Appropriate, or too exclusionary?

I received this note last week during a BIDMC bone marrow registration drive:

Hello Paul, I'm writing to let you know that I really felt like a second class citizen today, when I went to register at the Bone Marrow Registry drive and was turned away because I am a gay male. I've been in a monogamous relationship for many years and when I read that if you have sex with men you cannot be a donor, I was really upset. I asked for a clarification from one of the folks there and they did uphold the Red Cross blood donation restrictions. I was not the only person turned away today. I do feel better after writing this email to you but I just really wanted to let you know about this experience.

I inquired of one our leukemia specialists, who replied:

The national marrow donor program follows the rules used by the Red Cross to screen volunteer blood donors. This includes taking a personal history and excluding people with exposures that put them at increased risk for infectious diseases. Reasons for exclusion include sexual history but also travel exposures and other categories. I am sorry if a person who was enthusiastic to help felt frustrated by the process. It is imperfect but meant to protect all involved.

My reply:

I'm just surprised that homosexuality is still considered a risk factor.

The response:

Understood, this is a hard issue that we don't really have control over. On a positive note, the drive went really well and we had 77 new donors enrolled in the national marrow donor program that might one day be involved in offering life saving therapy to patients with blood cancers. Something for the BIDMC community to be really proud of.

Of course I understand why we have to follow the national rules on this matter, and we certainly are going to continue to seek volunteer donors. Here is a pertinent excerpt from the rules:

You should not give blood if you have AIDS or have ever had a positive HIV test, or if you have done something that puts you at risk for becoming infected with HIV. You are at risk for getting infected if you are a male who has had sexual contact with another male, even once, since 1977.

I wonder if people out there have an opinion on the clinical validity of this particular aspect of the rules. Is this still controversial or generally accepted? Here is one article I found from 2000 concerning a decision by the FDA to uphold this rule, and here is a more recent article on the general issue.

oo, oo, Toody!

In a February 11, 1962, episode of Car 54, Where are You?, entitled "Toody and the Art World", the visual joke centers on a modern art painting that is styled "Lower Manhattan At Sunset From The New Jersey Side."

I don't remember the painting exactly, but this recent shot of Boston at night as I was flying into Logan Airport reminds me somehow of it.

Blackberry jam

Well over a year ago, I wrote about going cold turkey on my Blackberry. I didn't realize I was a trend-setter. Here's a lead from a story by Jackie Noblett in the Boston Business Journal entitled, "Blackberry Backlash: Reader poll reflects growing discontent with overuse":

There is a budding movement to squish the BlackBerry. Fed up with the constant tip-tapping and impromptu interruptions in staff meetings and conferences, the local business community is lashing back against the device, known in some circles as the "CrackBerry" due to its addictive powers. Some Boston executives have gone so far as banning them outright.

Just another day of surgery

I shared a podium today at a Boston University continuing medical education symposium with Linda K. Kenney, founder of Medically Induced Trauma Support Services, or MITSS. Her story and message were riveting.

On November 18, 1999, Linda went in for orthopaedic surgery on her ankle. By mistake, some of the nerve blocking medication went into her bloodstream during her pre-op preparation, causing a major seizure and full cardiac arrest. She woke up to find that her chest had been cracked open, where the doctors had performed open heart surgery to save her life. Later, someone lied to her and told her that the problem had been an allergic reaction to anaesthesia. Nobody talked to her the whole time about the real cause of the problem at the hospital, nor was there any follow-up concern showed after she arrived at home.

Out of this experience, Linda was motivated to create MITSS in May 2002, to create awareness and to provide open support services to all -- patients, families, and clinicians -- affected by medical events. She invented the term "medically induced trauma" to mean an unexpected outcome that occurs during medical and/or surgical care that affects the emotional well being of the patient, family and/or clinician.

Please check the website for more information about the services offered.

A footnote: Linda still goes to the hospital at which this occurred. See describes this as a peculiar kind of loyalty akin to co-dependant spouses with marital problems, and she notes, "I'll keep going back and watch how they are improving against themselves." Proving again that public disclosure of clinical outcomes is not a matter of creating competitive advantage or assigning blame: It is a tool for holding ourselves accountable to our own high standards for safety and quality of care.

Welcome third year medical students!

