The Right to Refuse Treatment

1. The Right to Refuse Treatment Brenda Keller, M.D. Thomas Magnuson, M.D.

2. 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

3. 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

4. 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

5. 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.”

6. 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

7. 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

8. Problematic refusals • Eating • Bathing • Ambulating • Medications • Other therapies and treatments • Appointments • Toileting

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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?”

24. 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

25. 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