ethical dilemmas in the care of older people with ...€¦ · ethical dilemmas in the care of older...

Ethical Dilemmas inthe Care of Older People with Cognitive Impairment

Lisa Vig, MD MPHGeriatrics and Palliative Care – UW and VAPSHCSChair, VA Ethics Consultation Service

DISCLOSURES

Some slides are adapted from a presentation aboutHIPAA and Dementia by Tia Powell, MD at EinsteinUniversity, and are used with permission.

Some slides are adapted from the VA’s NationalCenter for Ethics in Health Care, and used withpermission.

I have no financial conflicts of interest to disclose.

The views expressed in this presentation don’tnecessarily represent those of the VeteransAdministration….or anyone else for that matter.

Ethical Dilemmas (Vig), NW GWEC Spring 2020 1

Objectives

Explain one difference between clinical ethics applied during ordinary times with public health ethics applied during pandemics

Describe a framework for approaching ethical dilemmas (CASES approach)

Apply the framework to cases involving individuals with cognitive impairment

Reflect on how our own beliefs and values may be influencing how we respond to certain cases

OverviewEthical principles during ordinary times and pandemics

Effect of pandemic on the care of people with dementia

Ethical dilemmas in care of people with dementia during ordinary times

Framework for approaching ethical dilemmas (CASES approach)

Apply the framework to sample cases


What’s an ethical dilemma?A situation in which there is a uncertainty or conflict in values between stakeholders about the right thing to do.

Foundations: Principles of Clinical Ethics

Autonomyrooted in respect for personsthe obligation to promote patient self determination the patient’s capacity to make voluntary, authentic and reasoned decisions



Beneficenceacting in a manner that brings about ‘good outcomes’ or benefit

Non-maleficenceavoiding doing harm

Justicetreating equals equally fair and equitable distribution of benefits and burdens

Dali, 1931


Standards of Care1. Conventional

2. Contingency

3. Crisis

Public Health Ethics Principles

Respect: honoring human dignity

Fairness: decision making according to consistent andspecified criteria based on the moral equality of allpeople

Transparency: Clarity in decision making

Justice: Achieving the greatest good for the greatestnumber


Healthcare Values in a Pandemic

Duty to Care:– Obligation of the health professions– Take proportional risk to care for patients and notabandon them

Organizational Reciprocity:– Responsibility to support staff to meet duty andtheir other obligations

• Provide PPE, security, basic needs, indemnification

Tension Between Clinical and Public Health Ethics

Clinical Ethics

Focus on honoring individual autonomy

Public Health Ethics

Focus on achieving the greatest good for the greatest number (Utilitarian approach)


Tension Between Clinical andPublic Health Ethics

Clinical Ethics• Individual patient• Patient centered care• Primary of patientpreferences/values

• Advocacy and fidelity topatient

Public Health Ethics• Community• Common good• Moral equality of allpeople

• Fairness in distribution• Follow scarce resourceallocation protocols toensure maximal survival

Kandinsky, 1926


Impact of pandemic on care of those with cognitive impairment

Restricted libertyReduced activities and outingsVisitor limitations (decreased socialization) Increased isolation

Caregivers – stressed, exhausted, sickReduced patienceReduced interactionsReduced quality of careMay lead to increased stress/anxiety of people with cognitive impairment

Variable understanding of situation


Potential Ethical Dilemmas

Whether to leave someone with dementia home alone to protect them while caregiver goes to the store to buy food

Get food delivered

Whether to seek medical care for someone with dementia

Telehealth

Potential Ethical Dilemmas

Whether someone with moderate/severe cognitive impairment receives scarce life-sustaining treatment during “crisis capacity” of a pandemic

Create scarce resource allocation and triage teams

Teams apply approved algorithms


Think outside the box – Creative solutions

Warhol, 1964

Helping to plan for what’s nextStrategize on ways to meet basic needs

Encourage advance care planning

Is there an advance directive on file? Durable Power of Attorney for Health CareLiving Will

If no, can the person with dementia complete one?Legal decision-maker most important (and easiest)

Has the caregiver completed these documents for him/herself?

Google “dementia advance directive”


Helping to plan for what’s next

Who is the patient’s legal decision-maker?

