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This past Tuesday, I had another opportunity, like last year, to speak to a class of first-year med students at Case. It was part of their weekly “touchy-feely” seminar, the class that reminds them why they chose to become doctors in the first place.
The biggest message (I hope) I sent was that patients are whole people. Every single person sitting on that paper-covered table or lying in that sterile bed has hopes and dreams and fears as real and as valid as any of ours. Every single patient (and their spouses, children, and parents), has a life outside the walls of that hospital, has a past and, hopefully, has a future.
I really enjoyed my time there (you know I love to talk) and got to speak with some of the students afterward and hear their own stories (everyone has a story, of course, even if they’re not terribly dramatic or even if they don’t have the same platform from which to broadcast those stories that I do). There was one man, whose circuitous route to medical school was relayed to me by their instructor. He had been a mathematics professor at Oberlin for eighteen years, tenured and all, when his wife got cancer. He was so disappointed by her care (on what level I’m not sure) that he decided he simply must become a doctor himself to do a better job. Talk about not just sitting back and complaining about something you don’t like but actually doing something, changing your whole life, to improve it. That’s impressive.
The experience reminded me of the Yale Medical School commencement speech that my girlfriend Katy, a nurse in Charleston, sent me a few weeks ago. It’s very moving and powerful and is a strong reminder to these new young doctors that they have a choice: they can treat their patients, and their patients’ caregivers, as whole human beings. Or not. It’s long, but definitely worth reading:
Dean Alpern, Faculty, Families, Friends, and Honored Graduates…
I don‘t have words enough to express my gratitude for the chance to speak with you on your special day. It would be a pleasure and honor at any graduation ceremony. But, I have to tell you, to be up here in this role in the presence of my own daughter on the day that she becomes a doctor is a joy I wouldn‘t dare have dreamed up. I hope that each of you will someday have the chance to feel as much gratitude and pride and love as I feel right now, joining you, and, especially, joining Jessica. Thank you very much. I am so proud of you, Jessica.
Now, I have to tell you the truth about Jessica. Jessica was supposed to be a boy. At least that‘s what the ultrasonographer said when we took a look at “him” in utero. “Never been wrong,” said the ultrasound tech as she pointed out the anatomy – there was the “thing.” My wife and I were delighted. We saw the thing, too. Clearly. We had two sons already, and they were fantastic. A third boy – terrific!
But, you know, to be honest, and with no offense intended to Ben and Dan, who are here today, too, we were sort of hoping for a change. I had only brothers, and Ann, my wife, I knew, wanted a chance to raise a daughter. To our friends we said, “Boy… Girl…We don‘t care; just as long as he is healthy.” But… we were lying, just a little.
And then: the surprise. I was right there, in the c-section room – Ann delivered all four of our children by c-section – and, instead of Jonas, whom we were waiting for, out popped, not Jonas,
but Jessica. “Oh, my goodness,” the obstetrician exclaimed, “it‘s a girl!” Imagine the joy – Ann and I literally squealed. We screamed. “A daughter,” Ann screamed, “a daughter. We have a daughter!”
The obstetrician said, “Hmmmm…. That never happened before. That . . . thing on the ultrasound must have been the umbilical cord.” Whatever. No question at all – that was one of the peak moments of my entire life. I will never, ever forget it. I had a daughter.
How do I know that moment of miracle – that surprise and celebration? Well, it‘s obvious. I told you. I was there – I was rightthere in the c-section room, holding my wife‘s hand. Greeting my new, unexpected daughter. Watching the miracle.
Maybe you know this; maybe you don‘t. But, if that had happened 20 years before Jessica was born, or even 10, I would have missed it. I wouldn‘t have been there. I couldn’t have been there, because fathers weren‘t allowed in c-section rooms. We weren‘t supposed to be there. That was the rule. Then, somebody changed the rule; somebody courageous, I suspect. And, so, I got to see a miracle.
Let me read to you an email I received on Thursday, December 19, 2009. It came from Mrs. Jocelyn Anne Gruzenski – she goes by “Jackie.” I did not know Jackie Gruzenski at the time; she wrote to me out of the blue. But I have since connected with her. And, she gave me permission to read her email to me to you. Here‘s what she wrote:
“Dr. Berwick, …
“My husband was Dr. William Paul Gruzenski, a psychiatrist for 39 years. He was admitted to (a hospital she names in Pennsylvania) after developing a cerebral bleed with a hypertensive crisis. My issue is that I was denied access to my husband except for very strict visiting, four times a day for 30 minutes, and that my husband was hospitalized behind a locked door. My husband and I were rarely separated except for work,” she wrote. “He wanted me present in the ICU, and he challenged the ICU nurse and MD saying, “She is not a visitor, she is my wife.‟ But, it made no difference. My husband was in the ICU for eight days out of his last 16 days alive, and there were a lot of missed opportunities for us.”
Mrs. Gruzenski continued: “I am advocating to the hospital administration that visiting hours have to be open especially for spouses… I do not feel that his care was individualized to meet his needs; he wanted me there more than I was allowed. I feel it was a very cruel thing that was done to us…”
Listen, again, to the words of Dr. Gruzenski: “She is not a visitor; she is my wife.” Hear, again, Mrs. Gruzenski: “I feel that it was a very cruel thing that was done to us.”
