Building a Person-Centered ADVANCE CARE Planning Program. Barbara J. Smith, LBSW, MS, CHC, NHA Carolyn Stramecki, MHSA, CPHQ

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Building a Person-Centered ADVANCE CARE Planning Program Barbara J. Smith, LBSW, MS, CHC, NHA Carolyn Stramecki, MHSA, CPHQ

Objectives Describe components of an advance directive document required to meet Michigan standards Explain processes required to meet the standards of F-155 and F-309 Discuss components of the conversation to introduce advance care planning

Its time to shine. Skilled Nursing has been doing Advance Care Planning great for a long time o We are the level of care that does it well o We are person-centered in practice o We build relationships with our residents and families o We can move these skill sets into our rehabilitation areas

Healthcare Reform and ACP Managed Care, ACO s, CCN s etc. are looking at quality outcomes and value o A robust ACP program reduces the likelihood of end of life rehospitalization, increases use of palliative care, and improves patient and family satisfaction with care o SNF s should track the number of LTC clients with completed advance care plans and DMPOA s as a quality metric o A goal in rehabilitation should be to introduce ACP to incoming clients, especially those with chronic diseases

Why is advance care planning important? One in four elderly will eventually need someone to make endof-life decisions about their medical care. Patients who had end-of-life discussions preferred medical treatment that focused on relieving pain and discomfort over life-extending therapies, and many have a DNR. NEJM, April 1, 2010 Those with advance directives often receive less aggressive treatment when death is near. JAMA, 8, 2008, Vol. 300, Patients with advance directives were much less likely to die in the hospital. JAMA, Nov 9, 2011.

The Gap 60% of people say that making sure their family is not burdened by tough decisions is extremely important 80% say that if seriously ill, they would want to talk to their doctor about end-of-life care 82% say it s important to put their wishes in writing 70% say they prefer to die at home 56% have not communicated their end-of-life wishes 7% report having had an endof-life conversation with their doctor 23% have actually done it 70% die in a hospital, nursing home, or long-term care facility

Advance Directives Requirements and misconceptions

Constitutional Rights Right to refuse medical treatment Right to privacy Right to self-determination These rights are: Independent of legislative enactment No court approval required Continues after a person is no longer competent

Federal Law Incompetent patients have the same rights as competent patients but these rights are exercised differently o The way in which the right is executed is subject to state law

Patient Self-Determination Act 1990 Healthcare orgs required to provide patients information on rights upon admission : o The right to facilitate their own health care decisions o The right to accept or refuse medical treatment o The right to make an advance health care directive Facilities must inquire as to whether the patient already has an advance health care directive, and make note of this in their medical records. Facilities must provide education to their staff and affiliates about advance health care directives. Health care providers are not allowed to discriminately admit or treat patients based on whether or not they have an advance health care directive

Michigan Law 1990 Durable Power of Attorney for Healthcare (PA 312) Living wills not recognized in statute, but can serve as evidence of wishes Acknowledgements of granting authority for life-sustaining treatment decisions o I understand this can or will allow my death Witnessing two witnesses, may not be staff or volunteers, relatives, will beneficiaries May name alternate advocates May revoke advocate(s) at any time Specific language around Patient Advocate responsibilities Patient Advocate must sign acceptance

Michigan: Duties of the Proxy Limited to legally acceptable options. Shall act consistent with the patient s best interests. The known desire of the patient, expressed or evidenced while the pt is able to participate in medical treatment decisions are presumed to be in the pt s best interests. A person may revoke his or her acceptance to the designation at any time and in any manner sufficient to communicate intent to revoke.

Effective AD documents Written for what level of understanding Ease of use o Intuitive vs easy to follow instructions vs need an advanced degree to complete White space Assists in understanding role of healthcare agent Best practice: a combination document that includes medical decisions and designation of patient advocate

Common Problems Confusion of financial versus healthcare decision-makers Living will do not legally name a patient advocate Missing clinician signatures for activation of patient advocate Internal care plans do not transfer Patient Advocates do not understand their role ADs not specific to what patient wants Contain ambiguous statements or phrases that are difficult to interpret in the clinical setting ADs completed years prior not reflective of current wishes Patient not ready to discuss

15 Limitations of Advance Directives AD may not be available when needed o Person did not complete an AD o AD not transferred with patient Most ADs do not prompt discussion of relevant decisions and are not specific o No provision for treatment in the nursing home or home o May not cover topics of most immediate need AD may be difficult to apply to emergent situation AD does not immediately translate into medical orders

F 155 The resident has the right to refuse treatment, to refuse to participate in experimental research, and to formulate an advanced directive. *42CFR 183.109(b)(4)

FOUR INTENTS 1.Establishing and maintaining policies and procedures regarding these rights. 2. Informing and educating each Resident about these rights and facility policies regarding these rights. 3. Helping each Resident to exercise these rights. 4. Incorporating each Resident s choices regarding these rights into the Resident's treatment, care, and services.