This is the first year of a new educational approach for third year medical students at Harvard Medical School. Instead of taking clinical rotations at the variety of Harvard teaching hospitals (BIDMC, Brigham and Women's, MGH, etc), the students will spend their entire year in just one hospital. We welcomed our first class today. Here are some of them. Meet me on Facebook, ladies and gentlemen!

What a social worker does . . . and feels

Each year, we give out the Bernice K. Snyder Award for Excellence in Social Work, and this year the recipient was Sarah Porell. In a previous post, I have talked about the essential role of social workers in the hospital. Sarah's acceptance speech, though, was a marvelous "job description" of what a social worker does, along with the doubts and joys associated therewith. Here are excerpts:

I feel like the work we get to do is incredibly privileged, sacred work. To be present to people in their most vulnerable moments is a privilege I pray I never take for granted or stop learning from. And I have to say, quite honestly, that while I am very grateful for my social work education and the skills it has taught me, I really believe that all the schooling in the world cannot fully prepare you for this work. Daily, I continue to fearfully pause at the threshold of patients’ rooms praying for the wherewithal to know how to handle God-knows-what tragic situation I am about to walk into. As we all know, some days are harder than others, and there is always a sigh of relief when all someone wants is a parking sticker.

I remember one of my first weeks back here as an MSW, I got a call from the ICU letting me know there was a 40 year old woman, mother of three young children, dying of cancer. Her parents and husband were at bedside and could I come see them. I PANICKED. I remember cataloguing my brain for the grad school lesson on young dying woman with children and was at a bit of a loss of what to do. It was my first experience of a dying patient, and I was terrified. Thankfully, I had the sense to ask for help and I paged Amy T, who graciously stopped everything she was doing and came to the ICU. We read through the chart, and she gave me a few words of guidance and assured me she would walk me through it. As I nervously followed her seemingly fearless stride into the room, she turned to me and whispered, "Just remember, lead with your humanity." Those profoundly simple yet wise words guide me everyday. And I have to say, some days I do this much better than others.

I think it's both the blessing and the struggle of this work that in addition to (or maybe even beyond) our clinical skills, our greatest asset to our work is who we are and how we use ourselves to connect with the patients, families and staff we serve. I think the clinical term is "differential use of self." When I have the opportunity to watch my colleagues in action or listen to case presentations, I am always amazed and inspired how each of us uses the uniqueness of who were are in our work.

But as we use ourselves, I know for myself, I continually struggle with questioning the efficacy of my work and wonder, when there isn’t anything concrete to measure success, if what I am doing makes any difference. However, I have come to learn through my colleagues that this is a question with which we all struggle and which keeps us humble.

To end, I would like to share with you a quote by Thomas Merton that has really helped me and I really feel speaks to this struggle and the work we all do:

"Do not depend on the hope of results. When you are doing the sort of work you have taken on, you may have to face that your work will be apparently worthless and even achieve no worth at all, if not perhaps, results opposite to what you expect. As you get used to this idea, you start more and more to concentrate not on the results, but in the value, the rightness, and the truth of the work itself. And there too, a great deal has to be gone through, as gradually you struggle less and less for an ideal, and more and more for specific people. The range tends to narrow down, and it gets more real. In the end, it is the reality of the personal relationships that saves everything."

The growth engine continues to rev

I wrote last year about the growth imperative in the health care sector. It continues unabated, as noted in two stories by Tom Palmer in today's Boston Globe. The Longwood area remains an engine of economic growth in the city and regional economy, with tremendous growth in employment and ancillary spin-offs from the clinical and research functions of the hospitals. This, in part, is the other side of the story of the high cost of health care. I am not offering it as an excuse for those cost increases, but mainly to remind folks that there is a benefit associated with that cost.

Food in every language!

Excuse me if I start to doze off. Our interpreters' annual lunch just happened, and I was "required" to taste everything from several dozen countries around the world. So, I am experiencing an early afternoon need for a siesta.

My discovery this year was catchupa, a Cape Verdean dish made by Fernanda (in photo). It has corn, beans, carrots, onions, pork, and other things cooked together for an hour or so. It is one of those comfort foods that makes you remember your childhood, even if you didn't come from Cape Verde! Other items today included a gazillion varieties of rice dishes, types of chicken, polenta, dumplings, ceviche, and, yes, "a few" desserts. All surrounded by good cheer and decorations from around the world.

