Communication: Past, Future, and Present
Mary Williams Clark, M.D.
It's a great honor to be asked to give this lecture; I'm in awe of the company in which I find myself, the previous Hector Kay lecturers, and hope to be able to repay Sheila Hubbard's faith in me by giving you something new and / or interesting to think about.
Communication is my topic: I'll point out some pertinent communication connections: past, future, and present. Then I'm mostly going to show you pictures and tell you stories about some of my patients, and what I've learned from them. Then, I'll beg your indulgence and read two poems about patients of mine; I'm learning to use this new-to-me way to communicate about them.
"The Past": I think Hector Kay would have appreciated my topic; he was very interested in communication, and was a major force in the establishment of the Inter Clinic Information Bulletin (ICIB), later to become the Journal of ACPOC, or JACPOC, which recently suffered an untimely death. [ICIB and JACPOC contain very useful references about specific limb problems; the ACPOC office has a set of back issues from which copies can be obtained.]
Hector was also the person in charge of approval of new clinics for the "Amputee Clinic Chiefs Association", as the early group was known. I was taken to my first Amputee Clinic Chiefs Meeting in 1973, less than one year out of my residency, by one of my professors at Pittsburgh, and I went home to try to establish a clinic at the Children's Hospital. It had to meet certain standards: a central place to meet, where all team members could be present to discuss the patient's problems together; and it had to have certain team members-at a minimum a "same doctor" each time, a nurse, a therapist, and a prosthetist; but the place was key, and Hector would come to inspect.
Hector Kay's lasting contribution was the sustaining support he gave to the early committee which eventually developed the International Terminology for Congenital Limb Deficiencies. These deliberations involved representatives from twelve countries and took years to achieve the goal of a worldwide standard nomenclature. [International Standards Organization # 8548-l;1989]
Several things recently occurred which seem fortuitous to me, related to my thinking about this talk, and important to mention to you: this week I saw the Past, in the Royal British Columbian Museum, in Victoria: an exhibit about the history of the peoples of Mongolia; and I learned that Genghis Khan's horsemen not only used bows with a 160-pound pull, which they could use accurately while standing in their stirrups at full gallop, and they often fled in apparent retreat, luring their enemy to come after them, and then stood and shot their arrows full gallop turned around; they also used message arrows: made with blunt, shaped tips, turned up, and wider and longer feathers, which made noises as they flew and with which the Mongols communicated to each other their situations and plans!
Last week I saw the Future, in Miami at the Pediatric Orthopaedic Society of North America meeting. Dr. Howard Steel, the retired but still very active Chief of the Philadelphia Shriner's Hospital, has established a lectureship for POSNA which stipulates that the topic can be anything but orthopedics. This year's Steel lecturer was Dr. Leroy Hood, Professor of Molecular Biotechnology at the University of Washington. He spoke about the Human Genome Project and the usefulness of the tools being developed for that project: his team (and others now) use protein-specific dyes in an automated system to read the genetic code. He showed us a "stained-glass window" slide of columns of colors which are the protein sequences of the DNA.
And Dr. Hood has recognized the emerging communication problems of the increasingly specialized disciplines, who speak different languages now. (Fig. 1. ) His answer to these is "double-mentored students", who will learn at least two of these languages and be able to think in both; these young students will also be able to envision the ways in which computers can help them, not just use computers as fancy typewriters as most of my generation do.
So what can I say to you now, in the Present? I bring you some examples of my experiences of people-to-people communication, and I'm reinforced in my belief in people by another piece of the past I learned this week in Vancouver, in a book about the Dunne-za, or Beaver, People of Northeaster British Columbia. The anthropologist author noted that anthropologists' knowledge, and therefore power, is obtained primarily from institutions and books; knowledge for the Dunne-za consists of their "direct experience of the world": so I bring you my direct experience, with a plea for us to practice this kind of exchange and connection as we plunge into a future which is filling with so many kinds of communication- answering machine to answering machine, fax to fax, computer to computer, etc.
