N I H CLINICAL CENTERcc.nih.gov/participate/_pdf/pthbk03.pdf · Institute and branch 14 Why so many...

P a t i e n t H a n d b o o k

N I H C L I N I C A L C E N T E R

S E C T I O N O N E

Welcome

Our Credentials 2

Why you were selected 3

Your research program 3

S E C T I O N T W O

Patients’ Bill of Rights,Advance Directives,Informed Consent,Confidentiality

Patients’ Bill of Rights 4

Pain management 5

Advance directives for medical care 5

DNR orders 6

HIV testing and reporting of infectious diseases 7

Information concerning previous transfusions and the risk of AIDS virus infection 7

Informed consent and protection of privacy 8

Medical record information 9

Photographing fellow patients 9

Photographs and recordings 9

Protecting your privacy 9

Publications 9

Release of patient information to the media 10

Social security number and religion 10

Uses of information at NIH 10

Uses of information outside NIH 11

S E C T I O N T H R E E

Your DoctorsYour doctor at the Clinical Center 13

The doctor to talk to regarding questions about treatment 13

How often you will see your attending physician 13

Doctors may change 13

Knowing your Institute and branch 13

Seeing NIH doctors outside your Institute and branch 14

Why so many people are involved in your care 14

S E C T I O N F O U R

Patient Information

The admissions process 15

Banking 15

Buses and taxis 16

Call bell 16

Department of Clinical Bioethics 16

Department of Transfusion Medicine 16

Doctors’ rounds 17

Dress 17

P a t i e n t H a n d b o o k

C O N T E N T S

N I H C L I N I C A L C E N T E R

Electrical appliances/medical devices 17Food and lodging for companions 17

Gifts 18

Guidelines for children visiting 18

Hair grooming 18

Hospital discharge 18

Hospital volunteers 19

Identification badge 19

Identification bracelet 19

Information services and patient information 19

Language Interpreter 19

Laundry 19

Leaving the unit 20

Mail 20

Meals 20

Medicines 21

Metro subway 21

Money and valuables 21

Notary 21

Nursing staff 21

Pass 21

The patient care unit 22

The Patient Emergency Fund 22

Patient library 22

Patient Representative 23

Recreation services 23

Religious services and ministry 24

Smoking policy 24

Social work services 25

Telephones 25

Travel 26

TVs and radios 26

Universal precautions/isolation precautions 26

Visiting hours 26

S E C T I O N F I V E

Support Services forPatients and Families

Social work services 27

Barber and beautitian services

Family Friend Program

Inpatient relative/guardian program

Medic-Alert and stainless steel bracelets and necklaces

Outpatient voucher program

Social Security Administration

Wigs for patients

Other services 28

Children’s Inn

Clinical Center galleries

Friends of the Clinical Center

The NIH Children’s School

Nursing psychiatric liaison

S E C T I O N S I X

Other Useful Information

Handy telephone numbers 30

Parking at the Clinical Center: Guidelines for patients and visitors 30

To use valet parking 30

Special notes 30

At the heart of the National Institutes of Health’s (NIH) 318-acre Bethesda,Maryland, campus is a hospital unlike any other in the world. Called theWarren Grant Magnuson Clinical Center (after the Senator from the state ofWashington who championed NIH), this hospital is the world’s largest devotedsolely to clinical research.

The Clinical Center staff has compiled this handbook to help prepare you foradmission. The handbook provides information about practical aspects of yourhospital stay, such as visiting hours, support services, and where to leave yourcar. Some unique features of the Clinical Center are described so that you willhave a better picture of a patient’s daily routine in a hospital dedicated to medical research. We believe your stay will be more meaningful if you knowabout the services available and the procedures you’ll encounter as you adapt tolife on the patient care unit or as an outpatient.

When you arrive at NIH, you will easily recognize the Warren Grant MagnusonClinical Center, the largest red brick and glass structure on the campus. TheClinical Center comprises a hospital, an ambulatory care center, and researchlaboratories. The Clinical Center is the Federal Government’s premier researchhospital. It is committed to quality service and to meeting your needs andexpectations.

Through this philosophy, we hope to make your Clinical Center experience ascomfortable and satisfying as possible.

By coming to the Clinical Center, you are participating in biomedical researchthat enables us to learn more about health and disease. Your participation maylead to knowledge that could benefit you and future patients.

Thank you for joining us.

John I. Gallin, M.D.Director, Clinical Center

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w e l c o m e

Pat ient Handbook 1

OUR CREDENTIALS

The Warren Grant Magnuson Clinical Center,the world’s largest hospital devoted exclusivelyto clinical investigation, is the research hospitalfor the National Institutes of Health. NIH isone of five health agencies of the Public HealthService, which, in turn, is part of the U.S.Department of Health and Human Services(DHHS).

NIH is one of the largest research centers inthe world. The principal medical research armof DHHS, NIH conducts basic, clinical, andapplied research related to a broad spectrum ofdiseases and health problems. It represents thepublic’s commitment to biomedical researchand improving the health of its people. Overthe years, NIH has supported the work ofnumerous Nobel Prize winners.

NIH is actually numerous Institutes and Centerscreated to study cancer; eye disorders; heart,lung, and blood disorders; genome research;aging; alcohol abuse and alcoholism; allergy andinfectious diseases; arthritis, musculoskeletaland skin diseases; child health and humandevelopment; deafness and other communicationdisorders; dental and craniofacial disorders;diabetes, digestive, and kidney diseases; drugabuse; environmental health; general medicalscience; mental health disorders; neurologicaldisorders and stroke; nursing research; informa-tion technology; complementary and alterna-tive medicine; minority health and health dis-parities; research resources; and biomedicalimaging and bioengineering.

Patients at the Clinical Center consent to par-ticipate in research studies (protocols) and are

treated without charge. Unlike most hospitals,the Clinical Center does not routinely providestandard diagnostic and treatment services.Admission is selective: Institute physicianschoose patients solely because they have an ill-ness being studied by those Institutes. In addi-tion, numerous NIH guest scientists fromaround the world collaborate in ClinicalCenter activities. The Clinical Center alsooffers training in research medicine for physicians, medical students, and nursing students.

Thousands of patients are admitted yearly tothe facility, which houses inpatient wards andoutpatient clinics. Healthy people are alsoadmitted every year to serve as clinical researchvolunteers. Physicians from different Institutesand outside hospitals provide medical care at theClinical Center, and registered nurses and alliedhealth care professionals provide patient care.

A unique feature of the Clinical Center is the proximity of laboratories to patients.Advances realized in the laboratory arebrought to the bedside, and new areas for laboratory investigation are suggested by thehealth care team’s observations of patients.Built in 1953, the Clinical Center was speciallydesigned to foster this collaboration andexchange of information between basic scientists and clinicians. Indeed, many NIHclinicians are themselves outstanding scientists.

The Clinical Center is fully accredited by theJoint Commission on the Accreditation ofHealthcare Organizations. The Joint Commissioninspects hospitals and accredits only thosemeeting strict standards of quality.

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WHY YOU WERE SELECTED

You were selected as a Clinical Center patienton the basis of medical information providedby your referring doctor and/or by you. You areone of several people with a similar conditionwho will be invited to take part in a researchprogram. By observing many people with aparticular disorder, we hope to find commonfactors that will help us to better understandthe condition.

Some patients at the Clinical Center receivenew treatments that offer some potential foralleviating, improving, or curing their condi-tions. NIH doctors carefully monitor theirpatients’ responses to these new treatments.For other patients, too little is known abouttheir conditions to begin new treatment.These patients are admitted to enable us togain vital information about their diseases.

YOUR RESEARCH PROGRAM

Whether or not you receive new treatments, youwill be admitted under a care and observationplan developed to study your condition. Thisplan, called a protocol, specifies the informationneeded about your illness and the proceduresthat will be followed to obtain this knowledge.The protocol and the status of your healthdetermine how long you will spend at theClinical Center and whether you will be aninpatient or an outpatient.

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PATIENTS’ BILL OF RIGHTS

Whether you volunteer to participate in aresearch protocol as a healthy subject or as apatient, you are protected by the Clinical CenterBill of Rights for patients who are volunteer sub-jects. We, at the Clinical Center, believe thatpersonal concern for every volunteer is indispen-sable to the quest for knowledge about disease.The most important person in medical researchis the patient. The Clinical Center provides hos-pital facilities and professional care, but thepatient is the essential element without whichhealth and disease could not be observed orresponse to treatment measured.

Clinical Center patients’ rights are safeguardedby procedures to ensure that all patients knowtheir medical choices and are aware of any risksfrom the procedures and understand howresearch may affect them.