“Cruel” is a powerful word for Mrs. Gruzenski to use, isn‘t it? Her email and the emails that followed that first one are without exception dignified, respectful, tempered. Why does she say, “cruel”?
We will have to imagine ourselves there. “My husband and I loved each other very deeply,” she writes to me, “and we wanted to share our last days and moments together. We both knew the gravity of his illness, and my husband wanted quality of life, not quantity.”
What might a husband and wife of 19 years, aware of the short time left together, wish to talk about – wish to do – in the last days? I don‘t know for Dr. and Mrs. Gruzenski. But, I do know for me. I would talk about our children. I would talk about the best trip we ever took together, and even argue, smiling, about whose idea it was. I would remember the black bear we met in a clearing in the Wrangell-St. Elias Range; the cabin at Assiniboine; the Jøtenheim mountains of Norway. I would remember being lost in Kyoto and lost in Prague and lost on Mount Washington, and always found again. Mushroom soup at Café Budapest. And seeing Jessica born, and Ben, and Dan, and Becca. We would have so much to talk about. So much. The nurses would pad in and out of the hospital room, checking i.v.s and measuring pulses and planning their dinners and their weekends. And none of what the nurses and doctors did would matter to us at all; we wouldn‘t even notice them. We would know exactly who the visitors were – they, the doctors and the nurses. They, they would be the visitors in this tiny corner of our whole lives together – they, not us. In the John Denver song it goes this way, “… and all the time that you‘re with me, we will be at home.”
Someone stole all of that from Dr. and Mrs. Gruzenski. A nameless someone. I suspect an unknowing someone. Someone who did not understand who was at home and who was the guest – who was the intruder. Someone who forgot about the black bear and the best mushroom soup we ever had – the jewels of shared experience that glimmer with meaning in our lives. Someone who put the i.v. first, and the soul second.
Of course, it isn‘t really “someone” at all. We don‘t even know who, or what it is. Its voice sounds rational. Its words are these: “It is our policy,” “It‘s against the rule,” “It would be a problem,” and even, incredibly, “It is in your own best interest.” What is irrational is not those phrases; they seem to make sense. What is irrational is what follows those phrases, in ellipsis, unsaid: “It is our policy … that you cannot hold your husband‘s hand.” “It is against the rules … to let you see this or to let you know this.” “It would be a problem … if we treated you on your own terms not ours.” “It is in your own best interest … to miss your daughter‘smoment of birth.” This is the voice of power; and power does not always think the whole thing through.
Even when it has no name and no locus, power can be, to borrow Mrs. Gruzenski‟s word, “cruel.”
I want you to celebrate this day. I want you to experience all of the pride, all of the joy that it brings you to have reached this milestone. I am not telling you Dr. and Mrs. Gruzenski‘s story to sadden you. I am telling it to inspire you. I want you to remember it, if you can possibly remember anything I am saying to you at this chock-full moment of your lives, because that story gives you a choice.
You see, today you take a big step into power. With your white coat and your Latin, with your anatomy lessons and your stethoscope, you enter today a life of new and vast privilege. You may not notice your power at first. You will not always feel powerful or privileged – not when you are filling out endless billing forms and swallowing requirements and struggling through hard days of too many tasks. But this will be true: In return for your years of learning and your dedication to a life of service and your willingness to take an oath to that duty, society will give you access and rights that it gives to no one else. Society will allow you to hear secrets from frightened human beings that they are too scared to tell anyone else. Society will permit you to use drugs and instruments that can do great harm as well as great good, and that in the hands of others would be weapons. Society will give you special titles and spaces of privilege, as if you were priests. Society will let you build walls and write rules.
And in that role, with that power, you will meet Dr. and Mrs. Gruzenski over, and over, and over again. You will meet them every day – every hour. They will be in disguise. They will be disguised as a new mother afraid to touch her preemie on the ventilator in the incubator. Disguised as the construction worker too embarrassed to admit that he didn‘t hear a word you just said after, “It might be cancer.” Disguised as the busy lawyer who cannot afford for you to keep her waiting, but too polite to say so. Disguised as the alcoholic bottoming out who was the handsome champion of his soccer team and dreamed of being an architect someday. Disguised as the child over whom you tower. Disguised as the 90-year-old grandmother, over whom you tower. Disguised as the professor in the MRI machine who has been told to lie still, but who desperately needs to urinate and is ashamed. Disguised as the man who would prefer to know; and as the man who would prefer not to know. Disguised as the woman who would prefer to sit; and as the woman who would prefer to stand. And as the man who wants you to call him, “Bill,” and as the man who prefers to be called, “Dr. Gruzenski.”
Mrs. Gruzenski wrote, “My husband was a very caring physician and administrator for many years, but during his hospitalization, he was not even afforded the respect of being called, “Doctor.‟” Dr. Gruzenski wanted to be called, “Dr. Gruzenski.” But, they did not do so.
You can. That choice is not in the hands of nameless power, not fated to control by deaf habit. Not “our policy,” “the rule.” Just you. Your choice. Your rule. Your power.
