The Ethics of Autonomy and Risk

1. The Ethics of Autonomy and Risk AHFSA Annual Conference July 5, 2019 Michael A. Gillette, Ph.D. (434)384-5322 mgillette@bsvinc.com http://www.bsvinc.com

2. The Dignity of Risk

3. The Dignity of Risk“Why Risk Matters” Intrinsic Value: The Thrill of Taking Chances Instrumental Value: The Ends Justify the Means

4. The Dignity of Risk“Risky Choices” Person Centered Planning Recovery Principles and SUD and MH

5. Two Opening Cases

6. Clinical Ethics Case Studies“Don’t Let Him Drink” Mr. H is a 79-year-old long-term care resident who suffered a stroke resulting in left side hemiparesis and difficulty swallowing. According to a modified barium swallow, Mr. H can only safely tolerate a level two diet of thickened liquids. Mr. H objects to the dietary restrictions and currently receives a level three mechanical soft diet. Nevertheless, he desperately wants access to thin liquids, especially a morning cup of coffee, and to some other contraindicated foods. A mental health evaluation was performed and although it indicates a possibility of some underlying dementia, it clearly states that Mr. H is not at imminent risk of causing harm to self or others and that he is able to understand the alternatives, risks and benefits associated with eating potentially dangerous foods. Mr. H’s children indicate a desire that the resident’s diet be restricted, but Mr. H is adamant about his desire to eat at least certain types of food and drink that are not consistent with a limited diet. This ethics consult was requested to examine the ethical implications of restricting access to food for an individual who has capacity to make his own healthcare decisions.

7. Ethics in Long-Term Care“Killing Him With Kindness” Mr. B is an 83-year-old patient on skilled care. Mr. B suffers from pyriform carcinoma, Diabetes and PVD. He has a history of aspiration pneumonia and he was admitted for treatment of malnutrition. Mr. B’s wife has been staying with him and has set up a lawn chair in his room upon which she sleeps. On numerous occasions that have been well documented, Mrs. B has engaged in actions that, although calculated to benefit the patient, have created substantial risk of harm. Mrs. B has taken out the patient’s sterile trach tube, altered the settings on his gastrostomy tube feedings, covered his trach to the point of compromising his airway, poured water into his trach, adjusted and replaced dressings on wounds and applied topical medications on her own. Staff are concerned that although Mrs. B means well, her continued presence on the unit is not in the patient’s best interest. This ethics consult was requested to discuss the appropriate manner by which risks to this patient should be controlled.

8. The Structure ofMoral Reasoning

9. The Structure ofEthical ArgumentThe Process of Moral Reasoning The Default Assumption The Burden of Proof Casuistic Exploration Application to the Current Case

10. Individual ChoiceBasic Assumptions 1) What is the default assumption regarding an adult individual’s right to direct his/her own healthcare? 2) Where does the burden of proof rest? Does the patient have to justify control, or do those who would intervene have to justify wresting control away from the individual? 3) What would it take to satisfy the burden of proof?

11. Individual ChoiceThe Burden of Proof 1) All other things being equal, individuals have an autonomy right to control their own care. 2) The burden of proof rests on the party that would restrict an individual’s autonomy right. 3) The burden of proof can be satisfied on the basis of only two classes of argument: prevention of harm to self (paternalism) and prevention of harm to others (distributive justice).

12. The TwoParadigms Explained:Harm To Self

13. Paternalism An intervention is ‘paternalistic’ whenever the justification for the restriction of an individual’s freedom is calculated to be in their own best interest.

14. Requirements For Paternalism Paternalistic interferences with clients’ liberty of action are justified only when: • The client lacks the capacity for autonomous choice regarding the relevant issue • There is a clearly demonstrated clinical indication for the treatment or restriction under consideration • The treatment or restriction under consideration is the least restrictive alternative that is reasonably available and capable of meeting the client’s needs • The benefits of the treatment under consideration outweigh the harms of the interference itself ---------------------------------------------- *Paternalistic interventions must attempt to advance the values of the individual whose freedom is restricted.*

15. The Ethics of Patient Refusal “There’s Nothing Wrong With Me” Mr. L is a 60-year-old patient who carries a diagnosis of schizophrenia, NOS with fixed delusions. He has been hospitalized on a number of occasions for treatment of infections associated with a large mass on his right thigh that is suspected to be squamous cell carcinoma. Mr. L has no insight into his illness and refuses surgical intervention to remove the mass. He believes that he can treat the growth with topical salves and nicotine. Given the extent of tumor growth, the surgical intervention being contemplated is an above the knee amputation, but the surgeon is reticent to provide surgery over the patient’s objections. An ethics consult was requested to determine whether or not court authorization for treatment over the patient's objections should be obtained.