What do you do when you first see a new patient? For some of us, that may occur in a newborn nursery, and we may be the first ones to have any information for the usually shocked parents of a baby with a limb difference. Many of us have heard the "war stories" of parents, about the sudden silence in the delivery room, the pause- sometimes a long pause- till anyone explains what's happening. One mother said she thought the baby was dead, until in the recovery room someone told her it was missing a foot. Another couple said that after the "pause" a nurse asked "Were you expecting a congenital deformity?"-- and before they could answer the doctor came to the nurse's side and pulled her away, saying "Don't talk to them."! So it's important if you're a consultant to go soon; examine the baby carefully and thoroughly, and then go, with the baby, to talk with the family. Admire the baby; help the bonding-give it to the mother to hold; sit down-so you're not "talking down" in any sense of the word; stay calm. Try to remember that they won't always hear exactly what you're saying-if you say "She may need to see some other doctors..."they may hear "You'll have to put her in an institution". Try not to use negative-sounding words like"defect", "malformation", "bad leg". I hear some families of children talking casually about "show the doctor your bad arm"- a child shouldn't have to think any part of themselves is "bad"! It's a short arm, a right arm, a left leg, whatever- but not "bad". You can talk about missing bones, parts that didn't develop well, etc. Don't be afraid to say "I don't know"- but say also "I can find someone who does".
Remember- there's a reason Mr. Rogers says "I like you- just the way you are," and no three- or four -year-old who has heard him say that (to them, looking right at them out of the TV) will ever forget it. This-loving their children just the way they are-is what we have to help these parents achieve with their children, as soon as we can.
What about seeing a patient or client for the first time, when you're not the first professional to encounter them? Remember "Eye to Eye". Bree Walker is an anchor news reporter for CBS, a beautiful woman, who happens to have hand-split foot syndrome ("ectrodactyly" in the old terminology). She spoke at a Hand Society Meeting a few years ago, and told of how she graded the doctors who saw her by whether they looked first at her, or at her hands. That's a pass/fail test- you only have one chance to get it right!
This (Fig. 2. ) is Pat (called Patty by his family, after his grandfather, short for Pasquale): 5 years old, with a BK amputation by lawn mower. I saw him first about two weeks after the accident. Initially he pulled his T-shirt over his head when I (or family members) wanted to look at his leg; he was reluctant to talk at all about it, to me or his family. It took him a long time even to touch the end of his leg, and still, after 3 or 4 months, he wouldn't look, even though he was wearing (and donning) his prosthesis by this time. I continued to talk to him, believing he was really listening, but after several months when he was still touchy about looking, I was a little exasperated: "Why haven't you found somebody you could talk with about this, Patty? It will really help you feel better if you can talk about how you feel..." I went on with his exam, then talked with his grandmother (while he pulled his T-shirt off his head, hopped down onto the floor, and crawled under a chair). About three minutes later, from under the chair, came "Well, Clark, it's because it's GONE!" ...Of course, (I stopped my discussion with the grandma immediately, and got down to his level, and said something like "You're right-- it's gone, and that's terrible.") Then, at his next visit, the grandmother said "He wants to see his x-rays," Sure. I got out the last film of his stump; no-he wanted to see the first x-rays--he remembered they took some in the ER.-so I found them showing the whole leg, in segments from the mover blade. Patty came over to look closely-"It was hurt pretty bad, wasnt it?" [Sometimes I understand what's going on]: "Yes, it was hurt so bad that they couldn't save your foot."...OK. From then on, he's looked, and talked, and said to me in the hall one day "You could call me Pat."
This (Fig. 3 ) is Jeremiah: another lawn mower BK, the father was on the mower as Jeremy ran around the corner of the garage. The family was determined to talk and weep together about the accident, and they had one advantage-Jeremy's uncle, his father's brother, was born without fibulas, and he's one of the National Handicapped Sports ski champions [and, I just learned, is on the U.S. Olympic team for the Winter Olympics 1998]. So by the time I met Jeremy, he and Uncle Todd had already talked about what sort of prosthesis he'd have. He was waiting by the elevator in Physical Therapy one day and noticed a little girl in a prosthesis-another of my patients, 3 years old, same accident, same story-Jeremy walked over to her and said "My leg got cut off by a lawn-mower-what happened to yours?" (And that began a useful conversation between her grandmother and his mother.)
You've heard examples of communication of professionals to patient/family, and patient to patient; now an example of professional to professional: and a reminder that if we do this, take the time to do it, it really enhances our communication with the patient and family also.
