Should Caregivers Be Listed in Patient Medical Records?

Caregiving advocates are pursuing a push to get healthcare providers to make an official place in medical records to document the roles of caregivers.  Providers currently don’t  have a standard way of knowing whether patients have caregivers, let alone who the primary caregivers are, and public and private organizations have no reliable way to even count caregivers.

No formal records lead to lapses in communication

When health professionals don’t have the caregiver on record, important medical information can be easily missed.  It’s inevitable because HIPAA privacy laws prevent medical practitioners, insurers and basically any entity with access to a patient’s personal health information from sharing any health-related information that’s “not necessary” to advance your care. And patients who visit a medical practitioner alone may not remember discussions, instructions, or advice provided during a routine visit, leaving caregivers with no way to obtain the most up-to-date information on new medications or diagnoses.

Because the HIPAA guidelines initially created upheaval in the healthcare community, most providers have taken a “do-not-share” approach to communicating with family or friends regarding a patient’s care. In other words, most providers won’t share information unless the patient has given written permission to do so as a precautionary measure to avoid violating HIPAA. So if a caregiver calls after an appointment, the provider often won’t provide any details unless the patient has signed a release form to do so. (NOTE: Thanks to Carol Levine for clearing up the confusion surrounding HIPAA rules regarding the need for release forms and the sharing of personal health information. This section has been revised to reflect this clarification. Read this interview for more information.)

Med City News describes family caregivers as “like undocumented workers”. Caregivers are given no official status in the medical field, and there is often no official record of the caregiver’s existence in the patient record.  There are plenty of studies and surveys to prove that caregivers are not always family – but in many cases, it’s a single person that provides long term care of a disabled or 80-plus person that needs extra care.

These caregivers not only take care of basic needs, but also become a “nurse” to the person as well.  This can include wound care, giving injections, catheterization, using durable medical equipment and more, most of it with minimal training, if any.

What will happen until there is a place on medical records to document family caregivers and what their role is?

  • Family caregivers will continue to be branded as a nuisance rather than taking their rightful place as part of the health care team.
  • Education, training and support caregivers need to be a more confident and capable care provider and also a responsible part of their own health will continue to be in short supply.
  • The opportunity will be lost for more targeted research on what impact family caregivers have on their loved one’s healthcare and well-being, healthcare costs, the value of different education and supportive interventions, and caregivers’ own health behaviors.

Caregivers take on complex roles

Given the work that caregivers do — from complex care coordination and serving as visit companions at medical appointments to giving injections, doing catheterization and wound care — it is extremely important that the caregiver be identified as a care team member and information about their involvement should be documented. It is equally important that a caregiver’s own healthcare provider know of his/her caregiving status.

Fortunately, there are some proactive medical providers who routinely ask patients whether they have a primary caregiver at home and document this information in the patient’s chart. Some even ask whether the patient would like the caregiver to sit in on appointments and be able to obtain the patient’s personal information, initiating the proper authorizations required by their organization’s guidelines so that the caregiver may take a more active role in the patient’s care from the start. But not all medical providers are this proactive, leaving many caregivers – and the loved ones they care for – falling through the cracks.

As we move forward, it is more important than ever that we address this issue. For aging patients, it’s important that patient medical records capture information on who is a family caregiver, and who has one, along with exactly what they do for the patient, their contact numbers, and information release forms signed and documented or scanned into their electronic charts if required under the provider’s policies. This aids the caregiver-practitioner relationship and legally opens the lines of communication for those all-important discussions regarding long-term care, medication management, problems related to the patient’s functional status and ability to remain in his current living situation safely, and other concerns that are best dealt with as a cohesive care team.

Post by Angela Stringfellow

Image by Kurhan on Stock.xchng

5 Responses to “Should Caregivers Be Listed in Patient Medical Records?”

  1. Shauna says:

    Actually, in most cases, HIPAA does not prevent medical providers from sharing information with family and friends involved in care if the patient does not object.

    If you are involved in someone’s care and are having trouble obtaining information from your provider, consider sharing with them “Communicating with a Patient’s Family, Friends, or Others Involved in the Patient’s Care” (see link below.)It is from the Office for Civil Rights, the government agency tasked with overseeing and enforcing HIPAA.

    http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/provider_ffg.pdf

  2. Carol Levine says:

    I appreciate your bringing this issue to your readers’ attention. However, there is one misstatement– a common but inaccurate belief– that should be corrected. HIPAA does not require a written authorization for patient information to be shared with family, other providers involved in care, or any other people the patient designates. The only exception is when the patient objects. Hospitals may have their own rules, but they are not based on HIPAA. For more detail, see my interview published in Aging Today with Leon Rodriguez, head of the Office of Civil Rights at HHS, which is responsible for HIPAA enforcement. It is online at:

    http://www.asaging.org/blog/hipaa-and-patient-privacy-conversation-leon-rodriguez

  3. Suzanne Mintz says:

    Thank you for this article and promoting the concept of documenting family caregivers on medical records. I do need to correct your statement about HiPAA. Written consent is not required by the law. Healthcare professionals often hide behind that statement, but the truth is if a provider believes the patient would like his wife, son, etc to be informed the doctor can go ahead and share the information.

    In addition it appears that Meaningful Use Stage 3 is going to recommend that family caregivers have access to all patient data.

    Once again thank you for promoting family caregiver identification on medical records (FCG ID).

    Suzanne Mintz
    Founder Family Caregiver Advocacy
    Original advocate of FCG ID

    Suzanne Mintz

  4. Angela Stringfellow says:

    Thank you for clarifying those rules, Carol! The post has been updated for clarification.

  5. Angela Stringfellow says:

    Thanks Shauna! That’s a great tool for caregivers to use when navigating with providers who have created their own no-sharing policies in response to HIPAA. Thank you for sharing it with our readers!

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