Healthy Work/Healthy Home

Each year at this time, Jane Matlaw (shown at right) organizes a series of events at BIDMC to raise consciousness about steps that people can take to be better stewards of the environment. Part of the celebration is the presentation of Environmental Action Awards to people at BIDMC who have made a difference. Today, we presented a special award to Jane herself for leading this effort for 10 years. Congratulations!

We also had a special visitor, Ian Bowles, Massachusetts Secretary of Energy and Environmental Affairs (photo above). He gave a briefing on recent state initiatives in this area and graciously and thoroughly answered a number of questions from the audience. The key point to me was that we should "get out of the victim mentality" when it comes to rising energy prices and "take control" of our energy use by pursuing energy efficiency opportunities in our travel, homes, and businesses.

How good does this make you feel?

This email is reprinted with permission. I have omitted the person's name and redacted several details of personal and family medical history.

Dear Mr. Levy,

I am a Surgical Technician on the West Campus. I am writing to you to let you know about the truly special group of staff members you have on the fourth and fifth floors of the West Campus. These special people are my co-workers. I refer not just to my fellow surgical techs, but to the nurses, doctors, residents and anesthesia staff I work with every day. As outstanding as they all are in delivering care to patients, and doing so with Compassion, Professionalism, Respect and Integrity, they rise to heights you should be made aware of when it comes to one of their own.

The world should know what a special group of people we have here at Beth Israel Deaconess Medical Center. I remember at my orientation you came by to say "hello", and about a month later recognized me as a new employee and stopped to ask how it was going. That meant a lot then. Your kindness means a lot now. I have worked at the other major hospitals in Boston, and spoken to people from all over. No other place can a Surgical Technician and Nurse walk into an O.R. and have the attending ask how your kid's soccer game was this weekend, or us ask how their family reunion went. The same holds true for Anesthesia with nursing, the attendings with anesthesia, etc.

In most places of this size all the disciplines have their own worlds, their own lounges and spaces that never interact with one another. I hear it all the time. "You had lunch with Dr......!"., "What do you mean you hang out with attendings?", and it goes on and on. As I said, it starts at the top, and we see that in our O.R. (and the locker room) with Dr. Hurst (Note: Acting Chief of Surgery and trauma surgeon). I know many of my co-workers would follow that man into Hell. On some nights we do. Please continue to bring people of integrity like him, Dr. Joe Upton, Dr. Ben Schneider, Dr. Dan Jones, Dr. Ken Rodriguez, Dr. Bernard Lee, and all the rest of the staff we have on board. I could keep naming names. They inspire and encourage us each and every day.

Please allow me a moment of your time to tell you my story. The last year has been pretty much Hell for me and my family. (Details of family medical history omitted.) The world as I knew it had been turned upside down. I cannot begin to express the support from my B.I.D.M.C. family. It was inspiring.

I followed that up with being a patient on the West Campus. No less that 30 people visited with my wife and I in the pre-op holding area. Not only was my wife, a surg tech at (another hospital) was totally impressed by all of this. The other patients in the holding area must have thought I was related to you! My wife got a chance to see the family I speak so much and highly of up close and in person. The post op care was even more impressive.

Sounds like things could not get worse, but unfortunately they did. On Monday of last week, April 21, 2008, I was caring for my mother while my sister took a much needed two week vacation and I had a heart attack. My life and my family were once again rocked to the core. I was rushed to the Lahey Clinic in Burlington. I had three stents placed that day and was scared for my life.

I know this is sounding like a sad story, but it really is not. You see, this is where my coworkers and your employees once again carried me and my family when we were unable to do so ourselves. That very night my Nurse Manager called me in the hospital to see how I was and tell me not to worry about my job, just focus on what was important: my getting better and my family's well being. The calls started coming in that night to my wife's cell phone and directly to me from more people that I could imagine, all with the same message, " What can we do? How can we help?". I cannot begin to tell you the tears I shed, nor how humbling it is to have so many offer so much in our time of need. The next day once again my coworkers/family had my back. The cards, emails , and calls from surgeons, nurses and techs were non-stop. Offers of transportation to watching our daughter, to surgeons asking who do I call for you, or what can I do? WOW!!!!!!!!!!!!! How Blessed am I to have such a special work family that would go to these extents for me and my family?

