My Life, My Treatment, My Plan

1. Client Empowerment: Using Psychiatric Advance Directives SCDMH Peer Support Continuing EducationJune 28, 2013Katherine M. Roberts, MPH Director, SCDMH Office of Client Affairs My Life, My Treatment, My Plan

2. David likes the beach, his dog, to paint, read, fish and hang out with buddies. He also has schizophrenia. He knows he needs to take medication to help control the symptoms of his illness. Complying with this is hard for him, the meds make him feel zoned out and sleepy, give him dry mouth and as he puts it makes it hard to focus. Consequently, David sometimes “accidentally – on purpose forgets” to take them. His symptom's start to come back and because of the symptoms David often refuses to take any medication at all for any reason. The result is always the same; he usually gets picked up by the police - a scuffle ensues, and David winds up in the ER or in jail. Both outcomes are bad – if he goes to the ER they “shoot him up with a bunch of mind numbing drugs to try and control him”, if he goes to jail his symptoms get worse, resulting in a lot fights - sometimes he starts them but more often he is the victim of another inmate. Eventually he winds up receiving emergency psychiatric care but in the interim a lot of damage has been done. He knows he shouldn’t do this and that there has to be a better way to handle this problem.

3. Susan has bi-polar disorder and she takes her medication as prescribed faithfully everyday. She knows what happens if she doesn’t, she decompensates quickly and winds up getting committed to the hospital. There is just one problem, sometimes the medications just stop working and symptoms re-appear quickly often resulting in a hospitalization. Susan has a hard time convincing anyone that she just “isn’t complying” and isn’t doing this on purpose. She understands her illness, wants and is willing to accept responsibility but dreads having people think she does on purpose. Sometimes she feels being homeless or going to jail would be better than being hauled off to the emergency room, given medications to sedate her but do little else and being committed against her will. If people would just listen to her and let her explain it might be better but she rarely sees the same people twice and those she does see thinks she is just trying to cover up the fact she “refused to take her medications.” Susan feels that she has enough to deal with and that there must be a way she can try and protect herself.

4. Mary has a long history of depression and PTSD. She often feels that she that should just end it all even though she does not really want to die. The impulse to her harm herself often overwhelms her and she knows she needs a safe place to get help. Mary does not want to go back to the hospital however – she finds the whole process traumatizing. Sometimes she thinks it makes things worse to go back. How can she tell them that when people touch her she is doing her best not to yell or swing at them – they just think she bad attitude had a violent temper. No one wants to work with her she can tell by the way the act towards her. Then there are the medications – some of the ones they use make her feel worse – she tries to make them understand but when she is really depressed or scared or both she just can’t talk right. Besides, whose going to believe her she’s in a mental hospital after all – they will just say she is “trying to manipulate to process.” There has to be a better way to deal with this than this!

5. Some Common Ground Whether you have psychiatric diagnosis or not most people: • don’t like being told what to do • object to being held against their will • value the right to make decisions for themselves Some think of this as a freedom, a liberty or right, some see it as independence, but we all see self-determination central to our idea of dignity.

6. Background Historically, PADs are a variation of medical advance directives (ADs), legal instruments that typically offer three types of self-directed planning of one's own health care in anticipation of a later time of decisional incapacity: (1) a competent individual's informed consent to future treatment; (2) a statement of personal values and general preferences to guide future health care decisions; and (3) the entrusting of someone to act as a proxy decision maker for future treatment. In 1990 the Federal Government enacted the Patient Self-Determination Act. The intent is to: • Provide an opportunity for adults to express their desires about medical treatment in advance • Balance the power between patients and providers • Educate the entire population on advance directives. The federal law requires hospitals and other providers (including psychiatric hospitals and other mental health providers) and health plans to maintain written policies and procedures with respect to advance directives.

7. What are PADs and how can they help you? Psychiatric Advance Directives or PADs permit you to determine what treatment you will receive if and/or when you lose the capacity to make treatment decisions for yourself because of illness. Basically it is a written statement of your treatment preferences and other wishes and instructions. There are two kinds of PADs: • Instructive PADs, in which an individual gives instructions about the specific mental health treatment desired should the individual experience a psychiatric crisis. • Proxy PADs, in which the individual names a health care proxy or agent to make treatment decisions when the individual is unable to do so.