Members of the hospital staff have a responsi-bility to ensure the following:� the patient receives information necessary to

make decisions about taking part in anyresearch procedures

� care is given in a manner consistent with thepatient’s beliefs

� those rights basic to human dignity are observed

This Bill of Rights for Clinical Center patientshas been adapted from a similar document devel-oped by the American Hospital Association foruse by general hospitals.

1 The patient has the right to considerate andrespectful care.

2 The patient has the right to know, by name,the physician responsible for coordinating his orher care at the Clinical Center.

3 The patient has the right to obtain from hisor her physician complete current informationabout diagnosis, treatment, and prognosis ineasily understandable terms. If it is medicallyinadvisable to give such information to thepatients, it will be given to a legally authorizedrepresentative.

4 The patient has the right to receive from hisor her physician information necessary to giveinformed consent before starting any procedureor treatment. Except in emergencies this willinclude, but not necessarily be limited to, adescription of the specific procedure or treat-ment, any risks involved, and the probable dura-tion of any incapacitation. When there are alter-natives to therapeutically designed research pro-tocols, the patient has the right to know aboutthem. The patient also has the right to know thename of the person responsible for directing theprocedures or treatment.

5 The patient has the right to refuse to partici-pate in research, to refuse treatment to theextent permitted by law, and has the right to beinformed of the medical consequences of theseactions including possible dismissal from thestudy and discharge from the institution. If dis-charge would jeopardize the patient’s health, heor she has the right to remain under Clinical

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Patients ’ Bill of Rights, AdvanceDirectives , Informed Consent,

Confidentiality

Center care until discharge or transfer ismedically advisable.

6 The patient has the right to be transferred toanother facility when his or her participation inthe Clinical Center study is terminated, provid-ing the transfer is medically permissible, thepatient has been informed of the needs for andalternatives to such a transfer, and the facilityhas agreed to accept the patient.

7 The patient has the right to privacy concern-ing the medical care program. Case discussion,consultation, examination, and treatment areconfidential and will be conducted discreetly.The patient has the right to expect that all com-munications and records pertaining to care willbe treated as confidential to the extent permittedby law.

8 The patient has the right to routine serviceswhenever hospitalized at the Clinical Center inconnection with the active protocol for which heor she is eligible; these services will generallyinclude diagnostic procedures and medical treat-ment deemed necessary and advisable by the pro-fessional staff. Complicating chronic conditionswill be noted, reported to the patient, andtreated as necessary without the assumption oflong-term responsibility for their management.The patient may be returned for long-term ordefinitive care of these conditions to the refer-ring physician or to other appropriate medicalresources.

9 The patient has the right to expect that med-ical information about him or her discovered atthe Clinical Center, as well as an account of hisor her medical program here, will be communi-cated to the referring physician.

10The patient has the right, at any time duringthe medical program, to designate additionalphysicians or organizations to receive medical

updates. The patient should inform theAmbulatory Care Services Department staff ofthese additions.

11The patient has the right to know in advancewhat appointment times and physicians areavailable and where to go for continuity of careprovided by the Clinical Center when such careis required under the study for which the patientwas admitted.

PAIN MANAGEMENT

Every patient has the right to appropriate assess-ment and relief of pain.

ADVANCE DIRECTIVES FOR MEDICAL CARE

The rights of Clinical Center patients to partici-pate in decisions concerning their medical careare preserved even if they lose the ability to com-municate directly with their caregivers. Onemethod of exercising these rights is to prepare an“advance directive.”

An advance directive is a document in which aperson gives advance directions about medicalcare or designates who should make medicaldecisions for that person if he or she loses theability to make such decisions. There are two typesof advance directives: treatment directives, themost common example being the living will, andproxy directives, the most common example beingthe durable power of attorney for health care.

A treatment directive, such as a living will, is awritten statement expressing the forms of med-ical treatment a person wishes to receive orforego when unable to make decisions in statedmedical conditions. Such medical conditions mayinclude irreversible unconsciousness, terminal ill-ness, or severe and irreversible brain disease.

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A proxy directive, such as durable power of attorney,is a person’s written statement naming another tomake medical decisions for that person if he or shebecomes unable to make such decisions.

In 1990, Congress approved legislation called the“Patient Self-Determination Act.” This lawrequires all medical facilities reimbursed byMedicaid and Medicare to educate patients aboutadvance directives and to help them makeadvance directives if they choose to do so.Although the Clinical Center does not receivesuch financial reimbursement, there has been,and continues to be, a commitment to consistentand thoughtful attention to the ethical aspects ofpatient care, including advance directives.

The Clinical Center has guidelines for usingdurable power of attorney for patients in certainresearch studies. Work is in progress to expandthe Clinical Center’s ability to educate and helppatients make advance directives. If you haveany questions about advance directives, pleasespeak with your doctor, your nurse, the PatientRepresentative (6-2626), or the Department ofClinical Bioethics staff (6-2429).

DNR (DO NOT RESUSCITATE) ORDERS

At the Clinical Center of the NNIH, all mem-bers of the health care team are dedicated toyour care and well-being. We believe that one ofour most important responsibilities is to preserveand maintain the life and vigor of our patients.We also believe that patients have the right andresponsibility to participate in decisions abouttheir health care.

In this hospital, it is understood that if a patienthas cardiopulmonary arrest (sudden stoppage ofheart or lung function), every effort will be madeto restore these vital functions. Cardiopulmonaryresuscitation, or CPR, refers to the technique usedto restore these functions. These efforts will takeplace routinely, unless an order to the contrary hasbeen written in the patient’s medical record.

When a patient’s heart or breathing stops andCPR is started, a multi-step process begins. CPRmay include such procedures as chest compression,administration of various medications, electricalshocks to restart the heart, placement of abreathing tube (intubation), and placement on abreathing machine (ventilator). Patients receivingsuccessful CPR will usually be transferred to anintensive care unit (ICU) for continued treatmentand observation.

Although our hope is to restore health in all ourpatients, there are times when this will no longerbe possible. In certain situations, it is importantto discuss whether we should even try CPR. CPRmay not be appropriate for patients with a pro-gressive and terminal condition from whichrecovery is no longer possible. Making this decision should be a joint process in which thepatient, the physician, the nurse, and thepatient’s family are involved. Other persons onthe health care team experienced in discussingthese matters with patients include chaplains,social workers, and the Patient Representative.The decision to write the DNR (do notresuscitate) order, however, rests with thecompetent patient and his or her physician.

If the patient is not competent, the decision restswith the patient’s surrogate and physician.

If the patient, in consultation with his or herattending physician, decides that CPR is not

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appropriate, at least at that particular time, theattending physician will write a DNR order, ora “No Code,” in the patient’s records. A DNRor No Code order means that CPR will not bestarted.

It is important to remember two points about aDNR order:

� The DNR order will be reviewed regularly.Entering a DNR order into a medical recorddoes not mean that the DNR order is permanent.A DNR order can be reversed if it becomes med-ically appropriate. If a patient changes his or hermind about the DNR order, this should bediscussed with the attending physician.

� Even if the DNR order is written, this doesnot mean that other lifesaving treatments, suchas antibiotic administration, will be withheld.All treatments related to pain management, orother treatments agreed to by the patient andthe physician, will be given.

We hope this information will help familiarizeyou with choices related to your health care.We encourage you to discuss this, or any aspectof your care, with your family and your physicianand with other members of your health careteam.

HIV TESTING AND REPORTING OF INFECTIOUS DISEASES

As a Clinical Center patient, you may be askedto provide a blood sample to be tested for anti-bodies against the human immunodeficiencyvirus (HIV), the virus that has been identified as the cause of AIDS (the acquired immune deficiency syndrome). If testing is indicated foryou, your primary caregiver at the ClinicalCenter will ask for your permission to do the test.Further information about HIV testing is

available in the booklet “Testing Your Blood forHIV, the Virus That Causes AIDS.”

The Clinical Center may report certain commu-nicable diseases, including HIV infection, toappropriate State and Federal Government agen-cies. If you have any questions about HIV testingor this policy, you can discuss them with yourcaregivers in the Clinical Center or the ClinicalCenter HIV Counseling Coordinator. The HIVCounseling Coordinator may be reached at 301-496-2381 or through the page operator at301-496-1211.

INFORMATION CONCERNING PREVIOUS TRANSFUSIONS AND THERISK OF AIDS VIRUS INFECTION

In March 1985, the nation’s blood supply wasfirst screened for the presence of HIV, the virusthat causes AIDS. Between 1977 and 1985, how-ever, patients were at risk for exposure to theAIDS virus if they had received unscreenedblood and blood products. About 12,000 peoplewho were infected with HIV through bloodtransfusions given during those years are alive.

If you received a blood transfusion between 1977and 1985, there is a small, but real, risk that youwere exposed to HIV by the transfusion. Thisrisk will vary depending on where you receivedthe transfusions and how many units you received.Most people exposed to HIV by transfusions donot develop symptoms of AIDS in the yearsimmediately following the transfusion, yet theymay be able to pass the virus to their offspring(via childbirth) or to their sexual partners. Forthese reasons, the NIH Clinical Center recom-mends that HIV testing be offered to all patientstransfused between 1977 and 1985.

