Bereavement program serves needs of grieving CC families
Patients and their families often describe CC physicians and nurses as honorary members of the family. And when a patient dies—either while at the Clinical Center or after leaving treatment—those relationships between CC staff and patients’ families do not end, or at least they shouldn’t, according to the CC Pain and Palliative Care Service (PPCS) team.
“Families deserve that connection,” says Dr. Ann Berger, PPCS chief. “That emotional need is not over for the family the day the patient dies—and it shouldn’t be for us either.” As a means of continuing that service and support for families and staff, PPCS recently implemented a bereavement program. “Bereavement is part of palliative care’s mission,” she says.
For years, various CC units and staff developed ways of keeping in touch with families even after the death of these loved ones. They sent cards, made phone calls, shared bereavement information or organized on-campus memorial services. But the response was not CC-wide, and the need for a centralized process became clear to Berger and her team.
Since its inception five years ago, PPCS has worked with resources all over the Clinical Center, from social workers and volunteers to therapists with the recreation department—to improve the quality of life for CC patients. After noting the increasing need for a formal bereavement program, Berger adopted the cause as one of her team’s top priorities.
“There were several bereavement programs in existence prior to the initiation of a CC program,” explains Diane St. Germain, PPCS, and chair of the bereavement program planning committee. “For six months we gathered together people from PPCS, nursing, social work, spiritual ministry and patient relations. From their experiences, we learned what had worked and what hadn’t.”
When a patient dies, a physician, nurse or social worker notifies the bereavement program liaison. The liaison then consults with the patient’s attending physician to determine whether the family would respond well to bereavement support. Once the family is placed in the program, a volunteer arranges for a card to be signed by everyone who cared for the patient and sends it to the family.
Dr. Jacques Bolle, PPCS, and Tina Levin, Social Work Department, are responsible for training the program volunteers. “Their training includes role-playing in challenging scenarios they may encounter as well as presentations on listening skills and the various manifestations of grief,” says Bolle. “We also ask them to reflect on their own experience with loss.”
At one month, six months, one year and 13 months after the death, families receive a phone call from a volunteer. If there seems to be a risk of complicated grief, the volunteer will try to help the family member find a bereavement support group in the local community.
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The little girl who got to meet a very special little panda
The door to Rubi Garcia’s CC hospital room is covered with pictures of pandas, panda FAQs and hand-drawn colorings of pandas. It is an impressive collection, but even more so once the 15-year-old patient added photos from her visit with the National Zoo’s celebrity baby panda—Tai Shan.
|(l to r) CC nurse Siu-Ping Turk, Rubi Garcia and recreation therapist Kristin Johnsen stand in front of Tai Shan’s enclosure with a zoo keeper displaying the little panda in the background.
Ever since Tai Shan made his public debut at the zoo in December, Rubi has been anxious to meet him.
Because of Tai Shan’s popularity, the panda viewing area has been packed with people anxious to catch a glimpse. So how could a young patient at the Clinical Center get a private audience with the famous panda? In the end, all it took was a few people with big hearts and plenty of patience.
Frances Byrd and Kristin Johnsen, CC recreation therapists, adopted Rubi’s cause as their own personal mission. Both made phone calls to the zoo to see if a visit could be arranged. Other CC staff were also lobbying by phone and e-mail for Rubi to meet Tai Shan, and one—Dr. Richard Chang, Diagnostic Radiology Department—received a response from James Schroeder, executive director of the Friends of the National Zoo (FONZ) program. After hearing about Rubi’s unique situation, Schroeder immediately got to work. He arranged for a private viewing for Rubi, her mother, Leticia, Johnsen and Rubi’s nurse Siu-Ping Turk.
When Rubi was told about the impending trip, she was so excited. Unfortunately, there were a few more challenges to come. On the day of the scheduled outing, Rubi was too sick to travel. But she was determined to meet Tai Shan, and her friends at the Clinical Center and the zoo were equally resolute.