8. In South Carolina, the Department of Mental Health gathered a group of clients together to help create a PAD for clients to complete that details your instructions and wishes for your mental health treatment in times when you are too ill to make your wishes known. The combined wisdom of the clients and staff who participated in developing this document represents more than 750 years of recovery experience. You can use a PAD to assign decision-making authority to another person who can act on your behalf during times of incapacitation. This is a legal document should be respected by private providers inside and outside of the state of South Carolina.

9. Why Would You Want to Fill One Out If You're Not Sick? It can help to improve communication between you and your doctor, you and other staff and you and your family members involved in your recovery. Having a psychiatric advance directive may • Shorten a hospital stay or help you avoid one all together • Gain more control of your treatment • Improve the likelihood of receiving helpful, informed care • Consent to or refuse certain treatments • Enhance understanding and communication with your treatment providers and family members

10. What’s Usually Included in a PAD? The information that may be included in a PAD varies by state. In general, PADs allow you to agree to, refuse and give your preferences about such as: • Psychiatric medications • Hospitalization • Alternatives to hospitalization • Seclusion and restraint • ECT (electroconvulsive therapy) One of the more important aspects of a PAD is that it can help to explain why you made the choices you did so your doctors and others will understand your reasoning. It’s to your advantage for them to know the basis for your preferences. For instance, you might explain that certain medications have given you severe side effects, that you prefer a certain hospital because of its therapeutic programs, or that certain self-care methods have helped you through mental health crises in the past.

11. What Specifically does the SCDMH PAD Include? • A statement of Intent – your desires/instructions • Psychiatric History including: • Diagnosis, • Doctors and case managers name • Who you want informed • Agents name if one was chosen • Your wishes, instructions, special provisions and limitations for your mental health treatment and care including: • Choices Regarding Emergency Interventions • Choices about Medication(s) • Choices about Personal Interventions • Choices Regarding Release of Information about My Health

12. Are there any special rules that apply to a PAD in SC? Yes, there are five things to remember: • S.C. does not recognize Statements of Desires without appointment of an agent/surrogate under a Health Care Power of Attorney. Forms for a Health Care Power of Attorney can be found at: http://www.state.sc.us/dmh/client_affairs/advance_directive.htm • Your case manager or other mental health worker cannot be your agent. • It is important that you understand that in an emergency situation, a doctor can do something different from what you have stated in your Declaration for Mental Health Treatment, but the doctor must go through certain steps to do this.

13. Five things… • It is up to you or your agent to make sure that the hospital has a copy of your Declaration for Mental Health Treatment. You may want to have a copy placed in your outpatient record so that outpatient staff are aware of what hospital or crisis stabilization approaches you would prefer, if you are not able to express your own choices at the time. • You can substitute the Crisis Portion of your WRAP (Wellness Recovery Action Plan) Plan if you have completed one and so desire. You should attach a copy of your WRAP Crisis Plan to this form.

14. What is a Health Care Proxy or Agent?A Health Care Proxy is someone you appoint to make your treatment decisions when you cannot make them yourself. Naming a proxy may be optional; some states require it. Some states only let you appoint a proxy; you may not give your own treatment preferences. In those cases, however, the individual usually may give instructions directly to the agent. • Generally, a Health Care Proxy can be any capable, competent adult (18 years or older) who is not your health care provider. Often you can name more than one proxy, though only one can be active at a time.

15. What does a Health Care Agent/Proxy Do?If you become unable to make your own treatment decisions due to psychiatric symptoms, your Health Care Agent/Proxy would make them for you following your instructions about your desire for care spelled out in your PAD. The Agent/Proxy should follow the instructions and make the same decisions you would about medications, hospitalization, health care provider, ECT and anything else you have covered in the PAD. Remember the law in S.C. does not recognize Statements of Desires without appointment of an agent/surrogate under a Health Care Power of Attorney.

16. Who can I appoint to be my Health Care Power of Attorney? You can appoint any capable and competent adult who is 18 years or older but they cannot be providing your health care. You can appoint more than one Health Care Agent. However, only one can serve as your Health Care Agent at a time. You must indicate your order preference. When does my Health Care Agent make treatment decisions for me? When your health care provider determines that you are incapable of making decisions, your health care agent will be consulted about your treatment. If your health care provider is not available, then the attending physician or eligible psychologist decides when to consult your health care agent. The decision to consult your health care agent must be put into writing.

