Patient and Family Rights

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Patient and Family Rights and Responsibilities

Boston Children's Hospital (“Hospital”) is committed to respecting and protecting the rights of its patients and families. We strive to provide care that is sensitive to culture, race, religion, sex, gender identity, sexual orientation, marital status, disability, source of payment and national origin. This bill of rights provides information about our commitment to you and your family.

General Rights

In this Hospital you and your family have the right to:

  • Receive medical care without regard to race, creed, color, national origin, religion, sex, gender identity, sexual orientation, marital status, age (within guidelines), or disability.
  • Receive prompt life-saving treatment in an emergency without discrimination on account of economic status or source of payment and without delay for purposes of discussing source of payment.
  • Receive considerate, safe and respectful care and to have all reasonable requests responded to promptly and adequately within the capacity of the Hospital.
  • Receive care that is individualized to support and address your or your child’s age, personal dignity and needs.
  • Obtain the name, staff position and licensure status, if any, of all persons who examine, observe or treat you by means of an identification badge required to be worn by all such persons.
  • Refuse to be examined, observed, or treated by students or any other hospital staff in training. This will not affect your or your child’s access to psychiatric, psychological, or other medical care and attention.
  • Refuse to serve as a research subject and/or to receive care when the primary purpose of that care is educational or informational rather than therapeutic.
  • Upon request, obtain an explanation as to the relationship, if any, of the Hospital to any other health care facility or educational institution insofar as said relationship relates to your care or treatment.
  • Be given a copy of the “Patient and Parent or Legal Representative Rights and Responsibilities.” If you cannot read them or understand them, someone will translate or explain them to you.
  • Have your spiritual, cultural and psychosocial needs respected and supported.
  • Receive care in a safe setting and to be free from all forms of abuse or harassment.
  • Discuss any ethical issues you may have regarding your or your child’s treatment with the nursing and medical staff. If your questions are not answered or further concerns exist, you may contact the hospital Ethics Advisory Committee.
  • Upon request, to receive a list of names, addresses and telephone numbers of pertinent state client advocacy groups and protective services.
  • For rape victims of childbearing age, to receive medically and factually accurate written information prepared by the Commissioner of Public Health about emergency contraception, and to be provided with emergency contraception upon request.
  • If refused treatment because of economic status or lack of a source of payment, to have prompt and safe transfer to a facility that will receive and treat you or your child, with the hospital arranging for transfer with appropriate clinical information and staff if necessary.

Privacy and confidentiality

  • Have privacy during medical treatment or other rendering of care.
  • Have confidentiality of all records and communications in accordance with Massachusetts and federal law.
  • Access information contained in your clinical records within a reasonable time frame and to receive a copy of your clinical records in accordance with Massachusetts law and Hospital policy.
  • Receive a copy of the Hospital’s privacy practices at the time of your registration.
  • Request that no information contained in the patient directory be disclosed to anyone not directly involved with your or your child’s care.
  • Request that the Hospital communicate your confidential health information only in accordance with applicable law and the Hospital’s privacy practices.
  • Not have your confidential information discussed in public areas of the Hospital.
  • To find out how your confidential health information may be used and what disclosures have been made as required by state and federal law.
  • Request certain restrictions of the use or disclosure of your health information unless it interferes with patient care, treatment, or Hospital operations.
  • Designate visitors unless such visitor(s) would pose a risk to the patient, other patients, staff, or would otherwise interfere with hospital operations.
  • Deny visitors to the extent permitted by law. This right does not apply to people who are directly involved in your care.
  • Request an amendment or correction to your confidential health information, if you believe the information is incomplete or incorrect as permitted by applicable law.
  • Refuse any contacts for fundraising or marketing activities.
  • File a complaint about any of the Hospital’s health information practices by contacting the Hospital’s Privacy Officer at 617-355-5502 or HIPAA Compliance Manager at 857-218-4680. Or if you believe your rights have been violated, you may contact:
  • The Office of Civil Rights
    United States Department of Health and Human Services
    200 Independence Avenue SW
    Washington, DC 20201