LEGAL HIERARCHY OF SURROGATES

VA System (1004.01)DPOACourt appointed guardianSpouseAdult childParentAdult siblingGrandparentAdult grandchildClose friend (someone who shows care/concern and is familiar w/ pt activities)

WA State (RCW 7.70.065)Court appointed guardianDPOASpouseAdult childrenParentsAdult siblingsAdult grandchildrenAdult nieces/nephewsAdult aunts/unclesInvolved other


STATE SPECIFIC LEGAL HIERARCHIESOF SURROGATES

American Bar Association, Elder Law Section

Google “American Bar Association Health Care Decision Making”

Pick “Default Surrogate Consent Statutes”

Helping to plan for what’s next

Overall, what kind of care would the person with dementia want? (Goals of care)

Full treatmentSelective treatmentComfort focused treatment

Additional things to considerAntibiotics?Hospitalization? ICU transfer? Code status?


POLST Form

Code statusPreferred goals of careAntibioticsArtificial fluid and nutrition

Available at www.wsma.org/patients/polst.htmlwww.doh.wa.gov/hsqa/emstrauma/resuscitation.htm

RESOURCES FOR HAVING CONVERSATIONS

VitalTalk.org – new COVID specific talking points

Google “VA goals of care conversations”

Prepare for your care – prepareforyourcare.org


What’s Plan B if caregiver gets sick?

Klimt, 1903


Some ethical dilemmas in dementia care during ordinary timesWhether to…

Share dementia diagnosis

Promote continued driving, voting, or independent living by a person with dementia

Honor the preferences of the “then” self or the “now” self

Give/withhold antibiotics in advanced dementia

Start tube feedings in advanced dementia

Withhold food/drink in accordance with a directive

VA CASES APPROACH

1. Clarify the request2. Assemble the relevant information3. Synthesize the information4. Explain the synthesis5. Support the consultation process

Google “CASES pocket card ethics”


CASES APPROACH - CLARIFY

Clarify the requestIs there an ethical dilemma?

Is there uncertainty or conflicting values about the right thing to do?

Patient and/or family valuesClinician valuesPolicies/LawsWhat are YOUR values?

CASES APPROACH - CLARIFY

Clarify the request

What’s the ethics QUESTION?

Given (conflict between stakeholder X’s

value A and stakeholder Y’s value B) is

it ethically justifiable (to do/not do Z)?


CASES APPROACH – ASSEMBLE

Assemble the relevant informationMedical informationPatient preferences and interestsOther parties and preferencesEthics knowledge, Policies, Laws, etc

Meet with patient and/or familyTalk to involved cliniciansTalk to others (ethics colleagues, lawyers, etc)

4 BOX METHOD – FROM JONSEN

Medical Indications Patient Preferences

Quality of Life Contextual Features


CASES APPROACH - SYNTHESIZE

Synthesize the informationIs a formal meeting needed?

Ethical analysisWhat are the different options?What are the consequences of those options?How does the case look through different ethical lenses?

Develop recommendations

Resist the urge to try to FIX everything!

CASES APPROACH - SYNTHESIZE

Different ethical lenses to examine cases through

Principlismautonomy, beneficence, non maleficence, justice

Previous cases (casuistry)Policies, laws, professional codes of ethicsHarms vs. benefitsDuties and obligationsRights


CASES APPROACHEXPLAIN AND SUPPORT

Explain the synthesisWrite it up – CPRS and ECWebCommunicate the synthesis to key participantsProvide additional resources

Support the consultation processFollow upEvaluation of the processIdentify underlying systems issues

LEARN MORE

www.ethics.va.gov/IntegratedEthics(or Google “IntegratedEthics”)

Ethics Consultation link


READY FOR CASES?1. Is there an ethical dilemma?2. What are the conflicting values?3. What’s the ethics question? 4. What are the facts?5. What’s your analysis?6. What are your recommendations?

MR. AMr. A is an 73 yo man brought to PCP by family after he disappeared for several days

Lives alone with help from familyFamily finds him irascible, forgetfulLost while driving - ended up in a different stateDenies evidence of fire in kitchen

Mr A tells physician“If I have Alzheimer’s Disease, don’t you tell my kids. They’re always in my business!”


STEP 1 - CLARIFYIs there an ethical dilemma?

What are the conflicting values?Mr. A doesn’t want his family informed of a dementia diagnosisPCP thinks family may need to help with medical decision makingPCP isn’t sure whether HIPAA prevents him from informing the family when Mr. A has said not to do this

STEP 1 – CLARIFYTWO QUESTIONS – ONE ETHICAL, ONE LEGAL

Given that Mr. A. may have dementia and does not want his family informed of his diagnosis, but his clinician believes that the family may need to help with decision making, is it ethically appropriate to inform his family?

Does HIPAA prevent clinicians from sharing information with family members when cognitive impairment is present?


STEP 2 - ASSEMBLE

What information do you want?With whom do you want/need to talk?