17. If I am unable to make decisions, can I choose someone to speak for me? Yes. This is done through a document called a Health Care Power of Attorney, or a Durable Power of Attorney for Health Care, sometimes also called a health care agent, surrogate, or proxy decision maker. You can appoint any capable and competent adult who is 18 years or older who is not your health care provider. What if I want to change my Agent/Proxy? You can change or revoke your Agent/Proxy choice at any time as you are considered “capable” at the time of change.

18. If I am involuntarily committed will my PAD be followed? Involuntary commitment to a treatment facility takes priority over what your PAD says about hospitalization. However, your preferences regarding medication and other aspects of treatment while hospitalized should be followed even while you are involuntarily committed. Are there reasons my PAD might not be followed? Yes, your PAD would not be followed: • If it conflicts with “generally accepted community practice standards.” • If the treatments requested are not feasible or available. • If it conflicts with emergency treatment. • If it conflicts with applicable law.

19. Can a provider refuse to follow an advance directive? Technically yes, under certain conditions: • If permitted under state law, providers can refuse to implement provisions of an advance directive, based on conscience objections. The facility must make clear when instructions of an advance directive would not be followed due to a conscience objection and: • • Provide a clear and precise statement of limitations if the provider cannot implement the advance directive based on conscience; • • Clarify any differences between institution-wide conscience objection and those that may be raised by individual physicians; • • Identify the State legal authority permitting a conscience objection, • • Describe the range of medical conditions or procedures affected by the conscience objection.

20. Once I have created a PAD, what do I do with the document? • You should give it to your mental health care provider who will make it a part of your medical record. • You should give a copy to agent. • You might want to consider giving a copy to a trusted friend or family member. • You should keep a copy for yourself. Do I have to use the SCDMH PAD? No, you may use any for you – remembering that to enforce your directives you must have appointed an health care agent

21. Does the SCDMH have a policy on Advanced Directives? Yes, policy 850-05 (5-100) Advance Directives states that while competent, individuals may anticipate the possibility of later incapacity and may prepare Advance Directives stating their desires regarding the provision or withholding of medical care in such event. It is the Department's policy to encourage the use of advance health care directives and to honor Advance Directives. However, no Departmental facility shall condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance health care directive.

22. The purpose of this directive is to implement the "Patient Self Determination Act" and the State's public policy to encourage the execution of advance health care directives. The Patient Self Determination Act requires that each hospital and nursing facility receiving federal Medicare or Medicaid funds must provide information to every patient/resident, about the facility's policies concerning implementation of Advance Directives, and distribute a written description of State law concerning Advance Directives to the patient/resident. It is also the declared policy of the State of South Carolina to promote the use of Advance Directives as a means of encouraging patient self-determination and avoiding uncertainty in a health care crisis.

23. A look at the Directive Developed for Mental Health Clients by Mental Health Clients in SC

24. My Declaration for Mental Health Treatment (Psychiatric Advance Directive) Summary If I am in crisis or in case of a psychiatric emergency: 1. My case manager’s name is: __________________________________________ 2. Doctors I want notified are: A. ________________________________________________ B. ________________________________________________ C. ________________________________________________ 3. Persons I want notified are: A. ________________________________________________ B. ________________________________________________ C. ________________________________________________ 4. ___ I have completed a Psychiatric Advanced Directive and/or a WRAP Plan and wish treatment providers follow the instruction I have laid down in it to the fullest extent possible. 5. ___ I have appointed an agent to make decisions for me in the event I am not capable of communicating my preferences for treatment at this time. That person is: Agents Name: _______________________________________________________ Address: ___________________________________________________________ City: __________________________ State:_______ Zip:_____________________ Day Phone: ___________Night Phone:____________ Cell Phone______________ Agent’s Acceptance: I hereby accept the appointment as agent for (your name) _____________________ Agent’s Signature: ____________________________________________________

25. These Are My Wishes, Instructions, Special Provisions and Limitations in My Mental Health Treatment and Care (__________________________ your name) I. My choice of Treatment Facility or other alternative to hospitalization if it is medically necessary for me to have 24-hour care for my safety and well being. A. _____ If I am to go into a hospital for 24-hour care, I choose to go to the following hospitals: 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ B.____ If my condition requires 24 hour psychiatric care but it is not necessary to be in a hospital, I choose to have this care in programs and facilities that are considered alternatives to psychiatric hospitals listed below: 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ C. _____I choose to receive crisis stabilization at the following programs/facilities: 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ D._____I do not want to be committed to the following hospitals or programs/facilities for the following reasons (optional) if I need psychiatric care. Facility’s Name and Reason (optional): 1. ________________________________________________ 2. ________________________________________________