Decision making and consent/participation in care

  • Except when emergency services are required, a physician or other clinician will provide you and/or your family with sufficient information that you can understand about your condition, planned treatment, procedures, including potential benefits, risks or side effects, and prognosis so that you may be involved in decisions regarding your care, treatment and services.
  • Based on such information, give informed consent to your care and treatment in accordance with Massachusetts law.
  • Make advance directives if you are 18 years of age or older. This means you have the right to direct your healthcare or choose someone to make health care decisions for you if you are no longer able to make your own health care decisions.
  • Have your decisions regarding organ donation honored within the limits of the law or hospital capacity.
  • Have a family member or legal representative promptly notified of your admission to the hospital.
  • You have the right to a clear explanation of the results and outcomes of any treatment or procedure, including unanticipated outcomes.
  • Be informed by your physician or other clinician of any ongoing needs following your discharge from the Hospital and the availability of resources in your community that can help you.
  • Receive information regarding access to special services such as guardianship, advocacy services and protective services.
  • Refuse consent for care, treatment and services to the extent permitted by law. You also have the right to be fully informed of the effects of refusing treatment and the potential medical consequences of your actions.
  • Consult with a specialist at your request and expense.
  • Transfer to another hospital subject to Massachusetts law. A transfer will be made only when medically appropriate and only when appropriate information related to the care, treatment, and services provided is exchanged with care providers at the receiving facility. Any transfer, except in an emergency, would be fully explained and provisions for continuity of care would be made.
  • Receive care that reasonably accommodates for special needs.

Research

  • Information about any research or education projects that affect your child’s care or treatment. You have the right to give permission or to refuse to join in these projects. You will receive care regardless of whether you refuse to participate in these projects.

Pain management

  • Care that incorporates pain management.
  • Receive regular, age-appropriate pain assessments, prompt responses to complaints of pain by staff, and to be involved in the decisions about pain management.

Restraints

  • Be free from seclusion and restraints of any form that are not medically necessary and do not improve your child’s well being. Use of restraints for medical, surgical or behavior management will be in compliance with applicable law and Hospital policy. Restraint includes either a physical restraint or a drug that is being used as a restraint. Seclusion is the involuntary confinement of a person in a room or area where the person is physically prevented from leaving.

Financial services

  • Upon request, receive a copy of an itemized bill or other statement of charges and an explanation of the bill and/or charges, regardless of the source of payment.
  • Receive information about financial assistance and free health care.

Communication

The members of your health care team or your child’s health care team will:

  • Introduce themselves to you or your child.
  • Explain their roles in your care or your child’s care.          
  • Seek your opinion about the goals of your care or your child’s care and take the time to listen to you.
  • Speak and write respectfully to you and your child.
  • Confirm your or your child’s identity by checking your wristband or asking your name and date of birth before administering any medication or treatment.

A positive environment

To provide care that respects a person’s stage of growth and development, we:

  • Consider you or your child’s interests and needs, not just those related to illness.
  • Ensure that our staff understands the needs and concerns of children, teenagers and young adults.
  • Provide opportunities for patients to grow and learn.
  • Try to keep your schedule or child’s schedule and activities as normal as possible.
  • Encourage you to bring your clothes or your child’s clothes and special items from home.

Patient/family responsibilities

In this hospital, you have the responsibility to:

  • Share with your care providers information about your health or your child’s health, such as a complete health history, symptoms, treatments, medicines your child takes and any other information that could bear on your or your child’s health. You should report perceived risks in your or your child’s care and unexpected changes in your or your child’s condition.
  • Tell us how you want to take part in your or your child’s care and ask us questions if you do not understand any part of your child’s care or what you are expected to do to participate in that care.
  • Follow the treatment plan and instructions provided to you by nurses and other health care providers and express any concerns about your ability to follow the proposed care plan or course of care, treatment or services.
  • Let us know if you are not satisfied with your or your child’s care or with any other aspect of your experience at the Hospital.
  • Respect the rights of other patients, families and hospital personnel and be considerate of Hospital and other patients’ property.
  • Refrain from discussing or repeating information about other patients or families.
  • Patient Relations staff are available to work with you to address questions and concerns, to clarify hospital policies and procedures, and to answer questions about Patient and Family Rights and Responsibilities. They can be contacted through:
    • The Center for Families (Farley 1)
      Monday - Friday, 8:30 a.m. - 4:30 p.m.
      617-355-7673 (5-7673 within the hospital

      After 4:30 p.m. or on weekends and holidays, contact the administrator-on-duty (AOD) through the page operator: 617-355-6369 (5-6363 within the hospital).

