Patient Rights and Responsibilities

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By: Johns Hopkins Media Relations Staff

Date: 2004

Source: Johns Hopkins Hospital and Health System. "Patient Rights and Responsibilities" 〈http://www.hopkinsmedicine.org/patients/JHH/patient_rights.html.〉 (accessed January 14, 2006).

About the Author: Johns Hopkins Media Relations Staff is the public relations department for the Johns Hopkins Hospital in Baltimore, Maryland.

INTRODUCTION

Many hospitals across the United States have statements of patient rights and responsibilities similar to Johns Hopkins's. These list ways in which patients can expect to be treated while at the hospital as well as ways in which they are expected to behave to facilitate care.

Such lists are usually tempered with caveats, often telling patients they can expect appropriate attention but that others might have greater or more immediate needs, that their privacy will be respected within the confines of the law, and that restraints will not be used unless clinically required. Patients are also assured of nondiscriminatory treatment, and told that they may refuse to participate in research studies. They are also informed about the Health Insurance Portability and Accountability Act of 1996, or HIPAA—legislation that prompted hospitals and clinics to explain patient rights and responsibilities in plain language.

HIPAA ensures that all medical records, medical billing, and patient accounts meet certain standards with regard to documentation, handling, and privacy. It requires that all patients be able to access their own medical records, correct errors or omissions, be informed about how personal information is shared, especially with insurance companies, and used by various third parties. Other provisions set standards for notification of health care providers and procedures for safeguarding patient privacy.

PRIMARY SOURCE

OUR RESPONSIBILITIES

As a patient at Johns Hopkins Hospital you can expect:

Considerate, respectful, and compassionate care regardless of your age, race, gender, religion, national origin, sexual orientation, or physical or mental disability.

Attention when you request help, with the understanding that other patients may have more urgent needs.

To be addressed by your proper name.

Care provided in a safe setting.

Care provided by concerned staff committed to pain prevention and management.

Coordination of sign language or foreign language interpretation services, if you need them.

To be told the names of the doctors, nurses, and other health team members directly involved in your care.

Information about your diagnosis, treatment, and expected result to be provided by your attending physician.

Information on the planned course of treatment, including an explanation about procedures.

Information on the risks, benefits, and alternatives of your treatment.

Information about pain and pain relief measures.

Freedom from the use of seclusion or restraints in any form unless clinically required.

To make decisions about your plan of care before and during treatment, when medically possible.

To refuse a recommended treatment to the extent permitted by law, and to be informed of the medical consequences of your refusal.

That you have the right to leave the hospital against the advice of your doctor. If you choose to do so, the hospital and doctors will not be responsible for any medical consequences that may occur.

That if you are asked to participate in a research study related to your illness, you can decline to participate in or withdraw from that study at any time. Your refusal to participate will not affect your hospital care.

Within the confines of the law, all communications and records pertaining to your care will be treated as confidential. You have the right to review or obtain a copy of your medical record according to hospital policy, and to have the information explained as needed by a physician. You have the right to add additional information to your medical record by contacting Medical Record Services.

To be able to make health care decisions in advance.

If you provide us with a copy of your advance directive, we will respect your wishes to the extent permitted by law and hospital policy.

If you do not have an advance directive, we will provide you with information about an advance directive, and assist you in completing one, if desired.

You may request evaluation for organ and tissue donation.

To be informed of care options when hospital care is not indicated. We will help to coordinate options, as necessary.

To question the accuracy of your hospital and physician bills. You have the right to request a summarized list of charges and to obtain information about those charges. You can expect to be informed about any payments made to your bills.

Assistance from a patient representative in resolving complaints or grievances regarding your treatment.

You may forward complaints or grievances to the Patient Relations Department at 410-955-2273.

If your concern is not resolved to your satisfaction, you have the right to request a review by the Maryland Department of Health & Hygiene, Office of Health Care Quality, Hospital Complaint Unit, Spring Grove Hospital Center, Bland Bryant Building, Catonsville, Maryland 21228, 410-402-8016.

Assistance with an ethical issue by contacting an Ethics Committee member at pager number 410-283-6104.

To choose the home health agency that will provide for your care after you leave the hospital. A list of home care agencies is available for your use.

Your responsibilities

As a patient, you and /or your representative are expected to:

Provide complete and accurate information about your health, including present condition, past illnesses, hospitalizations, medications, natural products and vitamins, and any other matters that pertain to your health.

Provide complete and accurate information including your full name, address, home telephone number, date of birth, Social Security number, insurance carrier, and employer when it is necessary.

Provide your doctor or the hospital with a copy of your advance directive if you have one and want it to apply during your admission.

Ask questions when you do not understand what your doctor or other member of your health care team tells you about your diagnosis or treatment. You should inform your doctor if you anticipate problems in following prescribed treatment. Inform your doctor if you are considering alternative therapies.

Ask your doctor or nurse what to expect regarding pain and pain management, and work with them to develop a pain management plan. You should tell your doctor or nurse about any worries you have about taking pain medication.

Keep appointments, be on time for your appointments, and call as soon as possible if you cannot keep your appointments.

Leave valuables at home and bring only those items necessary during your hospital stay.

Abide by all hospital rules and regulations.

Comply with the No SMOKING policy.

Comply with the visitor policies to ensure the rights and comfort of all patients. Be considerate of noise levels, privacy, and safety. Weapons are prohibited on premises.

