Dalhousie CME 93 Annual Fall Refresher

Assessing Decision-Making Capacity in Older Adults

Daniel Carver MD, FRCPCDivision of Geriatric Medicine

Dalhousie University

AcknowledgementsScott Theriault MD FRCPC

Keri-Leigh Cassidy MD FRCPCHeather Rea MSW

Leah Nemiroff FRCPC

Disclosure statement

• No relevant disclosures or conflicts of interest

• No evidence based information

• I am not a lawyer

Objectives

1. Be familiar with situations where decision making capacity concerns arise

2. Understand basic principles of decision making capacity

3. Be able to describe steps of performing a capacity assessment

4. Appreciate challenges with the assessment process

5. To understand hierarchy of substitute decision making

Situations – capacity concerns• Patient refuses reasonable medical care

• Patient refuses personal care / home supports

• Patient is a victim of abuse or (self) neglect

• Patient making poor financial decisions

• Continuing Care NS asking for capacity assessment prior to long term care application (because patient refusing placement)

• Family ask for clarification – should the advance directive be enacted?

• Revoking a previous declaration of incapacity

Cases

Case Mr. RH• 80 M, grade 8, single, lived alone, no family

• Previously well• Presented to ED

– New abdominal pain, weight loss and bloody diarrhea

• Physical exam– In pain– BP 90/70, HR 100/min– RLQ abdominal mass

• Labs: CBC - hgb 80, microcytic

• Given morphine for pain

Case Mr. RH

• Told that further tests and hospital admission necessary

–Patient refused: “I just want to go home.”

– Staff: “ ...you may have cancer.”

–Patient:“ ...If I have cancer… I want to go home and try yoga!”

Case Ms. LN• 80 F, divorced, retired teacher, living alone

– No local family but supportive friends

• Past health: arthritis, hypertension and vision loss

• Concerns (information from friend)

– Impaired memory for 1 year

– New odd behaviour and suspiciousness

– Poor self-care / weight loss

– No medical treatment for 3 years

– Not paying bills or taking medications

Case Ms. LN• Home assessment

– Alert, thin, disheveled – dressed in night gown

– Home chaotic and poorly cared for

– Little food in fridge, no medications

– Mini Mental State Exam: 16/30 (0/3 delayed recall)

• Patient:

– “...there’s nothing wrong…I’m doing well… my memory is good...I don’t need any help…I want to stay here… leave me alone!”

Case Mrs. HC• 86 F, lived alone in a seniors apartment – no supports

• Admitted to hospital after a stroke with hemiparesis

• Despite rehab she did not regain mobility– Wheel chair dependent, transfers independently

– Needed assistance - meals, dressing, shopping, housekeeping and bathing

• Team recommended formal supports to return home

– Without help she is a “risky discharge”

• Patient adamantly refused Continuing Care NS

– “I can manage…I don’t want help!”

Case Mr. TM

– 79 M, assessed for cognitive concerns

– Son alleged - financial mismanagement

• “Gave $10,000 to drug addicted nephew!”

• “Spent $3,000 on hospital lottery!”

• “Spent ?? on VLTs.”

• “Forgetting to pay bills”

• “He can’t manage his money...I need to take over to protect his assets.”

Case Mrs. BC

• 74 widow, living alone, CCNS and VON involved

• PMH: multiple comorbidities

• Function: independent BADLs, help with some IADLs because of physical impairments

• July 2016: assessed because of cognitive impairment

– MMSE 30/30

– CT brain: small vessel ischemic changes

• Cause? VCI, medical illness, subsyndromal delirium, low mood, medications

Case BC• Nov 2016: ED - worsened cognitive function for 2 weeks

• VON - concern about med compliance

• ED staff recommended “lock box” for meds - she adamantly refused

• MMSE 27/30, MoCA 15/30

• Diagnosed with “dementia”

• Deemed lacking in decision making capacity – Adult Protection involved

• Placed in NH two days later

• Sister sold car and gave up her apt

Case BC

• June 2017: routine clinic reassessment

– Upset about NH placement and loss of autonomy

– She said she did not refuse care but didn’t want “6-7 visits a day” or a “large cabinet” in her home

– Wanted to leave NH and make own decisions

– MMSE 29/30, MoCA 26/30, normal CDT

What is meant by terms decision making capacity and competency?