STEP 2 - ASSEMBLE

What information do you want?Medical information – does Mr. A have dementia?Does he have decisional capacity to make the decision to not inform his family?Why does he not want his family informed?What does HIPAA say about informing others when cognitive impairment is present?


STEP 2 - ASSEMBLE

Does Mr. A have dementia?Mr. A is examined and has cognitive impairment in multiple domains

Probable moderate dementia

Why does Mr. A not want his family informed?

“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.”Denies any abuse by family

Family present at clinic visitFamily helping with transportation, housework, food

Step 2 - Assemble


Information from capacity evaluationMr A concedes memory problems

Will not engage in discussion of dementia and why family involvement may be important

Sole reason to withhold information is concern re: driving

Does express values: Maximize independenceAvoid nursing homeProlong time at home

Adult children are “good kids”

Step 2 - Assemble

Mr. A lacks the capacity to withhold dementia diagnosis

Can’t weigh risks/benefitsChoice does not fit with goal to stay home

Capacity is decision specificMr. A can make other choices

Assign a health care agent

Patient goals may still be valid – don’t ignore

Step 2 - Assemble


STEP 2 – ASSEMBLE – IN THE MOMENT

He doesn’t want family told, but doesn’t have decision making abilities to understand why they may need to be included in decision-making

What about HIPAA?

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.

Step 2 - Assemble


STEP 3 – SYNTHESIZE

Although Mr. A does not want family informed, he does not have capacity to make the decision to not inform them

No evidence that family isn’t suited to advocate for him

Decisions he can’t make go to his legal decision-maker(s)

HIPAA does not bar informing family

Do not ignore his perspectives

STEP 4 – EXPLAINIMPORTANCE OF DOCUMENTATION

Summary of information and choice presentedDescribe patient’s understanding of informationReasons for patient’s refusal of recommendationPatient’s medical values and preferencesEfforts to minimize intrusion on autonomy:

Transparency re disclosurePlan to maximize patient’s valuesPlan to engage appropriate surrogate


CASE RESOLUTION

Mr. A is informed that the clinician needs to involve his family in decision-makingClinician assures Mr. A that efforts will continue to involve him in his decision makingFamily is informed of Mr. A’s diagnosis and reminded that Mr. A values his independenceFamily informed about course of dementia, ways to promote his independence, resources from the Alzheimers Association

TAKE HOME POINTS

HIPAA reminds us to protect privacy - not prevent carePerform and document capacity evaluation

Physician may disclose against requestWhen patient lacks capacity for this choicePersuasion failsBenefits to patient outweigh burdens


Rothko

MRS. C88 yo woman with CHF, HTN, afib, CKD Lives alone Admitted last month for delirium secondary to a UTIAdmitted this month after a fallPT and OT recommend subacute rehabPatient insists on going homeTeam insists this isn’t safe


STEP 1 - CLARIFYIs there an ethical dilemma?

What are the conflicting values?Mrs. C wants to go homePT and OT think she needs subacute rehabHer medical team doesn’t think she is safe to go home, and want to require her to go to rehabTeam may be concerned about liability

STEP 1 - CLARIFY

What’s the ethics question?

Given that Mrs. C insists on going home, but her medical team believes this would be an unsafe discharge and wants to require her to go to rehab, what are the ethically appropriate options for her discharge?


CONFLICT IN ETHICAL PRINCIPLES

Medical TeamBeneficenceNon-maleficence

Mrs. CAutonomySelf Determination

vs.

CONFLICT IN ETHICAL PRINCIPLES

Medical TeamBeneficenceNon-maleficence

Mrs. CAutonomySelf Determination

vs.

Social work


STEP 2 - ASSEMBLE

What information do you want?

With whom do you want/need to talk?

STEP 2 - ASSEMBLE

What information do you want?What is institution’s policy on informed consent?Why does Mrs. C want to go home?Does she have decisional capacity to make the decision to go home?

With whom do you want/need to talk?

What are YOUR personal thoughts about this case?


VA POLICY RI-06 INFORMED CONSENTEXCERPTS

“Informed Consent Process: For patients who have decision-making capacity, the informed consent process involves the following outlined procedures.

Provide information that a patient in similar circumstances would reasonably want to know,

Describe the recommended treatment or procedure in language that is understandable to the patient

Describe expected benefits and known risks associated with the recommended treatment or procedure, including problems that might occur during recuperation

Describe reasonable alternative treatments and procedures. “


“The practitioner is prohibited from attempting to persuade a patient to consent to a particular treatment or procedure by denying, or threatening to deny, the patient access to another procedure or treatment.”



“The patient may choose among recommended or alternative treatments and procedures that are consistent with accepted professional standards, including no treatment.

