Resident Rights vs. Protective Oversight Cheryl Parsons, RN, LNHA 2012 1
Resident Rights vs. Protective Oversight I don t care if I choke to death. I want a real glass of water! 2
Resident Rights vs. Protective Oversight The Resident does not have a guardian and has not been declared incompetent or incapacitated 3
Resident Rights vs. Protective Oversight Discharge and ignoring the protest are not the only answers. 4
Resident Rights vs. Protective Oversight The right answer is to allow resident self determination, after risk and potential consequence education, while continuing protective oversight based upon a policy and a set of tools which guide deviation from your standard policy or acceptable standards within the industry. 5
Resident Rights vs. Protective Oversight Policy guidance is included to guide your facility in your handouts. 6
Self-Determination Objectives: 1. Understand the right to self-determination. 2. Understand psychosocial impact when that right is impeded or ignored. 3. Re-define Protective Oversight around Self- Determination. 4. Developing Policy to Guide Tough Decisions when Standards/Policy are Challenged by the right to self-determine. 7
Self-Determination You have F-155 Right to Refuse Treatment Case Study in your handouts. Please pull it out and let s read it. 8
Self-Determination 1) What are the psychosocial ramifications to the resident in this case? 2) Does the daughter have the right to demand that the resident s diet continue as is to protect her from choking? 3) Is there negative physical harm as a result of the resident s choices, history and preferences not being considered? 4) Has the resident demonstrated that cognitively she understands the situation and despite that does not want a modified diet? 9
Self-Determination 5) Psychosocial guidelines allow a reasonable person in like circumstance to make a determination as to the potential for psychosocial harm when the resident either can t communicate or does not have the cognitive ability to understand or answer questions appropriately. In the survey process the surveyor is the reasonable person. In this case it is you. What do you think the potential for psychosocial harm is here? 6) The facility has not specific policy on when a resident refuses based on self-determination. The administrator is maintains that the staff must wait on the shared risk agreement before considering any change in the diet. What about the time issue? Does it contribute to the potential negative psychosocial and physical harm? 10
Self-Determination 7) What indicators are present that the resident is unhappy with the current diet? 8) What is the resident asking us to do that is of concern in exercising her right to selfdetermination? 9) Should she be allowed a regular diet with no texture consistency changes? 10)What happens if she does choke? 11)What happens if that choking ends with aspiration pneumonia and ultimately her death? 11
Self-Determination The first step in developing your policy and procedure for these situations is guidance on how to determine the resident s ability to make decisions for him/her self and assuring that the policy looks at the whole picture to remove doubt regarding that ability. 12
Self-Determination Self-Determination: The right to decide for self, the ability or right, to make our own decisions, without interference from others. 13
Self-Determination The ability to self-determine must be on the basis of the ability to understand the consequences of our decisions or demonstration of competency or cognitive ability. So the first step in allowing any resident to self-determine is an assessment of their cognitive ability and looking at guardianships or durable power of attorney s for health care decisions. 14
Self-Determination 1) Does this resident have a guardian? 2) The daughter has been named in the advanced directive as the durable power of attorney but does she have any authority at this time? Why? Why not? 3) Has the resident demonstrated cognitive capacity to understand the risk or her decision not to eat or drink a diet with modified consistency? When? 15
Self-Determination 4) Do the MDS and other assessments indicate that she is fairly competent and for the most part cognitively intact? Consider cognitive assessment as further documentation. Disciplinary notes should reflect her cognitive ability and not conflict with the facilities overall assessment of that ability. 5) All departments have to know that her inability to speak to make her needs known right now is not a reflection of her cognitive ability! 16
Self-Determination Cognitive Patterns Section C The MDS 3.0 Cognitive Patterns section includes two assessment tools look to Chapter 3(C) of the MDS 3.0 RAI Manual contains detailed instructions, examples, and tips for conducting both interviews. The Brief Interview for Mental Status (BIMS) is a screener to help detect cognitive impairment. The BIMS total score is highly correlated with Mini-Mental State Exam scores and suggests the following: 13-15: cognitively intact 8-12: moderately impaired 0-7: severe impairment If staff judge the BIMS should not be conducted, they assess the resident based on their observations. 17
