ethical dilemmas in the care of older people with

Ethical Dilemmas inthe Care of Older People with Cognitive Impairment

Lisa Vig, MD MPHAssociate Professor, Division of Gerontology and Geriatric Medicine, UWStaff Physician – VA Puget Sound Health Care SystemChair, VA Ethics Committee

Disclosures

I have no actual or potential financial conflict ofinterest regarding the material to be presented

The views expressed in this presentation are mine,and do not necessarily reflect those of the VeteransHealth Administration….or anyone else for thatmatter

Ethical Dilemmas-Vig-NW GWEC Winter 2021 1

ObjectivesDescribe at least 3 ethical dilemmas that may arise in the care of individuals at different stages of dementia.

Describe the 4 decision-making abilities that are assessed when determining if an individual has decisional capacity.

Discuss the concept of moral distress and identify at least 3 of the risk factors for developing it.

OverviewDefine ethical dilemmas

Case – Stopping eating and drinking by advance directive

Case – Gun management in dementia

Case - Decisional capacity

Case – Nursing home visitation restrictions

Moral distress during COVID


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

Disagreements about the “right” thing to doPatient and family membersBetween family membersBetween family and cliniciansBetween cliniciansBetween policies and clinicians

Some ethical dilemmas in dementia careWhether to…

Share dementia diagnosis

Promote continued driving, voting, gun owning, 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


Thiebaud

Mrs. G85 year old woman with moderate dementia who lives in a nursing home

Wheels herself around the unit, gets crackers from the snack cart, and enjoys watching birds outside

Has no swallowing problems

Enjoys ice cream, saying “oh boy” with each bite

Adapted from Wright, JAMDA, 2019


Mrs. GNo longer recognizes loved ones, but enjoys their frequent visits

Son asks when they plan to stop feeding his mother

Living will on file - “If I ever get to a point that I no longer recognize my family, I ask that my family and/or caregivers stop offering food and fluids and let me pass”

What’s the ethical dilemma?Patient perspective

Prior to dementia diagnosis, documented she didn’t want this

Now appears content, enjoys eating

Then self Now self


What’s the ethical dilemma?Family perspective –

Duty to honor her preferencesAllowing her to live is wrong

Nursing home staff Mrs. G enjoys eatingNot feeding her = killing herRegulations

Considering ethical principlesAutonomy and personhood

The autonomy of which self?

Beneficence and nonmaleficenceWhich option is “good”?

Can staff withhold a basic right that gives an individual pleasure?

JusticeDo we believe that the life of someone with dementia has less value?


There is no absolute right thing

Acknowledge conflict between 2 injusticesViolate the concept of advance directivesRefuse to feed someone who enjoys eating

Compromise and think outside the box

Warhol, 1964

There is no absolute right thing

Advocate comfort feeding Provide Mrs. G with foods she likesAllow her to socialize with othersDon’t force feedDon’t worry about weight loss

Engage in end of life planning

Adapted from Wright, JAMDA, 2019Ethics Committee – AMDA – The Society ofPost-Acute and Long-Term Care Medicine


End of life planningDiscuss

Overall goals of careCode statusAntibioticsHospitalization

PrognosisEprognosis.ucsf.edu

4 Sections1. Code status – CPR or DNR

2. Overall focus of careFull treatmentSelective treatmentComfort-focused treatment

3. Use of antibioticsTo prolong lifeDo not use

4. Feeding tubesLong termTrial periodDon’t use

Physician Orders for Life Sustaining Treatment - POLST


Other options for Mrs. G?End of life planning

POLST form Do not resuscitate orderComfort focused care – not life prolongationNo antibioticsNo feeding tubes

“Do not hospitalize” order

Importance of contextWhat if Mrs. G was at home?

What if her family decided to take her home? (Canadian case – Margot Bentley)

What if she didn’t seem content?

What if eating didn’t give her so much pleasure?

What if Mrs. G was aspirating?

What if she clenched her teeth when staff try to feed her?


Case resolutionSNF staff and family meet

POLST completed

Family distressed about prognosis

Social work offers support

Take home pointsLimits to honoring directives to stop food/drink in facilities

Recognize family and staff distress

Solutions - Compromise and think outside the box


Homer 1889

Mr. H

76 yo former police chief and county sheriffDementia diagnosis for 2 yearsAccidentally shot his wife of 57 yearsShe’d taken away his car, but not his gun

USA Today, July 1, 2018

“He was just almost obsessive about seeing his guns…He spent darn near 40, almost 50, years in law enforcement, and a gun was always with him, and so to deprive him of not even seeing them, in my heart of hearts, I couldn’t deny him.”


