Patient Rights:U.S. and European Perspectives

Carole Baas, Ph.D.

Patient Advocate, ECOG-ACRIN Advocate in Science, Susan G. KomenFounding Editor, Convergent Science Physical OncologyRISE Mentor & Research Think Tank, Young Survival CoalitionNational Council of Research Advocates, National Cancer Institute

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ABOUT | PATIENT RIGHTS

Join with us for a bright future

Patient Rights are the basic rules of conduct between patients and medical caregivers as well as the institutions and people that support them. They are a key foundation of a responsible healthcare system,

providing protections to patients and their families to further the goal of improved patient outcomes.

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Human Rights and the Advent of Patient Rights

The Universal Declaration of Human Rights (1948) recognizes “the inherent dignity” and the “equal and unalienable rights of all members of the human family”.

Patient Rights was developed on the basis of this concept of the person, and the fundamental dignity and equality of all human beings.

PATIENT BILL OF RIGHTS | ORIGIN AND HISTORY

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PATIENT BILL OF RIGHTS | ORIGIN AND HISTORY

“Assuring that the rights of patients are protected requires more than educating policy makers and health providers; it requires educating citizens about what they should expect from their governments and their health care providers—about the kind of treatment and respect they are owed.

Despite variations in local legislation and administration of patients’ rights, it is important… that patients receive treatment consistent with the dignity and respect they are owed as human beings.”

~ Statement by the World Health Organization (WHO)

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There’s more than one Patients’ Bill of Rights

• Patients’ rights vary in different countries and in different jurisdictions, often depending upon prevailing cultural and social norms.

• European Charter of Patients’ Rights (2002) is based on the Charter of Fundamental Rights of the European Union.

• European Charter of Patients’ Rights states 14 patients’ rights that together aim to guarantee a “high level of human health protection.”

PATIENT BILL OF RIGHTS | European Perspective

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Patients’ Bill of Rights Varies Across the U.S.

• In the early 1970’s the American Hospital Association drafted a Bill of Rights to inform patients of what they could reasonably expect while in the hospital.

• Since then, various groups have developed a number of different declarations, so that there’s more than one version of the Patient’s Bill of Rights.

• In 2010, a new Patient’s Bill of Rights was created along with the Affordable Care Act.

• Certain U.S. states have their own bills of rights for patients. Insurance plans sometimes have lists of rights for subscribers.

PATIENT BILL OF RIGHTS | U.S. Perspective

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The Patient’s Bill of Rights was created to reach 3 major goals:

1. To help patients feel more confident in the U.S. health care system, the Bill of Rights:

• Assures that the health care system is fair and it works to meet patients' needs • Gives patients a way to address any problems they may have • Encourages patients to take an active role in staying or getting healthy

1. To stress the importance of a strong relationship between patients and their health care providers.

1. To stress the key role patients play in staying healthy by laying out rights and responsibilities for all patients and health care providers.

U.S. PATIENT BILL OF RIGHTS | GOALS

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Information about their treatment

Taking Part in Treatment Decisions

Confidentiality and Privacy

Choice of Providers of healthcare

Non-Discrimination

Patient’s best interests

Right to Appeal

Access to Emergency Services

Standard of Care

PATIENT BILL OF RIGHTS | General Concepts

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Patient’s Bill of Rights and Responsibilities includes:

Choice of providers• You have the right to choose health care providers who can give you high-quality

health care when you need it.

Information for patients• You have the right to accurate and easy-to-understand information about your

health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.

U.S. BILL OF RIGHTS | CHOICE OF PROVIDERS | INFORMATION

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Access to emergency services

If you have severe pain, an injury, or sudden illness that makes you believe your health is in danger, you have the right to be screened and stabilized using emergency services.

You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.

U.S. BILL OF RIGHTS | EMERGENCY SERVICES

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Taking part in treatment decisions

You have the right to be informed about your treatment options and take part in decisions about your care. You have the right to ask about the pros and cons of any treatment, including no treatment at all.

As long as you are able to make sound decisions, you have the right to refuse any test or treatment, even if it means you might have a bad health outcome as a result.

You can also legally choose someone who can speak for you if you cannot make your own decisions. The completed and signed document, called Advance Directives, appoints someone to do this.

U.S. BILL OF RIGHTS | TREATMENT DECISIONS

FREE CHOICE

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Respect and non-discriminationYou have a right to considerate, respectful care from your doctors and other healthcare providers that does not discriminate against you based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.

Complaints and appealsYou have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals, or other healthcare personnel.

This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.

U.S. BILL OF RIGHTS | NON-DESCRIMINATION | RIGHT TO APPEAL

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U.S. BILL OF RIGHTS | PATIENT’S BEST INTEREST

Right to treatment in the patient’s best interest

A physician is a healthcare fiduciary:

"A Fiduciary obligation in medicine means that the physician focuses exclusively on the patient's health; The patient assumes the doctor's single minded devotion to him; and the doctor/patient relationship is expected to be free of conflict."

