It has always been difficult to make determinations regarding what information can be provided to a family member once a patient or long-term care resident has passed away. Items such as a Durable Power of Attorney or Healthcare Power of Attorney expire at the time that the patient dies and who is the patient representative can be an emotionally complex question. The state based rules on who can access information can be complicated, particularly when there are competing claims on multiple claimants.
In general, in Iowa and pursuant to the HIPAA rules, the control of the information rests with the primary personal representative of the decedent. In other words, when a person passes away, there are statutory constructs about who owns or has the right to release the records. The first of these is the executor or administrator of the estate. The executor is the person appropriately appointed by the Court. Just saying you are an Executor doesn’t make you the Executor anymore than saying you are the Easter Bunny makes you a bunny. If there is no Will or Estate or in the gap that frequently occurs between a death and beginning the probate process, under Iowa laws we typically shift to kinship assessments. A living and competent spouse of the decedent is the first line where information can be released or consent can be obtained. If there is no living and competent spouse, the adult children of the decedent would have equal rights to the records. Third in line, would be the parents of the decedent. Fourth, the siblings and if such closer relatives are not available an assessment can be made in regard to more distant relationships. These are exclusive determinations. In other words, if a spouse is available, no one else has a specific legal right to consent to the release or use of the record. This is true in circumstances even where the spouses are estranged and may not have seen each other in years. There may even be a new partner, but unless there is a legal document naming the new partner executor, then the prior marital relationship would control.
HHS recognizes that it received a significant number of comments regarding the difficulty of providing information to others that may have been involved in the deceased patient’s care. HHS therefore amended Section 164.510(B) which permits the disclosure of the decedent’s protected health information to family members and others who were “involved in the care or payment for care of the decedent prior to death”. This release would be possible unless providing such information is inconsistent with the decedent’s express wishes. In other words, if the patient or the patient’s executor says information may not be released to a certain person, you cannot release that information even if there had been a prior and existing relationship.
The intent of this change was to ease the burden on facilities and others so that basic information could be provided to family members regarding the circumstances surrounding the death of a patient/resident without violating HIPAA. NOTE: disclosures are limited to protected health information which is relevant to the person’s involvement in the individual’s healthcare or payment for healthcare. A minimum necessary standard applies and relevancy determinations can be difficult, particularly with someone who has had a long-term or chronic illness and multiple family members have been involved in care at different times. Careful application of the minimum necessary standard will be important here. Another issue will be education of family members as to what information can be obtained and who may access such information. Family members do not always agree and a clear delineation of these legal issues may be necessary in helping family members to avoid internal problems in the provision of information.
Problems can arise regarding how you determine whether or not someone was involved in an individual’s care. HHS refers back to its prior guidance as assistance in this matter. Note that the term family member is defined at 160.103 and includes relatives of the first, second, third or fourth degree and treats relatives by marriage or adoption in the same manner as “blood relatives.”
There are also other changes contained to the rules regarding a decedent’s information. Previously, HHS had proposed that there be fifty year limit on the privacy requirements for health information. In other words, fifty years after a person died, his/her information would be open to researchers and others who want to access the data without obtaining consent. 164.510(b) now implements this rule placing a fifty year deadline on the protections for a decedent’s information. Certain state continuing protections may apply past the fifty year deadline particularly in relationship to certain “highly confidential” information such as psychotherapy notes. HHS is clear in its comments and statements to the rule that the fifty year expiration of the privacy requirements is not a fifty year requirement to maintain records. This should not affect an institutions’ record destruction policies in any way unless you are the type of institution that has been keeping records for 100 years “just in case.” You now might be able to clean out a few warehouses and destroy those records at 51 years. This change in the rule should benefit researchers, genealogists, historians and family members who are seeking information about ancestors regarding anything from chronic illnesses to adoptions.