The Right to Refuse
Treatment
Brenda Keller, M.D.
Thomas Magnuson, M.D.
Objectives
Elucidate the concept of informed consent
 Define power of attorney and
guardianship
 Discuss refusal of treatment issues
 Describe how to proceed with an
evaluation

Case One

Refusal of medication
– 68 year old female
– Diagnosis of schizophrenia for 40 years
 Severely ill
 Never able to live in the community
– Guardianship established long before
– Order written to give an injectable form of an
antipsychotic if she refused oral antipsychotic
Case One

The patient refused to take the oral
medication
– Despite the order, and the consent of the
guardian, the nursing home refused to give
the IM antipsychotic
– They claimed “The patient has a right to
refuse treatment.”
– The medication is essential for her health
 She denies she has schizophrenia
 Noncompliance will lead to hospitalization
Case Two

Leave AMA
– 88 year old female with severe Alzheimer’s Disease
 Lived in the facility for two years
– Only family is unemployed son who lives in the
patient’s home
 Her money is going down to the point the home will have to
be sold
 The son is her DPOA
– He visits or calls rarely
– Usually never at treatment planning meetings
 He tells the administrator that he desires to take his mother
home “because that is where she belongs.”
Case Two

Naturally the nursing home staff is worried
– The son does not seem to understand the
level of functional support that his mother
needs
 When he asks her if she wants to go home she
says ‘Yes.”
 When the nursing staff asks she says “No.”
 He later notes that “a friend” may help him care
for her
– This friend is never seen, despite the facility asking the
son to bring the friend by to learn how to care for her
Case Three

76 year old demented white male who refuses to
bathe at all
– Becomes combative when approached
– Daughter is DPOA and is embarrassed
 She wavers between bathing and leaving him be
– He has developed infections and skin problems from
his poor hygiene
 He has diabetes and vascular disease
 Other residents complain of his smell
– He is incontinent of urine at times
– His roommate yells at him
Problematic refusals
Eating
 Bathing
 Ambulating
 Medications
 Other therapies and treatments
 Appointments
 Toileting

Basic Concepts

Informed Consent
– A legal concept
 An agreement to do something or allow something to happen
– Take a medication, e.g.
 Made with complete knowledge of all relevant facts
– Risk versus benefit
 Adverse events which may occur due to the medication
 Improvement due to taking the medication
– Available alternatives
 Not taking the medication
 Other medications
 Nonpharmacological treatments
Definitions

Capacity
– Relates to sound mind
– Intelligent understanding and perception of one’s actions
– Physicians and psychologists determine capacity

Consent
– An act of reason and deliberation
– Unaffected by fraud or duress

Assent
– Agreement, usually through deliberation
– Patients can assent even when they cannot consent
 Patient agrees to take the medication though they have a limited
understanding
 Power of Attorney has consented for the patient to take the medication
 Not receiving assent from the patient does not preclude giving the
medication
Where do “Patient’s Rights” fit in
here?
A bit tricky and commonly misunderstood
 Most state and federal guidelines contain a
provision stating that a resident can refuse
medical treatment

– Even though this is couched by “but this could
be harmful to your health.”
– This is independent of any knowledge of
whether he resident has a legal decision
maker or not
Documentation

Durable Power of Attorney
– Notarized form the patient fills out
– Appoint a person to handle your affairs while you are
unable to do so
 Unconscious
 Mentally incapacitated
 “Otherwise unable to do so”
– General, special, health care
– Durable means the POA takes effect if you become
mentally incapacitated and is ongoing
 Can be revoked
– Physician’s assessment usually required for the DPOA
to go into effect
Documentation

Remember
– The durable power of attorney can be signed
by the patient only when they retain the
capacity
 To understand what they are entering into
– As mentioned before
 Have the capacity to determine who would act in
their interest
– Allows less than responsible persons to manage the
patient’s life and money
 Otherwise they need to pursue guardianship
Documentation