Finally the day came. On January 6, Rubi got to meet Tai Shan. A zoo handler carried the baby panda into the viewing area and held him near to the window so Rubi and her group could get a close look.
“The visit was so special for Rubi,” says Turk. “You could tell more from her expression than her words, but she did ask to pet the panda.”
Tai Shan started to fall asleep as his smiling, young visitor waved goodbye.
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CC researchers find a drug interaction that may increase risk of bone damage in HIV patients
CC researchers have determined that when HIV-infected patients take a steroid medication with an HIV protease inhibitor, this may increase their risk of bone damage. The drug interaction may also increase the risk of Cushing’s syndrome, which is a hormonal disorder caused by prolonged exposure of body tissues to high levels of steroids.
Published in the Dec. 15 issue of the Journal of Acquired Immune Deficiency Syndromes, the NIH study showed that ritonavir, a protease inhibitor used to treat HIV patients, taken with the steroid medication corticosteroid (used for inflammation), significantly increased the concentrations of prednisolone—the active form of prednisone—in healthy volunteers’ systems.
|Raul Alfaro (left), study team member, and Dr. Scott Penzak (right), lead author, found that when HIV-infected patients take a steroid medication with an HIV protease inhibitor, there may be an increased risk of bone damage and Cushing’s syndrome.
“Physicians have noted bone lesions on scans of HIV patients treated with steroids for inflammation,” said Dr. Scott Penzak, CC pharmacist and lead author of the study. “We wanted to find out if the problems might be at least partially explained by an interaction between the steroids and HIV drugs.”
Researchers gave ten healthy volunteers a 14-day course of low-dose ritonavir. They also gave the volunteers three doses of prednisone. One dose of prednisone was given before ritonavir was started as a baseline. A second dose was given after four days on ritonavir and a third dose was given after 14 days on ritonavir. Blood samples were taken after each dose of prednisone to determine steroid levels.
Prednisolone concentrations were 41 percent higher than the baseline amount after the drugs were taken together four days into the ritonavir regimen and 30 percent higher after the drugs were taken together 14 days into the regimen.
“These are statistically significant increases,” said Penzak. “They indicate that when the drugs are taken together, steroid concentrations in the body may rise to levels that cause side effects in some individuals. These results serve as a caution to clinicians treating HIV patients who are on concurrent steroid therapy. They may choose to start with lower steroid doses or to increase their level of toxicity monitoring compared to steroid recipients who are not taking protease inhibitors.”
“These small steps advance the safe practice of medicine,” said Dr. John Gallin, CC director. “Through continued clinical research, we can improve the health of all Americans.”
The study team includes Raul Alfaro and Dr. Michael Long, CC Pharmacy Department; Dr. Joseph Kovacs and Elizabeth Formentini, Critical Care Medicine Department; and Dr. Ven Natarajan, NIAID.
The team plans to continue studies of the blood levels of individuals on steroids and other HIV medications.
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Dr. Henry McFarland named new Medical Executive Committee chair
Dr. Henry McFarland, chief of NINDS’s Neuroimmunology Branch and MEC member since 2001, has been named chairman of the Medical Executive Committee.
At NINDS, McFarland also heads the Neuroimmuno-logy Branch. In 1998, he was awarded the Dystal Prize for outstanding research in multiple sclerosis. His studies of MS include MRI scans to follow natural history and designing clinical trials for new therapies. His lab also studies cellular immune responses to autoantigens of the central nervous system and examines therapeutic strategies targeting this response. McFarland first joined NINDS in 1975.
The MEC chair is required to be a clinical director. Each December the members of the MEC vote to recommend the chair for the next year, and the CC director then appoints the chair.
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Blood bank in need of your help—donate today!
