2. HIPAA and Dementia: Balancing Privacy and Beneficence Tia Powell, MD Director, Montefiore Einstein Center for Bioethics

3. Health Privacy and Disclosure of AD Diagnosis Patients may request clinician NOT disclose AD diagnosis to family Common problem Unclear/variable answers What does HIPAA require? Forbid? What is responsibility of clinician? When do families have right to know? When does patient have right to privacy?

4. HIPAA requirements Health Insurance Portability and Accountability Act, 1996 Designed to enhance patient medical privacy Often incorrectly interpreted Used as weapon to avoid health disclosure Disclosure permitted for treatment purposes Disclosure permitted to health care agent acting on patient’s behalf

5. HIPAA and Capacity “Where the individual is incapacitated…covered entities generally may make such uses and disclosures, if in the exercise of their professional judgment, the use or disclosure is determined to be in the best interest of the individual.” Source: US DHHS, “Summary of the HIPAA Privacy Rule,” Office of Civil Rights, May, 2003.

6. Can a patient with AD forbid disclosure to family members? Depends on: – the patient – the family –clinical circumstances Request to withhold diagnosis should be start, not end of conversation

7. Reasons to refuse disclosure Many! Ask the patient! Stigma: viewed as loss of dignity Powerful emotional reaction: –Most feared illness in US Denial Wish not to be a burden Wish not to be controlled Wish to continue with current activities

8. Decision-making capacity in dementia Dementia diagnosis does not prove incapacity Predictable decline in capacity over time Capacity is decision specific Loss of capacity affects many major decisions –Health care –Finances –Social arrangements

9. Capacity Assessment Responsibility of every clinician Readily done during office visit 4 basic components Can the patient: –Understand clearly presented information –Reason with information presented –Apply to personal values, circumstances –Make and communicate decision

10. Case Example: Mr. A WW2 Veteran brought in by family after he disappeared for several days –Family finds Mr A irascible, forgetful –Lost while driving; ended up 4 states away –Quit 40 year poker game over dispute –Denies evidence of fire in kitchen

11. Refusal of disclosure Mr A tells physician, during work-up phase, “If I have Alzheimer’s Disease, don’t you tell my kids. They’re always in my business!”

12. Options and Response Why does Mr A resist including family? –They’ll just try to take my car keys – they were already after me to stop driving and it’s just none of their business –Patient denies any abuse by children –Family present at clinic –Helping with transportation, housework, food

13. Capacity Evaluation Patient needs education and information about AD before he can make reasoned judgment re: disclosure Can he understand information, appropriately presented? Reason based on his values/preferences? Apply to own situation? Make decision?

14. Information from capacity evaluation Mr A concedes memory problems Will not engage in discussion of dementia course and prognosis Sole reason to withhold information is concern re: driving Does express values: Maximize independence – avoid nursing home – prolong time at home –Adult children are “good kids”

15. Result of Capacity Assessment Mr A lacks the capacity to withhold AD diagnosis –Can’t weigh risks/benefits –Choice does not support underlying goals Capacity is decision specific Mr. A can make other choices –Eg assign a health care agent Lack of capacity is not signal to ignore patient preferences

16. Attempt to persuade patient Appropriate persuasion not autonomy violation Emphasize benefits of disclosure –Transparency easier than subterfuge –Dementia is a team sport –Home services prevent hospitalization, nursing home transfer, but need coordination Review liabilities of non-disclosure –Ultimately non-disclosure fails –Prevents planning, expression of preferences Explore additional reasons for refusal

17. If Mr A still declines disclosure? Transparency: I will disclose to your family Respect values/preferences: –Would Mr A prefer to join conversation? –Would he designate a proxy? Build bridge to communication between patient, clinical team and family Present clinical information Bridge to services, supports Build in follow up

18. Documentation of Capacity Evaluation Summary of information and choice presented Describe patient’s understanding of information Reasons for patient’s refusal of recommendation Patient’s medical values and preferences Efforts to minimize intrusion on autonomy: –Transparency re disclosure –Plan to maximize patient’s values –Plan to engage appropriate surrogate

19. Case Example: Mrs B 75 year old woman complaining of memory loss Work-up confirms memory loss, functional decline over 6 months, diagnosis of AD Declines disclosure to daughter

20. Conversation What would be the difficulty in telling your daughter? –Daughter had been living with patient –Daughter with prescription drug abuse –Patient intimidated by behavior of daughter and friends in house –Loss of money and objects from home –Patient asked daughter to leave –Tumultuous departure of daughter 2 mos ago

21. Capacity Evaluation Patient grasps information on dementia Appreciates difficulty of isolation Wishes support network, ongoing care Expresses values, preferences Declines disclosure to daughter Works with clinician to consider alternatives for support, health care surrogate Patient has capacity to decline disclosure

22. Moving Forward Mrs B appoints niece as proxy Works with clinic social worker to access community services: –PACE program –VNS –Patient declines adult protective services

23. Summary HIPAA reminds us to protect privacy Not prevent care Patient refusal of recommendation may trigger capacity evaluation Perform and document evaluation Physician may disclose against request: –When patient lacks capacity for this choice –Persuasion fails –Benefits to patient outweigh burdens

24. Selected References P Appelbaum, Assessment of Patients’ Competence to Consent to Treatment, NEJM, 2007, 357:18. US DHHS, Summary of the HIPAA Privacy Rule, May 2003; http://www.hhs.gov/ocr/privacy/hipaa/understanding/summary/i ndex.html Karlawish J, Moral and Ethical Challenges of Alzheimer’s Disease, Health Affairs, 2014 T. Powell, “Life Imitates Work,” JAMA. 2011;305(6):542-543.