Psychosocial Impact Ranking in the leading reasons that consumer view nursing home as the last resort is the fear of having their choices limited by a rigid institutional environment. We can change that we just haven t done it. When our choices or ability to make decisions for ourselves is challenged or in the worst case ignored there is psychological and social impact. 18
Psychosocial Impact When we imagine such a circumstance for ourselves we can understand that we might have resistance, angry, frustration, depression, a feeling of loss of control and even violation. There is no respect for who I am or was what did I do to deserve this punishment? 19
Psychosocial Impact Decisions such as when to get up, when to go to bed, what to eat and where, when to bath and how, who to socialize with and when we take for granted but what emotions are brought to mind when we imagine someone else telling us when those things will happen? What examples in our case have the potential to remove the resident s self-direction from herself? What do we know about her history, routines and preferences that indicate this choice was important to her? What is the potential negative psychosocial impact of in-action? 20
Psychosocial Impact There have been a number of studies done that indicate repeated psychosocial needs being ignored or neglected cause severe psychosocial damage. Such as disengagement when little by little the world they find themselves in is not their own and becomes unbearable to the point of physical, psychological and social isolation. Shutting out the world they find themselves in and retreating to a safe place deep inside where they allow no one, not even family. It is a safe retreat and one that no one can challenge 21
Psychosocial Impact You are in a restaurant that is rumored to be very good! You order a salad, steak cooked medium well and baked potato with a glass of wine. When it is served you have a pureed salad, a blackened steak and French fries. Your first response is what? 22
Psychosocial Impact The waiter lets you know that you do not have the right to make the choice of how what you ordered is served or cooked and what you see is what you get due to the chef s order. What are the emotions? What will you do? Will you eat it? Will you get up and leave marking the place off your list? Is this tip worthy (tippable) service? Why not? 23
Psychosocial Impact You have a choice our residents do not always have. You can get up walk out and go find what you would like to eat, marking the place off your list and never going back. What choice does the resident have? Imagine the emotions if this were the only place you could take your meals? Then what? 24
Psychosocial Impact How long should it take to incorporate the residents desire (right to self-determine) into practice, even when that practice poses a risk to the requirement that we have for protective oversight? What would our response be at the restaurant if the waiter said, We will try to incorporate your choice of how you want your meal cooked, presented, etc. into the menu. However, it will take a couple of months? 25
Psychosocial Impact Your policy should direct a time line which is determined to be reasonable for adjusting to the resident s right to self-determine when it conflicts with protective oversight. It should also address how to compromise with a resident during that decision time. Educate the resident to the facilities efforts to meet their choice and why it can t be done immediately. Offer alternatives that might hold everyone over until a plan for deviating from standard practice or policy can be completed. 26
Psychosocial Impact For instance the dietary manager learns that she likes chocolate milk shakes. The Dietary consultant comes up with a fortified nutritional shake which meets consistency requirements. The resident says, Yes I will drink the shake until we get this mess straightened out but only for so long! The entire meal is served per the physicians order but now includes this fortified milk shake and staff knows when she refuses any of the other items to remind her of her favorite being on the tray and encouraging her to drink that. 27
Psychosocial Impact Now we are managing the risk, compromising with the resident and working steadfastly to put a plan in place that allows her right to selfdetermine without compromising our responsibility for protective oversight. 28
SOM (CMS GUIDANCE TO SURVYEORS) TERMS Define interference: Hindrance or obstruction that prevents a natural or desired outcome. Involvement in something without any invitation or justification i.e. she deeply resents staff interference in her decision to not drink thickened liquids. Define Coercion: The use of force or threats to make somebody do something against his or her will. (They continue to serve me, force me, to try and eat this stuff and I told them no. I don t want that.) 29