16. Diminished CapacityBasic Assumptions The two most important things to remember at the beginning of any interaction with a patient surrounding capacity issues are: 1) All adults should be presumed to have capacity until they are explicitly found to lack it, 2) An individual cannot be found to lack capacity simply because s/he carries a particular clinical diagnosis.

17. Diminished CapacityThe Definition of Capacity In order for a patient to have diminished capacity, s/he must meet at least one of three criteria: 1) The inability to understand information about the decision that needs to be made (ARBs) 2) The inability to use the information, even if understood, to make a rational evaluation of the risks and benefits involved in the decision 3) The inability to communicate by any means

18. Diminished CapacityIncapacity Determinations There is an important difference between a clinical finding on incapacity that can be documented by the attending physician, and a legal adjudication of incompetence. A determination that a patient has diminished capacity can apply to a particular healthcare decision, a set of healthcare decisions, or all healthcare decisions. It is essential that a clinician making a determination that a patient has diminished capacity be able to define the scope of the finding and its basis. A note must be set forth in writing to indicate something like “This patient is unable to make decisions of type X because of deficit Y.”

19. Diminished CapacityImportant Concepts Capacity is task specific, so incapacity must be assessed relative to the particular decisions at hand. Patients can maintain capacity in certain decisional areas while simultaneously lacking it in others. The amount of capacity necessary to make any particular decision is relative to the complexity of the decision and the risks associated with the decision. Therefore, clinicians should be very careful when assessing the inability of patients to make complicated high-risk choices and to verify that the patient lacks a sufficient level of capacity to take responsibility for those choices.

20. The TwoParadigms Explained:Harm To Others

21. Distributive Justice An intervention is justice-based whenever the justification for the restriction of an individual’s freedom is that it is calculated to protect a victim of the individual’s action other than him/herself.

22. Requirements For Justice Justice-based interferences with clients’ liberty of action are justified only when: • The client behaves in some manner that places others at risk and • Those placed at risk have not provided valid consent to be placed at risk (either by choice or incapacity) and either • The risk of harm to others is more significant than the harm generated by restricting the client’s freedom and is not protected by an identified right (deterrence) or • The client forfeits his/her right to liberty by transgressing a clearly defined social expectation (punishment)

23. Ethics and Dementia“The Silver Fox” Mr. S is an 82-year-old gentleman who presented in his primary care physician's office requesting that his Foley Catheter be removed. When asked why he wanted the Foley removed, Mr. S replied that he "wanted to have sex". The attending believes that Mr. S could tolerate the removal of his catheter for a short period of time, and agrees that Mr. S has the right to engage in a sexual encounter if he desires to do so. The attending asks Mr. S with whom he intends to have sex and Mr. S replies that "there are any number of women on the third floor who would be happy to oblige". The attending knows that Mr. S is correct in his assumption, but she also knows that the third floor of the nursing home where Mr. S resides is the Alzheimer's unit. Many of the women on that unit are married, but don't remember that information. Furthermore, they are women who would not have consented to a casual sexual relationship prior to onset of their illness, but they have lost many of their inhibitions secondary to their dementia.

24. The Standard of Care

25. The Ethics of Staff Refusal “Hoarding and the Overdose” Mr. P currently receives treatment with Clozapan but, based on how he presents for counseling sessions, his therapist is concerned that he may not be compliant with his meds. Nevertheless, Mr. P asserts that he has exhausted his supply of medications and requests a new prescription. The therapist notifies the physician of his concerns, but the physician writes a new prescription anyway. The therapist is worried that Mr. P is hoarding his medications and is a risk for a future overdose. How should he respond?

26. The Ethics of Patient Refusal“The Limits of Provider Support” Staff never have an obligation to commit malpractice Optimal Care Sub-Optimal/Super-Standard Care Sub-Standard Care

27. The Ethics of Autonomy and Risk:Case Studies AHFSA Annual Conference July 5, 2019 Michael A. Gillette, Ph.D. (434)384-5322 mgillette@bsvinc.com http://www.bsvinc.com

28. Placement Issues“She Will Just Drink Again” Ms. D is a 70-year-old resident who was recently moved to the memory impairment unit when her ADL skills took a dramatic decline. After a couple of weeks in the unit, however, Ms. D improved greatly and it is appears that many of her functional challenges were secondary to an exacerbation of her ETOH abuse. The family now reports that Ms. D had a long history of alcohol abuse. The attending psychiatrist is very concerned that if Ms. D goes back to a less supervised setting, she will re-engage in heavy drinking. On this basis, he refuses to write an order to release her from the memory impairment unit.