A few statistics…45% of people with dementia own a gun or live in a household with a gun

By 2050, ~ 13.8 million Americans will be living with Alzheimer disease

As dementia progresses, people may be more prone to impulsivity, paranoia, delusions

Betz, Ann Int Med, 2019

What are potential ethical dilemmas? Individuals with dementia want access to their gunsFamily uncomfortable with this

Patient and family – pt should have access to gunsClinicians - promote health/safety of patients, families, and public

Clinicians - promote health/safety of patients, families, and publicClinicians - protect patient’s privacy and maintain trust


More about ethical dilemmas….

TensionHonoring patient autonomy vs. protecting public

Similar dilemma to driving

What can be done?


Warhol, 1964


What can be done? Consider advance care planning about firearms

Set a firearm retirement date

Encourage family toLock up the gunsReduce lethality (store unloaded, use blanks, disable trigger mechanism)Remove guns from the home

Some gun shops, ranges, and law enforcement will store guns

Betz, Ann Int Med, 2019

“Red Flag” LawsExtreme risk protection orders

19 states and DCInclude WA and OR

Family, friends or law enforcement petition courts to confiscate firearms

Judge determines if individual is a danger to self or others

Order lasts 6-12 mos


Case resolutionMrs. H underwent multiple surgeriesDidn’t regret showing Mr. H the gun

Take home pointsAsk about gun ownership

Discuss options to promote safety

Develop a plan

Document your discussions


Haring 1988

Mr S

78 yo man with mild-moderate dementia and newly diagnosed metastatic prostate cancer

His wife brings him to your clinic to discuss treatment options, which include surgery, chemotherapy, radiation, and immunotherapy

You wonder if Mr. S has decisional capacity to make this decision


Decisional capacity

“The capacity to make one’s own decisions is fundamental to the ethical principle of respect for autonomy and is a key component of informed consent to medical treatment. “

Karlawish J, Assessment of decision-making capacity in adults, UpToDate2015

Patients need decisional capacity to…

Accept or refuse medical treatmentReturn to independent livingLeave hospital against medical advice (AMA)Participate in researchComplete an advance directiveRequest medication to end their lives

Death with Dignity Law


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.”

More about decision-making capacity

Capacity presumed unless evidence to the contrary

Capacity is decision specificGlobal incapacity less common than limited incapacity

Incapacity not always permanent

Any clinician can determine capacity in routine cases, not just mental health experts


More about decision-making capacity

People with dementia or other cognitive disorders aren’t automatically incapacitated

“Age, eccentricity, poverty, or medical diagnosis alone shall not be sufficient to justify a finding of incapacity.”

Revised Codes of Washington (RCW) 11.88.010

Prevalence of incapacity

JAMA meta analysisHealthy older pts 2.8%Mild cog impairment 20%Parkinson disease 42%Nursing home residents 44%Alzheimer disease 54%

Recognized by clinicians 42% of the time

Sessums, JAMA, 2011


Determining decisional capacity

The four decision-making abilities:

Understanding AppreciatingReasoningChoosing

Steps in determining capacity

1) Get a sense of Mr S’s overall cognitive status….

What’s been going on? Why did your wife bring you in today?



2) Does the patient want to make his own decisions?

Patient involvement in decision-making

Active decision-making role

Shared decision-making with clinician

Deferring decision-making to others

Degner, JAMA, 1997



Assess the patient’s

3) Understanding of diagnosis or treatment options

Don’t assume he’s already been told everything

What have your doctors told you about your prostate cancer? What have they said about the different ways it could be treated?



3) Understanding of diagnosis or treatment options

Ask him to repeat back in his own words –noting if he mentions

Prostate cancer that has moved to the bonesDifferent treatment options, each with different pros/cons




4) Appreciation of how the treatment options apply to his own situation

Steps in determining capacityAssess the patient’s

5) Reasoning behind the choiceIs the choice consistent with patient values and past decisions?Why is that the best choice for you?

6) Make a choice and maintain it over timeWhat is the best choice for you?


Another approach (Courtesy of Dr. Mark Siegler – U Chicago)

1. What’s your main medical problem right now?

2. What treatment has been recommended?

3. If you receive this treatment, what will happen?

4. If you don’t receive this treatment, what will happen?

5. Why have you decided to/not to receive this treatment?

Aid to Capacity Evaluation (ACE)

1. Able to understand medical problem

2. Able to understand proposed treatment

3. Able to understand alternative(s) to proposed treatment

4. Able to understand option of refusing

5. Able to understand consequences of accepting and refusing treatment


Case resolutionMr S does not remember that he has prostate cancerHe states he couldn’t have this because he isn’t uncomfortableHe does not have capacity to make this decision

Next steps…Mr. S lacks decision making capacity - can’t consent

Can still express values

To honor his personhood, needs to assent

Logistically difficult to provide treatment without assent

Involve his legal decision-maker


Legal hierarchy of surrogatesVA (Handbook 1004.01)