SOM (CMS GUIDANCE TO SURVYEORS) TERMS Define Discrimination: Unfair treatment of one person or group, usually because of prejudice about race, ethnicity, age, religion, or gender. Define Reprisal: A strong or violent retaliation for an action that somebody has taken. Define Autonomy: Existence as an independent moral agent exercising a philosophy of personal independence and the capacity to make moral decisions and act on them. Define Choice: Opportunity or right to choose between different things or a decision to choose someone or something. 30
SOM (CMS GUIDANCE TO SURVYEORS) TERMS Define Hamper: To restrict the free movement or progress of somebody or something. Define Compel: To force somebody to do something or to make something happen by force. (We have compelled the resident to eat the appropriate diet as ordered by the physician but she continues to refuse. Lying to a resident, No, I did not add thickener to the coffee you can drink it. The staff member was observed to put thickener in the coffee and then told the resident she did not.) Define Retaliate: To deliberately harm somebody in response or revenge for a harm he or she has done. 31
Re-define Protective Oversight around Self-Determination Giving Protection: Preventing somebody or something from being harmed or damaged, or designed or intended for this purpose. Regulatory Definition: An awareness twenty-four hours a day of the location of a resident; the ability to intervene on behalf of the resident; supervision of nutrition, medication, or actual provision of care; and the responsibility for the welfare of the resident, except when the resident is on voluntary leave. Self-Determination: The intent of this requirement is to specify that the facility must create an environment that is respectful of the right of each resident to exercise his or her autonomy regarding what the resident considers to be important facets of his or her life. 32
Developing Policy to Guide Tough Decisions As provided under State law, a resident who has the capacity to make a health care decision and who withholds consent to treatment or makes an explicit refusal of treatment either directly or through an advance directive, may not be treated against his/her wishes. 33
Developing Policy to Guide Tough Decisions When we ignore or give lip service only to direct refusals in the interest of protective oversight we are violating the right to refuse or to self-determination. When we allow self-determination that conflicts with physicians orders, industry standards or our policy and procedures without further action we are violating protective oversight. 34
Developing Policy to Guide Tough Decisions Whenever refusal of protocol is considered, the facility must explain to the resident how the use of the facility protocol, policy or procedure would treat the resident s medical symptoms and assist the resident in attaining or maintaining his/her highest practicable level of physical or psychological well-being. In addition, the facility must also explain the potential negative outcomes of not following protocol. Alternatives to the protocol should be considered and discussed with the resident. 35
Developing Policy to Guide Tough Decisions In the case of a resident who is incapable of making a decision, the legal surrogate or representative may exercise this right based on the same information that would have been provided to the resident. (See 483.10(a)(3) and (4).) (If it does not violate state law! Here is where you may need legal advise.) 36
F-155 Resident right to refuse treatment 483.10(b)(4) -- The resident has the right to refuse treatment, to refuse to participate in experimental research, and to formulate an advance directive as specified in paragraph (8) of this section; and 37
F-155 Resident right to refuse treatment Interpretive Guidelines 483.10(b)(4) Treatment is defined as care provided for purposes of maintaining/restoring health, improving functional level, or relieving symptoms. Advance directive means a written instruction, such as a living will or durable power of attorney for health care, recognized under State law relating to the provision of health care when the individual is incapacitated. As provided under State law, a resident who has the capacity to make a health care decision and who withholds consent to treatment or makes an explicit refusal of treatment either directly or through an advance directive, may not be treated against his/her wishes. 38
F-155 Resident right to refuse treatment A facility may not transfer or discharge a resident for refusing treatment unless the criteria for transfer or discharge are met. (See 483.12(a)(1) and (2).) If the resident is unable to make a health care decision, a decision by the resident s surrogate or representative to forego treatment may, subject to State law, be equally binding on the facility. 39
F-155 Resident right to refuse treatment The facility should determine exactly what the resident is refusing and why. To the extent the facility is able; it should address the resident s concern. For example, a resident requires physical therapy to learn to walk again after sustaining a fractured hip. The resident refuses therapy. The facility is expected to assess the reasons for this resident s refusal, clarify and educate the resident as to the consequences of refusal, offer alternative treatments, and continue to provide all other services. 40