29. Pain and the Standard of Care “I Don’t Want to Knock Her Out” Ms. F is an 84-year-old hospice participant who carries a diagnosis of dementia and is being treated for an unstable femur fracture. Ms. F is in the end-stage of a deteriorating condition and the family has decided not to provide aggressive life-prolonging care. She exhibits significant signs of physical discomfort and the attending prescribed morphine to cover her pain. Ms. F’s son, who carries durable power of attorney for healthcare, refuses to allow the use of morphine because he is concerned that it will cause a substantial sedating effect.

30. Family Control“I Want My Shot” Ms. E is an 85-year-old resident who has a diagnosis of dementia but is oriented X3, lucid, able to converse on complex subjects and scored a 27 out of 29 on a recent mini-mental status exam. Ms. E recently requested an influenza inoculation and clearly indicates that she understands that this is a special injection for the current swine flu outbreak and that she will also want to receive the seasonal swine flu inoculation when the time is appropriate. Ms. E admits to no clinical contraindications for receiving the vaccine. She indicates that she has always received flu shots and secured them for her children, and that she wants this flu shot now. Ms. E’s daughter, who is listed as her responsible party but who does not carry a durable power of attorney for healthcare, does not want the facility to provide the injection on the grounds that this treatment would only prolong Ms. E’s life and that pneumonia is not a bad way to die. Ms. E insists that this decision should be hers alone and that she does not understand why her daughter would not want to her to receive the inoculation.

31. Ethical Issues in Mental Health“Peeh Yew!” Mr. G is a 46-year-old resident of a group home who refuses to bathe, sometimes for as long as two weeks. After only a few days, Mr. G produces a remarkably bad odor. He does not have skin breakdown or any other health risk associated with failure to bathe and since he is a large and powerful man, none of the other residents challenge him regarding his odor. When he is in the common living area, other individuals move to the far end of the hall because Mr. G’s odor is so bad. Efforts to cajole bathing have worked intermittently, but now the smell is so bad that it disrupts life in the home. May staff forcefully bathe Mr. G? If so, how?

32. Ethics At the End of Life “It’s Just A Little Lie” Mr. H is an 82-year-old patient with moderate dementia who has been determined to lack capacity to make her own healthcare decisions. Ms. H suffers from a variety of health challenges, and has been determined to be terminally ill secondary to stage four lung cancer. Her family has enrolled her in hospice, but they are adamant that she not be told her diagnosis or prognosis. They demand that if Ms. H asks whether or not she is in hospice, staff should lie to her and tell her only that she is receiving home health services. How should staff handle the potential disclosure of information to an inquisitive patient with diminished capacity?

33. The Ethics of Client Refusal “Concern Without Evidence” Ms. W is a 53-year-old client who is very passive and minimally engaged during her therapeutic encounters. The treatment team indicates that she seems to be stable psychiatrically and that she has not complained of any new difficulties or challenges. Ms. W receives treatment with Clozaril and Lithium, and although she does allow the minimum amount of blood work necessary to support the use of Clozaril, she is unwilling to allow any more substantial blood work. More extensive lab work was done two years ago, and at that time diagnostics indicated a possible risk for hypothyroidism and high triglycerides. Ms. W has lost a little weight lately, based on subjective observation because she does not allow herself to be weighed during office visits, but she is still well within normal body weight and she does not demonstrate any other outward signs of possible metabolic complications secondary to her medications. Staff are concerned about the need to secure more comprehensive blood work in order to rule Ms. W out for complications, but she refuses to submit to additional blood draws. This ethics case consultation was requested to determine an ethical course of action for a patient who does not demonstrate any clear signs of health problems but might be at risk for complications.

34. Ethical Challenges “The Mobile Home” Ms. X is a 71-year-old patient who carries an AXIS I diagnosis of delusional disorder. Reports indicate that she has lived in her mini-van for the past ten years. Ms. X showers at the YWCA, cooks on a camp stove, and while she does move the van from place to place, she parks at night in particular locations that are well-lit. Ms. X was detained by police after she called regarding a stalker but she has stabilized and is approaching discharge readiness. She indicates a desire to return to her mini-van but staff members are concerned that this placement might be unsafe. Ms. X insists that she needs to move back to her mini-van for delusional reasons (she indicates that she is safer from internal parasites and stalkers in the van). An ethics consult was requested to determine the ethical implications of either supporting her choice to move back into her van or paternalistically intervening.