I want to let you know that the doctors at the Lahey tell me I was VERY lucky and the stents are in a secondary vessel. The main arteries are unremarkable and there is no damage to my heart that they can see. With a proper diet and exercise I will see my grandchildren grow old. I am 44 and should live at least another 44 years if I follow all the rules. The O.R. staff tells me I am barred from the elevators and my lunches will be scrutinized, so the rest is a piece of cake.

I know this is a long email, and for that I apologize. I could not tell you of the exceptional people you have on the West Campus in just a few lines. I know your day is filled with lots of important business and meetings. I just felt I needed to tell you of a SPECIAL group of people I work side by side with that are my B.I.D.M.C. family. I know you will be as proud of them, as I am indebted, to each and every one. If the world were filled with more people like my co-worker family how special a place it would be.

Say "Hi!"

Please say hello to some of our new staff members, seen here at this morning's new employee orientation. I like to be the first to welcome the new people, to tell them about the history of our two antecedent institutions and the enduring values that drive our hospital. As I have noted earlier on this blog:

The description of the Deaconess -- "where science and kindliness unite in combating disease" -- was also the watchword for Beth Israel. Fortunately, the combined institution that resulted from the merger ten years ago maintains that set of values. BIDMC stands as a place where patients know they will be treated with warmth, friendliness, respect, and dignity. We do our best to treat each person as we would want a member of our own family to be treated. This is not just a saying: It is part of the culture of the place, and we deliver on that promise every day and night in the great majority of cases. We aim to continue to show our patients that level of caring and respect.

We warmly welcome our new staff every Monday morning and try to pass along this sense of purpose and mission, not only during the orientation, but during the weeks and months that follow.

Keep it moving!

Great use of a Segway: Monitoring live parking at the (several hundred yards long) traffic island at National Airport in DC.

Sunday, Breast Cancer, Washington

Just back from joining Shannon Brownlee, and Dr. Carolyn Clancy at this year's Annual Advocacy Conference of the National Breast Cancer Coalition Fund, “Beyond Ribbons to Revolutions" in Washington, DC. Ours was a plenary session entitled, Quality Health Care: Delivering on the Promise. Alice Yaker did a superb job as our moderator. Perhaps our session is written up on the conference blog, in which case you can read more about it there. (Photo, left to right, is of Alice, Carolyn, and Shannon.)

Thanks to Judi Hirshfield-Bartek and Susan Troyan (other photo), from BIDMC, for persuading me to cut short my regular Sunday morning soccer game to accept this invitation. They may be two of a very small group of people who could do that -- proving again the power of this advocacy group!

Speaking of breast cancer and advocacy, I want to invite people to attend the annual dinner of the Silent Spring Institute on May 15, at Boston's InterContinental Hotel. SSI is a non-profit scientific research organization dedicated to identifying the links between the environment and women's health, especially breast cancer. The dinner will benefit the Susan S. Bailis Breast Cancer Research Fund. We will be honoring Roberta Chafetz and Fredi Shonkoff with SSI's Rachel Carson Advocacy Awards.

Pasxa 2008

Nabbed this mouth-watering photo from a friend's page on Facebook. I don't know if she wants attribution. Will add it later if she does. An explanation of the word "Pasxa" on this blog: "... the passing over of Christ from here on earth to the Kingdom of Heaven."

Happy Easter to my Greek friends!

Great Horned Owl Nest

As part of today's walk in Natick at the Broadmoor Sanctuary, we had view of a great horned owl, with two chicks, nesting in a great blue heron's nest. We ran into Oktay Kaya, an accomplished wildlife photographer, who had set up his rig to get some shots of these lovely birds. Here's Oktay and a link to his website. Look closely and you can see the owl and a chick in his viewfinder.

Signs of spring in Natick

Back to Mass. Audubon's Broadmoor Sanctuary today for another walk on a beautiful spring day. Photos show that things are finally warming up. Yay!

Lean speech

For some reason, I have been invited to give lots of speeches and classes lately, mainly on the topic of how to achieve process improvement in hospitals to improve quality and safety. I view this as a bit odd since I am just learning this stuff myself. Maybe people like to hear about the process in mid-stream. Anyway, I enjoy these sessions, getting to know new folks who are interested in the topic, but, as often as not, learning more from them than they do from me.