This is Kurt-Right PFFD, bilateral fibular deficiencies, and bilateral hand anomalies (making it a femur-fibula-ulna syndrome, I think). As an infant he was cared for by the Twin Cities, Minnesota Shriner's, by Dr. Frank Trost. The early advice of the team there, logically, had been "Don't let anyone amputate his legs, till we know what his hand function will be." He was eight when I met him; as I walked into the exam room Kurt sat with arms folded and said firmly "You're not going to operate on me!" They had seen 4 or 5 additional consultants since moving from Minnesota, and most of them had recommended amputation of his feet. He had equinus feet displaced lateral to the weight-bearing axes of the limbs, with no ankle stability, and his gait was significantly laborious, in prostheses fitted around the feet. His hands worked well. I too felt he should have foot amputations; I sat with Kurt and his mother, explaining this, and then videotaped his gait, and called Dr. Trost. With his help, reviewing the tape and talking by phone with Kurt and his mom, and an invitation from me to them to return for more discussion, we eventually (after a year) went ahead with amputations. (And he had a complicated post-op course, and used a wheelchair part time as he needed considerable work on strength and endurance.) And now he's almost 13, going to high school in the fall, and determined to walk full time.
We have this great opportunity to watch our patients grow up. [I showed] my teaching slide for VATER association-an infant with a tracheostomy (for his Tracheo-Esophageal fistula), a colostomy (for his Anal atresia), a deviated right hand due to his radial deficiency, ulnar and tibial deficiencies, and a duplicated great toe-and a later picture of him at six years, in kindergarten: he's an example of "listen to the patient"~he said he was falling down a lot; and he was in his new cowboy boots! (in a prosthesis that was set up for sneakers).
One of the many things my patients have taught me is the major importance of self-esteem. The team at CAPP have done much work in this area; Dr. Yoshio Setoguchi spoke last year, in this "space", about the importance of the Team. Tomorrow you'll hear Dr. Peter Rosenbaum, of McMaster University, whose work also centers much in this field; among other things he has shown that children's self-perceived social function correlates strongly with self-perceived physical competence. I found an article by Robert B. Brooks, PhD, in the Pediatric Clinics of North America (1992) entitled "Self -esteem During the School Years: its Normal Development and Hazardous Decline." In this paper he states that young people need to be told "You are unique and worthwhile, you have much to contribute , and you the abilities to assume responsibility for what occurs in your life."
For many years now some yearly "amputee camps" have been happening, and many of us see signs that this "patient to patient" opportunity does increase self-esteem. They provide fun, some games that require trust and communication; opportunities to share-good stuff and bad stuff-with people who may understand, and chances [as for a girl with a congenital transverse forearm deficiency, trying out crutches, and carrying around an above-knee prosthesis for a friend] to try out how it would feel to be differently different. I've been trying to talk kids into going to camp for about twenty years now-there seems to be a hurdle for many of them; maybe it's having to "define" themselves as "amputee" to go. The first success at convincing was a dad, whose daughter locked herself into their car in the parking lot before our first camp-he talked her out and onto the bus, and when he came to camp two days later to pick her up was told "Come back later-we're not done! "I've convinced a few others, including one who came because of the chance to fish-and caught the granddaddy catfish. But there have been some failures too- one I'm aware of is a young man with bilateral upper-limb phocomelia, with single small digits, very independent, very athletic, and very bright, he came to camp once, but was disappointed, I think, because even at this camp he had to deal with the curiosity of others, when he wanted to be just another kid and not be admired for something (his foot function) that comes naturally to him.
There are many aids to communication for and with our patients-many of these come from this organization: the Early Intervention Guide for Professionals, about congenital limb deficiencies; the booklets for families and teachers from the Area Child Amputee Center(Grand Rapids); the video and booklet "Upper Limb Prosthetic Options for Kids", from ACAC and RIC, publications like SuperKids and Sports 'n' Spokes. We should use them, and have them available in our waiting rooms.
A quick review of the Principles: "sit down"; "eye to eye"; "the child is always listening". The first segment of the mission statement of the Hershey Medical Center states "Our central responsibility to our patients to provide humane, compassionate, and expert care, emphasizing individual dignity". To me this means Introduce yourself, Explain what you're doing. Ask if there are questions, and Answer them-at the very least. Sometimes we have to remind ourselves-and the power above-to Remember the Children. Don't talk about the child as if she weren't there; don't talk differently to him-no higher voice, or louder-just simpler words sometimes; don't talk about them without acknowledging them-and they're listening.
And "love them just the way they are".
The 1995 Hector Kay Lecture