Confidentiality in Healthcare

1. Confidentiality in Healthcare Ethics & Law Sean McArt BSc, MSc, H Dip. ‘The things that most people want to know about are usually none of their business’ George B. Shaw

2. Session Objectives • What is confidentiality? /Why respect confidentiality? • The law • Is confidentiality absolute/Exceptions to confidentiality/Breeching confidentiality • Confidentiality –Death, incapacity and minors • Confidentiality - Palliative care case study

3. Confidentiality • ‘Most people consider health information to be highly personal and, therefore, need to be confident that their privacy will be protected whenever they use a health service ... Clear and open communication between the health service provider and health consumer is integral to good privacy’ Radwanshi (2001) • Generally, if institution/person ‘A’ holds information about person ‘B’ then person ‘C’ cannot obtain that information in the normal course of events without the consent of person ‘B’

4. What information is confidential? All identifiable patient information, whether written, computerised, visual or audio recorded or simply held in the memory of health professionals, is subject to the duty of confidentiality. It covers: • Any clinical information about an individual’s diagnosis or treatment • A picture, photograph, video, audiotape or other images of the patient • Who the patient’s doctor is and what clinics patients attend and when • Anything else that may be used to identify patients directly or indirectly. (BMA 2008)

5. When does a matter become confidential? Broadly speaking the courts have recognised three elements to deciding whether a matter is confidential: • The nature of the information • Nature of the encounter • Nature of any disclosure

6. Why respect confidentiality? • Trust is an important aspect between patients and healthcare professionals. Patients without fear of a breech of confidentiality should be able to communicate symptoms that often they may feel are embarrassing, stigmatising, or indeed trivial • Without this trusting relationship patients may not divulge information which may make treating them impossible • Patients may not seek medical attention at all • Has important role in a professional patient relationship establishing a sense of security, freedom of action and self respect for patients

7. http://www.dataprotection.ie/viewdoc.asp?DocID=225 (2003)

8. Why respect confidentiality?

9. Why respect confidentiality? • Hospital policy • Contained within each member of staff contract of employment • Can result in disciplinary action

10. Why respect confidentiality? • Professional Code of Conduct – An Bord Altranais ‘Information regarding a patient’s history, treatment and state of health is privileged and confidential...’ ‘Professional judgement and responsibility should be exercised in the sharing of such information with professional colleagues. The confidentiality of patient’s records must be safeguarded.’ (http://www.nursingboard.ie/en/publications_current.aspx?page=4 )

11. The Irish Medical Council – Guide to Professional Conduct and Ethics • ‘Confidentiality is a fundamental principle of medical ethics and is central to the trust between patients and doctors’ • ‘Patient information remains confidential even after death’ • ‘You should ensure as far as possible that the patient’s privacy is maintained at all times and that accidental disclosure of confidential information does not occur’ • ‘You should ensure as far as possible that confidential information in relation to patients is maintained securely and in compliance with data protection legislation’.

12. Why respect confidentiality? The Data Protection Commissioner Criminal sanctions • Under section 31 of the Acts, the maximum fine on summary conviction of such an offence is set at €3,000. On convictions on indictment, the maximum penalty is a fine of €100,000. Civil sanctions Where a person suffers damage as a result of a failure by a data controller or data processor to meet their data protection obligations, then the data controller or data processor may be subject to civil sanctions by the person affected. Ordinarily, the "injury" suffered by a data subject will be damage to his or her reputation, possible financial loss and mental distress.

13. Confidentiality Ethics and Law

14. Confidentiality in Law • Constitution • Universal Declaration on Human Rights 1948 • European Convention on Human Rights 1950, 2003 • Council of Europe Convention on Data Protection 1981 • Convention on Human Rights & Biomedicine 1997 • Data Protection Act 1988 & 2003 • Freedom of Information Act 1997-2003 • Convention on Human Rights Act 2003 • Common Law • Lisbon Treaty

15. Constitution • Article 40.3.1 protects the ‘personal rights’ of each citizen • These personal rights include implied rights • Implied right to privacy first outlined in McGee v. Attorney-General [1974] I.R.284 ‘State to protect & vindicate the citizen’s right to constitutional privacy’