F-155 Resident right to refuse treatment If a resident s refusal of treatment brings about a significant change, the facility should reassess the resident and institute care planning changes. A resident s refusal of treatment does not absolve a facility from providing a resident with care that allows him/her to attain or maintain his/her highest practicable physical, mental and psychosocial well-being in the context of making that refusal. 41
F-242 Self-Determination and Participation 483.15(b) - Self-Determination and Participation The resident has the right to-- (1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care; (2) Interact with members of the community both inside and outside the facility; and (3) Make choices about aspects of his or her life in the facility that is significant to the resident. 42
F-242 Self-Determination and Participation Intent: 483.15(b) The intent of this requirement is to specify that the facility must create an environment that is respectful of the right of each resident to exercise his or her autonomy regarding what the resident considers to be important facets of his or her life. This includes actively seeking information from the resident regarding significant interests and preferences in order to provide necessary assistance to help residents fulfill their choices over aspects of their lives in the facility. 43
F-242 Self-Determination and Participation Interpretive Guidelines: 483.15(b) Many types of choices are mentioned in this regulatory requirement. The first of these is choice over activities. It is an important right for a resident to have choices to participate in preferred activities, whether they are part of the formal activities program or self-directed. However, the regulation at 483.15(f) Activities, F248 covers both formal and self-directed activities. For issues concerning choices over activities, use Tag F248. 44
F-242 Self-Determination and Participation The second listed choice is schedules. Residents have the right to have a choice over their schedules, consistent with their interests, assessments and plans of care. Choice over schedules includes (but is not limited to) choices over the schedules that are important to the resident, such as daily waking, eating, bathing, and the time for going to bed at night. Residents have the right to choose health care schedules consistent with their interests and preferences, and the facility should gather this information in order to be proactive in assisting residents to fulfill their choices. 45
F-242 Self-Determination and Participation For example, if a resident mentions that her therapy is scheduled at the time of her favorite television program, the facility should accommodate the resident to the extent that it can. If the resident refuses a bath because he or she prefers a shower or a different bathing method such as inbed bathing, prefers it at a different time of day or on a different day, does not feel well that day, is uneasy about the aide assigned to help or is worried about falling, the staff member should make the necessary adjustments realizing the resident is not refusing to be clean but refusing the bath under the circumstance provided. The facility staff should meet with the resident to make adjustments in the care plan to accommodate his or her preferences. 46
F-242 Self-Determination and Participation NOTE: For issues regarding choice over arrangement of furniture and adaptations to the resident s bedroom and bathroom, see 483.15(e)(1), Accommodation of Needs, Tag F246. 47
F-242 Self-Determination and Participation According to this requirement at 483.15(b)(3), residents have the right to make choices about aspects of their lives that are significant to them. One example includes the right to choose to room with a person of the residents choice if both parties are residents of the facility, and both consent to the choice. 48
F-242 Self-Determination and Participation If a facility changes its policy to prohibit smoking, it must allow current residents who smoke to continue smoking in an area that maintains the quality of life for these residents. Weather permitting; this may be an outside area. Residents admitted after the facility changes its policy must be informed of this policy at admission. (See 483.10(b)(1)). 49
An Eight Point Strategy Inform, train and educate staff regarding applicable laws, regulations, policies and procedures. 50
An Eight Point Strategy Use the RAI and other assessment tools to develop person-centered care plans for providing services and supports that address The residents capacities, Their need for information, education and training, The limitations on their capacities that involve the facility s duty to provide protective oversight. 51
