This past week I watching a very sad story unfold. Just before heading into emergency surgery, a patient called a close friend, and asked them to come to the hospital. Being a good friend, Sal (not the real name) headed to the hospital, where they were informed by the staff that they weren’t allowed to see the patient, or obtain any information. It seems that the patient’s spouse, who wasn’t present and wouldn’t be for several days, had left strict orders that there were to be no visitors.
For the patient, things were going from bad to worse. In fact, the only information the friend could get to repeated requests to the medical staff of “but what can I do,” was “pray.” Calls to the spouse by several friends of the patient were met with the same response, “no visitors.”
While I explained to the friend the rules of HIPAA (Health Insurance Portability and Accountability Act) and confidentiality, it didn’t help with Sal’s very realistic fears that their friend was going to die alone. I did suggest that if the patient should have any wakeful periods, “Ask the staff to let the patient know you are there and whether they would like to see them.” If the patient’s response is “yes,” the staff could allow the visit. Since the patient was able to speak for them self, the spouse’s permission was not needed.
The take home point of this story is that hospitals and medical providers operate under a set of guidelines regarding patient information confidentiality that have been set forth under HIPAA. However, each provider and organization will implement policies and procedures that they believe best meet their needs. For example HIPAA does not require that you give your health care provider written permission to discuss your health information with family, friends or others involved in your care. Yet, many providers and hospitals will require it.
To avoid the situation described above, as well as ensure that your wishes are honored and your confidentiality kept, please consider the following:
• Be very careful who you select to make decisions for you in the event you are unable to do so. Called power of health attorney, health proxy, or medical power of attorney, this individual can make health decisions for you if you are unable to do so. States vary about the type of forms required, which can be obtained on-line.
If you are checking into the hospital, the person doing the intake will ask who can speak for you and will make a note in your chart accordingly. It can be confusing, since this question is often asked by saying, “in the event of an emergency whom should we contact?” Some hospitals will ask if you have a medical power of attorney. This person may not be your spouse or partner, so be as clear as you can about who should be contacted. They will want a phone number if they don’t have one on record. I have been in situations where the admissions department would not use the most appropriate person simply because the patient didn’t have a phone number with them.
While it would seem logical that your spouse or partner should speak for you in the event that you can’t, there are many people who recognize that differing viewpoints as well as emotional strain may make it best if someone else serves this function.
• In general, providers can not discuss your condition with family or friends unless you have given them permission. However, in certain cases, such as an emergency, they will. In the situation described above, the spouse had spoken for the patient to the medical staff and so “no visitors” had to be observed by the hospital.
• Download and Read “A Patient’s Guide to the HIPAA Privacy Rule: When Health Care Providers May Communicate About You with Your Family, Friends, or Others Involved in Your Care.” Consider taking this document with you to your next medical appointment and discuss it with your provider.
• Complete Advance Directives (Living Will). This is a legal document, which varies by state that outlines your decision about what kind of end-of-life care you are willing to have or not have. This includes things like dialysis, breathing machines, tube feeding etc. You can also specify if you want to be an organ or tissue donor.
Download your states form. While some states have on-line Living Will Registries, others do not and in some cases, the state has discontinued them. There is a private company that offers an on-line Living Will Registry. In the event you do not use an on-line registry, make sure you form is completed, signed and dated, with copies being given to medical provider(s), family members, hospital where you receive care and attorney.
• If a family member, neighbor or friend accompanies you to the hospital for an emergency, if you don’t want them privy to conversations between you and the medical staff, ask them to wait outside. Otherwise, the provider can assume that since they are present with you, it’s okay to discuss your medical situation in front of them.
• Use an advocate. Learn more about being an advocate.
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