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HIPAA and Dementia: Balancing Privacy and BeneficenceTia Powell, MD

Director, Montefiore EinsteinCenter for Bioethics

0Health Privacy and Disclosure of AD Diagnosis

Patients may request clinician NOT disclose AD diagnosis to familyCommon problemUnclear/variable answersWhat does HIPAA require? Forbid? What is responsibility of clinician? When do families have right to know? When does patient have right to privacy?

1HIPAA requirementsHealth Insurance Portability and Accountability Act, 1996Designed to enhance patient medical privacyOften incorrectly interpretedUsed as weapon to avoid health disclosureDisclosure permitted for treatment purposesDisclosure permitted to health care agent acting on patients behalf

HIPAA and CapacityWhere the individual is incapacitatedcovered 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.

Can a patient with AD forbid disclosure to family members? Depends on: the patient the familyclinical circumstancesRequest to withhold diagnosis should be start, not end of conversation

Reasons to refuse disclosureMany! Ask the patient!Stigma: viewed as loss of dignityPowerful emotional reaction:Most feared illness in USDenialWish not to be a burdenWish not to be controlledWish to continue with current activities

Refer to existing materials on making dx5Decision-making capacity in dementiaDementia diagnosis does not prove incapacityPredictable decline in capacity over timeCapacity is decision specificLoss of capacity affects many major decisionsHealth careFinancesSocial arrangements

Capacity AssessmentResponsibility of every clinicianReadily done during office visit4 basic componentsCan the patient: Understand clearly presented informationReason with information presentedApply to personal values, circumstancesMake and communicate decision

Case Example: Mr. AWW2 Veteran brought in by family after he disappeared for several days

Family finds Mr A irascible, forgetfulLost while driving; ended up 4 states awayQuit 40 year poker game over disputeDenies evidence of fire in kitchen

Refusal of disclosureMr A tells physician, during work-up phase,

If I have Alzheimers Disease, dont you tell my kids. Theyre always in my business!

Options and ResponseWhy does Mr A resist including family?

Theyll just try to take my car keys they were already after me to stop driving and its just none of their businessPatient denies any abuse by childrenFamily present at clinicHelping with transportation, housework, food

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

Information from capacity evaluationMr A concedes memory problemsWill not engage in discussion of dementia course and prognosisSole reason to withhold information is concern re: drivingDoes express values: Maximize independence avoid nursing home prolong time at homeAdult children are good kids

Result of Capacity AssessmentMr A lacks the capacity to withhold AD diagnosisCant weigh risks/benefitsChoice does not support underlying goalsCapacity is decision specificMr. A can make other choices Eg assign a health care agentLack of capacity is not signal to ignore patient preferences

Attempt to persuade patientAppropriate persuasion not autonomy violationEmphasize benefits of disclosureTransparency easier than subterfugeDementia is a team sportHome services prevent hospitalization, nursing home transfer, but need coordinationReview liabilities of non-disclosureUltimately non-disclosure failsPrevents planning, expression of preferencesExplore additional reasons for refusal

If Mr A still declines disclosure?Transparency: I will disclose to your familyRespect values/preferences: Would Mr A prefer to join conversation?Would he designate a proxy? Build bridge to communication between patient, clinical team and familyPresent clinical informationBridge to services, supportsBuild in follow up

Documentation of Capacity EvaluationSummary of information and choice presentedDescribe patients understanding of informationReasons for patients refusal of recommendationPatients medical values and preferencesEfforts to minimize intrusion on autonomy:Transparency re disclosurePlan to maximize patients valuesPlan to engage appropriate surrogate

Case Example: Mrs B75 year old woman complaining of memory lossWork-up confirms memory loss, functional decline over 6 months, diagnosis of ADDeclines disclosure to daughter

Conversation What would be the difficulty in telling your daughter? Daughter had been living with patientDaughter with prescription drug abusePatient intimidated by behavior of daughter and friends in houseLoss of money and objects from homePatient asked daughter to leaveTumultuous departure of daughter 2 mos ago

Capacity EvaluationPatient grasps information on dementiaAppreciates difficulty of isolationWishes support network, ongoing careExpresses values, preferencesDeclines disclosure to daughterWorks with clinician to consider alternatives for support, health care surrogate

Patient has capacity to decline disclosure

Moving ForwardMrs B appoints niece as proxyWorks with clinic social worker to access community services:PACE program VNSPatient declines adult protective services

SummaryHIPAA reminds us to protect privacyNot prevent carePatient refusal of recommendation may trigger capacity evaluationPerform and document evaluationPhysician may disclose against request:When patient lacks capacity for this choicePersuasion failsBenefits to patient outweigh burdens

Selected ReferencesP 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/index.htmlKarlawish J, Moral and Ethical Challenges of Alzheimers Disease, Health Affairs, 2014T. Powell, Life Imitates Work, JAMA. 2011;305(6):542-543.

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