Empowering Mesothelioma Patients: Understanding the Patient Bill of Rights

Navigating mesothelioma can be completely overwhelming, and it’s easy for patients and their loved ones to feel lost in unfamiliar territory. One important way to gain clarity and a sense of empowerment is to understand your rights as a mesothelioma patient.

Mesothelioma patients are protected by something called the Patient Bill of Rights, a set of guidelines agreed upon by the medical community to ensure that all patients—including mesothelioma patients—get the respectful, comprehensive, informed, and consensual care that they deserve.

In this article, we’ll explore the Patient Bill of Rights as they pertain to mesothelioma patients. These guidelines exist to protect and empower patients throughout their mesothelioma journey, ensuring that they have access the information and consideration they need in order to feel confident in their care. It’s important for mesothelioma patients to know their rights so that they can advocate for themselves.

What is the Patient Bill of Rights?

The Patient Bill of Rights are a set of guidelines clearly stating and protecting the ethical treatment to which every patient is entitled. They were first adopted by the American Hospital Association (AHA) in 1973, and revised in 1992. These guidelines are based on the foundational belief that patients have inherent rights, and that medical professionals are expected to uphold and respect those rights. They give both patients and doctors a sense of the standard of care due to patients, highlighting a patient’s right to participate in medical decisions made during their treatment or care.

Individual hospitals, cancer care centers, or practitioners may have their own variations on the Patient Bill of Rights, and may add additional rights beyond these basic standards.

The Mesothelioma Patient Bill of Rights: A Basic Rundown

According to the AHA, mesothelioma patients are entitled to the following from their healthcare providers:

1. Considerate, respectful care. Mesothelioma patients have the right to be treated with respect, consideration, and personal dignity at all times, including respect for their cultural, spiritual, and personal values, and their related beliefs and preferences. This also includes the right to receive treatment in a safe, clean environment free of abuse or neglect, without any excessive physical restraint, isolation, or over-medication.
2. Information about your condition and treatment. Mesothelioma patients have the right to receive relevant, understandable information about their mesothelioma diagnosis, treatment, and prognosis. Your healthcare provider should encourage you to seek information, and should not shut you down or discourage you from seeking clarifications or second opinions.
3. Answers to questions about specific treatments. Mesothelioma patients have the right to discuss and ask questions about specific procedures or treatments, including but not limited to potential risks, recovery, and any medically reasonable or available alternatives (along with comparative risks and benefits).
4. Knowledge about who is caring for you. Mesothelioma patients have the right to know who is involved in their care, including physicians, nurses, and any other healthcare professionals. This includes knowing if anyone involved in their care are students, residents, or other trainees.
5. Knowledge about the financial impact of your care. Mesothelioma patients have the right to know the potential immediate and long-term financial significance of treatment choices.
6. The ability to make decisions about your care, and to change your mind. Mesothelioma patients have the right to make decisions about their plan of care, both before and during the course of treatment.
7. The ability to refuse a recommended treatment or plan of care: In almost all cases, mesothelioma patients have the right to refuse a proposed treatment or care plan. This includes the right to information about the medical consequences of refusal, and the right to continued care and services (or transfer to another hospital or provider)
8. The right to full information about advance directives, and the right to have those advance directives followed. Mesothelioma patients have the right to be told about advance directives, legal documents stating their medical wishes in case they become unable to do so themselves. Once presented, advance directives should be followed. If there are any issues that might prevent an advance directive from being followed, the patient must be informed.
9. The right to privacy. Mesothelioma patients have the right to privacy about their care, and to expect that any related information, communications, or records are considered confidential and protected.
10.  The right to view their own patient files and to have those files explained to them. Mesothelioma patients have the right to access their own medical records, and to have that information explained or interpreted as necessary.
11.  The right to reasonable, timely responses to requests for appropriate and medically indicated care and services. If a mesothelioma requests a medically appropriate service or form of care, they have a right to have those requests responded to as soon as possible, within their provider’s capacity and in accordance with the urgency of a case.
12. The right to transfer to another healthcare provider. Whenever medically possible, mesothelioma patients have the right to transfer to another healthcare facility or provider, once accepted for transfer by the new facility or provider. They also have the right to be informed about any potential risks or benefits that may come from such a transfer.
13. The right to transparency about business relationships between a healthcare provider and any third party that may influence the patient’s care. If a healthcare provider or facility has business relationships with a third party that may impact a mesothelioma patient’s care in any way, the patient has the right to information about those relationships truthfully and transparently.
14. The right to full information about research studies, including the right to decline participation: In some cases, healthcare providers may seek to include mesothelioma patients in research studies, data gathering, or clinical trials. Mesothelioma patients have the right to be fully informed about any participation, including the right to refuse. If they do decline, mesothelioma patients have the right to the same level of continued treatment and care.
15. The right to reasonable continuity of care: Mesothelioma patients have the right to “continuity of care”, which means care by the same providers or facilities whenever possible or appropriate. If a provider or facility is no longer available or appropriate, mesothelioma patients must be informed of realistic, accessible alternative care options available to them.
16. The right to information about healthcare providers’ policies related to care, treatment, and patients’ rights, including their grievance process: Mesothelioma patients have the right to receive full information about each provider and facility’s policies regarding the patient bill of rights, as well as any additional rights and responsibilities relating to their care and treatment. They also have the right to full information about a provider/facility’s grievance process and conflict resolution protocols (for example, ethics committees), as well as access to any patient representatives, social workers, or advocates available to them throughout these processes.

Are you or a loved one looking for more information about mesothelioma? Call (855) 385-9532 to learn more.