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When your medical history is taken by theadmitting physician, you will be asked if youhave ever received blood transfusions. If youinform the physician that you were transfusedbetween 1977 and 1985, the doctor will recom-mend that a test be performed to detect the pres-ence of HIV antibody in your blood. This test isa very reliable indicator of exposure to the AIDSvirus. Please note that AIDS virus testing is rec-ommended, but not mandatory. You will be askedto sign an informed consent form that gives uspermission to test your blood for HIV. These testsare carried out promptly and confidentially at theClinical Center.

If you cannot remember or are uncertain if youreceived transfusions, your physician can ask theClinical Center Department of TransfusionMedicine to check its records to see if youreceived a transfusion here. This information willbe accurate and complete for transfusions givenat the Clinical Center but will not include arecord of transfusions given elsewhere.

If you would like more information or counselingbefore or after HIV testing, you may contact theClinical Center HIV Counseling Coordinator at6-2381. Counseling may cover issues such as themeaning of a positive test, the confidentiality oftest results, and the potential risks to familymembers or sexual contacts if a positive result isfound. The results of the HIV screening test willhave no impact on the quality of care youreceive at the Clinical Center.

INFORMED CONSENT AND PROTECTION OF PRIVACY

While you receive medical care here, informa-tion gained from studying your condition willhelp us to better understand your illness and todevelop or improve treatments or methods ofprevention.

Because you consented to take part in research,we have a responsibility to inform you about theprocedures we use and what you can expect fromyour stay.

Your doctors and nurses will explain treatmentsand tests, and very often, your written consent isrequired before they are administered. If a treat-ment is relatively new and not yet generally used,or if it is a test mainly for research and not foryour immediate benefit, your doctor will makethis clear and will ask for your written consent.However, you may have questions later evenafter you have given your consent. Please do nothesitate to discuss these questions with your doc-tor, nurse, social worker, chaplain, or PatientRepresentative (6-2626). We want you to under-stand exactly what is being done and why.

If at any time you wish to withdraw from theresearch study, you may do so. The ClinicalCenter will provide short-term medical care forany physical injury resulting from your participa-tion in research here until such time that the NIHhas determined that you can be safely discharged.

Although data from the studies in which youparticipate may be used widely in medicalresearch, information about you as an individualis confidential. Generally, access to this informa-tion is restricted to NIH staff involved in the

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patient care and research programs. Your doctorand other physicians or organizations you specifywill also receive your medical information.

You are entitled to receive a copy of the protocolconsent form you signed. Ask for this when yousign the consent form.

MEDICAL RECORD INFORMATION

If you have questions about access to your medical record or the release of information contained in it, please call the Medicolegal section of the Medical Record Department at 6-3331 or stop by room 1N216.

PHOTOGRAPHING FELLOW PATIENTS

If you wish to take a photograph of your fellowpatients, please ask their verbal permission. Youmay photograph patients in their rooms or in theunit lounge, solaria, or outside the Clinical Center. Please refrain from taking photographs ingathering places such as cafeterias and lobbies.

PHOTOGRAPHS AND RECORDINGS

Some types of medical information cannot berecorded completely in writing. Photography,tape recording, and other audiovisual methodsare sometimes much better. Audiovisual recordsthat could reveal your identity are never madeunless you have given your prior written permissionon a special form, which states the particular usesthat will be made of the records.

PROTECTING YOUR PRIVACY

Patients who give information about themselvesor their families to the doctors and other workersin a hospital expect the information to be keptconfidential. We will do this to the best of ourability. However, you should be aware that neitherthe Clinical Center nor any other medical institution can absolutely guarantee confidentiality.

In 1974, the U.S. Congress passed a law calledthe “Privacy Act.” This law puts strict limits onhow Federal agencies may use and disclose person-al information, including medical information. Itrequires every agency to inform each individualwhy he or she is asked for information and howit will be used.

Physicians and other scientists at NIH conductresearch by authority of the U.S. Congress,Section 301 of the Public Health Act (42 UnitedStates Code 241). The research in which patientsor volunteers participate ––clinical research––takes place mainly in the Clinical Center inBethesda, Maryland.

The medical and other personal information youare asked to give, as well as the information fromvarious tests, is gathered for two purposes: to pro-vide the best care and treatment for you as a patient,and to allow for research to increase understandingof health and illness. Both good treatment andgood research depend on accurate and completeinformation. However, just as your coming to theClinical Center as a patient is voluntary, yourgiving the information we request and participatingin various tests and research procedures is alsovoluntary.

PUBLICATIONS

Some of the information obtained from you mayappear in scientific publications or be presentedto professional audiences at meetings. It may beused for the purpose of teaching health profes-sionals or students in the health professions.Under these circumstances, measures are takento conceal your identity.

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RELEASE OF PATIENT INFORMATION TO THE MEDIA

Occasionally, we receive media requests for infor-mation about patients who are being treated atthe Clinical Center. Inquiries may be made espe-cially if a patient is a public figure or celebrity.These requests are handled by the Office ofClinical Center Communications (OCCC), thepublic affairs office for the hospital. Our primaryconcern is patient welfare, but we also have anobligation to cooperate with the media.

The only information that may be released to themedia without the patient’s prior written permis-sion is verification that the person is a currentClinical Center patient.

Medical records, including diagnosis, are confi-dential and will not be released to the media.

If you are contacted by the media while you are apatient here, or if you have questions aboutClinical Center media policies, please callOCCC at 6-2563.

SOCIAL SECURITY NUMBER AND RELIGION

At the time of your admission, you were asked togive your social security number and your religion.Giving this information is strictly voluntary, andthe admissions clerk will emphasize this.

If your social security number is required for anyfinancial transactions, this will be explained toyou.

Knowing your religion enables the hospital chaplains to offer spiritual service, which formany patients is an essential part of their care.

USES OF INFORMATION AT NIH

The information needed for care and treatment,and much of the research information, is recordedand stored in your written medical record and ina computer system. In addition, records containingsome of the same or similar information aremaintained by the many departments and officesessential in a modern hospital. These includeadmissions, anesthesiology, transfusion medicine,dental clinic, nursing, nutrition, pharmacy,reception desk, recreation therapy, social work,spiritual ministry, and travel office. These alsoinclude the departments and offices that performelectrocardiograms, electroencephalograms,metabolic rates, pathological anatomy, pulmonaryfunction, radioisotope studies, and x rays.

NIH scientists and their technical assistantsmaintain research records in their offices andlaboratories. These may be records of clinicalresearch procedures carried out in each laboratory,or they may be compilations of data abstractedfrom the medical records of many patients, someof whom may have no personal contact with thescientist. Such records are essential in preparingthe hundreds of clinical research reports pub-lished in scientific journals each year.

Students in the health professions, particularlymedicine and nursing, are regularly assigned tothe NIH as part of their formal training. Theymay be unpaid volunteers, but they are under thedirect supervision of the NIH staff. They haveaccess to medical information as necessary tocarry out their training assignments. For the pur-poses of the Privacy Act, they are regarded asNIH employees.

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USES OF INFORMATION OUTSIDE NIH

Generally, access to medical information isrestricted to NIH employees who need it to carryout their official duties. There are, however,occasions when confidential information isshared with individuals or organizations that arenot part of the NIH. These are as follows:

� The physician(s) or organization(s) that thepatient specifies to receive reports (which areidentified in MIS) get the following:

• reports summarizing each patient admission

• letters dictated by the patient’s primary carephysician(s)

� The Social Work Department may share perti-nent information with community agenciesthat may assist the patient. Providers may alsobe given the information needed for obtainingspecial individualized devices such as braces,artificial limbs, or cosmetic aids.

� The travel office may inform public carrierssuch as airlines of the special requirements ofsome patients, for example, “heart condition”or “wheelchair required.”

� Information about diagnostic problems or hav-ing unusual scientific value may be sharedwith consultants other than NIH employees.For example, bacterial specimens may be sentto the Centers for Disease Control andPrevention of the Public Health Service inAtlanta; tissue specimens may be sent to theArmed Forces Institute of Pathology inWashington, D.C.; x-rays may be sent for theopinion of a radiologist with extensive experience in a particular kind of diagnosticradiology. Pertinent parts of your medical history may be shared with such consultants.NIH scientists may collaborate with colleaguesat institutions such as medical schools. Theymay share information so that the number of

patients under combined study will be sufficient, or they may exchange samples ofmaterial such as blood so that samples can beanalyzed uniformly in the laboratory bestequipped to do so.

