Death Duties and Confidentiality
There is a saying that three can keep a secret, if two of them are dead.
An interesting topic came up in the States the other day. Deputy Hilton asked Senator Andrew Green, Minister for Health and Social Services regarding the timescale for medical records of the deceased to be released to the next of kin:
“Would the Minister advise whether medical records of the deceased are released to their next of kin within 40 days following a request, and if not what is the usual timescale?”
His reply: “When medical records of the deceased patient are to be released to the next of kin my department aims to do this as soon as possible and ideally within 40 days. The department usually meets this timescale but sometimes it takes longer to process the records and it can vary very much on the individual cases.”
Deputy J.A. Hilton: “Can the Minister tell the Assembly whether there are any circumstances in which the department will not release medical records to next of kin?”
Senator A.K.F. Green: “Even after death we have a duty of confidentiality to the patient and if it is known or believed that the patient would not have wanted their information shared we have a duty to protect that information. The department has no legal obligation to disclose the records of deceased people.”
Deputy J.A. Hilton: “The Minister has just responded that if the department believes that the deceased would not want their records released to their next of kin then they would not do so. Can the Minister tell me who has the authority to adjudicate on a request and is there a right of an appeal?”
Senator A.K.F. Green: “I am not sure that this is absolutely covered by the Data Protection Law because I have been advised that the Data Protection Law applies only to those patients that are still living. I think the best thing I can say to the Deputy, if she has a particular case in mind if she would like to come and discuss it with me I will look into the circumstances and try and help.”
Deputy J.A. Hilton: “Obviously I do have a particular case in mind, and the Minister will be aware of that particular case and it has been extremely difficult for the next of kin to get the information that they require. So the question I would like to ask is: how can a next of kin hold accountable a government department whose actions it is believed to have contributed to a premature death when they refuse to release medical records. It is wrong, it is unacceptable and it is grossly unfair on the family members concerned. So how does an individual hold government departments accountable?”
Senator A.K.F. Green: “As I said, it depends on the complexity of the case, it depends on the records and what is in there regarding sharing it after the person is deceased, and a whole host of different matters. It is not appropriate for me to try and second guess the case but my offer is there, if the Deputy would like to come and talk to the department we will see what we can do to help. “
The Senator is right, Data Protection only applies to living people. But I was not aware that there are general medical ethics about preserving a right of confidentiality after death.
The British Medical Association (BMA) says that: “The ethical obligation to respect a patient’s confidentiality extends beyond death. The Information Tribunal in England and Wales has also held that a duty of confidence attaches to the medical records of the deceased under section 41 of the Freedom of Information Act. The Freedom of Information Act in Scotland contains an exemption to the disclosure of medical records of deceased patients. However, this duty of confidentiality needs to be balanced with other considerations, such as the interests of justice and of people close to the deceased person. Health professionals should therefore counsel their patients about the possibility of disclosure after death and solicit views about disclosure where it is obvious that there may be some sensitivity. Such discussions should be recorded in the records.”
They also note that unless the patient has prior to their death requested confidentiality, “a patient’s personal representative and any other person who may have a claim arising out of the patient’s death has a right of access to information in the deceased person’s records directly relevant to a claim. It is the BMA’s opinion that under section 5(4) of the Access to Health Records Act, no information which is not directly relevant to a claim should be disclosed to either the personal representative or any other person who may have a claim arising out of the patient’s death.”
The same applies in the USA: “Under federal law, the confidentiality of patient health information generally continues after the patient's death. The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) “privacy rule” generally prohibits health care providers and other covered entities from disclosing a decedent's protected health information to anyone other than the decedent's personal representative. The personal representative could then choose to keep the information confidential.”
But of course when the medical professional are themselves deciding on special circumstances, and there is a question mark hanging over them about medical staff being contributory by actions to the patient's death, then it seems there is no court of appeal, which surely cannot be right. The records may contain significant information about dosage of medication, for example.
There could also be other reasons for needing the information. In “Role of next of kin in accessing health records of deceased relatives” (BMJ 2004;328:952), Anneke M Lucassen, Michael Parker, and Robert Wheeler ask the question:
“When potential benefits outweigh harms should clinical geneticists be given access to medical records of dead patients without relatives' consent?”
They note that the term “next of kin” is problematic: “next of kin has no legal standing in relation to medical management. Although the term was originally an entity of Roman law devised to apportion property between male relatives of a family, it became irrelevant in Britain after the Administration of Estates Act 1925, which established a different convention for transferring property after death.”
Any lawyers available to advise on what the term means in Jersey law?