• Capacity refers to an individual’s psychological / cognitive abilities to form rational decisions

• Competency is a legal term referring to an individual having sufficient mental ability to participate in legal proceedings or transactions

(e.g. sign contract, make a will)

• Competency is a legal question

– Decided by the courts

– Accepted criterion is physician judgment

What is capacity? Bill 16, section 3(d) “Capacity" means the ability, with or

without support, to:

(i) understand information relevant to making a decision

(ii) appreciate the reasonably foreseeable consequences of making or not making a decision including, for greater certainty, the reasonably foreseeable consequences of the decision to be made

• Support includes peer support, communication and interpretive assistance, individual planning, coordination and referral for services and administrative assistance https://nslegislature.ca/legc/bills/63rd_1st/3rd_read/b016.htm

What is capacity?

• Definition: Ability to make a decision

• 2 key terms: Understand & Appreciate

• Elements:

• Ability to communicate a choice

• Factual understanding of relevant information

(REPEAT)

• Appreciate significance of information and its consequences (EXPLAIN)

• Ability to reason - rational manipulation of information to weigh options

Applebaum (Prof Law & Ethics, Columbia University)

Basic principles• All Nova Scotians have the legal right to make decisions where

they have capacity – capacity is presumed

• People are allowed to make decisions that others think are risky or unwise

• An adult is entitled to communicate by any means that enables them to be understood

• How they communicate is not relevant to a determination of whether the adult has capacity

• If an adult does not have the capacity to make a decision, the adult's autonomy must be preserved by ensuring that the least restrictive and least intrusive form of representative decision making is provided

Changing ideas about capacity

• Past viewpoint

– Either competent or not competent

• Current viewpoint

– Not an all or none situation

– Concept of a continuum of competence

• Segregation of competencies

• Decision specific

• Least restrictive alternative – Representative

What are the different types of decision making capacity?

Three types in health care setting

1. Medical – consent to treatment

2. Personal care

3. Financial

• Others: Testamentary, marry, be a parent, fitness to stand trial, instruct council, responsibility for a crime, be a witness, enter into a contract, assign POA

Who can assess capacity?

• Prior to Dec 28th 2017 - MDs only

• Bill 16 states with training:

– A licensed, practicing member of any other health profession, who is designated as an assessor

– “Has to be court related”

• Training developed in 2018 – Public Trustee

– Marian Casey - Capacity Assessor Coordinator

– Renewals / maintenance required

How do we assess decision making capacity?

Capacity assessment guidelines

• Goal

– Use standardized assessment and criteria

• Principle

– Respect for person’s autonomy vs. duty of care - need to act in that persons interest

How do you assess capacity?

Determine

1. Does the patient need a medical assessment first?

• Identify any medical condition (including temporary or reversible conditions) that may affect the adult’s capacity

• i.e. delirium

How do you assess capacity?

Determine

2. Is formal capacity assessment necessary?

• Consider patient’s circumstances and risk

• Is there tangible benefit to patient?

• A patient lacking capacity but willing to accept help may not need to be formally assessed

• Allowed to make a “poor” decision

Assessment process

Determine

3. What domain(s) of capacity is a concern?

Assessment process

4. Is patient alert, cooperative and able to communicate? – Explain that concerns have arisen

– Obtain consent

5. Understand the patient’s background• Education, socio-cultural

• System of values

– Able to make compatible decisions?

The assessment – general principles

• Focus on understanding and appreciation

1. Is there factual understanding?• Does patient understand information relevant to decision

making?