� Representatives of the Joint Commission onthe Accreditation of Healthcare Organizationsor of the Government’s General AccountingOffice occasionally have access to representativemedical records. Such inspections ensure thatthe quality of our record-keeping meets estab-lished standards.

� Records may be released to Congress or tocommittees and subcommittees of Congressfor matters within their jurisdiction, andinformation may be used to respond tocongressional inquiries for constituents concerning their admission to the NIHClinical Center.

� Certain diseases or conditions, includinginfectious diseases, may be reported to appropriate representatives of the State orFederal Government as required by law.

� Records may be released for statistical researchor reporting if the information is transferred ina form that does not identify anyone individu-ally. For example, medical information may bedisclosed to tumor registries for maintaininghealth statistics.

� The DHHS may contract with a private firmfor transcribing, updating, copying, or other-wise refining records it uses. Relevant recordswill be disclosed to such a contractor. Thecontractor(s) will be required to comply withthe requirements of the Privacy Act regardingsuch records.

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� If a Government employee is involved in alawsuit, records may be released that facilitatethe employee’s defense.

� The Bureau of the Census may request recordsfor census or survey purposes, and records maybe released for archival purposes to theNational Archives.

� Records may be released for law enforcementpurposes to a law enforcement agency, andrecords may be released in response to a courtorder.

� Whenever medical information about you asan identifiable individual is disclosed to anyonewho is not an employee of the DHHS, nota-tion of the reason for the disclosure and theidentity of the recipient of the information ismade in your medical record. When such

disclosures are for one of the reasons describedabove, or if disclosure is otherwise required bylaw, the NIH does not seek your written per-mission to make the disclosure.

� Except for the uses described here, medicalinformation about a patient is not given toanyone without the specific written permissionof the patient or a legally authorized represen-tative. However, there is one additionalexception to that rule: if at some later time, ahospital or physician who is caring for youneeds information immediately, and if waitingto obtain your written release of the informationwould endanger your health, the informationwill be released immediately, and you will benotified of the release later.

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YOUR DOCTOR AT THE CLINICAL CENTER

While you are a Clinical Center patient, thereare always two doctors who share the responsibil-ity for your care. Your attending physician isresponsible for conducting your study (protocol)and for the overall quality of your medical care.Your clinical associate, a well-trained doctor whohas chosen to come to NIH to learn more aboutmedical research, is responsible for the immedi-ate management of your care.

THE DOCTOR TO TALK TO REGARDINGQUESTIONS ABOUT TREATMENT

The clinical associate who evaluates you, ordersmedications and tests, and sees you often is thedoctor who knows you best. The clinical associ-ate consults with your attending physician. Youmay, of course, ask to see your attending physi-cian if you have more questions.

HOW OFTEN YOU WILL SEE YOUR ATTENDING PHYSICIAN

This depends on the design of the research pro-tocol, the complexity of the medical problem,and your individual needs.

DOCTORS MAY CHANGE

If you are a Clinical Center patient over a longtime, you will not have the same doctors.Clinical associates are assigned to patient care forfixed periods, so unless you are a short-termpatient, your clinical associate will change fromtime to time. You may retain the same attendingphysician, but on many patient care services,these responsibilities rotate among a group ofsenior doctors who also rotate on a fixed sched-ule. Any time you are transferred from oneInstitute or branch to another, both your clinicalassociate and your attending physician willchange.

The NIH consists of many Institutes, most ofwhich conduct research in a specific field ofmedicine. Within each Institute are severalbranches where studies are being done on specif-ic conditions within the general field covered bythe Institute. Many patients have problems ofinterest to more than one Institute or branch.Each Institute and branch has its own team ofdoctors.

KNOWING YOUR INSTITUTE AND BRANCH

It is very useful to know your Institute andbranch. If you should ever need assistance whenyour own doctor is not available, knowing your Institute and branch will make it easier to locatethe person best able to help you.



Y o u r D o c t o r s

SEEING NIH DOCTORS OUTSIDE YOUR INSTITUTE AND BRANCH

You may see a number of other NIH doctors whohave been asked to examine you because they arespecialists in medical fields other than thosefamiliar to your attending physician or clinicalassociate.

WHY SO MANY PEOPLE AREINVOLVED IN YOUR CARE

Because of the complexity of medicine, it isimpossible for one person to know all that can beknown, or all that needs to be known, about amedical problem. Doctors with special training

provide expert opinions, perform tests, and operateadvanced medical equipment. Other health careprofessionals are also trained to perform certainprocedures or monitor your condition.

The continuity of your care rests with a team orgroup of doctors. Even though members of theteam or group may change, they all communicatethrough the same channel: your clinical associateand attending physician. You should always beinformed when changes occur. If you ever havequestions, do not hesitate to contact your clinicalassociate or attending physician so that youunderstand the situation to your satisfaction.



THE ADMISSIONS PROCESS

Admissions handles registrations for all newinpatients and outpatients as well as previouslyregistered patients who are scheduled for inpatientadmission to the hospital. If you are a newpatient, you will be interviewed by an admissionsclerk. You will be asked to review and sign ageneral consent form stating that you have agreedto take part in biomedical research. You will alsobe asked to review and sign an information prac-tices form. This form states that the ClinicalCenter will do its utmost to protect your privacyand identifies situations when the ClinicalCenter may share information about you (as dis-cussed in Section 2 in this booklet under theheading “Uses of Information Outside NIH”).

Except for an emancipated minor, only a parent,legal guardian, or legally authorized representativemay sign for a patient who is a minor (less than18 years of age). If you have any concerns aboutyour research program or informed consent, askfor assistance. There are many people availableto address your concerns.

When the admissions process is completed andyou have signed the required forms, you will bedirected to the patient care unit or outpatientclinic.

BANKING

An array of financial services is available to youfrom the NIH Federal Credit Union (NIHFCU).The Credit Union has provided financial servicesto the NIH community for over 60 years. It is afederally insured, member-owned and -operatedcooperative.

You do not have to be a member of the CreditUnion to cash personal checks (though somerestrictions apply). But you may join the CreditUnion to take advantage of membership benefitssuch as low-cost loans, savings and checkingaccounts, and convenient account access.

With a $25 deposit in a savings account, youcan join NIHFCU. You will also need a validphoto ID, such as a driver’s license or passport,and verification of your affiliation with NIH(such as an NIH identification badge). You mayremain a member as long as you like—even afteryou leave NIH.

The NIHFCU Clinical Center Branch is locatedon the B1 level and is open at these times:

Monday through Thursday: 8 a.m. to 4 p.m.

Friday: 8 a.m. to 6:30 p.m.

Saturday: 8:30 a.m. to 1 p.m.

Note: Extended hours on Friday and Saturday arefor the Teller Department only.

A full-service ATM just outside this branch isavailable 24 hours a day. Another ATM is at the top of the escalators near the second-floor cafeteria.



Pat i e n t I n f o r m at i o n

For more information about NIHFCU membershipor products and services, visit its Web site atwww.nihfcu.org or call its Telephone ServiceCenter at 1-800-877-6440, TDD 301-881-5822.

BUSES AND TAXIS

Buses and taxis are available from the ClinicalCenter to Washington, D.C., and the surroundingareas. A Metro bus schedule is available at theadmissions office reception desk or at one of thethree Hospitality desks located at the mainentrance, the main elevators, or admissions.

Taxis may be called from the information desk orthe phones in the main lobby. Staff at the trans-portation desk can also call a cab for you Mondayto Friday from 7 a.m. to 7 p.m. At other times,admissions staff can assist you. During badweather, place your call early. If you have troublegetting a cab, ask at admissions for help.

CALL BELL

Each bed has a call bell that signals the nurses’station. Your nurse will explain how to use it tosummon a staff member.

DEPARTMENT OF CLINICAL BIOETHICS

The Department of Clinical Bioethics helpsmaintain high ethical standards in patient careand research. Bioethicists are specially trained tohelp you and your providers make medical decisions that reflect your values and beliefs.Bioethicists participate on review boards thatreview all research studies involving patients atthe Clinical Center, to ensure that they meet theethical standards.

There is a bioethics consultation service.Members come from both the Clinical Center’sethics committee and the Department of ClinicalBioethics. During your stay, you will make manydecisions about your care and participation in

research. These decisions may be hard to make.The bioethics consultation service can help youbalance your needs with those of others as youdeal with the impact of illness.

Some questions you might want to discuss with abioethics consultation team include:

� How do I mesh my medical situation with myvalues about life and the future?

� How might I decide about treatment optionsor side effects?

� How might I think about a power of attorneyor a living will?

� What about my concerns for privacy and con-fidentiality?

� What might I do about family arrangements orinconveniences?

A bioethics consultation team is available 24hours a day to help you think about issues regard-ing your health care and participation inresearch.

Please feel free to call the Department of ClinicalBioethics at 6-2429 if you have questions or concerns about your part in biomedical research.