35. “I’m a Collector” Privacy and Pathology Ms. L and her husband have lived in Assisted Living for the past two years and during that time concerns have repeatedly been raised regarding Ms. L's excessive hoarding behavior. Difficulties regarding hoarding became so pronounced that the Ethics Committee was asked to prepare a general policy level discussion of the issue. Subsequent to the completion of the policy work on hoarding, staff worked diligently with Ms. L and they were able to help her clean out her apartment significantly and to satisfy health and safety concerns. However, Ms. L's hoarding behavior has continued and the progress made previously has now been reversed. Staff are concerned that the hoarding behavior creates an unsafe living environment that must be mitigated, that it is significant of a mental illness that would benefit from treatment, and that inappropriate amounts of nursing staff time are now being expended on housekeeping tasks. Since efforts to refer Ms. L to counseling and to assist in maintaining a clean apartment have failed, this ethics consult was requested to identify and examine the ethical implications of further intervention.

36. The Ethics of Harm Reduction“I Don’t Want To Quit, I Just Want To Slow Down” Mr. H is a 24-year-old individual who is seeking outpatient services. He complains of hearing voices, feeling anxious, and wanting help to reduce his daily alcohol intake. He recently moved to the area and wants to transfer all of his treatment services including medication to our agency. He was living alone in another state and now moved in with his mother. Mr. H is diagnosed with Schizoaffective Disorder- Paranoid Type, Anxiety Disorder, and ETOH Dependence. He was involuntarily civilly committed twice in the past three years for suicide attempts via overdose but currently denies any suicidal ideation. Mr. H drinks alcohol daily, usually .75liters of liquor and 4 40oz beers. He does not want to stop drinking alcohol, but he does want to decrease the quantity he uses. His treatment goals are to decrease the voices he hears, decrease his anxiety, and decrease his alcohol intake. Is it ethical to develop a treatment plan for Mr. H that seeks to achieve his stated goals when a reduction of alcohol use but not the elimination of alcohol use continues to present serious risks of harm for Mr. H?

37. Surrogate Control “Give It A Try” Mr. W is a 37-year-old patient with profound ID who had a PEG placed several months ago secondary to dysphagia. Mr. W pulled his tube and caused sufficient damage to the stoma that surgery indicates that it will require several days to a week to attempt replacing the G-tube. In the meantime, the hospitalist wants to initiate NG-tube feedings to keep Mr. W properly nourished. Mr. W’s mother, who is his next of kin, refuses to allow the NG-tube because she believes that it will make it too difficult to manage Mr. W’s secretions. She would like a trial of pureed P.O. feedings, but staff are concerned about possible aspiration. Should a pureed diet be provided?

38. Autonomy and Capacity “A Troubling History” Mr. D is a 74-year-old patient who had been hospitalized under a commitment order eight months ago for suicidal ideation. Mr. D has been encephalopathic intermittently over the past few days but is currently lucid. He has been diagnosed with a brain mass and indicates that he does not want surgery to remove the mass. Mr. D’s family is adamant that he have the surgery, and they refer to his recent mental health hospitalization as evidence that he is unable to make this life-and-death decision. Should Mr. D have neurosurgery over his objections?

39. Supporting Information

40. Requirements For Paternalism Paternalistic interferences with clients’ liberty of action are justified only when: • The client lacks the capacity for autonomous choice regarding the relevant issue • There is a clearly demonstrated clinical indication for the treatment or restriction under consideration • The treatment or restriction under consideration is the least restrictive alternative that is reasonably available and capable of meeting the client’s needs • The benefits of the treatment under consideration outweigh the harms of the interference itself ---------------------------------------------- *Paternalistic interventions must attempt to advance the values of the individual whose freedom is restricted.*

41. Requirements For Justice Justice-based interferences with clients’ liberty of action are justified only when: • The client behaves in some manner that places others at risk and • Those placed at risk have not provided valid consent to be placed at risk (either by choice or incapacity) and either • The risk of harm to others is more significant than the harm generated by restricting the client’s freedom and is not protected by an identified right (deterrence) or • The client forfeits his/her right to liberty by transgressing a clearly defined social expectation (punishment)

42. The Ethics of Patient Refusal“The Limits of Provider Support” Staff never have an obligation to commit malpractice Optimal Care Sub-Optimal/Super-Standard Care Sub-Standard Care