Treat hospital staff, other patients, and visitors with courtesy and respect.

Provide complete and accurate information for insurance claims and work with the hospital and physician billing offices to make payment arrangements.

Know your health insurance coverage and related policies concerning required pre-approvals, co-pays, covered services, admissions, and the hospital and doctors covered by your insurance provider.

Pay your hospital and physician bills in a timely manner.

Ask questions of your insurance company or hospital and physician billing departments if there is a financial issue that you do not understand.

SIGNIFICANCE

The patient rights movement was fueled by controversies that erupted during the rise of managed care, especially health maintenance organizations (HMOs), in U.S. health insurance. HIPAA was passed during the late 1990s, when Congress was under intense pressure from class action lawsuits from consumer and patient rights advocates. These groups maintained that there were financial incentives for patients to receive substandard medical treatment based on insurance agreements between doctors, hospitals, and HMOs.

In creating their health care provider networks, insurance companies entered into various types of contracts that put the providers at some financial risk, because the providers paid for care with insurance company funds that were fixed or limited in some way (e.g., a fixed amount per hospital admission, a fixed payment per patient per month or PMPM). If the care required was too costly, the health care provider could lose money, but the insurer didn't have to worry about its financial impact.

For example, insurers put hospitals at financial risk by setting fixed prices for inpatient stays for certain diagnoses and bundling surgical or other inpatient procedures together as diagnosis-related groups or DRGs. These are provider-reimbursement techniques first implemented in 1983 under the Medicare program. This system created an incentive for the hospitals to discharge patients quickly, because the longer the hospital stay, the greater the use of hospital services and resources, and the less likely the hospital would be to profit from a particular case.

At the physician level, health insurers developed contracts with "bonus" and "withhold" clauses that compensated physicians more for not prescribing particular "overused" diagnostic tests and surgical procedures. Insurers transferred almost all financial risk when they signed "capitation" contracts with physicians, paying them a fixed amount per insured patient/member per month (PMPM) regardless of how many services the doctors provided or prescribed. Such contracts required patients to designate a primary care physician to manage all of the health care financed under the insurance program.

Under this kind of contract, the physician became a gatekeeper who was financially responsible not only for his or her own services, but also for specialist, hospital, laboratory, and radiology services. While this may sound onerous, the probability of hospitalization and the PMPM cost were both low enough that capitation contracts were profitable for medical groups with adequate business management. Capitation contracts provided powerful financial incentives to keep patients out of the hospital and to avoid prescribing diagnostic tests. Prescription drugs are generally not included in such contracts, however, and insurers remained at financial risk to pay for these.

The question raised by consumer and patient advocates in the late 1990s (and still being debated) was whether these incentives were so compelling to providers that they perverted the quality of care and the physician-patient relationship. With the growing prevalence of HMOs and other managed care plans, patients began to fear their doctors would skimp on necessary care under the guise of avoiding "unnecessary" treatment. By agreeing to undertake financial risk, in fact, providers did align their financial interests with the insurers, and acquired the same incentives to profit from monthly premiums by keeping expenditures low.

Lawyers attacked capitation contracts by bringing a large class-action lawsuit (unsuccessfully) against Aetna in Texas, threatening one of the most powerful medical cost-containment tools available to insurers. HIPAA legislation partially defused this crisis by ensuring the "depersonalization" of patient information shared between providers and insurers. However a closer reading of the act reveals that Congress actually sidestepped the issues of whether transferring financial risk from insurers to health care providers is appropriate and if it could influence treatment. Instead, HIPAA simply codified the rules pertaining to the use of protected medical information about individuals and patient privacy while leaving the types of risk-transfer contracts that physicians and insurers can use intact.

The basic questions of patient rights advocates—such as whether physicians can be penalized financially for providing more expensive "appropriate" care, as well who decides what care is appropriate—thus remain unaddressed. In the early years of the twenty-first century, insurance companies, frightened by class action lawsuits and HIPAA legislation, considerably reduced their efforts to control medical costs by shifting the financial burden to providers.

The number of capitated physician contracts stagnated, and many subsequent provider contracts were issued as "fee-for-service" reimbursement plans, in which the more services physicians provide, the more they were compensated. Consequently, U.S. health care costs grew even while patients were granted increased privacy under HIPAA. As a result, patients pay ever-increasing out-of-pocket copayments and coinsurance premiums as their health insurance coverage gradually thins.

Advocates have shifted their focus from the insurance-related controversies that gave birth to the patients' rights movement to a wide range of critical and emotionally charged issues, including the right to die, informed consent in medical research, privacy rights, balancing free speech and patient rights, commitment of the mentally ill, sexual harassment/intimacy between patients and providers, and reconciling religious beliefs and patient rights.

FURTHER RESOURCES

Books

Annas, George J. The Rights of Patients: The Basic ACLU Guide to Patient Rights. 2nd ed. Carbondale and Edwardsville, Ill.: Southern Illinois University Press, 1989.

Periodicals

Wakefield, Julie. "Withering Rights." Washington Monthly 33, September (2001).

Web sites

United States Department of Health and Human Services. "Office for Civil Rights—HIPAA. Medical Privacy—National Standards to Protect the Privacy of Personal Health Information." 〈http://www.hhs.gov/ocr/hipaa〉 (accessed December 8, 2005).