The following case is fictitious but based on the types of calls we receive to the MDU advice line.
The scene
A GP called the MDU advice line after receiving an unusual request from a patient. Three months before, the patient had lost his sister (also a patient) after a lengthy illness. He had been her primary carer and been present at all her GP appointments during her period of ill health.
While seeing the GP for a minor physical ailment, the patient had asked if it would be possible to have a copy of his sister's ECG that he had brought her to the appointment for. When asked why, he clarified that he wished to get part of the trace etched on a pendant in memory of his sister, alongside an engraving of her signature. The GP was unsure about the confidentiality aspects of this, so told the patient he would seek advice and get back to him.
MDU advice
It can be complicated for clinicians to know how to proceed when asked to disclose parts of a deceased patient's records. Responding appropriately to these requests is governed by both legislation and GMC guidance.
Legal considerations
The first point to highlight is that data protection legislation doesn't apply to deceased individuals, and therefore the correct legislation to consider is the Access to Health Records Act 1990 for England, Scotland and Wales, or the Access to Health Records (Northern Ireland) Order 1993 in Northern Ireland.
Under this legislation, after a person has died, their personal representative, executor or administrator, or anyone having a claim resulting from the death, has the right to apply for access to health records for the deceased made after 1 November 1991.
If the deceased person had indicated they didn't want information to be disclosed, or the record contains information that the deceased person expected to remain confidential, then this should be respected. The record holder also has the right to deny or restrict access if it's felt that disclosure would cause serious harm to the health of any other person, or contains third party information.
Another point to highlight is that case law has clarified one aspect of responding to requests for deceased patients' records. The case of Re AB [2020] EWHC 691 (Fam) confirmed that the personal representative of a deceased patient has a right of access to all the deceased's records, not just those relevant to any claim that might arise from the patient's death.
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Ethical considerations
The GMC's guidance, 'Confidentiality: good practice in handling patient information' (2017), clarifies that the duty of confidentiality continues after a patient has died, and lists the situations when relevant information about a patient who has died must be disclosed, such as when requested by a coroner or required by law.
Paragraphs 136 and 137 of the GMC guidance outline what to consider in other circumstances, like the one described in our fictional scenario. These include:
- whether disclosing information is likely to cause distress to, or be of benefit to, the patient's partner or family
- whether the disclosure will also disclose information about a third party
- if the information can be anonymised or de-identified
- the purpose of the disclosure.
The outcome
On reviewing the deceased patient's notes, the GP could see no mention of an objection to disclosure of her records under the AHRA.
With MDU advice, the GP reverted to the patient to check if he was the personal representative for his sister's estate, on the basis that if he was, he would have a right of access to all her records, subject to the exemptions mentioned above.
Unfortunately, his sister had died intestate - that is, without a will - and her administrator was yet to be appointed. However, as their parents had died and the sister was single, the brother was the only person applying for the letters of administration, which he hoped would be granted within the next few months.
Because the brother was not yet the administrator and the request was unrelated to a claim, the GP next considered the ethical guidance.
On reviewing the records, it was clear that the brother had been his sister's main carer in the last few months of her life. It was noted in at least one consultation that she was very happy for her brother to liaise with the practice on her behalf and be updated about her medical information, and that he had been present at the ECG appointment. On balance, the GP felt the sister would not have objected to the brother having a copy of her ECG.
The GP also considered the benefit to the deceased patient's close relative; the purpose of the disclosure being as a reminder of the patient, and the fact that the required information could easily be anonymised.
The GP did wonder about the possibility of waiting until the brother could confirm he had been appointed administrator, but on weighing up all the information, the GP felt able to justify the very limited disclosure.