A patient’s wishes about the release or reuse of their records following death is not formally recorded – this needs to change
The events surrounding the death of Savita Halappanavar, in particular the reported struggle between her husband and the Health Service Executive (HSE) over her medical records, have placed the spotlight on the current laws governing the medical records of deceased persons.
Despite claims to the contrary, medical records are not the subject of ownership, at least not in the commonly understood meaning of the term.
In relation to the public healthcare system the HSE is, in effect, a custodian that holds a patient’s medical records for specific purposes.
Certain principles, rights and obligations exist in relation to them, which seek to reconcile the rights and interests of the decedent, the surviving family, medical institutions and staff, and the wider public interest.
Code of practice
The HSE is required to maintain the confidentiality and security of medical records. In line with the current Code of Practice for Healthcare Records Management (2007), in the acute hospital setting, medical records are generally retained for eight years following the death of a patient after which they should be destroyed securely (although some categories of record have different retention periods).
Confidentiality is a time-honoured and fundamental principle of medical ethics, central to the establishment of trust between patients and doctors. A patient’s information and medical records remain confidential even after death.
The principle of doctor-patient confidentiality has also been recognised in law. While alive a patient can also rely on the Data Protection Acts to limit the use and processing of sensitive personal data but this protection ends at death in Ireland.
There are circumstances where information contained in a deceased person’s medical records may be disclosed. The law recognises that the public interest in recording and ascertaining, in a public manner, the cause of a person’s death does outweigh the confidentiality of the doctor-patient relationship.
So, for example, there is a legal requirement to record the cause of death on death certificates in Ireland or, where the cause of death cannot be explained, an inquest, an official public inquiry presided over by a coroner, may be held to establish the facts .
Further situations have been recognised in law where the medical records of a deceased person may be disclosed but these are tightly regulated. Disclosure can be ordered by a court, as happened, in the case of Daniel McAnaspie (HSE -v- McAnaspie IEHC 477) where his next of kin was granted access to his records prepared pursuant to a child care order.
Specific types of inquiry or investigation have authority to lawfully access medical records. This is not always the case and HSE clinical reviews/investigations may require a court order to access relevant files and records.
The most common route for surviving family members or next of kin to access the medical records of a deceased relative is under the Freedom of Information Acts and regulations.
The HSE Code of Practice for Healthcare Records Management recognises that due to the sensitivity of information contained in medical records, and the inability to consult with the deceased patient, “all applications for access to deceased person’s records must be processed under the Freedom of Information Acts”.
Under the Freedom of Information Acts and regulations a spouse, partner or next of kin will only be granted access when the public interest would be better served by granting rather than refusing the request. Ministerial guidance notes, which are incorporated into the regulations, set out factors which a decision maker should take into consideration in reaching such a decision.
The seeming desire behind the scheme is to provide a mechanism for family members, including a spouse and next of kin, to access personal information of a decedent, while providing for refusal in certain circumstances, for example where a decedent would not have consented to the release while alive.
However, without some form of advance directive or prior consent to release, a decision maker must ultimately second-guess the intentions of the decedent with respect to their medical records.
One further right is conferred by the Freedom of Information Acts and regulations. This is the right to apply for the amendment of personal information held by public bodies, including the HSE, on the grounds that it is incomplete, incorrect or misleading. The Information Commissioner has in the past (Case no. 98158) held that information is incomplete where it lacks requisite details which might put a different complexion on the information.
A request for amendment of an incomplete record will only be granted to a spouse or next of kin when, having regard to all the circumstances, the public interest would on balance be better served by granting than by refusing to grant the request.
As with access requests, a request for amendment must be made to the HSE in the first instance; if refused this can be appealed to the Information Commissioner whose decisions are reviewable by the High Court.
Assisting decision makers
While far from perfect the current system does provide surviving family members with a scheme to access or amend the medical records of deceased relatives. Unfortunately within the overall information governance model for medical records generally the intentions or wishes of a patient regarding the release or reuse of their records following death are not formally recorded. Recording such information as part of a patient’s medical records would greatly assist decision makers when faced with difficult access requests.
This does not mean a patient should have a veto over the reuse or disclosure of their medical records following death. As is clear, the public interest will in certain circumstances require the release of records in order to ascertain the cause of death or to ensure health services can be audited and assessed as part of ongoing efforts to ensure accountability and maintain public trust in their services.
Ultimately, recording the intentions or wishes of a patient regarding the reuse of their records following death, would be advisable, as it would ensure that a decedent’s interests are recognised when adjudicating on access requests even where no surviving family exists to intervene.
Damien McCallig is a PhD candidate at the School of Law at NUI Galway and an Irish Research Council scholar