Dr. Elias A. Zerhouni, NIH director, took advantage of the holiday season to give blood at the Clinical Center Blood Bank and phlebotomist La’Tesha Harris was more than happy to help. NIH employees and visitors can give blood and blood products by calling (301) 496-1048 to make an appointment. With plenty of free and convenient parking, it is easier than ever to give. Donations are always needed for the continuing support of our patients who come from all over the world to receive treatment. For more information on the CC Blood Bank, visit http://www.cc.nih.gov/about/donateblood.shtml.
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Where the words flow: The CC atrium fountain quotations
Have you ever stopped to take a closer look at the sculpture in the Hatfield Clinical Research Center’s atrium? There are 17 memorable quotations engraved on the surface of the bridge that forms part of the sculpture. The entire NIH community was invited to select these quotes long before the Hatfield Center opened its doors to the first patients in April 2005.
“Research is to see what everyone has seen, and think what no one has thought.”—Albert Szent-Györgi
“There are in fact two things, science and opinion; the former begets knowledge, the latter ignorance.”—Hippocrates
“Where there is no vision, there is no hope.”—George Washington Carver
“You see things; and you say, “Why?” But I dream things that never were; and I say, “Why not?”—George Bernard Shaw
“The first principle is that you must not fool yourself—and you are the easiest person to fool.”—Richard Feynman
|An aerial view of the sculpture and fountain in the Hatfield Center’s atrium.
“…for in the sciences the authority of thousands of opinions is not worth as much as one tiny spark of reason in an individual man.”—Galileo Galilei
“Science and art belong to the whole world, and the barriers of nationality vanish before them.”—Johann Wolfgang Von Goethe
“To wrest from nature the secrets which have perplexed philosophers in all ages, to track to their sources the causes of disease, to correlate the vast stores of knowledge, that they may be quickly available for the prevention and cure of disease—these are our ambitions.”
—Sir William Osler
“Liberty…is the great parent of science and of virtue; and that a nation will be great in both, always in proportion as it is free.”
“One never notices what has been done; one can only see what remains to be done.”—Marie Curie
“You will often reach patients and cure them by scientific use of your humanity.”—Clara Marshall
“Concern for man himself and his fate must always form the chief interest of all technological endeavors…in order that the creations of our mind shall be a blessing and not a curse to Mankind. Never forget this in the midst of your diagrams and equations.”—Albert Einstein
“…investigators…should not trust …authors who by employing only their imagination have wished to make themselves interpreters between nature and man, but only of those who have exercised their intellects…with the results of their experiments.”—Leonardo da Vinci
“In science as in other human activities, the speed of progress is less important than its direction.”—Rene Dubos
“Since new developments are the products of a creative mind, we must therefore stimulate and encourage that type of mind in every way possible.”—George Washington Carver
“We have a hunger of the mind which asks for knowledge of all around us, and the more we gain, the more is our desire; the more we see, the more we are capable of seeing.”—Maria Mitchell
“…we are too ignorant safely to pronounce anything impossible…it has often proved true that the dream of yesterday is the hope of today, and the reality of tomorrow.”—Robert Goddard
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NIH-Duke training program in clinical research
Applications are being accepted for the 2006-2007 NIH-Duke Training Program in Clinical Research. The program is designed primarily for physicians and dentists who desire formal training in the quantitative and methodological principles of clinical research. Courses are offered at the NIH Clinical Center via video-conference and academic credit may be applied toward a Master of Health Sciences in Clinical Research from Duke University School of Medicine. The program, designed for part-time study, requires 24 credits of graded course work, plus a research project for which 12 units of credit are given. Additional information regarding coursework and tuition costs is available at http://tpcr.mc.duke.edu or by e-mail at firstname.lastname@example.org. The application deadline is March 1 and space is limited.
CC in the news
Washington Post, Jan. 22, 2006— The paper’s RoadTrip feature in the Sunday Source section, which highlights easy day-trips throughout the DC area, mentioned the Clinical Center as a hot destination on the metro’s red line. Listed along with farmer’s markets, local eateries and other points of interest was the Clinical Center. “Make a healthy contribution,” the paper read, “buy art hung at the NIH Clinical Center and a portion of the profits will go to the Patient Emergency Fund.”