16. European Convention on Human Rights 1950, 2003 • The act under article 8 guarantees the right to respect for private and family life. This quite clearly includes the right to confidentiality stating ‘Protection of personal data, not least medical data, is a fundamental importance to a person’s enjoyment of his or her right to respect for private and family life ... Respecting the confidentiality of health data is a vital principle in the legal systems of all the contracting parties to the convention’

17. The Data Protection Act • Data Protection Act 1988 – • Computerised personal information only • Data Protection Act 2003 • Extended the data protection remit to manual files • Strengthens the privacy rights of individuals • Adds obligations on data controllers to fairly process personal information • Gives power to the Data Protection Commissioner,

18. The Freedom of Information Act 1997 & 2003 Gives individuals legal rights to: • Access personal and non-personal records • Have personal details amended or deleted where information is incorrect, incomplete or misleading • Seek reasons for decisions that affect them

19. Is the duty of confidentiality absolute?

20. Is confidentiality an absolute right? • In Ireland confidentiality or privacy is recognised by the courts as a right, but not an absolute right • The belief that confidentiality is not absolute is also the model which our two closest neighbours the U.S. and the U.K. subscribe to • In France and Belgium confidentiality is considered as an absolute requirement to protect the patient’s interests

21. The exceptions to confidentiality There are four circumstances where exceptions may be justified in the absence of permission from the patient: • (1) When ordered by a Judge in a Court of Law, or by a Tribunal established by an Act of the Oireachtas. • (2) When necessary to protect the interests of the patient. • (3) When necessary to protect the welfare of society. • (4) When necessary to safeguard the welfare of another individual or patient. (https://medicalcouncil.ie/Media-Centre/Publications/Older/Ethical%20Guide%202004.pdf )

22. When necessary to safeguard the welfare of another individual or patient Tarasoff v. Regents of the University of California • Prosenjit Poddar a university student from India studying in the U.S. attended folk dancing classes with Tatiana Tarasoff and subsequently kissed her on New years eve. • Tatiana rebuffed his advances sending him into an emotional crisis, in which he became depressed - neglecting his appearance, studies and health • Owing to this he was placed under the care of a psychiatrist Dr. Gold

23. Dr. Gold in turn referred him as an out-patient to a staff psychologist named Dr. Moore. Following several sessions Poddar outlined his intention to kill Tatiana, on her return from vacation • Shortly after the session, Dr. Moore informed the campus police to detain Poddar, at which time he would sign a seventy-two hour detaining order, he also outlined this in a letter to the head of the campus police. • The campus police on coming into contact with Poddar decided on their own initiative to release him. Simultaneously Dr. Powelson the director of psychiatry learned of Dr. Moore’s actions and ordered him to intercept the letter to the campus police and destroy it along with his therapist’s notes and take no further action against Prosenjit. On the 27th of October Poddar killed Tatiana with the use of a knife as she ran away from him

24. When necessary to protect the welfare of society • W v. Edgell and Others [1990] 1 All ER 835 CA England • Infectious Disease (Amendment) Regulations 2000 • Gunshot wounds, where one may inform the authorities under section nine of the Data Protection Act (1988) • Road Traffic Law

25. When necessary to protect the interests of the patient • Children or adults who are subject to abuse - Child Care Act 1991, furnishes the Garda Siochana with the power to evoke an emergency care order if they believe there is an immediate and serious risk to the health or welfare of a child • The protection of an individual from themselves, in cases of suicide could also be broadly placed in this category; this is where the limits of this exception become vague

26. When ordered by a Judge in a Court of Law • Discovery – must be done by court order • Discovery is related to relevant issues involved in the court proceedings only • ‘The duty cast on every good citizen to assist in the investigation of serious crime’ Hunter v. Mann [1974] QB 767

28. Breeching Confidentiality • If the individual consents • If required by statute • Infectious disease • Child protection • Road traffic law • Eligibility to health services • The Public Interest • Preventing harm to others • Exposing, detecting or preventing crime • In litigation • Traditionally, no medical research exception has been recognised • Is disclosure for relevant and sufficient reason and proportionate? • A healthcare professional MUST be able to justify any breech of confidentiality

29. Confidentiality for those who cannot consent?

30. Who has a right to know your healthcare information? • If you are >18 • Are fully competent (or are competent to understand your medical information in order to make a decision) • And are alive • Only you and the people you authorise to share your private information with have a right to view your information (relatives of a competent adult do not).