Guardianship
– Legal relationship
 Established by the court
– Requires a hearing with attorneys representing both
sides
 Between guardian and ward
– Guardian has a legal right and duty to care for the ward
 Making personal decisions
 Managing finances
 Or both
 Conservatorship is a term used to refer to the
guardian of an incapacitated adult
Approach to the problem

Make sure the patient’s legal status has been evaluated
before admission
– Make sure if someone says they have a DPOA or guardianship
they actually do-make sure you see the document.
 Many families misunderstand this question
– With certain diagnoses it would be unusual to retain full capacity
 Schizophrenia
 Dementia

However, residents may retain capacity in some realms
and not others
– May still be able to manage their finances well, but have little
insight into their health
Evaluation of Capacity

“…to do what?”
– Make what kind of decisions, carry on what activities
independently
 Manage their own money
 Undergo a colonoscopy
– Knowing the concern makes the approach easier
– Not all decisions the same
 It takes less capacity if there is less risk with either agreeing
or disagreeing to treatment
– Taking a multivitamin
 Deciding about a band-aid on a scratch takes less capacity
than heart surgery
Evaluation

Can be done by any physician
– In many cases the determination is so obvious no further
specialization is needed

If the determination is harder to make
– Mild dementia, executive deficits
– Disputes among caregivers, legal issues exist

Psychiatrist
– Forensic psychiatry is the specialty that deals with this issue

Neuropsychologist
– Tests all functions of the brain in question
 Memory, language, V/S skills, executive function
– Most through evaluation of capacity
Any other options?

Mental health commitment
– Filed with the local Board of Mental Health
– Must have two facets
 Mentally ill
– As defined by the Nebraska State Statutes
– Commonly refer to the current version of the DSM
 Dangerous
– Actively
 Suicide, homicide
– Passively
 Neglect, lack of insight
Any other options?

Emergency guardianship
– Usually for someone in imminent distress
 No DPOA
 Living in squalor, significant life threatening health
problems
– Does not require a hearing
 Usually sets a future hearing date
 Temporary guardian appointed
– Some finesse required in finding the right
person to handle these
Still not sure what to do

Contact
– The Nebraska Long-Term Care Ombudsmen
Program
 (402) 471-2307 or (800) 942-7830
– Adult Protective Services
 Contact local DHHS office
– County Attorney
 County Board of Mental Health
– Attorney General of the State of Nebraska
 (402) 471-2682
Case One

The resident had a guardian
– Who was in agreement with the treatment plan

The nursing home was incorrect in withholding
medical treatment
– In reality the prospect of giving a potentially
combative resident IM meds was concerning to the
nursing home

Could place themselves at legal risk
– Non-treatment could lead to an increase in morbidity
and mortality
Case Two

Two concerns
– Son’s motivation and ability to care for mother
at home
 Financial abuse is also a worry
– Patient’s statement that she wanted to leave
against her doctor’s advice
 Variable upon context
 Cannot state why she would go home against
medical advice
Case Two

A neuropsychological evaluation or psychiatric
evaluation is called for here
– May give some insight into her level of understanding
whether the son is acting in her interest

May require Adult Protective Services
intervention
– If son pushes the idea of taking her home

Guardian likely needed to protect her from DPOA
– Tell son people may question his motives, so getting a
guardian will remove such suspicions
 “Isn’t that expensive?”
Case Three

Can you force someone to take a bath?
– Yes, but do you really want to…
 Understand how often he needs to be bathed
– Certainly there are sound medical reasons he needs to be
bathed, plus day-to-day pericare
 Try and determine what environmental issues there are, if
any
–
–
–
–
Doesn’t like women to bathe him, e.g.
Like any task, slowly talk them through steps
Let him set the schedule
See if family can be there
 If this still doesn’t work
– Ensure safety
– Low dose medication can help with bathing
 But not with daily wash-ups
Review

Case One
– Essential treatment issue
– Guardian overrides “patient rights”

Case Two
– DPOA not acting in her interest
– DPOA should be rescinded for a guardian

Case Three
– Case must be made for health of patient and peers
– DPOA agreed to bathing
– Try and find environmental reasons for
noncompliance