Key takeaways
Confidentiality is always the priority
Protecting patient privacy builds trust and safety.
Consent comes first in data sharing
Always get clear approval before sharing details.
Public interest requires strong justification
Sharing without consent must meet strict standards.
Assisted dying – legal perspectives
As discussed in our previous content, assisted dying is illegal in the UK and this will remain the case for the foreseeable future. Nevertheless, as the Terminally Ill Adults (End of Life) Bill progresses through parliament, public and media attention on the topic has intensified and we have seen an increase in queries from clinicians seeking guidance.
To assist, Hill Dickinson lawyers have provided insight on the current legal perspectives and mental health perspectives. This article will now explore the current legal position around assisted dying and data sharing.
What if a patient informs me that they intend to end their life at an assisted dying facility abroad?
Our previous article outlines some ‘dos and don’ts’ from clinicians when this topic is raised. From a data sharing angle, firstly clinicians should be mindful of their duty of confidentiality. Medical professionals are under both ethical and legal duties to protect patients’ personal information and this is central to maintaining trust in the relationship.
There are exceptions to this and circumstances where patient information may be shared:
The patient consents, whether implicitly or explicitly for the sake of their own care or for local clinical audit, or explicitly for other purposes.
The patient has given their explicit consent to disclosure for other purposes.
The disclosure is of overall benefit to a patient who lacks the capacity to consent and the disclosure is made in line with the relevant capacity legislation.
The disclosure is required by law, or the disclosure is permitted or has been approved under a statutory process that sets aside the common law duty of confidentiality.
The disclosure can be justified in the public interest.
Therefore, in the first instance, if you consider it would be beneficial to the patient to share their intentions with their family or other agencies, you should request the patient’s explicit consent to do so and keep in mind that their right to privacy should be respected.
What if a patient does not consent to their information being shared?
Where a competent patient does not consent to their information being shared, clinicians should think very carefully before doing so and in most cases the information should not be shared.
As noted above, the basis for breaching confidentiality where a patient does not consent to the disclosure of their personal information would be that doing so would be justified in the public interest. That means that the benefit of sharing the information must clearly outweigh the patient’s right to confidentiality. This is a high threshold.
Some points to weigh up are:
The nature of the information, who it’s being shared with, and the patient’s views
Whether the same outcome could be achieved with less intrusion
The potential harm to the patient (e.g. disengagement from care, distress)
The potential harm to others
The potential benefits of disclosure
The impact on public trust
Ultimately, unless someone else is at risk of harm, the circumstances in which sharing such information in the public interest, against the wishes of a competent patient, will be limited.
Every NHS organisation has a Caldicott Guardian in place who are responsible for upholding eight key principles introduced to ensure patient information is kept confidential and used appropriately (referred to as the Caldicott Principles). If ever unsure, it is recommended that advice is sought from the organisation’s Caldicott Guardian, information governance team, or legal team.
What about a patient that lacks capacity to consent to disclosure of their information?
The first step would be to ensure that the patient’s mental capacity is assessed in the context of the specific decision to share their intention to travel to an assisted dying facility abroad. Capacity is time and decision specific, and the Mental Capacity Act 2005 assumes that every person aged 16 years and over has mental capacity to make their own decisions unless proven otherwise. Therefore, a patient should not be presumed to lack capacity solely because of their age, disability or medical condition, or for considering doing something others may think unwise (amongst other points). This assessment should be clearly recorded in the patients’ records.
If, on assessment, the patient lacks capacity to consent to this disclosure, then the decision to disclose is made in the patient’s best interests. It follows that if the clinical assessment is that it would be of overall benefit to the patient to share their plans with wider agencies or the patient’s family, then this information may be shared. The GMC outlines that in determining a decision about disclosing a patient’s information who lacks capacity you must have regard to the patient’s privacy and dignity and encourage the patient to involved in the disclosure decisions as much as possible.
Additionally, only relevant information should be shared (and not wider healthcare history). Any decision to disclose this information should be documented, including justification for disclosure, in the patient’s records.
How might the position change under the Terminally Ill Adults (End of Life) Bill?
As of June 2025, the Bill is still going through Parliament. If passed, it would create a legal framework for assisted dying in the UK.
The current draft includes requirements for record-keeping, notifications to a Voluntary Assisted Dying Commissioner, and lawful information sharing with key bodies like the CQC and professional regulators. It also makes clear that no one is obliged to assist, which could include sharing information.
If the Bill becomes law, the approach we’ve discussed today would change significantly – but the underlying principles will still be relevant. Keep an eye on our updates for the latest guidance.
