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Resources to help people make decisions about end-of-life care and services before a crisis

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How to Prepare, Plan, and Be Present \ Your Rights \ Your Right to Privacy

Your Right to Privacy

Available in: Español

Your medical information is private and should not be shared beyond the medical professionals providing you care.

Privacy of Medical Records

You have the right to keep your medical records private as explained on the website of the U.S. Department of Health and Human Services. Sometimes the restrictions of the Health Insurance Portability and Accountability Act (HIPAA) are misunderstood or exaggerated by people you may interact with. Both you and people designated by you have the right to access your medical records and to speak with your doctors. You may have to provide written verification for someone you have appointed to speak or work on your behalf.

You also have a general right to privacy, in that you or your medical status should not be spoken about in public areas where it can be overheard. Most medical professional are sensitive to this, but you may need to remind them.

Confidentiality

You doctor has a duty not to disclose information received from you to anyone not directly involved in your care. However, the reality is that many people have routine and legitimate access to your records. You might have several doctors, nurses, and support personnel on every shift and you might see a therapist, nutritionist, or pharmacologist to name a few. 

Nonetheless, patients legitimately demand and expect confidentiality in many areas of their treatment. Generally speaking you must be asked to consent before being photographed or having others unrelated to the case (including medical students) observe a medical procedure; you have the right to refuse to see anyone not connected to a hospital; you have the right to have a person of your own sex present during a physical examination conducted by a member of the opposite sex; you have the right to refuse to see persons connected with the hospital who are not directly involved in your care and treatments (including social workers and chaplains); and you have the right to be protected from having the details of your condition made public.

If You Believe Your Rights Are Not Being Honored

First, speak up to your doctor. Often, issues can be dealt with quickly and easily if everyone is willing. If that isn’t satisfactory, most hospitals have patient advocates and/or ombudsmen who can help you if you have problems. They can help you with the process for registering a complaint, if appropriate. Many states have an ombudsman office for problems with long term care. Your state’s department of health or department of insurance may also be able to help. In addition, The Centers for Medicare and Medicaid have multiple venues to register complaints.

If you believe your civil rights have been violated, visit the HHS website on civil rights and healthcare to learn more and possibly file a complaint.

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A program of the National Alliance for Care at Home

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CaringInfo, a program of the National Alliance for Care at Home, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care. Learn more about CaringInfo.

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