~ Laurence B McCullugh, A Primer on Bioethics (2nd Edition 2006)

Fiduciary: a person who has a duty to act primarily for another's benefit. Also, pertaining to the good faith and confidence involved in such a relationship.

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U.S. BILL OF RIGHTS | CONFIDENTIALITY AND PRIVACY

Confidentiality (privacy) of health information

You have the right to talk privately with health care providers and have your health care information protected.

You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it’s not correct, relevant, or complete.

Confidentiality and privacy laws: HIPPAA privacy rule protects all “individually identifiable health information.”

Includes demographic data that relates to: • Past, present or future physical or mental health conditions• Provision of health care to the individual• Past, present, or future payment for provision of healthcare

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Right to Preventive MeasuresEvery individual has the right to a proper service in order to prevent illness.

Right to Swift TreatmentEach individual has the right to receive necessary treatment within a swift and predetermined period of time. This right applies at each phase of the treatment.

Right to the Observance of Quality Standards/Standard of CareEach individual has the right of access to high quality health services on the basis of the specification and observance of precise standards.

BILL OF RIGHTS | European Charter of Patient Rights

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Right to Safety Each individual has the right to be free from harm caused by the poor functioning of health services, medical malpractice and errors, and the right of access to health services and treatments that meet high safety standards.

Right to InnovationEach individual has the right of access to innovative procedures, including diagnostic procedures, according to international standards and independently of economic or financial considerations.

Right to Avoid Unnecessary Suffering and PainEach individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness.

7/8 BILL OF RIGHTS | European Charter of Patient Rights

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Right to Personalized TreatmentEach individual has the right to diagnostic or therapeutic programs tailored as much as possible to his or her personal needs.

Right to CompensationEach individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical or moral and psychological harm caused by a health service treatment.

BILL OF RIGHTS | European Charter of Patient Rights

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Patient Responsibilities

• Patients must tell their health care providers about any drugs or supplements they are taking, and about health conditions and medical or surgical problems in the past or present.

• Ask questions or request further information from healthcare providers if they do not completely understand health information and/or instructions they’ve been given.

• Patients must also take responsibility for their lifestyles to help improve their own health. (For example, following a treatment plan, exercising, and not using tobacco.)

• Treat healthcare workers and other patients with respect. • Try to pay their medical bills, and follow the rules and benefits of their health plan

coverage.

BILL OF RIGHTS | PATIENT RESPONSIBILITIES

Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious healthcare system.

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• The doctor and patient are partners in care. The doctor makes recommendations, but no treatment will be given without the patient’s consent.

• Doctors generally speak directly with the patient. Family members may be included, but the patient – not the family – will make the decisions.

• It is acceptable and common to obtain a second opinion. Your doctor will not take offense.

• Even if you begin treatment, you have the right to change your mind at any point.

• You are encouraged to ask questions (to your doctor, to your nurse) if you do not understand something.

• Controlling pain and nausea are very important and no one wants you to suffer. If you experience pain, tell your doctor.

• You decide who to tell about your cancer. Some people like to keep it private and other people share it openly.

Norms for Cancer Care

BILL OF RIGHTS | Key Concepts

~ Bob Riter, Cancer Resource Center of the Finger Lakes

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Website: PATIENT’S BILL OF RIGHTS. http://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegalmatters/patients-bill-of-rights. Accessed February 1, 2016.

Website: WORLD HEALTH ORGANIZATION – Patients’ Rights. http://www.who.int/genomics/public/patientrights/en/. Accessed February 2, 2016.

Website: UNITED NATIONS: The Universal Declaration of Human Rights. http://www.un.org/Overview/rights.html. Accessed February 2, 2016.

Website: EUROPEAN CHARTER OF PATIENTS’ RIGHTS.http://ec.europa.eu/health/ph_overview/co_operation/mobility/docs/health_services_co108_en.pdf. Accessed February 2, 2016.

Barry R. Furrow, Thomas L. Greaney et al; Health Law, Cases Materials and Problems, 6th Edition

Nawaz Merchant, MS Health Policy, Thomas Jefferson University, School of Population Health

Sanford Jeames, DHA, Patient Advocate for ECOG-ACRIN, AACR, and ASCO

Bob Riter, Cancer Resource Center of the Finger Lakes

REFERENCES

Get in TouchAs a cancer survivor myself, I am dedicated to improving the care of cancer patients worldwide and to supporting top-quality, impactful research that will increase our understanding of cancer and improve patient outcomes. Contact me to learn more about how we can make the patient voice an integral part of medicine.

2700 Lago Vista Loop, Irving, TX 75062 USA

carole.baas@gmail.com

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