31. Groups • Incapacity • Death • Minor

32. Incapacity • Where an individual cannot; comprehend or retain treatment information, believe it and weigh it in the balance to arrive at a choice then they are considered unable to consent to that treatment Re C (adult refusal of medical treatment) [1994] 1 All ER 819 • If a doctor decides to breach confidentiality on the ‘best interest’ argument, first they must weigh the possible harms against the benefits, second, they must be prepared to justify their decision and third if unsure they should consult experienced colleges General Medical Council. Confidentiality: protecting and providing information. http://www.gmc-uk.org/guidance/current/library/confidentiality.asp

33. Death • Declaration of Geneva – ‘respect for the secrets confided... even after the patient has died’ • General Medical Council – ‘extends after death’ • Morally an individual’s confidentiality is still considered to require respect • Legally -confidence is prima facie a personal matter thus the legal duty ends with the death of a patient • Death certificate is a public document • Medical records can be accessed if certain criteria are met under the Freedom of Information Act by their spouses or next of kin

34. Minors • Unwanted parental intrusion to confidentiality can result in minors loosing trust in healthcare providers and move away from health care • Gillick competency has not been shown by any Irish case law to exist

35. Minors • For those aged between sixteen and eighteen, the Non-Fatal Offences Against the Person Act (1997), allows consent to surgical, medical or dental treatments (this act does not allow them to decline treatment) • The Child Care Act (1991) ‘Insofar as practicable, give due consideration, having regard to his age and understanding, to the wishes of the child’. (Child Care Act 1991) Law Reform Commission in Ireland have suggested that it is the prevailing belief in Irish legal opinion that under 16’s have no personal power to consent to medical treatment

36. Case ‘Against all the odds, and despite being referred to a hospice, Collette showed signs of recovering from bowel cancer. After several months, the consultant decided that Collette was no longer terminally ill, although he could not be certain that she would not become ill again in the future. Accordingly, he felt she no longer required the extensive support supplied by the hospice and discharged her. Collette was very upset by this, partly because she did not want to loose her terminally ill status, which had generated her more attention from her family than she had become accustomed to in the past. The hospice staff were not unsympathetic. They had promised that they would not abandon her and would care for her until she died. The staff also widely believed that her family had rather neglected her previously. Because they did not wish to let Collette down, she was given radically reduced honorary status as an out-patient. For instance she still attended social events and had her hair set by the hair dresser who donated some of her spare time to the hospice. It quickly became obvious that Collette’s family did not realise that she was no longer thought to be terminally ill. The nurse manager attempted to talk to Collette about this, but she was politely and firmly told to mind her own business.’ (Webb 2005)

37. How can healthcare providers insure confidentiality is maintained • Discretion in general conversations • ‘New technology’: Facebook, Twitter • Online posting of unprofessional content (Katherine C. Chretien, et al. JAMA. 2009;302(12):1309-1315 Oct, 2009) • Examining how we talk to patients • Out-side work • With Non-clinical personnel:(confidentiality agreement) • How do we ‘carry’ data? • Unsecured laptops • USB keys • Is data anonymised where possible • When information is shared – every party must be aware of his/her obligation of confidentiality • Seek patient consent as early as is reasonably possible

38. Summary • Confidentiality is VITAL in healthcare – But is not always an absolute right • There are 4 exceptions defined by the Irish medical council • A healthcare professional MUST be able to stand over any breech of confidentiality and it should be a last resort • Duties to inform authorities in certain cases (Child abuse, elderly abuse, public interest) – where danger exists, should only be done after careful consideration • All competent persons over 18 have the right to confidentiality- for all other persons healthcare providers must act in the patients best interests

39. Thank you Questions?