DEPARTMENT OF TRANSFUSION MEDICINE

The Clinical Center supplies vital blood andblood components for patients with cancer, heartdisease, and blood disorders. This blood comessolely from volunteer blood donors.

Families and friends of patients at the ClinicalCenter can help the Department of TransfusionMedicine continue to provide this “gift of life.”



Giving blood is easy and takes less than 30 min-utes. There is no risk and little discomfort. Everydonation helps patients at the Clinical Center.Contact the department at 6-1048 or 6-1049 toask how you can help.

DOCTORS’ ROUNDS

NIH doctors as well as nurses, consultants, spe-cialists, students, and trainees periodically makegroup visits to the patient care units to reviewpatients’ health status. During these visits, called “rounds,” doctors may want to examineyou and talk with you. Rounds may occur everyday, once a week, or special rounds may bescheduled less often. Check with your nurse for the times of rounds on your patient care unit.You will probably be asked to be in your room forrounds.

DRESS

Unless your doctor or nurse tells you otherwise,you are urged to be up and dressed during theday. If you are not confined to your bed, youshould plan to wear casual street clothes andcomfortable walking shoes. If you prefer to go outof your room in night clothes, please wear yourbathrobe. At night, you will probably prefer touse your own night clothing, robe, and slippers.However, the Clinical Center can supply free,standard hospital nightwear. Please rememberalways to wear shoes or slippers.

ELECTRICAL APPLIANCES/MEDICALDEVICES

To ensure a safe environment on the patient careunits and throughout the hospital, we have a pol-icy about electrical appliances patients maybring. Small personal appliances such as electricrazors, hair dryers, or laptops are okay, but theyshould require standard 110-volt electricity and

should not show signs of damage (frayed cords).Appliances must not need to be connected togovernment property. Irons, portable heaters,heating pads, hot plates, toasters, hot oil popcornpoppers, and other kitchen appliances used toheat and prepare food are not permitted. Becauseof concerns for the operation of medical equip-ment, we restrict the use of cellular phones andother transmitting devices in some patient careareas. If you have any questions about the appli-ances or equipment you may bring, be sure to askyour nurse.

If you own or rent a medical device that you routinely use, you may bring it to the ClinicalCenter. When you are admitted, our staff willtell you whether this device can be used. Whenpossible, we will try to accommodate your specialneeds and you will be allowed to use the device.However, the Clinical Center reserves the rightto substitute another device for yours if it isdetermined necessary for your protocol or foryour care at the Clinical Center.

If it is okay for you to use your medical device atthe hospital, the device must be in good workingorder. Since we may not have your device at theClinical Center, you should also bring a supply ofdisposable items (e.g., special tubing or bags),instructions for use, as well as any reports on thetesting and performance of the equipment.

FOOD AND LODGING FOR COMPANIONS

There are several motels near NIH, and theClinical Center admissions section can provideyou with a list of local accommodations and mayhelp arrange for temporary housing. Rooms are



also available in private homes registered withthe admissions desk. Some of these homeownerswill accept roomers for a night or two; others willaccept them only for a stay of a week or longer.These rooms are only available to relatives ofinpatients.

There are two cafeterias open to the public: oneon the second floor and another on the B1 level.Hours of operation are posted outside each cafe-teria. Your companions may also wish to shop ordine in Bethesda, located about 2 miles from theClinical Center. The Hospitality staff can provideyou with information on shops and restaurants inthe local Bethesda area.

GIFTS

A concession stand licensed by the MarylandDepartment of Vocational Rehabilitation sellsitems such as stationery, books, sundries, greetingcards, snacks, and sodas. Located on the B1 level,the shop is open Monday through Friday.

Another gift shop on the B1 level is managed bythe NIH Recreation and Welfare (R & W)Association. It sells cards, gifts, and providesphoto processing services. A dry cleaning serviceis also available at a reasonable charge.

A book store, also on the B1 level, provides text-books for staff members enrolled in the NIHgraduate school program. However, a selection ofgeneral-interest books is also available. Feel freeto stop by and browse.

GUIDELINES FOR CHILDREN VISITING

Children are encouraged to visit during regularClinical Center visiting hours. Children underage 14 must be accompanied and supervised by a

familiar, responsible adult. At the discretion ofthe nurse, adolescents between the ages of 14and 18 may visit unaccompanied. Visitors mayvisit in the unit and common rooms (lounges,cafeterias, playrooms) within the Clinical Centerand in the room of the patient they are visiting.Visitors who have been recently exposed to aninfectious disease (for example, impetigo, chick-enpox, tuberculosis, hepatitis) may not visit.Visitors with cold or flu symptoms are discour-aged from visiting. Any visitor who becomes dis-ruptive may be asked to leave.

HAIR GROOMING

The barber shop on the B1 level is open from7 a.m. to 5:30 p.m. Monday through Friday.The beauty shop on the B1 level is also openfrom 7 a.m. to 5:30 p.m. Monday through Friday.

HOSPITAL DISCHARGE

When your part in the research is completed andyour health permits, you will be discharged to thecare of your referring doctor. If you need help tomake arrangements, a doctor, nurse, or socialworker can assist you.

If you need continued medical or nursing careafter you leave, members of our staff will helpyou locate appropriate community resources.Social workers may be particularly helpful inmaking these arrangements.

The average stay at the hospital is about 7 days,but the needs of your research protocol mayrequire you to stay for a longer or shorter time.Some patients may be studied by their NIH doc-tor for months or years after leaving the hospital.You may be asked to return to the outpatientclinic for examinations from time to time. YourNIH doctor will explain the procedures if he orshe wants you to return. If you cannot keep



appointments for return visits, please notify yourphysician promptly.

We hope that you will want to stay with thestudy until your part is complete. By participatingin clinical research at NIH, you help many oth-ers who are ill. The contribution you make is anessential part of medical research.

HOSPITAL VOLUNTEERS

Hospital volunteers serve in many ways to makeyour stay at the Clinical Center more pleasant.Some volunteers greet you at the admission desk,while others may be assigned to your patient careunit. They can introduce you to the hospital,answer general questions, or act as languageinterpreters. Others can shop for you, accompanyyou to appointments, or just spend time visiting.Volunteers in recreation help you with crafts,special events, and go on scheduled trips. RedCross volunteers provide a variety of hospitalityservices to make patients feel welcome and morecomfortable.

Volunteers are here because they understand howimportant it is to share time with patients whoare away from home and family.

Most volunteers can be recognized easily by theiruniforms and volunteer patch. If you would like ahelpful hand or have a special need, call the vol-unteer program office at 6-1807 or visit in room1N252. The office hours are from 7:30 a.m. to4 p.m. Monday through Friday.

IDENTIFICATION BADGE

Patients may ask their health care staff about get-ting an NIH identification badge. This badgemay be useful for security checks or for usingother Clinical Center services.

IDENTIFICATION BRACELET

On admission to an inpatient unit, you willreceive an identification bracelet to wear on yourwrist. Please keep it on at all times, even whilebathing or when going home on weekend pass.

This bracelet will serve as identification whenyou go through security checks at NIH.

INFORMATION SERVICES ANDPATIENT INFORMATION

If you would like to have more information aboutthe activities of the National Institutes of Healthor any of its Institutes or Divisions, OCCC staffmay be able to help. Call 6-2563 if you wouldlike to obtain some material.

The hospital also produces a variety of patientinformation materials on many of the conditionsand procedures under study at the ClinicalCenter. Feel free to ask your doctor or nursewhether there is any literature available about atopic of interest to you.

LANGUAGE INTERPRETER

Interpreting services are available for some languages on a limited basis. Call the volunteeroffice for information at 6-1807 from 7:30 a.m.to 4 p.m. Monday through Friday. Evenings, after4 p.m., or on weekends, call the admissions officeat 6-3315. Contact the on-call social worker bycalling the page operator at 6-1211. Sign languageinterpretation for the hearing impaired may alsobe obtained.

LAUNDRY

Washers and dryers are available for your use andare located on the B1 level of the hospital (roomB1N237). Free tokens to operate the machinesare available from your patient care unit. Somepatient care units also have washers and dryers.



A dry cleaning service is available through theR & W gift shop on the B1 level.

LEAVING THE UNIT

Before leaving the unit or clinic, please sign acheck-out sheet at the nurses’ station and informa staff member. This enables the medical andnursing staff to locate you if necessary. Checkwith your nurse to see if you are scheduled forany tests or medications.

MAIL

Mail is usually delivered to your unit at leastonce a day Monday through Friday. Specialdelivery and registered mail will be distributed assoon as it arrives.