Milwaukee Journal Sentinel, Dec. 2005—Dr. Ann Berger, chief of the Clinical Center’s Pain and Palliative Care service, was quoted in an article on animal assisted-therapy.
Science News—Dr. Ronald Summers’ research was reported by numerous media outlets, including Science News, after his presentation at the annual meeting of the Radiological Society of North America and his publication in Gastroenterology, the American Gastroenterological Association’s journal. Summers, Diagnostic Radiology Department, published and presented his findings on the use of computer-aided polyp detection software in combination with virtual colonoscopy for colorectal cancer screening.
Save the date: NCI’s caBIG™ annual meeting April 9–11
The cancer Biomedical Informatics Grid™ (caBIG™) is a cancer research network composed of individuals and institutions that share data and tools. With the goal of developing innovative approaches for the prevention and treatment of cancer, caBIG™ is developed under the leadership of the NCI’s Center for Bioinformatics. At the upcoming caBIG™ annual meeting, attendees can participate in informational presentations, interactive breakout sessions, exhibit displays and technology demonstrations. This year’s meeting will be held on April 9–11, 2006 at the Hyatt Regency Crystal City. For more information on the caBIG™ initiative and the 2006 annual meeting, visit https://cabig.nci.nih.gov.
Volunteers needed for clinical studies
Participate in a clinical study to learn more about ovarian function. Information obtained from this study will be used to develop a test that will enable physicians to uncover various kinds of ovarian dysfunction early in a woman’s life. Women 18 to 25 years of age call 1-800-411-1222, or TTY 1-866-411-1010, for information. Study-related tests or treatment are provided at no cost. Participants will be compensated. Refer to study 00-CH-0189.
If you have uterine fibroids, you are eligible to join this study. Call 1-866-444-2214 or TTY 1-866-411-1010. Refer to study 02-CH-0287
Rheumatoid Arthritis/Juvenile Rheumatoid Arthritis, Systemic Lupus Erythematosus, Systemic Sclerosis or Myositis
This study is currently enrolling families in which an adult or child has one of the following symptoms listed above and is within four years of diagnosis. The study consists of a blood draw, urine collection and a survey. Participants must have a sibling from the same parents, be of the same gender and within four years of age. Participants will be compensated. Call 1-866-444-2214 or TTY 1-866-411-1010. Refer to study 03-E-0099.
White blood cells
Healthy African-Americans or Africans needed for a blood count study. You can help us understand why individuals have different white blood cell counts. Call 1-866-444-2214 or TTY 1-866-411-1010 and refer to study 03-DK-0168. Participants will be compensated.
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February 20 (Monday)
February 22 (Wednesday)
Noon–1 p.m. Lipsett Amphitheater
Flow Cytometry in the Evaluation of Primary Immune Deficiencies
Thomas A. Fleisher, MD, Chief, Department of Laboratory Medicine, Clinical Center
Grand Rounds: Pharmacogenetic Issues in the Management of HIV Infection
Scott R. Penzak, PharmD, Coordinator, Clinical Pharmacokinetics Research Laboratory, Clinical Center
February 22 (Wednesday)
3 p.m. Masur Auditorium
NIH Director’s Lecture
Epithelial Cell Polarity: Life in Between Two Worlds
Enrique Rodriguez-Boulan, MD, The Charles and Margaret Dyson Professor of Cell Biology in Ophthalmology; Director, Margaret Dyson Vision Research Institute, Weill Medical College of Cornell University, New York
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Clinical Center News, National
Institutes of Health, Building 10, 10 Center Drive, Room 12C440, Bethesda, MD 20892-1504. Tel: 301-496-6787.
Fax: 301-402-2984. Published monthly for CC employees
by the Office of Communications, Patient Recruitment, and Public Liaison. News, article ideas,
calendar events, letters, and photographs are welcome.
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