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

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