Provide this address to your friends and relatives:

Patient NameWarren Grant Magnuson Clinical CenterNational Institutes of HealthBuilding 10 Patient Care Unit _____10 Center Drive MSC _____Bethesda, MD 20892-_____

To make sure your mail reaches you quickly, relatives and friends should write “patient mail”on the envelope. Also, ask for the ZIP-plus-4code for your unit.

MEALS

The Clinical Center Nutrition Department’s mis-sion is to provide the best food and nutritionservice to you during your stay.

Selective menus are planned for you based onthe diet your physician has ordered. Simplymark your choice on the menu and return it to aNutrition Department staff member in a timelymanner. When you are first admitted or when achoice is not made, qualified persons will choose

meals for you. A registered dietitian or healthtechnician can talk to you about your diet, foodpreferences, and any other concerns you mayhave about your nutrition needs.

The Nutrition Department serves meals betweenthe following hours for patients who use thepaper menu to make their meal choices:

Breakfast: 7:30 to 8:30 a.m.

Lunch: 11:30 to 1 p.m.

Dinner: 4:30 to 5:30 p.m.

Your tray may be delayed when medical proceduresor tests affect your meal service. Your nurse willarrange for your tray when your procedures arecompleted.

Room service—Patients on unrestricted diets canorder a restaurant-style meal from menus in theirrooms. These meals are served at the bedsideand can be ordered from 6:30 a.m. to 6:30 p.m.Please order your meal to be served either beforeor after any scheduled procedure. Please askyour nurse if you are eligible for room service.

Continental breakfast—Outpatients who mustfast for blood work or other tests are eligible for acontinental breakfast once their procedures arecomplete. A variety of foods is available for out-patients who are eligible. Located on the firstfloor in the admission area, this service is avail-able from 7 a.m. to 10 a.m.

Birthday cakes—Celebration cakes are availableif you must spend your birthday at the ClinicalCenter. Your nurse can arrange for the cake tobe sent to your room.



Special diets for research or for medical reasons—Some patients must follow restricteddiets due to medical reasons or while they takepart in research studies. If your study requires youto be on a special diet, you can speak with a regis-tered dietitian during your inpatient or outpatientstay. The dietitian will be happy to talk to youabout this diet. Please let your nurse or physicianknow if you want to speak to a member of ourstaff.

For some studies, you may be asked to fill out anutrition questionnaire or have body compositionmeasurements taken.

MEDICINES

Give all your own medicines (even aspirin orvitamins) to your nurse. If NIH doctors prescribemedicine for you, it will be dispensed to your unitand administered by your nurse. Please plan to beon the patient care unit at medication time.

Medications prescribed at discharge or in yourclinic, are dispensed at the Outpatient Pharmacy.

METRO SUBWAY

Metro, a mass transit service operating in theWashington, D.C., area, provides transportationto the heart of Washington, D.C., and the imme-diate area surrounding the city. You may obtaina Metro subway schedule from the Red Crossvolunteers or the Hospitality Service desk on thefirst floor. The stop closest to the Clinical Centeris “Medical Center” on the Red Line located onthe NIH campus near the National Library ofMedicine. You may contact Metro for informa-tion by calling 202-637-7000. The NIH campusshuttle makes routine stops at the Metro Station.

MONEY AND VALUABLES

When you are admitted, valuables such as moneyor jewelry should be taken to the cashier’s officelocated on the first floor (room 1C62), wherethey will be placed in a locked vault. You willreceive a receipt. Cashier’s hours are 9 a.m. to5 p.m. Monday through Friday. If you expect tobe discharged on a weekend, evening, or holiday,withdraw your valuables in advance. You maycall the cashier’s office at 6-2654. If you are goingto be discharged before 9 a.m., be sure to removeyour property before 5 p.m. the previous day. Atother times, the admissions staff will accept valu-ables to keep in the safe and turn them over tothe cashier for you. Be sure to safeguard yourproperty and belongings.

NOTARY

Public notaries are available to witness signaturesand certify documents. The Patient Represen-tative and the admissions office staff can provideyou with information about notary services.

NURSING STAFF

You will get to know the nursing staff. They willprovide much of your day-to-day care and will bea link to other hospital staff. Your primary nursewill coordinate all of your nursing care. He or shewill assist you and your family and see that yourmedications, tests, and treatments are carried out.You will become familiar with the unique andspecial features of your unit.

PASS

You will need permission from your doctor if youwish to go outdoors. Many patients are also per-mitted to leave the campus for an evening orweekend. Obtain a pass from your doctor andcheck with your nurse to make sure no tests arescheduled when you plan to be away. Your nursewill obtain any medicine that you will need, and



he or she will notify the kitchen about yourmissed meals. Because units may have slightlydifferent procedures, you may want to check withyour nurse.

THE PATIENT CARE UNIT

Your stay on the patient care unit will have someroutine features. Meals, sleep, doctors’ visits, andmedicines are usually scheduled at regular times.Occasionally, you may be referred to otherdepartments for treatment and care. You mayhave special tests or perhaps treatments, but usu-ally your entire day will not be filled.

You may take advantage of patient recreationprograms as much as your condition and doctorpermit. Dress in casual clothing and engage inyour favorite crafts, or check out a book from thepatient library. You may also get a pass from yourdoctor to go outdoors to enjoy the NIH campus.Wheelchairs, other special aids, and staff areavailable to help you in all activities, includingexcursions outside. You may wish to exploreBethesda and Washington, D.C., wheneverpossible.

You may also enjoy becoming acquainted withother patients. They come from many differentbackgrounds but share the common experienceof participating in clinical research at a govern-ment research hospital.

THE PATIENT EMERGENCY FUND

For more than 25 years, the Clinical CenterPatient Emergency Fund (PEF) has helpedfinancially strained patients and their familiesmeet emergency expenses. PEF helps patientswho come to the Clinical Center to take part inresearch.

Clinical Center patients come from all over theU.S. and the world. Many patients and theirfamilies deplete their savings traveling to theClinical Center and have difficulty affordingbasic necessities, lodging, and food. Others sufferfinancial hardship due to illness prior to theirparticipation in research. The Clinical CenterPEF is used to help in emergency circumstancesand with unexpected incidental expenses.

PEF is administered by the Social WorkDepartment. To receive PEF funds, patients mustcontact their social worker. For informationabout PEF, contact:

Patient Emergency FundNational Institutes of Health, PHS, DHHSSocial Work Department, Clinical Center10 Center Drive Room 1N252 MSC 1160Bethesda, MD 20892-1160

PATIENT LIBRARY

A well-stocked library is located in the 14th floorsolarium. There are more than 5,000 books,including a selection of current best-sellers, refer-ence, foreign language, and large-print and picturebooks. A special section featuring selections onhealth and coping is also included. Books may bechecked out for 2 weeks. The library subscribesto some 30 magazines, the Washington Post, andThe New York Times. If you are not able to go tothe library yourself, magazine selections may bemade from the cart that is brought to the patientcare unit each week. Call the library to find outthe day and time. A hospital volunteer or mem-ber of the library staff will also bring books orother library material to you between cart visits.You may return books to the library yourself orhave a staff member do it for you. After hours,use the book drop in the library door.



Internet and e-mail access, cassette tapes andplayers, typewriters, guitars, and special visualaids such as talking books, book holders, and“bed specs” (prism glasses that allow you to readlying down) are also available. Drop by thelibrary to browse or contact a hospital volunteeror nurse for information. Also watch the monthlypatient activities schedule for partial lists of newacquisitions.

The library is open Monday through Friday from11 a.m. to 7 p.m. and Saturdays from 11 a.m.to 6 p.m. On Federal holidays it is open from11 a.m. to 4 p.m. You may call the library at6-3036 for assistance or information.

PATIENT REPRESENTATIVE

The Patient Representative serves as a link betweenthe patient and the hospital. The PatientRepresentative makes every effort to ensure thatpatients are informed of their rights and responsi-bilities and that they understand what the ClinicalCenter is, what it can offer, and how it operates.We realize that this setting is unique and maygenerate questions about the patient’s role in theresearch process. As in any large and complexsystem, communication can be a problem andmisunderstandings can occur. If you have anunanswered question or feel there is a problem youwould like to discuss, call the PatientRepresentative. The sooner your concerns areknown, the easier they are to address. You mayreach the Patient Representative at 6-2626. Callsmade to this number after 5 p.m. or on weekends orholidays will be returned the following business day.

RECREATION SERVICES

The recreation therapy section provides recre-ation, library services, in-hospital entertainment,and maintains a movie channel on your roomTV (station 22). Helping patients cope with the

stress of hospitalization and maintaining theirquality of life in the face of chronic disease andexperimental treatment are the section’s objectives.Available to all patients and their families, mostprograms are held on the 14th floor of the hospitaland may include arts and crafts, music, gamesand sports, social events, and exercise. The gym-nasium has a game room and a well-equippedexercise room.

Instruction in coping skills such as relaxation,enhanced communication, and stress managementis available.