26. II. My Choices Regarding Emergency Interventions: If I engage in behavior that requires an emergency intervention (such as seclusion, restraint or medications), I choose the interventions in the order listed below. Most preferred is 1, next is 2 and so on until there is a number by each option _____seclusion _____physical restraints _____seclusion & physical restraints _____medication by injection _____medication in pill form _____liquid medication _____other__________________________________________________ Put your initials by this section if you agree; if you don’t agree, leave it blank. _____If after considering the choices I have listed above, the doctor attending me decides to use medication to tranquilize me quickly (rapid tranquilization) in an emergency situation I expect the doctor to use medication that reflects the choices I have stated in this Declaration. The choices I agree to concerning emergency medications do not give consent for using these medications for non-emergency treatment.

27. III. My Choices about Medication(s): A. I prefer medication given to me:  Orally  Pill  Liquid  Injection B. The following medications have been the most helpful to me in the past and I would consent to taking them, if appropriate: 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ C. If I am hospitalized and am not considered able to consent or refuse medications related to my mental health treatment, my wishes are as follows: (I) _____I consent to and give permission to my agent to consent to the use of the following medication(s): 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ (II) _____I specifically do not consent to and I do not give permission for my agent to consent to me taking the following medications, no matter what their brand name or generic equivalent: 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________ (III)_____I consent to the medications that are considered appropriate by Dr. ____________________________ whose address and phone number is: Address ______________________________________________________ City _______________________________State: ____ Zip:______________ Phone Number:_________________________________________________

28. D. I am concerned about the side effects of medications. I wish to be told about the possible medication side effects if any of these side effects listed below are possible or to be told how these side effects can be managed. _____tardive dyskinesia _____loss of sensation _____motor restlessness _____seizure _____blurred vision _____cognitive (thinking) problems _____sleep problems _____aggressiveness _____tremors _____nausea/vomiting/diarrhea _____neuroleptic malignant syndrome _____muscle/skeletal rigidity _____dizziness _____mood swings _____sexual dysfunction _____other F. I am allergic to the following medications: (medication and reaction if known) 1. ________________________________________________ 2. ________________________________________________ 3. ________________________________________________

29. IV. My Choices about Personal Interventions: A. Others will know when I am having a hard/difficult time or when I am upset if I am; ______________________________________________________________________________________________________________________________________ B. Approaches that I and others can use to help me when I’m having a hard time or when I’m expressing anger inappropriately: (Check all that apply)  voluntary time out in my room  voluntary time out in a quiet room  sitting by staff  talking with a peer  talking with staff  having my hand held  going for a walk  punching a pillow  writing in a journal  lying down  listening to music  reading  watching TV  pacing the halls  calling a friend  talking with my therapist  pounding some clay  exercising  deep breathing exercises  taking a shower  praying  meditation  singing  getting a hug  yelling or screaming  being silent  being outside  calling crisis hotline  being given an opportunity to be heard and validated without being offered advice/suggestions  talking to (name) (phone)  recreational activities:  other  other

30. C. Special Wishes about Touch/Body Space (check all that apply) ____I do not wish to be touched. ____I wish to be asked permission before being touched. ____I wish to be told the reason why I am being touched. ____I wish special attention be given to allowing me extra personal body space. ____I do not need special attention given to my body space. ____Other:________________________________________________________ V. My Choices Regarding Release of Information about My Health If I am hospitalized, I voluntarily give permission for the following information about me to be given by the hospital where I am currently admitted to the people listed below. I realize that I may also have to sign a release of information for the hospital, but this Declaration for Mental Health Treatment should be followed concerning the limits of information provided to each person listed. The information can be given in writing or verbally. 1. Name of Individual: _________________________________________________ Address: ___________________________________________________________ City: _______________________________State:______________Zip:__________ Day Phone: ____________________ Night Phone: __________________________ Type of information to be released: ___Diagnosis ___Discharge Plan ___Medications ___Payment Status ___Treatment Plan ___Other __________________________________________________________

32. My Life, My Treatment, My Plan Client Empowerment: Using Psychiatric Advance Directives SCDMH Peer Support Continuing EducationJune 28, 2013Katherine M. Roberts, MPH Director, SCDMH Office of Client Affairs