Let s Do Some Mapping and Processing! Mapping out the functions required will help identify gaps in your current processes Mapping together will help us learn techniques and strategies others have utilized to get the work done When we map we can identify opportunities to improve and eliminate waste

INTENT #1: POLICIES& PROCEDURES Who determines at admission if the Resident has an AD? How is this documented? If they don t, what do you do? What triggers are in place to go back to check periodically? If the Resident doesn t have capacity, what is your procedure? How do you make wishes part of the plan of care? How do you assure all staff are aware of Resident wishes? What is the process if you or the attending physician can not provide the care the resident wishes? How will you incorporate on-going review as part of the plan of care?

INTENT #2: INFORMING& EDUCATING What materials do you provide to the Resident or family regarding their right to refuse medical care and to complete an advance directive? Where do you document this is done upon admission? Is there a designated person responsible? What do you do for after hour admissions?

INTENT #3: ASSISTINGRESIDENTS If the Resident has an AD where do you keep a copy? If he/she doesn t bring it how do you get it? Who checks back? How do you transfer the document with the resident if they go to the hospital? If the resident wants to complete an AD what is your process to assist them? Do you have trained facilitators? Do AD wishes get translated into medical order sets? Do AD wishes get translated to Care Plans?

INTENT #4: INTEGRATING RESIDENT CHOICES How do you inform Residents/families of health status, treatment options, and outcomes in language they understand? Where is this documented? Are you including documentation about future healthcare choices even if an AD has not been executed? Are you having discussions regarding care wishes at each care conference and documenting? What is your process for identifying when a resident no longer has capacity to make medical decisions?

F 309 End of Life ~ Each resident must receive and the facility must provide: ~ Necessary care and services to attain or maintain the highest practicable (possible) physical, mental, and psychosocial well-being, in accordance with the comprehensive assessment and plan of care.

Components of Care Documentation of on-going discussions of Resident s medical status and desires for care Documentation of assessment of Resident s continued competency in decision making Right to Hospice Care Coordination of care with hospice agencies Plan of care must be updated to reflect Resident s current care needs and desires Are symptoms being managed? Is the Resident pleased with symptom relief? Documentation of interventions and their effectiveness

Is EOL Care Managed at your Facility? Is there a process in place to assure Resident and Family wishes are known and are met at end of life? How do you identify those Residents entering End of Life? Who is responsible for those discussions? What does your documentation look like? If you looked at a chart of the last person who died in your facility: o Would the care provided be described in the care plan, the physician orders? o Would staff and family describe the care the same?

The ACP Conversation

What are the desired outcomes of Advance Care Planning? Ideally to know and to honor a patient s informed plans, by 1. Creating an effective plan, including: a) selecting a well-prepared health care agent or proxy when possible, and b) creating specific instructions that reflect informed decisions that are geared to the person s state of health. 2. Having these plans available to the treating physician. 3. Incorporating plans into medical decisions when needed, wherever needed.

Advance Care Planning Conversation Facilitating the process of understanding, reflection, and discussion Why is this important? What is our opportunity? Copyright 2007-2013 All Rights Reserved. Gundersen Medical 28

29 Facilitate to promote to expedite to assist to advance

30 Three Specific Decisions Who would you want to make decisions for you if you couldn t make them yourself? What would be the goals of treatment if you permanently lost the ability to meaningfully know who you were, who you were with, or where you were? Do you have any religious, personal, or cultural views that would affect treatment choices?

31 Question #1 Living Well Interview: Top 3 Questions What activities or experiences are most important for you to live well at this time in your life? o In what way do you feel you could make this time especially meaningful to you?

32 Question #2 Living Well Interview: Top 3 Questions What fears or worries do you have about your illness or medical care? o For example, do you feel that there are needs or services that you need to discuss?

33 Question #3 Living Well Interview: Top 3 Questions Who or what helps you when you face serious challenges in life? o Do you have any religious or spiritual beliefs that help you deal with difficult times?

Framework for Decision-making Engage individuals in understanding the process of ACP and need for understanding, reflection, and discussion: Explore understanding of condition and treatment decisions to uncover gaps in information Assist in understanding information to make informed decisions regarding specific decisions (ex: CPR) based on goals of treatment and benefits and burdens o What are acceptable and unacceptable outcomes? Explore understanding of the Patient Advocate, and need to involve others Develop a follow-up plan

35 Life-sustaining Treatments Understanding the potential, benefits, burdens, and outcomes of life-sustaining treatments CPR Intubation/ventilation Nutritional support Kidney dialysis Antibiotics IV hydration Choices: When to start, When to forgo or withhold, How and when to maintain comfort

36 Encourage Understanding How would you explore the patient s understanding of his/her condition? Of his/her medical decisions?

37 Provide Information What type of information would you or do you provide?

38 Encourage Reflection How do you help a patient when he/she is unsure of the decisions? How do you help them reflect?

39 Encourage Discussion How do you encourage discussion? With physician? With family? Others?

To sum up Its our job to help patients make informed decisions This must be done in a way that allows the patient to reflect, understand, discuss, etc, and. o explore their fears and concerns o make decisions consistent with values Coercion and scare tactics are never acceptable Document, document, document Including family/patient Advocates goes a long way in their acceptance and understanding