Trips are taken into the community for enter-tainment and sightseeing. Wheelchairs can beaccommodated on all trips.

Children and their families are welcome in the14th floor playroom. At least one special eventfor children is held each month. Occasionally,special visitors entertain the children duringthese events. When time permits, entertainersmay visit patients in their rooms.

The playroom has an aquarium and two residentguinea pigs. As part of the animal-assisted therapyprogram, children are encouraged to hold andplay with the guinea pigs.

Twice a month, several dogs are brought in tovisit both adult and pediatric patients. These visitsare voluntary and closely follow hospital infectioncontrol procedures.



The playroom on the 14th floor is open for super-vised play during the following hours:

Monday through Thursday: 10:30 a.m. to 12:30 p.m.1:30 to 3:30 p.m.6:30 to 8 p.m.

Fridays:10:30 a.m. to 12:30 p.m., 1:30 to 3:30 p.m.

The 14th floor adult recreation services are openduring these hours:

Monday through Friday: 10:30 a.m. to 12:30 p.m. (craft room)1:30 to 3:30 p.m. (craft room, gymnasium,

weight room)Monday and Wednesday:

6:30 to 8:30 p.m. (gymnasium, game room,weight room)

Wednesday: 7 to 8 p.m. (bingo in the assem-bly hall)

Saturdays: 1:30 to 4:30 p.m. (gymnasium)

In addition to these standard hours of operation,patients and guests will find an extensive list ofspecial events on the front and back sides of themonthly calendar.

RELIGIOUS SERVICES AND MINISTRY

The Department of Spiritual Ministry is locatedon the 14th floor. The chaplaincy staff supportsyour spiritual needs. Chaplains are available forpersonal visits with you and your loved ones.Catholic, Jewish, and Protestant chaplains holdregular services in the 14th floor Inter-FaithChapel. If your faith is not represented within thestaff, the chaplains will contact your faith grouprepresentative on your behalf. Scriptures and reli-gious literature of most faiths are available uponrequest.

Religious services are held at these times:

� Catholic: Daily at 11:15 a.m.Holy Communion is distributed at the bedsideupon request. The Blessed Sacrament isreserved in a small chapel on the 8th floor.This chapel is open weekdays for meditation.

� Jewish: Friday at 4:30 p.m.

� Islamic: Monday through Friday at 1:30 p.m.

� Protestant: Sunday at 10 a.m., devotions onThursday at 12:30 p.m.Holy Communion is distributed on the firstSunday of each month. Bedside Communion isavailable upon request.

Special services and changes in the regularschedule are announced by special notice and inthe patient activities schedule available at thenurses’ station.

Escorts can be arranged through the nursing staffto take patients in wheelchairs to the chapel. Tocontact a chaplain, visit the 14th floor, call 6-3407,or ask the nurse or social worker to help you.

SMOKING POLICY

As the nation’s leading medical research center,the NIH supports the need for a healthful andsafe environment. NIH is a smoke-free Federalagency. Smoking by patients, visitors, and staff isprohibited in and around all NIH buildings andgarages, including all levels of the the ClinicalCenter garage.



SOCIAL WORK SERVICES

If you or members of your family have difficultiesor concerns during your stay, social workers arehere to provide information and counseling. Inmost patient units and outpatient clinics, newpatients are routinely screened by social workers.

You are encouraged to speak with a social workerto explore your concerns or any other issues thathave an impact on your coping with treatmentand illness. These include anxiety, depression,concerns about family, work, and adjustment tothe Clinical Center. Social workers are availableto support you with issues related to your takingpart in protocols at NIH. They can also helpconnect you to valuable resources, support organ-izations, and public and private agencies thataddress personal, financial, and health care prob-lems.

Many patients need special assistance with dis-charge from the hospital, and your social workerwill work with staff to set up services, supplies,special equipment, or rehabilitation at home.

There are several ways to obtain social workservices:

� See the social worker on your patient care unit.

� Call the Social Work Department at 6-2381and ask for a visit from a social worker.

� Ask your doctor, nurse, family member, or afriend to ask for a meeting with your socialworker.

TELEPHONES

On most units, there are telephones in eachroom for local calls.

� To call a number within the hospital, press thelast five digits of the number.

� To call local outside numbers:

• press 9-202 for Washington, D.C.

• press 9-301 for Maryland

• press 9-703 for Virginia

For long-distance calls, you may use your patientextension to call collect or to bill charges to acredit card. It is not possible to charge calls toyour room extension or accept incoming collectcalls.

On each patient care unit, a telephone is providedfor long-distance calls at no expense to you.Calls may be placed from 6 a.m. to 8 a.m. andfrom 6 p.m. to midnight. We urge you to limityour calls to 10 minutes in consideration ofyour fellow patients who may also need accessto the telephone. If you cannot get to this tele-phone, ask your social worker to authorize along-distance call from your room telephone.

When your family and friends call you, theymay reach you by dialing 301-402, or 301-496and your extension number. If you are moved toanother room, your telephone extension numberwill change. If callers do not know the number,they may call 301-496-4000 and the operatorwill locate you. As a courtesy to other patients,please ask family and friends to call before10 p.m. There are also pay telephones locatedthroughout the hospital.



TRAVEL

If you need help with travel plans, the travelagency staff can assist you and your family.The staff can obtain plane, train, bus, and airportshuttle information; make reservations orchanges for you; and secure tickets. For furtherinformation and assistance, call or visit the traveloffice on the first floor weekdays between8 a.m. and 5:30 p.m. The telephone number is1-866-227-9339.

TVS AND RADIOS

TVs are available without charge (check withyour nurse or unit clerk for operating instructions).Some televisions also receive radio stations. Youmay bring your own small radio.

UNIVERSAL PRECAUTIONS/ISOLATIONPRECAUTIONS

Universal precautions—One of the goals of theClinical Center is to provide a safe and healthyenvironment for patients and staff. Universalprecautions are used to reduce the risk of trans-mission of blood-borne infections, as well asinfections from moist body substances. If exposureto a patient’s blood, body fluids, or other infectiousmaterials is likely, hospital staff members will usesome type of personal protective equipment.

Gloves are the most frequently used personalprotective equipment, but the actual equipmentused will depend on the procedure involved. Youmay notice health care members wearing gloveswhile drawing your blood. Masks, gowns, andprotective eyewear might also be used when per-forming a procedure where blood or other infectiousmaterials might splash on a health care worker’sskin, eyes, or mouth. Housekeeping staff weargloves and gowns when changing soiled linensand wear gloves when handling trash. Hospitalstaff should observe universal precautions withall Clinical Center patients.

Isolation precautions—Universal precautionsalone are not always sufficient to prevent thetransmission of certain infections. When theseinfections are suspected, patients are placed onadditional isolation or precautions dependingupon how a particular infection is spread.

Gloves, gowns, masks, and protective eyewear areused more frequently for patients on isolation.Patients may be restricted from contact with otherpatients or health care staff while on isolation.

If you require isolation, a sign will be placed onthe door to your room. The sign reminds staffwhich additional protective equipment theyshould wear. The sign also instructs visitors tocheck with nursing staff for more informationbefore entering your room. If you require isolation,your nurse or doctor will explain this to you. Toprotect patient confidentiality, isolation signs donot identify the patient’s infection.

During cold and flu season, it is important to letyour doctor or nurse know at once if you have acough, sore throat, runny nose, or congestion.Visitors with these symptoms should avoid comingto the Clinical Center until their symptomsresolve.

For more information about universal precautionsor isolation precautions, call the HospitalEpidemiology Service at 301-496-2209.

VISITING HOURS

Visiting hours are generally from 9 a.m. to 9 p.m.On some units hours may vary, and there may beage restrictions for visitors.



SOCIAL WORK SERVICES

Barber and beautician services—Barber andbeautician services are available to patients andtheir visitors. An appointment should be madefor using these services. Call 6-3019 for the bar-ber shop; call 6-2765 for the beauty shop. Forpatients in financial need, a social worker mayprovide a voucher that meets the cost. Forpatients confined to their patient care unit, thebarber or beautician will come to the patients.

Your social worker can help you obtain the fol-lowing services:

Family Friend program—Assistance with childcare is available through the Clinical CenterFamily Friend program, a child care servicestaffed by trained volunteers. The program maybe used by

� parents who need respite while caring for chil-dren who are pediatric patients, and

� parents who are patients but have no othermeans of child care, such as family members orfriends.

Arrangements can be made by the social workeror the protocol’s research nurse.

Inpatient relative/guardian program—SomeInstitutes have programs that assist relatives/guardians to stay in the area while the patient ishospitalized. Contact your social worker forinformation about these programs.

