By Sue Lichtenfels
The old saying, “Nothing lasts forever,” most definitely applies to these complex biological machines we call our bodies. Regardless of how much we exercise, watch our weight, and practice a healthy lifestyle, eventually our bodies do require repairs and tune-ups. Every now and then we find ourselves in the body shop, also known as our local hospital. Patients who are blind or visually impaired can find the hospital experience extremely overwhelming; senses get disoriented, communication issues arise with staff, and you generally feel like a used Kleenex. When you are lying in that hospital bed, the least thing you’re feeling is empowered. You do have rights though, of which you should be aware.
According to Title 28, Sections 103.21-103.23 of the Pennsylvania Civil Code, hospital patients have a minimum of 22 rights outlined in the Patient Bill of Rights. Quoting from the code, “It is the purpose of these sections to promote the interests and well-being of the patients and residents of hospitals subject to this subpart even in those instances where the interests of the patients may be in opposition to the interests of the hospital.” All patients receiving treatment in a Pennsylvania hospital have the right to:
(1) Respectful care given by competent personnel.
(2) Be given, upon request, the name of his attending physician, the names of all other physicians directly participating in his care, and the names and functions of other health care persons having direct contact with the patient.
(3) Every consideration of his privacy concerning his own medical care program. Case discussion, consultation, examination, and treatment are considered confidential and should be conducted discreetly.
(4) Have all records pertaining to his medical care treated as confidential except as otherwise provided by law or third-party contractual arrangements.
(5) Know what hospital rules and regulations apply to his conduct as a patient.
(6) Expect emergency procedures to be implemented without unnecessary delay.
(7) Good quality care and high professional standards that are continually maintained and reviewed.
(8) Full information in layman’s terms, concerning his diagnosis, treatment, and prognosis, including information about alternative treatments and possible complications. When it is not medically advisable to give such information to the patient, the information shall be given on his behalf to the patient’s next of kin or other appropriate person.
(9) Except for emergencies, the necessary informed consent prior to the start of any procedure or treatment, or both. Informed consent is defined in section 103 of the Health Care Services Malpractice Act (40 P. S. § 1301.103).
(10) Be advised, or in the event the patient is unable to give informed consent, a legally responsible party to be advised when a physician is considering the patient as a part of a medical care research program or donor program, and the patient, or legally responsible party, must give informed consent prior to actual participation in such a program. A patient, or legally responsible party, may, at any time, refuse to continue in any such program to which he has previously given informed consent.
(11) Refuse any drugs, treatment, or procedure offered by the hospital, to the extent permitted by law, and a physician shall inform the patient of the medical consequences of the patient’s refusal of any drugs, treatment, or procedure.
(12) Assistance in obtaining consultation with another physician at the patient’s request and own expense.
(13) Medical and nursing services without discrimination based upon race, color, religion, sex, sexual preference, National origin or source of payment.
(14) Access, where possible, to an interpreter if the patient does not speak English.
(15) Upon request to the hospital, access to all information contained in his medical records, unless access is specifically restricted by the attending physician for medical reasons.
(16) Expect good management techniques to be implemented within the hospital considering effective use of the time of the patient and to avoid the personal discomfort of the patient.
(17) When medically permissible, be transferred to another facility only after he or his next of kin or other legally responsible representative has received complete information and an explanation concerning the needs for and alternatives to such a transfer. The institution to which the patient is to be transferred must first have accepted the patient for transfer.
(18) Examine and receive a detailed explanation of his bill.
(19) Full information and counseling on the availability of known financial resources for his health care.
(20) Expect that the health care facility will provide a mechanism whereby he is informed upon discharge of his continuing health care requirements following discharge and the means for meeting them.
(21) Access an individual or agency who is authorized to act on his behalf to assert or protect the rights set out in this section.
(22) Be informed of his rights at the earliest possible moment in the course of his hospitalization.
You will note that #13 addresses non-discrimination; however, it does not include disability as a protected class. This bill of rights was adopted into the Pennsylvania code in the late 1980’s, before the passage of the Americans with Disabilities Act (ADA). Today, the listing of patients’ rights on many hospital websites and in their handouts does include non-discrimination on the basis of disability in their adopted set of patient rights.
The code furthermore declares, “The hospital shall develop procedures to inform each patient of his rights. Copies of the hospital’s Patient’s Bill of Rights shall be made generally available through one of the following ways:
(1) Prominent displays in appropriate locations in addition to copies available upon request.
(2) Provision of a copy to each patient or responsible party upon admission or as soon after admission as is feasible.”
Like every other industry, finding a hospital that will provide these materials in an accessible format is hit or miss. Larger hospital systems such as the university of Pittsburgh Medical Center (UPMC) actually have a department dedicated to disability resources which will provide patient information in an accessible format. Smaller systems and independent hospitals may need more hand-holding and cajoling to become aware of the need for accessible formats and how to accomplish them. Most hospitals do provide a listing of patient rights and responsibilities on their websites. When seeking patient information either online or in person, start with the Patient Relations department.
When you are hospitalized, if you or your family feel you need additional help to protect your rights, you may want a patient advocate. Most hospitals have one or two patient advocates on staff through the Patient Relations department. Some hospitals refer to these employees as ombudsmen or patient services consultants. According to Healthwise.org, these advocates can: make sure that you and your family know all the facts about your condition and your care; give you and your family emotional support; help you get copies of your medical records; help with delays in getting tests, treatment, or information; work with the hospital when you have complaints; work with your employer if you’re facing possible job discrimination because of medical issues; and help you understand and deal with hospital bills and your insurance. If the hospital cannot provide you with a patient advocate, they may be available through employee benefit programs, medical insurance providers, and private duty hiring.
This information has been provided on behalf of PCB’s information Access Team. Additional topics related to accessing information within the healthcare setting will be explored in an upcoming Talking Advocacy Podcast. The team is also working on a “best practices” guide to insure healthcare staff is communicating effectively with persons who are visually impaired. More information about these two projects will be forthcoming.