1. Sheila Otto BSN,M.A.

2. Recognize the essential elements of capacity Identify the tension between protecting vulnerable populations and respecting their choices Describe how the Family Health Care Decisions Act applies to each of the cases discussed

3. On what basis would we question any of the presented cases? We dont usually question the decisions if they are in agreement with the teams recommendation We allow patients to make bad decisions every day In health care, the consequences can be weighty

4. There is a presumption that adults have capacity Capacity waxes and wanes Capacity is TASK SPECIFIC Responsibility of the attending physician to assess Psychiatry is helpful for assessing mental illness, not needed for capacity

5. To treat patients to the best of ones ability to improve or maintain health status when possible The MD makes a recommendation and it is then up to the pt/surrogate to make a choice Ethical principles of patient autonomy and beneficience are sometimes in tension

6. The patient must be able to understand the information presented to appreciate the information as it applies to him/herself to reason with information so as to weigh treatment options in a logical process to convey a choice

7. Capacity Risks, benefits, alternatives and side effects of proposed treatment (including doing nothing) must be discussed Pt. must make a choice free of coercion Pt must communicate choice (pt or surrogate)

8. 16yr old with recurring Hodgkins lymphoma. Physician recommends higher dose chemo and radiation Refusing treatment Parents want him to get treatment

9. Age of 16…18 is age of majority. Is there something magical about 18? What is the prognosis with or without treatment? Should the parents decision hold? Assent of minor needed How exactly would you administer treatment in the face of pts refusal Age, maturity, experience, prognosis Legal involvement if needed

10. Is the minor emancipated? (not in our case) Does the minor have capacity? Does s/he object to the determination of capacity? (CONSULT ETHICS REVIEW COMMITTEE) If s/he has capacity and refuses treatment, providers will be reluctant to force treatment Legal recourse is suggested With minors, ASSENT is essential if they have the ability to grasp their situation

11. Mrs. White, nursing home resident, presents with fever and pneumonia diagnosis ABX ordered She refuses No surrogates

12. Fever, electrolyte imbalance, unfamiliar surroundings can all alter her ability to process information What is the goal of her treatment? How invasive would the treatment be? Is her disease life threatening? Is the treatment in her best interest?

13. If the pt. is determined to have capacity, her consent or refusal stands In this case, her capacity may wax and wane. Ideally she consents when she has capacity If the timeliness is key to successful treatment (ABX) and the care is routine, the MD may authorize based on pts best interest If the tx involves major medical care the MD may authorize based on best interest standard with the concurrence of another MD

14. Any treatment, service or procedure to diagnose or treat an individuals physical or mental condition where gen. anesthesia is used or which involves significant risk or significant invasion of bodily integrity requiring an incision, producing substantial pain, discomfort debilitation or having a significant recovery period or which involves the use of physical restraints or psychoactive medications except when provided in post-op care or in response to acute illness, administered over 48 hrs or in an emergency

15. 82 yr old admitted with mitral valve insufficiency, surgery recommended Pt refuses, believing he just has a cold Son thinks dad is not able to make informed decision Should we allow son to overrule dad?

16. Reasoning for refusal is faulty Valve replacement is a major procedure which can be refused/accepted based on pts values This pt has a surrogate (son) who is rightfully questioning dads capacity The surrogate can make a decision based on dads longstanding values/preferences or Without evidence of that, his best interest

17. If the pt is assessed and found not be have the capacity to make a thoughtful decision re. valve surgery, someone else should make decisions for him. Is their a health care agent documented? If not, based on the law, there is a surrogacy list that allows a family member or friend to do so If the pt. has shared his values, those should be followed If not, the best interest standard should prevail

18. Guardian or person legally designated to make health care decisions Spouse or domestic partner Son or daughter (18 yrs of age or older) Sibling (18 or over) Close friend

19. 43 yr old presents to the ED with weakness and fatigue Found to have low HCT and high WBC MD recommends admission; pt refuses PMHx significant for paranoid schizophrenia Can pt. make a bad decision to leave or are we obligated to protect her from herself?

20. Is she currently psychotic? How is psychiatric illness relevant to current situation? Are her reasons for wanting to leave legitimate? What are the potential harms related to signing out? Is there room for negotiation? Can she be persuaded to stay with some help in making arrangements for the dog? On what basis could you keep her against her will?

21. If this patient is assessed to have capacity, she is able to be discharged even if against medical advice A patient with a mental illness is NOT automatically determined to lack capacity If there is a question, a psychiatry consult would be in order If the pt had been transferred from a mental health facility, notify the director of the facility and the mental hygiene legal service

22. Bobby is a high functioning young man with Downs syndrome admitted with chest pain MD feels he should go to cath lab Who should sign consent?

23. Should the provider automatically look for a third party to consent? On what basis? Bobby lives somewhat independently, how would we evaluate his ability to make a sophisticated decision to consent to cardiac cath? Who else might one want to talk with? Chest pain can be a sign of an emergent and even life threatening event, so the stakes are higher

24. Persons with developmental disabilities are covered under Surrogate Procedure Act 1750 B Capacity should be determined by a physician or psychologist who is either employed by a developmental disabilities service office or been employed for a minimum of 2 yrs to render care/service in a facility/program operated, licensed or authorized by OPWDD, or has been approved by the commissioner of OPWDD Family or guardians can play an essential role in medical decision making but for life and death decisions specific criteria must be met

25. Gina is admitted with sepsis and the recommended course of treatment is 7 days of iv ABX. She is well known to staff as a crack abuser and freely admits that she needs to go back on the street to earn $ for drugs Refuses rehab; wants to sign out AMA Should staff get an involuntary commitment?

26. Do pts. under the influence have capacity? Do these pts. have capacity once they are no longer high? Are these pts making sound choices, based on an understanding of the risks and benefits? Is the need for the drug overriding their capacity? On what basis could you force treatment?

27. Persons with substance abuse issues may well lack capacity on admission to a hospital, but after a period without the drug/ETOH, they can be assessed to have capacity. Once they have capacity, it is common for them to make bad decisions based on their need to get more substance This coercive pressure is significant, but there is no legal mandate to protect them from themselves.

28. Assessment of capacity is the responsibility of the attending physician This assessment may have to occur on multiple occasions as capacity waxes /wanes Capacity is TASK specific Pts. Are allowed to make bad decisions Persons with mental illness or developmental disabilities do not AUTOMATICALLY lack capacity but special attention to their vulnerable status must be paid

29. The FHCDA has given us guidance on selection of surrogates for pts who lack capacity Withholding and withdrawing life sustaining treatment requires meeting specific criteria MDs are now authorized under the law to authorize treatments for pts who lack capacity and who lack a surrogate.