Medic-Alert and stainless steel bracelets andnecklaces—The Clinical Center will help patientswhose medical problems warrant them obtainstainless steel Medic-Alert bracelets and neck-laces. Contact your social worker to obtain theorder form for this identification. To ensure theaccuracy of the information on the bracelet ornecklace, you should talk with your doctor abouthow to state your medical condition.

Outpatient voucher program—There is avoucher program, supported by some Institutesfor patients on specific protocols, to help defraythe cost of participating in research at theClinical Center. You will be notified concerningyour eligibility.

Social Security Administration—A SocialSecurity Administration field representativevisits the Clinical Center on the third Fridayevery month between 8:30 a.m. and 4 p.m. Bothin- and outpatients can meet with this field representative. Call your social worker to makean appointment with the representative and toreceive helpful brochures and applications.



S u p p o rt S e r v i c e s f o r Pat i e n t sa n d F a m i l i e s

Wigs for patients—The Clinical Center SocialWork Department processes wig requests forpatients who have hair loss during treatment.Upon receipt of a request, a social worker author-izes a voucher to buy a wig from a contractor hiredby the Clinical Center. Ambulatory patients maytake their authorizations to room 1N252 to get awig voucher. When they have the voucher, pa-tients may contact the wig contractor and makean appointment, either at the contractor’s placeof business or in the Clinical Center.

OTHER SERVICES

Children’s Inn—The Children’s Inn at NIH is afamily-centered residence on the NIH campusserving pediatric patients and their families whotravel here for treatment at the Clinical Center.The Inn provides a home-like atmosphere of pri-vate sleeping rooms with baths, common livingareas, playrooms, kitchen and laundry facilities, acomputer room, and a library. The Inn operateson a self-help basis with the resident childrenand their families helping themselves and eachother. Family members do their own shopping,cooking, laundry, and supervise their children asthey would at home. The first reservation to stayat the Children’s Inn must come to the Innthrough the patient’s social worker. Thereafter,returning patients may call the Inn directly forreservations at 301-496-5672 or toll free at1-800-644-4660.

Pediatric patients and their families may alsovisit the Inn as day visitors during their stay atNIH even though they are not residents.

Clinical Center galleries—Looking around thefirst floor of the Clinical Center, you will noticeart galleries. These galleries, on view 24 hours aday, feature sales of artwork by artists from theWashington, D.C., area, with occasional exhibitsfrom around the country. Each artwork sale bene-fits patients with a 20 percent donation con-tributed to the PEF. The Red Cross office in thehospital’s north lobby has price lists for all thegalleries. Price lists and other information aboutthe galleries are available from the Office ofFacility Management (B1L410) between 9 a.m.and 4:30 p.m. Monday through Friday. Art maybe bought by contacting the Office of FacilityManagement at 301-496-2862. Feel free tobrowse through the galleries to enjoy the currentdisplay and, perhaps, to purchase a favorite piece.

Friends of the Clinical Center—Founded in1984, the Friends of the Clinical Center (FOCC)is a nonprofit, charitable organization located inthe Clinical Center. It provides emergency finan-cial assistance to NIH patients and their families.Illness often causes stress––both emotional andfinancial––for patients and family members. Inaddition to the concerns of finding a successfultreatment, lost income over a period of timeoften has severe financial impact.

FOCC can help by providing emergency fundingon a case-by-case basis to those in need duringthese stressful times. FOCC often assists withpayment of rent and mortgages, utilities, car pay-ments, transportation costs to and from NIH,medical bills, and other types of expenses.Patients desiring consideration for funding fromFOCC should speak with their social worker. Forinformation about FOCC, you may visit its officein the Clinical Center in room 1C166A, call2-0193, or view its Web site athttp://www.FOCCcharity.org



The NIH Children’s School—While they arepatients at the Clinical Center, children areexpected to attend the NIH Children’s School, asatellite school of Montgomery County. Locatedin the 10

thfloor solarium, the school is staffed by

teachers who instruct students in grades kinder-garten through 12. Teachers also come to thebedside when patients are unable to attendschool. Children should bring their textbooksand current assignments. The NIH teachers willkeep the local school apprised of the child’sprogress. Studies for the graduate equivalencyprogram (GED) and English spoken as the otherlanguage (ESOL) are also provided to those whomeet a certain criterion. The school can be contacted by

� phone (301-496-2077)

� email ([email protected])

� fax (301-402-9202)

Nursing psychiatric liaison—At the ClinicalCenter, there is a psychiatric liaison program inwhich nurses provide mental health evaluations,consultation, and counseling to patients, theirfamilies, and those who care about them. Notonly do psychiatric liaison nurses assist patientsand families to adapt to illness, they also helpmake the patient care units more sensitive totheir needs.

A referral to the psychiatric liaison nurse is made by your primary nurse or doctor in order to address normal emotional reactions resultingfrom illness. Such reactions may be anxiety,worry, depression, anger, stress, or difficulties inproblem solving. The psychiatric liaison nursecan also provide you with referrals in your com-munity. When more psychiatric help is neededduring your hospital stay, the psychiatric liaisonnurse works with the psychiatrist at the ClinicalCenter. In this case, the psychiatric liaison nurseand the psychiatrist will work together on yourbehalf. Psychiatric liaison nurses also lead meet-ings and support groups for patients, their families,friends, and other loved ones. When you areadmitted to your specific unit, your primary nursewill let you know about these services.



HANDY TELEPHONE NUMBERS

Admissions office (open 24 hours) . . . . .6-3315Barber shop . . . . . . . . . . . . . . . . . . . . . . .6-3019Beauty shop . . . . . . . . . . . . . . . . . . . . . .6-2765Bioethics . . . . . . . . . . . . . . . . . . . . . . . . .6-2429Blood Bank . . . . . . . . . . . . . . . . . . . . . . .6-1048Cashier’s office . . . . . . . . . . . . . . . . . . . .6-2654Children’s playroom . . . . . . . . . . . . . . . .6-4730Clinical Center Communications . . . . . .6-2563Directory assistance for NIH . . . . . . . . . .6-4000Medicolegal section . . . . . . . . . . . . . . . .6-3331Metro . . . . . . . . . . . . . . . . . . . . . .202-627-7000Patient activities . . . . . . . . . . . . . . . . . . .6-2276Patient library . . . . . . . . . . . . . . . . . . . . .6-3036Patient referral services . . . . . . .1-800-411-1222Patient Representative . . . . . . . . . . . . . .6-2626Red Cross hospitality . . . . . . . . . . . . . . .6-5891Religious services and ministry . . . . . . .6-3407Social Work services . . . . . . . . . . . . . . . .6-2381Transportation (open 24 hours) . . . . . . .6-1161Travel office . . . . . . . . . . . . . 1-866-227-9339 Volunteer office . . . . . . . . . . . . . . . . . . .6-1807

PARKING AT THE CLINICAL CENTER:GUIDELINES FOR PATIENTS AND VISITORS

Patients and their visitors may park in theClinical Center garage. The entrance to thisgarage is located on Memorial Drive. Theentrance is marked “Patient/Visitors Parking.”All patients should stop to get a parking ticketand have their vehicle inspected by security personnel. Inpatients may leave their cars in thegarage during their hospital stays.

Once you have parked, follow signs to the elevators in the center of the garage. Take an ele-vator to the first floor of the hospital and go tothe admissions desk in the main lobby. There,you will be greeted by admissions staff. While

you are at admissions, the staff will direct you tothe security desk to have your parking ticket val-idated (stamped) so that you will not have to pay. If your ticket is not stamped, you will becharged for parking.

Valet Parking—Valet parking is available forpatients and their visitors at the main entranceof the Clinical Center (south lobby) Mondaythrough Friday, 7 a.m. to 10 p.m., (except onFederal holidays).

TO USE VALET PARKING

1 Drive up to the hospital's main entrance andstop in front of the valet station.

2 The valet parking attendant will greet you,give you a claim ticket, and park your vehicle.

3 When you need your vehicle, go to the park-ing validation desk across from admissions. Astaff member will validate (stamp) your ticket.This desk is open from 7 a.m. to 7 p.m.Monday through Friday. A validation desk isalso located in the south lobby at the trans-portation desk (open 9 a.m. to 5 p.m. Mondaythrough Friday).

SPECIAL NOTES

� Parking is always available for patients andtheir visitors in the garage.� You can park easily on the P-3 level of theClinical Center garage on weekends and atnight. At those times, it is not necessary to get aticket for validation.� When you are inside the garage, you can alsoget assistance, if you need it, from the staff at theparking attendant’s booth near the elevators. Forexample, they can help you park or reach theelevators.

S E C T I O N S I X


O t h e r U s e f u l I n f o r m at i o n

National Institutes of Health

U.S. Department of Health and Human Services

2003

N I H CLINICAL CENTERcc.nih.gov/participate/_pdf/pthbk03.pdf · Institute and branch 14 Why so many...

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