Alternatively, the patient may revoke a prior consent, even if that decision may increase the risk of serious illness or death, without prejudice to the patient’s access to future health care or other benefits. “

WHY DOES MRS. C WANT TO GO HOME?Does her reason matter?


WHY DOES MRS. C WANT TO GO HOME?Some possibilities:

Previous experienceDuties at home

Psychotic beliefUnrealistic expectations

STEP 2 - ASSEMBLE

Does she have decisional capacity to refuse rehab?

If yes…Coercing her to go to rehab by refusing to refill her meds, schedule follow up, etc is unethical and goes against VA policyFacilities in WA can’t hold people against their will


STEP 2 - ASSEMBLE

RCW 11.92.190Detention of person in residential placement facility against will prohibited

“No residential treatment facility which provides nursing or other care may detain a person within such facility against their will.”

STEP 2 - ASSEMBLE

Does she have decisional capacity to refuse rehab?

If no…Who is her legal surrogate, and what does that person say?


LEGAL HIERARCHY OF SURROGATESVA System (RI-06)

DPOACourt appointed guardianSpouseAdult childParentAdult siblingGrandparentAdult grandchildClose friend (someone who shows care/concern and is familiar w/ pt activities)

WA State (RCW 7.70.065)Court appointed guardianDPOASpouseAdult childrenParentsAdult siblingsAdult grandchildrenAdult nieces/nephewsAdult aunts/unclesInvolved other

STEP 3 - SYNTHESIZE

Weighing the information and the options


STEP 3 – SYNTHESIZEWEIGHING THE OPTIONS

Sending her homeHonors Mrs C’s prefsMay cause clinician distressRisk of injury or hospital readmission

Sending her to a SNFDisregards Mrs C’s prefsReduces clinician distressPossibly lower risk of injury/readmission when she gets homeIs illegal in WA

STEP 3 - SYNTHESIZEMAKING RECOMMENDATIONS

Are there only two options – AMA discharge to home or SNF?Are there alternatives to consider?


ALTERNATIVESWHAT ELSE CAN THE MEDICAL TEAM DO?Think about resources to maximize Mrs. C’s safety at home

Visiting nursesRN, PT, and OTHome safety evaluationMedication management

Meals on WheelsLife AlertHome Telehealth program enrollmentGeriatric Regional Assessment Team

STEP 3 - SYNTHESIZEMAKING RECOMMENDATIONS

Does she meet Adult Protective Services (APS) criteria for “vulnerable adult”?

Age 60+ who cannot take care of him/herselfAge 18+ and one of the following:

Have a legal guardianHave a developmental disabilityLive in a licensed facilityGet in-home services with licensed hospice or home care agencyHave an aide who is paid to provide care


CASE RESOLUTION

Ethics - if Mrs. C has decisional capacity, she can make a decision medical team doesn’t agree with

Medical team - Mrs. C has decisional capacity to decide about her discharge and has a “reasonable” reason for wanting to go home

She goes home

She stays home for 8 months

CASES APPROACHEXPLAIN AND SUPPORT

Explain the synthesisWrite it upCommunicate the synthesis to key participantsProvide additional resources

Support the consultation processFollow upEvaluation of the processIdentify underlying systems issues


ACKNOWLEDGING TEAM DISTRESS

Would it be helpful for the involved team members to have a facilitated session to debrief about the case? New Unit Based Ethics Conversations (UBEC) program – facilitated discussions about distressing situations with staff

TAKE HOME POINTS

Patients with decision-making capacity can make decisions their health care teams consider “bad” or “unsafe”

Team may want to consider ordering visiting nurses, getting her a Life Alert, suggesting that she get Meals on Wheels, etc

Team may want to consider calling APS when she leaves…but she may not let them in


Rodin 1880

Questions?

Haring 1988


Communicate the synthesis to key participant

Communicate directly to key participants Describe what transpired as well as the

resolution and any recommendations or plans Indicate willingness to continue working with

participants

Provide additional resources Consider what might be most useful to

participants Make available copies of articles or other

publications. Recommend websites foradditional information

Document the consultation in the health record

Name and role of requester Date and time of request Name(s) of consultant(s) Description of case and ethics concern Ethics question Sources and summary of relevant information

(i.e., medical facts, patient interests, otherinterests, ethics knowledge)

Description of formal meetings held Summary of ethical analysis

Determination of ethically appropriate decision maker Options considered and whether consensus

was reached Recommendations and plans

Document the consultation in consultation service records

All health record notes Inter-consultant communications and notes Activities supporting the consultation process Use ECWeb (if available)

EXPLAIN the Synthesis

C

EFollow up with participant

What happened with the case? Have any new ethics concerns emerged? Were the recommendations followed? If not,

why not?