An Eight Point Strategy Develop clear policies and procedures that address the issues of Right to self-determination and right to refuse medical treatments when such right interferes with the physician order, acceptable medical and/or care standards, consultant recommendations, and/or other facility policy and procedure Train staff regarding these policies. Provide staff an accessible source for advice regarding the operational problems they confront. 52
An Eight Point Strategy Develop clear policies and procedures that establish the resident s history, preferences and routines as they impact the issue of self-determination or refusal. How did the resident approach this issue at home or if new to the resident how would they approach the issue at home? How would they like to approach the issue here, now that they have the support needed to address the issue? Consider how you or your staff would want it if it were you. This helps us to focus on personhood and applies the reasonable person standard. In light of these answers to the previous three questions how should we do it here and how? 53
An Eight Point Strategy Whenever providing needed information, education, and training to residents regarding their expression of the right to self determine, clearly define the potential for foreseeable adverse consequences up to and including death if applicable, Address alternatives from foreseeable adverse consequences that might be more acceptable and yet still maintain the physician order, standard and or facility policy. Clearly define how the facility will continue to monitor the resident for adverse consequences and Define if the risk increases or indeed a foreseeable adverse consequence develops that the resident is agreeable to come back and re-visit the plan of care. 54
An Eight Point Strategy Provide adequate supervision for residents who may be at risk for serious harm by exercising their right to self-determination or refusal. 55
An Eight Point Strategy Develop clear polices on How staff will continue to monitor the risk and/or adverse consequences to the right to selfdetermine or refuse. How staff will report changes in risk or adverse consequences How the care team will address increased risk or actual adverse consequences if and when they occur. 56
An Eight Point Strategy Develop polices on notification and on-going involvement of: Resident Family or responsible party Guardian Physician Medical Director Consultants Direct Care Staff Legal Counsel 57
Facility Policy Guidance Purpose: To affirm the facility s support for the residents right to self-determine or refuse when such determination or refusal contains foreseeable adverse consequences or actually results in adverse consequences that threatens the residents health, safety and overall well-being, conflicts with acceptable industry standards, physician orders or facility policy and procedure and overall protective oversight. 58
Facility Policy Guidance Policies: The facility supports and places no unreasonable conditions on the residents ability to selfdetermine or refuse treatments. The facility supports and places no unreasonable conditions on the residents ability to selfdetermine or refuse activities. The facility provides individualized situational support for the residents right to self-determine and the right to refuse. 59
Facility Policy Guidance The facility provides appropriate and on-going risk-related health information relating to the resident s determination to modify or refuse treatments or activities to the resident and their appropriate healthcare surrogates. The facility provides staff training and education regarding this policy, the procedures and the role of staff in relationship to this policy, and related procedures 60
Facility Policy Guidance Notwithstanding its policy of providing support for its residents right to self-determine or refuse treatments or activities, some resident determinations or refusals may be so problematic or interfere with the rights of other residents that they cannot be supported. Upon admission, the facility informs the resident and the residents primary contact person of the existence of this policy. 61
Facility Policy Guidance Upon admission, the facility seeks information, through assessment, from the resident or resident s primary contact person that may be helpful in anticipating and supporting the resident s right to self-determine or refuse certain treatments or activities. The facility will inform the resident and primary contact person of any adverse consequences as a result of self-determination or refusal. 62
Facility Policy Guidance The facility s care plan process includes guidance to the staff for implementation of risk monitoring, reporting adverse consequences and triggered review of the self-determination or refusal of residents if risk increases or adverse consequences occur. 63
Tools Deviation from Standard Tool F-155 Essential Systems of Quality Resident Refusal Communication to the DR. Care Plan Development for RR Key Care Plan Approaches for RR Monitoring Guide for RR System Audit Tools Check List for facility Self-determination Management Resident Rights vs. Protective Oversight Summary and Post Test (This is also on-line at MANHA for your staff) Organizational Commitment to Self-Determination 64
Conclusion Questions Comments 65