develop systems that block these types of errors. Although no one was hurt, plenty of money (both the patient's and the insurer's) was wasted.
Nationally, healthcare costs and health insurance costs are rising much faster than inflation. The combination of an aging population, complex and expensive healthcare technology, and limited success in promoting adherence to treatment guidelines will certainly drive costs even higher.
While the story here is an example of waste, it also provides a teaching moment that will improve medical care in the future. Too bad my patient had already undergone a very expensive and a very useless scan.
Posted 5:43 PM
Where to Begin?
Let justice roll down like water…
- The prophet Amos
Today, I wander away from my usual themes because this is a problem that really bothers me.
Fifteen years ago, Milwaukee was the home to the most devastating water-borne illness outbreak in U.S. history. Over 400,000 people became ill and more than 100 died when cryptosporidium contaminated the city’s drinking water supply. Since then, the city has spent more than $90 million on ozone treatment, better filtration, improved monitoring, and a 4,200 foot extension of the intake pipe extending into Lake Michigan. We are, again, safe.
At the time of the outbreak, I remember the sense of disbelief that anything like this could ever happen in a developed country. At the hospital, we used bottled water for several days. Beds were at a premium as more than 4,400 people were admitted to the area hospitals during the crisis. Soon, though, the contamination was controlled and everything went back to normal. The episode was quickly forgotten by those of us fortunate enough to have not been touched personally.
When I visited Tanzania earlier this year, I was struck by the number of women balancing brightly colored five gallon plastic buckets on their heads. Amidst a population with almost no personal possessions, the people treasured these pails. Like much of the developing world, such containers are indispensible in search by women and girls for water. Many spend two hours or more each day at the task.
The issue of water justice, particularly as a medical problem, was highlighted in a recent article
in The New England Journal of Medicine
. More than one-third of the world (2.6 billion people) has no reliable access to clean water for drinking and sanitation.
Many people in the developing world have access to only five liters of water each day; in the United States, we each use 50 liters each day merely for toilet flushing. We each consume approximately 350 liters each day for all of our activities combined.
In the developing world, the lack of clean water causes disease in several ways: by carrying pathogens, by permitting person-to-person transmission because of lack of hand washing, by carrying water-based hosts, by allowing breeding of water-based insect vectors, and by carrying toxins.
There are some problems where I, smugly, think I can make a difference. This problem, however, is an enormous, multi-faceted, overwhelming quandary that will take governments, education, and resources to remedy. The UN has challenged its membership to cut the number of people with no water access in half by 2015 and there are lots of good people
working on the problem. What can each of us do to make a difference?
Posted 8:43 AM
The Naked Truth about Tonsil Cancer
Most truths are so naked that people feel sorry for them and cover them up, at least a little bit.
-Edward R. Murrow “Doctor, I should not have cancer! I never smoked! I am only 45 years old! It doesn’t make sense!”
The patient and his wife sit stunned and frightened.
My new patient is absolutely correct … he does not fit the traditional profile of patients with cancer of the tonsil.
When I started training in the 1980s, the vast majority of our patients with these cancers were older men who had spent their lives smoking heavily and drinking hard. These were men that had out-lived many of their contemporaries despite wartime service, difficult lives, and chronic illness; now they were saddled with the burden of difficult, disfiguring, and often ineffective cancer treatment.
My patient today, though, fits the new profile as a younger, healthy, non-smoking person.
Recent research has confirmed the shift in the dominant demographic for tonsil cancers from older, smoking men to younger, non-smoking men. The cause for this shift is the Human Papilloma Virus (HPV), particularly HPV-16, HPV-18, and HPV-31.
in the Journal of Clinical Oncolog
y compared 17,625 possibly HPV-related cancers to 28,144 possibly HPV-unrelated cancers. Since the 1970s, the incidence of HPV-related cancer has increased by 53 percent. The good news is that HPV-related cancers are much more responsive to radiation therapy and have better treatment outcomes.
“But, Doctor, why did I get the cancer?”
Although the answer is fairly clear, this question remains a difficult one for me. The most common cause for HPV infection is through sexual contact. A study
in the New England Journal of Medicine
found that the greater the number of vaginal sex partners and the greater the number of oral sex partners, the greater the likelihood of developing one of these cancers.
I look at my new patient and his wife. To me, this does not seem to be the right time to discuss epidemiology.
Or sex. “The cancer is most likely from an HPV viral infection you picked up many years ago. We have a very good chance of curing your cancer.”
He looks relieved, then blurts out, “Do my kids have a higher likelihood of getting one of these cancers because I had one?”
I'm not certain. “I don’t know, but we hope that these kinds of infections and their associated cancers will be eliminated in future generations because of the HPV immunizations.”
I have to admit that I am still not comfortable knowing how and when to discuss this topic with my cancer patients. Clearly, though, we will be having more and more of these conversations in the future.
||The following is feedback received for this blog:|
Dear Doctor, usually it is the other way around, the patient is embarrassed to talk to the doctor. What we need is everyone feeling less embarrassed, and you certainly do not have to feel embarrassed online. I would like to have more specific information about this tonsil cancer and what exactly may cause it. I can read between the lines, but I would like to have this kind of info straight up....so to speak.
I presume you get this kind of cancer during oral sex, but is it oral sex with a female, a male or both? As a female I have always worried about passing on a yeast infection to the performing partner, although that never happend to me, it happened so a few people I knew when their husbands came down with a bad case of thrush. I could put two and two together and kind of figured out how it may have happened.
Also, for women, and this has been my experience, I would usually get a bladder infection, something I am prone too, after receiving oral sex. After avoiding oral sex, my incidence of bladder infection is way, way down. I really think there is a link, and women seem to have bladder infections a lot.
I will come out and say it, I think most people these days engage in oral sex, for some it is even a way to avoid pregnancy and other STDs, but I could be wrong, about the STDs that is.
We need an open to the point information about this subject. I would feel terrible if somehow I infected my sex partner with cancer! Darn...everything that is fun is either illegal or bad for you, or both!
I wish there was a simple explanation, but there is not. We do know from the New England Journal of Medicine article that people who have had >25 vaginal or >5 oral partners had 3X the risk of developing one of these cancers than people who had <6 vaginal or no oral partners. In addition, patients who had a positive blood test demonstrating the L1 antigen of HPV-16 (a very sensitive test for prior HPV-16 infection) were 32X more likely to have one of these cancers than people who did not test positive.
In patients who later develop these cancers, part of the virus’s genetic material becomes incorporated into the cells in the tonsil region in the same way it is incorporated in the cervix of women who develop cervical cancer. If a person is immunized before sexual exposure to HPV, the infection never happens and the genetic material is never incorporated.
I don’t think I am too embarrassed to talk about these issues with patients, but it certainly is not what most ENT doctors spend their days discussing with their patients! My concern is prying into the buried stories and potential land mines of a patient’s sexual history at a time when the biggest priority is developing a cancer treatment plan. On the other hand, the more information we gather, the better we might potentially be able to help people in the future. I applaud the researchers at Johns Hopkins who wrote the NEJM paper for their thoroughness in assembling sexual history data.
I appreciate all of your comments, but, for some of them, I would refer you to my fellow Froedtert & Medical College of Wisconsin blogger, Margarita Kressin, MD at Sexual Healing. I might try to tackle some of your other comments but that truly would be embarrassing!
Has any research been performed that explores the effectiveness of the HPV vaccine in preventing these oral/throat cancers?
Posted 12:23 PM