2. Are the patient’s decisions reasoned?• Ask “Why are you making this (bad) decision?”

3. Can patient identify options and choices and what impact that might have

4. Does patient have insight?

Medical – consent to treatment

• Does the patient understand

– Their medical issues?

– Condition for which treatment is proposed?

– Nature and purpose of the treatment?

– Risks in undergoing treatment?

– Risks in not undergoing treatment?

Personal care• Understanding of health, nutrition, function,

hygiene, fire / water hazard

• Realistic understanding of strengths and weaknesses with respect to providing a secure living environment, food and clothing

• Willingness to make use of supports if necessary

• Evidence of poor judgment resulting in harm to self or others

» Can J Psychiatry 1989; 34:829-832

Financial

• Knowledge of assets, income, expenses and debt

– Need corroboration from collateral

• Evidence of mismanagement in past

– “Why did you make that (poor) decision?”

• Consider

– Complexity of estate

– Risks if poor judgment used» Can J Psychiatry 1989; 34:829-832

Assessment process• Consider further information

– SW to do financial study

– OT assessment of function

• Is condition permanent or temporary?

– Can vary over time

– Consider future reassessment

Challenges to assessment

• Focus on needs of patient and not others

• Places patient’s fundamental rights and freedoms at risk, particularly the right of liberty

• Only use as a last resort– Incapacity route should not be a coercive way

of advocating services and professionalizing care

Challenges to assessment

• No “gold standard” or accepted tool(s)

• Standardized, reliable, validated instruments not available

• Doctors not well trained to assess capacity

– Reliance on subjective clinical impressions and brief mental status testing

Challenges to assessment

• Studies show doctors have difficulty1. Assessing decision making capacity

2. Distinguishing between mental status and capacity in older persons• “Competency panels” often find subjects competent

despite psychometric scores» J Am Geriatr Soc 1997;45:453-7

» Can J. Psychiatry 37 Nov 1992

• Cognitive deficits alone are not sufficient basis for lacking capacity

Forms

• Form A or 1 - Declaration of Capacity to Consent to Treatment (Medical and Personal Care)

• Form B - Revocation of Declaration of Capacity

• Form C - Declaration of Competency (Financial)

• Form D - Revocation of Declaration of Competency

• Form E - Notice to Public Trustee (Financial)

• Declaration of Substitute Decision Maker

Who makes decisions for a patient who lacks

capacity?

IPTA/Hospitals Act: SDM• Hierarchy for determination of SDM:

1. Person authorized under the Medical Consent Act (i.e. Enduring power of attorney / Personal Directive)

2. Court appointed guardian (Now called “Representative”) Bill 16 - December 28, 2017

3. Spouse or common law partner (for 2 years), is cohabitating in conjugal relationship

4. Adult child

5. Parent

6. Adult sibling

7. Any other adult next of kin

8. Public trustee - when none of above

Substitute Decision Makers

• Next of kin requires contact within preceding 12 month period

– Willing to assume responsibility and knows of no one available from a higher category

• Can’t go level down for different decision maker

• Representative

– May be for all matters

– May be for only a single decision

Who can be a representative?

• An individual, trust company (financial only), or the Public Trustee

• Reached age of majority

• Consents to act and will act in accordance with the duties of the act

• Is suitable: – Has regard to the views and wishes of the adult

– The relationship makes sense to complete the representative duties

– They have the ability to exercise the necessary authority

– No circumstances that impair the Court’s ability to supervise them (i.e. living in a remote area)

• No conflict of interest

• Can be more than one representative (i.e. alternate)

Key messages• Two fundamental principles of decision

making capacity – understanding and appreciation

• Three types of decision making capacity that we are expected to be knowledgeable

– Medical consent, personal care, financial

• Assessment of capacity is a “last resort”

• Hierarchy of substitute decision making

More information

• daniel.carver@nshealth.ca

• Nova Scotia Public Trustee

• https://novascotia.ca/just/pto/