Exercising your rights

Your concerns are taken seriously and we want to hear from you if you are not satisfied with any part of your care at Children’s Hospital Boston. Listed below is the process to raise your concerns within Children’s Hospital Boston. For your convenience, contacts for raising your concerns outside of the hospital are also listed.

  • Bring your concerns or complaints forward to your unit charge nurse, unit manager or to a member of the Patient Relations staff.
  • If your concern is not resolved, you may file a formal grievance by doing the following:
    1. Submit your grievance either verbally or in writing.
    2. The Hospital will tell you the time frame to investigate and respond to your grievance.
    3. The Hospital will provide a written response of its decision, which will include:
  • Name of the Hospital contact person
  • Steps taken on behalf of the patient
  • Outline of the results
  • Date of completion
  • Grievances regarding quality of care, safety or premature discharge will be reviewed in a timely manner.
  • Patients and families have the right to file a patient safety or quality of care grievance with external regulatory, licensure or accreditation agencies without using the process within the hospital listed above.

Regulatory, Licensure, and Accreditation Contact Information:

  • The Division of Health Care Quality
    Department of Public Health
    99 Chauncy Street
    Boston, Massachusetts 02111
    617-753-8000
  • The Office of Quality Monitoring
    Joint Commission on Accreditation of Healthcare Organizations
    One Renaissance Boulevard
    Oakbrook Terrace, Illinois 60181
    630-792-5636 (fax)
  • The Office of Licensing
    Department of Mental Health
    25 Staniford Street
    Boston, Massachusetts 02114
    617-626-8000

Procedure

Patients and families

“Patient and Family Rights and Responsibilities” are included in the welcome package, which is distributed to all inpatients and their families at the time of admission.

“Patient and Family Rights and Responsibilities” are also displayed on each floor located at the elevator bank, the clinic waiting rooms and the registration areas.

The Notice of Privacy Practices will be distributed to all patients at the point of registration. They will also be displayed throughout the facility and at www.childrenshospital.org/records.

Related Administrative Policies and Procedures:

  • “Administrator on Call”
  • “Charity”
  • “Privacy - Confidentiality, Patient Information”
  • “Conflict of Interest”
  • “Ethics Consultations”
  • “Complaint and Grievance Resolutions for Patients and Families”
  • “Information Services Security Policies and Procedures”
  • “Misconduct-Investigation of Caregiver Misconduct”
  • “Nondiscrimination Policy”
  • “Patient and Family Satisfaction Surveys”

Related Patient Care Policies and Procedures:

  • “Advance Directives”
  • “Confidential Patient Status – On Admission and Throughout Stay-Visit”
  • “Consent for Diagnosis and Treatment”
  • “Discharge Against Medical Advice”
  • “Education – Provision of Education for Patients and Families”
  • “Emergency Detention”
  • “Interpreters for Families who do not understand English and for the Hearing Impaired”
  • “Legal or Correctional Restrictions Custody – Care of the Patient”
  • “Medical Records Use of, Protection of, components of” (CHW)
  • “Pain Assessment and Management”
  • “Restraints, Use of"

This policy applies to all Hospital licensed locations, including the following:

References

Joint Commission Hospital Accreditation Standards 2006, “Patient Rights and Organization Ethics.”

Centers for Medicare & Medicaid, 42 CFR Part 482—“Conditions of Participation for Hospitals.”

The National Patient Safety Foundation, General Laws of Massachusetts Title XVI Chapter 111 Section 70E “Patient Rights “45 CFR 164.524, Access of Individuals to Protected Health Information.

Download a copy of Patient and Family Rights

A Spanish version of this education sheet is available from your provider

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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