Family communication
sharing medical news
The decision to share health care information with loved ones is important, and at the same time is highly personal. Relatives can be a good source for information about conditions that run in your family and a sounding board for your concerns and decision-making. Close family members can also be a valuable source of emotional support. You can also be a source of important information for your relatives as they learn about their potential risks due to genetics. It is your decision what, if anything, to share about your medical status.
There are some important considerations for you to bear in mind when you are planning to share your medical status. First and foremost, you need to decide how to share the information and with whom to share it. You should consider whether you want to share at one big family gathering or individually with those who are closest to you. It is always a good idea to write down notes and bring them with you so that all your priorities are covered in the conversation. Some basic thoughts are:
- Who has experience with your condition?
- Who could be at risk with this same condition?
- Who will provide you with the best support?
- How will telling this person make you feel: comfortable/uncomfortable/awkward?
It is always best to be open and honest about your diagnosis, prognosis, emotional state, biggest concerns, and hopes and goals as it takes time and effort to keep these matters secret and can lead to misunderstanding or confusion. It is also a good idea to be prepared to address how your loved ones can best support you, now and into the future. You can consider listing ways in which your family members can be helpful such as driving you to appointments, taking over mundane or routine tasks for a while, keeping you company while in treatment, coming to physician visits and acting as an additional pair of ears to help support you in following your care plan. In some cases it may be helpful to show family members test results, notes from your doctor or information you have printed out from credible online sources. Remember though, there is little you can do to control how people will respond. It is important not to take on anyone else’s angst, anger or acting out issues; you are the one needing their support.
It is your decision what, if anything, to share of your medical status. Your health care providers have stringent rules from the US Department of Health and Human Services, Office of Civil Rights prohibit them from speaking with your family members or friends except when you have specifically given your permission. In fact, you probably will recall that you are asked to sign a HIPAA form at any new providers office. HIPAA requires most doctors, nurses, pharmacies, hospitals, nursing homes and other health care providers to protect the privacy of your health information. Should you wish others to be able to access your records, you can complete a HIPAA approved form and give it to those providers where you wish to allow access.