When you received your mesothelioma diagnosis, you may have felt very powerless. This is a fearsome disease. You are not completely at its mercy, however. You can sue the negligent corporation or corporations that exposed you to asbestos. In your medical care, you have the right to expect a certain level of treatment and care. You have mesothelioma patient rights.
March 15 is World Consumer Rights Day. So this is a good time of year to review your mesothelioma patient rights, as a patient and as a consumer.
The Foundation of Mesothelioma Patient Rights
It’s hard to stand up for yourself when you’re feeling sick. Your loved ones can advocate for you, but they may be too distracted and exhausted from worry. You’re fighting against cancer; you shouldn’t have to fight your doctor too.
That’s why mesothelioma patient rights are so important. These patients’ rights act as guidelines for doctors and hospitals. If you don’t receive the treatment you deserve from your medical professionals, these guidelines give you a basis to stand up for your rights.
American Hospital Association Patient Bill of Rights
The American Hospital Association (AHA) developed a Patient’s Bill of Rights in 1973. This was later revised in 1992. This set of guidelines outlines the treatment that patients should be able to expect from medical care providers. It is used by doctors and hospitals to this day.
Under these guidelines, mesothelioma patient rights include:
- You are entitled to have a say in your care and treatment, unless you are incapacitated and unable to speak for yourself.
- Your doctor must tell you the truth about your diagnosis and the probable course of your disease, as well as your treatment options.
- You get to make the decisions about your own care. You may say no to a course of treatment, even if your doctor recommends it. Your doctor must inform you of the effects different choices may have on your health outcome.
- Your medical providers must inform you of your rights according to state laws and the policies of the hospital.
- You have the right to see your medical records.
- Hospitals and doctors are required to protect your privacy and not share your medical records or information about your case without your consent.
- You have the right to expect to be treated with consideration and respect by your doctor and the hospital.
Many mesothelioma patients have found benefit in joining treatment studies. In addition to the possibility of a better outcome, you have the opportunity to increase medical knowledge about mesothelioma treatments. But you are within your mesothelioma patient rights if you choose not to take part in research studies.
Understand your mesothelioma patient rights so you can make sure you get the care that you deserve.
Mesothelioma Patient Rights and the Affordable Care Act
The Affordable Care Act (ACA – also known as Obamacare) created even more rights for medical patients. Some of these are particularly important to mesothelioma patients.
For example, in the past, insurers could place a lifetime cap on the amount of care you could receive. These caps were usually high: $1 million or $2 million. It’s hard to imagine that one person’s healthcare would ever cost that much. But a serious disease, such as mesothelioma, can lead to significant medical bills. New surgeries that increase longevity also add to the cost of treatment. Under the ACA, health insurance policies cannot include a lifetime cap on coverage. Annual caps on coverage are also barred. This means that mesothelioma patients and their families will never have to make the hard choice between racking up debt or skipping a possibly life-extending treatment.
Another important ACA improvement for mesothelioma patient rights is coverage for pre-existing conditions. Before the ACA, many health insurance policies would not cover conditions that were diagnosed before you started coverage. This often meant that patients with long-term illnesses were stuck in one health plan once they got sick. Now that all health insurance plans must cover pre-existing conditions, mesothelioma patients have the right to change insurance plans.
Other ACA provisions that impact mesothelioma patient rights include:
- You can’t be charged a co-pay for some preventative screenings.
- If your insurance provider denies coverage for a treatment, you are entitled to a clear explanation of the reason.
- Your insurer must explain the costs and benefits of your plan to you in language that is easy to understand.
These are just some of the enhanced coverage rights that mesothelioma patients have gotten for the past several years under the ACA. If some or all of the ACA is rescinded, this may affect mesothelioma patient rights to coverage and care.
Consumer Rights Include Mesothelioma Patient Rights
In 1998, a presidential advisory commission spelled out a Consumer Bill of Rights and Responsibilities for the health care industry. The report included eight rights, which are based on the Consumer Bill of Rights that was earlier proposed and adopted by the United States and the United Nations in the 1960s. These are also important mesothelioma patient rights.
The eight basic rights and responsibilities are:
- Your health plan must give you clear and truthful information about your coverage.
- You have the right to a choice of health care providers within your plan. Every plan must allow you to see specialists and include enough doctors in the network that you can get an appointment without too much delay.
- You have the right to go to the emergency room without paying out of network fees if you are having a health emergency.
- You have the right to take part in your treatment decisions. Your doctor must consult with you and you get the final say over your mesothelioma treatment choices.
- You have the right to be treated with respect by the medical professionals who are caring for you. Doctors and other care providers can’t discriminate against you based on race, nationality, gender, disability, or other protected categories. You cannot be discriminated against based on your ability to pay for services.
- Your health information must be handled with care to preserve your confidentiality.
- Your insurance plan must provide a process where you can appeal determinations about what procedures it will and will not cover.
- The final item is health consumer responsibility. You are expected to do your part to improve your health and the health of your community. These are just a few of the patients’ responsibilities:
- Making healthy lifestyle choices
- Being a positive participant in your healthcare and cooperating with your healthcare providers
- Sharing relevant information with your doctors
- Taking care not to infect others when you are ill
- Treating healthcare workers and other patients with respect
- Accepting the limits of science and medicine. In other words, don’t expect your doctor to work miracles (but be grateful if she does)
These rights may seem like common sense. Perhaps you take your mesothelioma patient rights for granted. You shouldn’t. Healthcare advocates put years of effort into these safeguards to make sure that you get the best treatment possible from your medical providers. We all owe a debt of gratitude for these protections. If you have questions about your healthcare rights, please contact us.