Health Care Agent (DPOA)Court 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 guardianHealth Care Agent (DPOA)SpouseAdult childrenParentsAdult siblingsAdult grandchildrenAdult nieces/nephewsInvolved other

Exhibited special care/concernFamiliar with pt’s valuesAvailable to make decisionsNo conflicts

Finding your state’s surrogate hierarchy

American Bar Association, ElderLaw sectionDefault Surrogate Consent Statutes

https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-sept-default-surrogate-consent-statutes.pdf


Take home pointsPatient with dementia may retain capacity for some/all decisions

Capacity determined by assessing 4 decision-making abilities

Those without capacity can still express values and assent to treatment

Kandinsky 1913


Mrs. K

80 yo woman with history of breast cancer

Lives alone

She comes to see you in clinic complaining of insomnia, weight loss, difficulty concentrating

Mrs. K

Further questioning reveals….Her husband of 50 years lives in a nursing home due to dementiaShe hasn’t been allowed to visit him for 10 months


Possible response….This is WRONG!

Mrs. K needs be able to visit Mr. K for both of their sakes

Keeping him isolated is worsening both of their qualities of life

This is a VALID response!

Tension Between Clinical & Public Health Ethics

Clinical Ethics Public Health Ethics

Individual patient Community

Patient-centered care Common good

Primacy of patient preferences/values

Moral equality of all people

Advocacy for/fidelity to patient Fairness in distribution

National Center for Ethics in Health Care


Approaches

Option 1 – Allow visitorsClinical ethics approachFocus on individual patientAim

Psychological/emotional healthCognitive stimulationSocialization with loved ones

Option 2 – No visitorsPublic health ethics approachFocus on communityAim

Physical healthLife

Approaches

Option 1 – Allow visitorsConsequences

Increased illness and possibly death of

ResidentsStaffFamily

Decreased staff availability due to illness

Option 2 – No visitorsConsequences

Worse psychological and emotional health

ResidentsStaffFamily

Cognitive decline


Things to consider…

Tension between ethical principlesBeneficence vs. nonmaleficence

Life/isolation vs. socialization/risk to self/others

JusticeIf we let family visit one patient, is that fair to everyone else?If everyone is allowed visitors, how does that affect everyone’s risk?

Things to consider…

SNF residents - Vulnerable population with highest death rates from COVID

Compared to 18-29 yr olds

65-74 yo 5X > hospitalization and 90X > death rate

75-84 yo 8X > hospitalization and 220X > death rate

85 + 13X > hospitalization and 630X > death rate

Data from CDC.gov


Everyone in a nursing home is connected

What can be done?


Warhol, 1964


Suboptimal solutions

Allow visitation in special circumstancesActive dying

Allow very limited visitation (ie 1 person/1 hr/week)

Use of video visits

Outside, distanced visitation

Take home points

This is AWFUL!


van Gogh 1890

1. What is it?

2. Who gets it?

3. What clinical situations may lead to it?

4. What other factors predispose to it?

5. What are some COVID specific risks?

6. Why is moral distress such a big deal?

7. What can we do about it?

Overview – Moral Distress


Moral Distress

Occurs when you believe you know the right/ethically correct thing to do, but something or someone restricts your ability to take the right course of actionYou are forced to act in a manner that goes against your core values

Adapted from Wocial 2009

PhysiciansNursesPsychologistsSocial workersPhysician AssistantsHealth Care Managers

ChaplainsNutritionistsPhysical therapistsPharmacistsRespiratory therapistsDefibrillator workers

Who else gets moral distress?From the literature


What clinical situations may lead to moral distress?

van Gogh, 1889

Unclear goals of careDisregard of patient wishesContinued life support – futile careFalse hope given to patients/familiesHastening deathInadequate symptom relief for patientsInadequate staffing or trainingInappropriate use of scarce resources

Clinical situations leading to distress

Corley, Nursing Ethics, 2002Hamric, AJOB, 2012


What other factors predispose to moral distress?

Kandinsky, 1926

IndividualPowerlessnessInability to identify medical issuesSelf-doubtLack of assertiveness

OrganizationalPower imbalancesPoor communicationPressure to costsStaffing/Turnover Fear of litigationLack of admin supportPolicies

Contributing Factors

Hamric, AJOB, 2012


Different Impact of Factors

Categories of Risk Factors for Moral Distress During COVID

Patient factors

Clinician factors

Institutional factors

Policies/Guidelines


Some Causes of Moral DistressDuring a Pandemic

Patient FactorsSuboptimal care provided due to volume of patients

Inadequate symptom relief (i.e. scarcity of meds or oxygen)

Disregard for patient preferencesNot providing patients with wanted life-sustaining treatments due to scarcity

Resuscitating patients with COVID

Providing care to COVID deniers


Clinician Factors

Working may put self/loved ones at risk

Clinician inexperience due to reassignment

Not doing more to help - Bystander guilt



Institutional Factors

Inadequate staffing due to illness/redeployment

Inadequate PPE available

Pressure to use untested medications

Tolerance of disruptive behavior

Inadequate information/transparency from leadership


Policies/Guidelines

Decreased lack of control due to government mandates

Frequent changes to “the rules”

Decision-making about which patients get scarce resources

Enforcing no visitor policies


Why is this such a big deal?