“Since then, next of kin has often continued to be incorrectly treated in the medical setting as if it were a legal entity. Hospital records, for example, invariably document the name of the patient's next of kin. Although the term can have a role in the allocation of property rights, those identified as having such rights do not thereby acquire rights in relation to medical decisions. It is, for example, well established that in the case of incapacitated patients, someone identified as next of kin in relation to property has no legal right to consent to or refuse treatment on behalf of the patient”
And they give an illustration of just how difficult decisions can be:
“Anne Cole is 38 years old and has a family history of cancer. Her mother died of breast cancer at the age of 42 and her maternal grandmother developed breast cancer in her late 40s. Her maternal aunt died three years ago from an abdominal malignancy, aged 56. Ms Cole wants to know whether she is at increased risk of developing breast cancer and what measures she can take to prevent it or improve her prognosis should she develop it.”
“In the case history above, the information requested concerns the precise nature of the abdominal malignancy of Ms Cole's aunt. The benefit of this information is that it would give Ms Cole a clearer idea of her risk of cancer and thus a clearer idea of what surveillance or prophylactic options would be appropriate. The risk of harm (to the memory of the aunt) is that information held within the histology report might be particularly sensitive—for example, if the malignancy was AIDS related and the aunt had not wanted her family to know about this.”
They conclude that the benefits to the living should usually outweigh the privacy of the dead, because such information could be significant is preventing another’s death:
“Clearly, clinicians will have to assess the harms and benefits of each case to decide an appropriate course of action. This is a balancing exercise with which most clinicians will be familiar. We believe, however, that in many cases, if not most, the balance ought to fall in favour of disclosure. We support recent recommendations that doctors should be able to access information about a dead person if it is important for the prediction of disease in family members; there is no good reason to believe that the person had or would have objected to such access; accessing the information is not against the person's interests; and the policy is openly disclosed”
So there are two areas where privacy might be waived. One is where medical practioniers themselves may have contributed to a relatives death, and clearly in this instance, they should not be responsible for taking a decision not to release patient records. The other is where genetic information could prove invaluable for preventing risk of a relative dying, and in this case, there should almost always be a presumption in favour of the living.
It’s an interesting subject, and one which I was completely ignorant of until I read Deputy Hilton’s question, and decided to explore the matter further.
There is a saying that three can keep a secret, if two of them are dead.
An interesting topic came up in the States the other day. Deputy Hilton asked Senator Andrew Green, Minister for Health and Social Services regarding the timescale for medical records of the deceased to be released to the next of kin:
“Would the Minister advise whether medical records of the deceased are released to their next of kin within 40 days following a request, and if not what is the usual timescale?”
His reply: “When medical records of the deceased patient are to be released to the next of kin my department aims to do this as soon as possible and ideally within 40 days. The department usually meets this timescale but sometimes it takes longer to process the records and it can vary very much on the individual cases.”
Deputy J.A. Hilton: “Can the Minister tell the Assembly whether there are any circumstances in which the department will not release medical records to next of kin?”
Senator A.K.F. Green: “Even after death we have a duty of confidentiality to the patient and if it is known or believed that the patient would not have wanted their information shared we have a duty to protect that information. The department has no legal obligation to disclose the records of deceased people.”
Deputy J.A. Hilton: “The Minister has just responded that if the department believes that the deceased would not want their records released to their next of kin then they would not do so. Can the Minister tell me who has the authority to adjudicate on a request and is there a right of an appeal?”
Senator A.K.F. Green: “I am not sure that this is absolutely covered by the Data Protection Law because I have been advised that the Data Protection Law applies only to those patients that are still living. I think the best thing I can say to the Deputy, if she has a particular case in mind if she would like to come and discuss it with me I will look into the circumstances and try and help.”
Deputy J.A. Hilton: “Obviously I do have a particular case in mind, and the Minister will be aware of that particular case and it has been extremely difficult for the next of kin to get the information that they require. So the question I would like to ask is: how can a next of kin hold accountable a government department whose actions it is believed to have contributed to a premature death when they refuse to release medical records. It is wrong, it is unacceptable and it is grossly unfair on the family members concerned. So how does an individual hold government departments accountable?”
Senator A.K.F. Green: “As I said, it depends on the complexity of the case, it depends on the records and what is in there regarding sharing it after the person is deceased, and a whole host of different matters. It is not appropriate for me to try and second guess the case but my offer is there, if the Deputy would like to come and talk to the department we will see what we can do to help. “
The Senator is right, Data Protection only applies to living people. But I was not aware that there are general medical ethics about preserving a right of confidentiality after death.