What is at stake here may seem a small thing in the face of the enormous health care world you have joined. It is as a nickel to the $2.6 trillion industry. But that small thing is what matters. I will tell you: it is all that matters. All that matters is the person. The person. The individual. The patient. The poet. The lover. The adventurer. The frightened soul. The wondering mind. The learned mind. The Husband. The Wife. The Son. The Daughter. In the moment.
In the moment, it is all about choice. You have a magical opportunity. You have the opportunity to decide. Yes, you can read the rule book; and someday you can even write the rule book. Decide. Yes, you can hide behind the protocols and the policies. Decide. Yes, you can say “we,” when you mean, “I.” Yes, you can lock the door. “Sorry, Mrs. Gruzenski, your 30 minutes are up.” You can say that.
But, you can also unlock the door. You can ask, “Shall I call you “Dr. Gruzenski”? “Would you like to be alone?” “Is this a convenient time?” “Is there something else I can do for you?” You can say, “You‘re the boss.” You can say, “Tell me about the best trip you ever took. Tell me about the time you saw your daughter born.”
In my first week of medical school, I was assigned a tutor: Dr. Edward Frank. He was a vascular surgeon, and he was to supervise me in my physical diagnosis course. I read what Harvard Medical School called, “The Red Book.” It was all about the history and physical exam. Hundreds of questions to ask – history, physical, chief complaint, review of systems, and on and on. I stayed up very late, studying all those questions; memorizing the ritual. I knew all the right questions, I thought. I met Dr. Frank the next afternoon, and he took me to see Mrs. Goldberg, who was in the hospital to have her gall bladder taken out. Dr. Frank brought me into Mrs. Goldberg‘s room, into her presence, introduced me, and invited me to begin. My very first history and physical.
“Tell me, Mrs. Goldberg,” I said, “when did your pain begin?” Dr. Frank, the surgeon, interrupted me. He gently put his hand on my shoulder, and he gave me a gift I will never, ever forget. And I will pass his gift to you. His gift was a question that The Red Book left out.
“Oh, Don,” he said. “Before you ask that, let me tell you something very special. Did you know that Mrs. Goldberg has a brand new grandson?”
Decide. You can read the rules. Or, you can say, “Pardon me.” “Pardon this unwelcome interruption in your lives. Thank you for inviting me to help. Thank you for letting me visit. I am your guest, and I know it. Now, please, Mrs. Gruzenski, Dr. Gruzenski, what may I do for you?”
Congratulations on your achievement today. Feel proud. You ought to. When you put on your white coat, my dear friends, you become a doctor.
But, now I will tell you a secret – a mystery. Those who suffer need you to be something more than a doctor; they need you to be a healer. And, to become a healer, you must do something even more difficult than putting your white coat on. You must take your white coat off. You must recover, embrace, and treasure the memory of your shared, frail humanity – of the dignity in each and every soul. When you take off that white coat in the sacred presence of those for whom you will care – in the sacred presence of people just like you – when you take off that white coat, and, tower not over them, but join those you serve, you become a healer in a world of fear and fragmentation, an “aching” world, as your Chaplain put it this morning, that has never needed healing more.
~ Dr. Donald M. Berwick, May 24, 2010
. . . always a teacher.
Last Tuesday (the morning after our lovely evening in the ER), I had the opportunity to speak to a class of first year med students at Case. The professor is a friend of mine and was a regular reader of Austin’s Carepage. She teaches what she’s dubbed the “touchy-feely” coursework at Case — always reminding med students to skip the medical jargon and speak in a language patients can actually understand or keeping them in touch with the more human side of science.
The topic was doctor-patient communication and I was asked to speak both as a diabetic patient and as the mother of a cancer patient. It was really interesting and so much fun. I could barely fit in all I had to say about the issue (shocking, I know). It was sort of funny because she kept reminding me ahead of time how little experience these students have had in medicine — they’re just a few months into their program after all — so it was me who had to make sure not to use too much medical jargon!
But I forgot to mention my most important piece of advice for new doctors and so, in case any of the hundreds of students in that lecture hall have found their way here, it is this:
Close the door.
I cannot tell you how many times a team of doctors will creep into your room late at night to check vital signs or look at an incision site (not sure why that needs to be done in the middle of the night but I guess they need something to keep them busy at all hours), and they come in quietly and usually I would just pretend to sleep right through it (because who really wants to make small talk at 3 am?) and finally they would leave . . . with the door still slightly ajar. And I’d lie there in bed with the hallway light streaming in and the hushed noises of the nurses’ station down the hall, wondering if maybe they were planning to return in a few minutes with some new medicine or replacement equipment, and I’d wait and wait and wait . . . And it wasn’t just that I didn’t feel like getting up because I was so comfortably sleeping. It was because I was sharing a bed with Austin who was (finally) sound asleep on my arm and it would have required detangling both of us from his IV lines and most definitely rousing a small someone who did not need to be roused.
So there you have it, my number one piece of advice from someone who has spent way too much time in a hospital: close that damn door. Nurses, by the way, never leave the door open behind them.