I tend to accept almost all invitations from colleges, non-profits, civic organizations, and also local businesses -- as my part of the educational mission of BIDMC. If I think they can afford it, I ask for a small honorarium to support programs in our hospital. I also get requests from those companies that organize expensive one- or two-day seminars for business people who want to travel. In those cases, I ask for a very, very large fee -- a large multiple of what they charge their attendees -- and then they usually find someone else!

Today's group was the Lean Educator's Conference, organized jointly by Professor Earll M. Murman at the Educational Network of MIT's Lean Advancement Initiative and another university group called LEAN. LEAN is affiliated with Jim Womack's Lean Enterprise Institute -- Jim is flanked in the picture above by Prof. Joe Sussman of MIT's Department of Civil and Environmental Engineering and Prof. Judy Hoffer Gittell of Brandeis University's Heller School. The invitation came because Earll had heard me talk last October at the National Academy of Engineering on "Adapting Process Improvement Techniques to Academic Medical Centers."

Since there may have been repeat listeners, I had to find some new jokes . . .

Welche Sprache sprechen Sie?

This young lady is Joanna, one of our "greeters" who helps patients and families as they enter the hospital. Joanna and her colleagues answer all kinds of questions, give directions, escort people to their appointments, and are otherwise exceptionally pleasant and helpful.

But, this post is really about the item to Joanna's right, a rotating box with instructions in several languages to help people who do not speak English get the help they need. We have interpreters in over 30 languages. Good communication is not just a pleasantry in a hospital: It can be a matter of life and death.

High grades for all

I had a nice break from the office today when I went over to that liberal arts college in Cambridge and taught a session in a class called "Quality of Healthcare in America." I told the students that I would post a picture of the student who asked the best question, as judged by his or her peers in the class. They decided that the professor, Dr. Warner Slack, had asked the best question! So, the consolation prize is that they all get their picture in this post. Actually, though, I think most of their questions were better than his. I think they were just trying to flatter him into getting better grades.

Observations from Kampala

A note from my good friend, Dr. Honora Englander, who is currently on assignment in Uganda. Very well written, I think, with important observations about us as well as the local scene there. She welcomes your comments, too. (And please go back to these three posts to read about her previous Kenya experience.)

As many of you know, I have spent much of the last year thinking, learning about, and further developing work around humanism in medicine curriculum for African students. The basis for it came out of work that I started with Kenyan students to explore the personal challenges of providing care in a resource poor setting with high mortality from HIV/AIDS and other treatable diseases. "The Art of Medicine" in Kenya was based on a discussion series that we had while I was a resident at OHSU, where we discussed cases focusing on the personal aspects of providing care, instead of the typical clinical focus. The experience was meaningful and powerful for the Kenyan students, and many of them are eager to further pursue it. Seven of the Kenyan students have arranged to come to Kampala for an away rotation, in part to continue the conversation that we started a year ago. They arrive next week, and I am delighted to see them again. It is exciting, and as I return to East Africa I am reminded of the importance of these themes.

I hesitate a bit to write to you all about some of the things that are the hardest about being here. I have not yet sorted out my complex feelings about the dynamics and culture of care on the hospital wards, but I will share some of my early thoughts. My sense is that most, if not all, Westerners who work in a setting like this feel a certain frustration, and at times desperation, from the intensity of disease, limited resources, and the relatively slow pace to dealing with what they perceive as emergencies. There are critical labs that get drawn but not run, and life-saving treatments that get delayed until it is too late. Often in the afternoons and late evenings there are no doctors on the wards that are filled with ailing patients. I see many Westerners complaining, exasperated, and angry, about shortcomings of the system. And I hear repeated criticism about the "lack of accountability" and "professionalism" amongst local providers. I understand and see what people are talking about, but I feel that there is so much more to it all. And I worry about the effect that these critical voices from abroad have on an institution and a culture. These voices are hard to escape, and come with strong undercurrents of implicit assumptions and judgments made by visitors. And while I am grateful to be here, I do question the value and the harms of short-term visits by people from wealthy countries…. These questions are not new for me, but they are freshly revisited. I suppose they are what motivate my interest in promoting discussion amongst Africans around the art of practicing medicine, and also in encouraging a more thoughtful approach on the part of US collaborators and educators who send so many students and physicians overseas…