The British Medical Association (BMA) says that: “The ethical obligation to respect a patient’s confidentiality extends beyond death. The Information Tribunal in England and Wales has also held that a duty of confidence attaches to the medical records of the deceased under section 41 of the Freedom of Information Act. The Freedom of Information Act in Scotland contains an exemption to the disclosure of medical records of deceased patients. However, this duty of confidentiality needs to be balanced with other considerations, such as the interests of justice and of people close to the deceased person. Health professionals should therefore counsel their patients about the possibility of disclosure after death and solicit views about disclosure where it is obvious that there may be some sensitivity. Such discussions should be recorded in the records.”
They also note that unless the patient has prior to their death requested confidentiality, “a patient’s personal representative and any other person who may have a claim arising out of the patient’s death has a right of access to information in the deceased person’s records directly relevant to a claim. It is the BMA’s opinion that under section 5(4) of the Access to Health Records Act, no information which is not directly relevant to a claim should be disclosed to either the personal representative or any other person who may have a claim arising out of the patient’s death.”
The same applies in the USA: “Under federal law, the confidentiality of patient health information generally continues after the patient's death. The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) “privacy rule” generally prohibits health care providers and other covered entities from disclosing a decedent's protected health information to anyone other than the decedent's personal representative. The personal representative could then choose to keep the information confidential.”
But of course when the medical professional are themselves deciding on special circumstances, and there is a question mark hanging over them about medical staff being contributory by actions to the patient's death, then it seems there is no court of appeal, which surely cannot be right. The records may contain significant information about dosage of medication, for example.
There could also be other reasons for needing the information. In “Role of next of kin in accessing health records of deceased relatives” (BMJ 2004;328:952), Anneke M Lucassen, Michael Parker, and Robert Wheeler ask the question:
“When potential benefits outweigh harms should clinical geneticists be given access to medical records of dead patients without relatives' consent?”
They note that the term “next of kin” is problematic: “next of kin has no legal standing in relation to medical management. Although the term was originally an entity of Roman law devised to apportion property between male relatives of a family, it became irrelevant in Britain after the Administration of Estates Act 1925, which established a different convention for transferring property after death.”
Any lawyers available to advise on what the term means in Jersey law?
“Since then, next of kin has often continued to be incorrectly treated in the medical setting as if it were a legal entity. Hospital records, for example, invariably document the name of the patient's next of kin. Although the term can have a role in the allocation of property rights, those identified as having such rights do not thereby acquire rights in relation to medical decisions. It is, for example, well established that in the case of incapacitated patients, someone identified as next of kin in relation to property has no legal right to consent to or refuse treatment on behalf of the patient”
And they give an illustration of just how difficult decisions can be:
“Anne Cole is 38 years old and has a family history of cancer. Her mother died of breast cancer at the age of 42 and her maternal grandmother developed breast cancer in her late 40s. Her maternal aunt died three years ago from an abdominal malignancy, aged 56. Ms Cole wants to know whether she is at increased risk of developing breast cancer and what measures she can take to prevent it or improve her prognosis should she develop it.”
“In the case history above, the information requested concerns the precise nature of the abdominal malignancy of Ms Cole's aunt. The benefit of this information is that it would give Ms Cole a clearer idea of her risk of cancer and thus a clearer idea of what surveillance or prophylactic options would be appropriate. The risk of harm (to the memory of the aunt) is that information held within the histology report might be particularly sensitive—for example, if the malignancy was AIDS related and the aunt had not wanted her family to know about this.”
They conclude that the benefits to the living should usually outweigh the privacy of the dead, because such information could be significant is preventing another’s death:
“Clearly, clinicians will have to assess the harms and benefits of each case to decide an appropriate course of action. This is a balancing exercise with which most clinicians will be familiar. We believe, however, that in many cases, if not most, the balance ought to fall in favour of disclosure. We support recent recommendations that doctors should be able to access information about a dead person if it is important for the prediction of disease in family members; there is no good reason to believe that the person had or would have objected to such access; accessing the information is not against the person's interests; and the policy is openly disclosed”
So there are two areas where privacy might be waived. One is where medical practioniers themselves may have contributed to a relatives death, and clearly in this instance, they should not be responsible for taking a decision not to release patient records. The other is where genetic information could prove invaluable for preventing risk of a relative dying, and in this case, there should almost always be a presumption in favour of the living.
It’s an interesting subject, and one which I was completely ignorant of until I read Deputy Hilton’s question, and decided to explore the matter further.
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