Crescendo Effect

Epstein E, Hamric A, J Clin Ethics, 2009


“…Like I said the floggings. The situations where our ethics have not kept up with our technology. The fact that we CAN keep someone alive, knowing full well that their outcomes are poor will make me stop in this field.”

NICU Nurse

Build up of Moral Distress

Epstein and Hamric, J Clin Ethics, 2009

Corley, Nurs Ethics, 2002

Consequences of Moral Distress


What can we do about it?

Klimt, 1903

InterventionsIndividualTeamOrganization

Addressing Moral Distress


Individual InterventionsAmerican Association of Critical Care Nurses -moral distress siteExamples -

Start shifts with a moment of gratitudeHonor the life of patients who die using the Medical Pause

National Academy of Medicine – COVID specific well-being resources

American Psychological Association – information on counteracting burnout

Cultivate your moral resilience

MindfulnessSelf-awareness and insightSelf-regulation and disruption of negative patterns of thinking/behavingMoral sensitivityDiscerning ethical challengesTaking courageous actionFinding meaning in the midst of adversityPreserving self and team integrity

Cultivating Moral Resilience

Rushton, Am J Nurs, 2017


Facilitated discussion with a work group During or after the challenging situationGoal is NOT to fix the situationProvide time/space for everyone to discuss their perspectivesGet the whole story – need it to really understandRelevant ethical principles/concepts/dilemmas identified

Team InterventionUnit Based Ethics Conversations (UBEC)

Helft, JONA’s Healthcare, Law, Ethics, and Regulation, 2009

Team InterventionMoral Distress Map

Dudzinski, J Med Ethics, 2016


Moral Distress Map Steps1. What emotions are you experiencing?

2. What precisely is the source of the moral distress?

3. Name the internal and external constraints to taking action.

4. What values/obligations/responsibilities are in conflict?

5. What actions could you take?

6. What action should you take?

Dudzinski, J Med Ethics, 2016

Identify risk factors within the organization

Acknowledge the risk factors

Leadership support for…

Interventions aimed at reducing risks

Interventions to support staff

Organizational Response


Rodin 1880

Questions?


From Dudzinski DM, J Med Ethics 2016:42:321-324.

Moral Distress Map

Clinical Triggers Current Treatment (unnecessary, inappropriate, non-beneficial) Prolong dying Hastening dying Treatment not in best interest of patient Disregard for patient preferences

o Based on surrogate demands o Due to provider preferences

Inadequate symptom relief (e.g. pain, dyspnea) Unclear goals of care (lack of treatment plan) Lack of consensus re: treatment plan Lack of continuity in treatment plan Other_____________________

Internal factors

Perceived powerlessness Not knowing treatment alternatives Inability to identify the ethical issues or ethical questions Increased moral sensitivity Incomplete information about the situation Lack of assertiveness Self-doubt Socialization to follow others Clinical inexperience Personal values compromised Professional values compromised Fear about taking away hope Other ________________

Interpersonal Issues

Intra-professional conflict (ex. RN to RN) Inter-professional conflict (ex. RN to MD) Poor collegial relationships Work with clinically incompetent health care providers Other____________________

Legal and Regulatory Factors Treatment plan based on fear of litigation Compromise care due to reimbursement concerns Tension between ethical and legal Other____________

Institutional/Culture/Environmental factors

Lack of continuity of providers Nurses not involvement in decision-making Inadequate staffing (not enough) /increased turnover (inexperience) Lack of administrative support Policies and priorities that conflict with care needs Tolerance of disruptive/abusive behavior from staff Tolerance of disruptive/abusive behavior from patients/families Compromising care to reduce costs Hierarchies within healthcare system (issues of unequal power) Inappropriate use of resources Safety concerns (specify) __________ Other __________

Communication Issues

Inadequate Informed Consent o Not all the information o Incorrect information (lack of truth

telling) Being “in the middle” between key stakeholders

o Between physicians and patients o Between family members and

patients Providers giving false hope Inadequate communication among team members Other_________________

Causes of Moral Distress

From Lucia Wocial, PhD RN

ethical dilemmas in the care of older people with

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