Evaluate the consultation Conduct a critical self-review of each case Compare actual processes followed to

established standards Determine participants’ satisfaction with the

consult process Obtain feedback from peers and supervisors Explore opportunities for external peer review

Adjust the consultation process Consider results of follow-up and evaluation

steps above Make changes in policies and/or procedures as

appropriate

Identify underlying systems issues For each case, consider whether underlying

systems issues need to be addressed Periodically review records to look for patterns

of recurrent cases or concerns Bring significant systems issues to the attention

of the individual or body responsible forhandling such concerns

SUPPORT the Consultation Process

F ll

S

This card describes a practical, systematic approachfor performing ethics case consultation.

This process involves five steps:Clarify the Consultation RequestAssemble the Relevant InformationSynthesize the InformationExplain the SynthesisSupport the Consultation Process

The National Center for Ethics in Health Caredesigned the CASES approach to standardizethe process of ethics consultation throughout theVA system. For consultations involving activeclinical cases, consultants should follow all of thesteps in the CASES approach. For other types ofconsultations, such as general questions aboutethics, policy interpretations, or requests for ethicalanalysis of organizational ethics topics, the CASESapproach should be modified as needed.

The CASES steps were initially designed to guideethics consultants through the complex processprocesses needed to effectively resolve ethicalconcerns in active clinical cases. We intend thesesteps to be used similarly to the way clinicians usea standard format for taking a patient’s history,performing a physical exam, or writing up a clinicalnote. Even when some steps don’t require specific,observable action, each step should be consideredsystematically as part of every ethics consultation.

Ethics Consultation Responding to Ethics Questions in Health Care


Consider the types of information neededMedical factsPatient’s preferences and interestsOther parties’ preferences and interestsEthics knowledge

Codes of ethics, ethics guidelines, andconsensus statements

Published literature Precedent cases Institutional policy and documents, and law Outside ethics experts

Identify the appropriate sources of information

Face-to-face patient visitDirect examination of the health record andother documentsInterviews with key staff membersInterviews with family members and friends

Gather information systematically from each source

Adapt the content and depth of information to fitthe needs of the caseCollect firsthand information whenever possibleIndependently verify critical informationDistinguish medical facts from value judgmentsNotify the attending physician beforeinterviewing the patient

Summarize the information and the ethics question

Communicate the summary to key participantsRespectfully report information from varioussourcesAttempt to reconcile contradictory informationReformulate the ethics question, if necessary

ASSEMBLE the Relevant InformationADetermine whether a formal meeting is needed

Prepare by communicating with key participantsand reviewing relevant ethics knowledgeExplain goals and set ground rules“Level the playing field”

Engage in ethical analysisApply ethics knowledge to the circumstancesand ethics questionApply various approaches to ethical analysis

Identify the ethically appropriate decision maker

Determine whether the patient has decision-making capacityIf the patient lacks capacity, determine his/herknown preferences and authorized surrogateClarify the limits of the surrogate’s authorityIf no surrogate is available, facilitate theprocess described in policyHealth care professionals determine whatclinical interventions are consistent with soundmedical practiceThe patient/surrogate determines whether toaccept these interventionsThe health care organization may legitimatelyplace limits on patient/surrogate or providerchoice

Facilitate moral deliberation about ethically justifiable options

Offer options that may not have beenconsideredReview the range of ethically justifiable optionsCite sources to support the claim that aparticular option is not ethically justifiableSupport the ethically appropriate decisionmaker in the decision-making process

SYNTHESIZE the InformationSCLARIFY the Consultation RequestCCharacterize the type of consultation request

Does the requester want help resolving anethical concern?Does the request pertain to an activeclinical case?

Obtain preliminary information fromthe requester

Requester’s contact information and titleUrgency of requestBrief description of the case and theethical concernRequester’s role (e.g., attending physician,family member, administrator)Steps already taken to resolve the ethicalconcernType of assistance desired (e.g., forumfor discussion, conflict resolution, policyinterpretation, moral support)

Establish realistic expectations about the consultation process

Describe the ethics consultation process and itsgoals (orally or in writing)Correct any misconceptions the requestermay have

Formulate the ethics questionGiven [uncertainty or conflict about values],what decisions or actions are ethicallyjustifiable? orGiven [uncertainty or conflict about values],is it ethically justifiable to [decision or action]?Values are defined as strongly held beliefs,ideals, principles, or standards that informethical decisions or actions


ethical dilemmas in the care of older people with ...€¦ · ethical dilemmas in the care of older...

Documents