Advance Care Planning and Goals of Care Steven Zweig, MD, MSPH Family and Community Medicine MU School of Medicine The key parts of the chapter • Purposeful observation • Purposeful conversation • Individualized care requires the facility service to fit the resident, rather than the resident goals and needs fitting the facility Epidemiology • 24% of Americans will die in nursing homes – 28% in Missouri. • 30% of people admitted to the nursing home will die within one year. Four step process for Patient-Centered Care • • • • Identifying patient preferences Communication about medical prognosis Defining goals of care Implementing a management plan consistent with those goals Care of the Dying • Identifying patient preferences (Advance care planning) • Communication about medical prognosis (purposeful observation) • Defining goals of care (purposeful conversations) • Implementing a management plan consistent with those goals (caring for the dying resident) Definitions • Advance care planning -- The process of identifying the resident’s personal preferences and values, which - in conjunction with his/her current and anticipated medial status and goals - provide the basis for making decisions about end-or-life care. • Palliative -- Medical, nursing and support services are aimed at ensuring maximum comfort and dignity during the last stages of life. The emphasis is on controlling pain, relieving symptoms, preserving support for resident and family. • Prognosis --The projected outcome of a disease; the life expectancy. Definitions (cont.) • Advance directive -- This term may refer to any direction, either oral or written, made in advance to losing decisional capacity by an individual regarding his/her health care treatment wishes. Written advance directives may include living wills, health care treatment directives, and durable powers of attorney for heath care. • Durable Power of Attorney for Health Care (DPAHC)--A legal document in which a competent person gives another person (called an attorney-in-fact) the power to make health care decisions for him or her if unable to make those decisions. A DPA can include guidelines for the attorney-in-fact to follow in making decisions on behalf of the incompetent person. Definitions (cont.) • Surrogate -- an agent who acts on behalf of a resident who lacks decisional capacity to participate in a particular decision; an appropriate surrogate may be: – Designated by the resident (e.g., in a health care treatment directive, living will an/or durable power of attorney); – The adult who is most involved with the resident and most knowledgeable about the resident’s personal values and preferences; or designated by a court (e.g., a guardian) Missouri Law • Missouri’s basic living will legislation was passed in 1986. The statutory definition of “death prolonging procedures” excluded artificial nutrition and hydration. • After Cruzan in 1991, this statute was revised permitting a durable power of attorney for health care decisions and permitted the withholding of artificial nutrition and hydration only if the person granted that power to the DPAHC Goals of Advance Care Planning • Ensure that clinical care is in keeping with the patient’s preferences when the patient has become incapable of decision making • Improve the health care decision making process – Facilitate a shared decision making process – Allow surrogate to speak on behalf of patient – Respond with measured flexibility to unforeseen clinical situations – Provide education regarding the issues that surround death and dying Goals of Advance Care Planning (cont.) • Improve patient outcomes – Improve the patient’s well-being by reducing the frequency of over treatment and under treatment – Reduce the patient’s concerns regarding the possible burden placed on family and significant other people • Teno JM, Nelson HL, Lynn J. Advance care planning: priorities for ethical and empirical research [special supplement]. Hastings Center Report 1994,24:S32-36. Advance Directive - Disadvantages • Neither physician nor patients likely to bring up • Terminology re: patient status and interventions vague • May not be known or available when needed • Difficult to know when to enforce • May violate value of “sanctity of life” • Could be used to inappropriately withdraw care • May fail to express patient’s current wishes • May reduce physician authority over treatment decisions Advance Directive - Advantages • Promotes physicianpatient-family communication • Extends patient selfdetermination • Affords legal security for physicians • Relieves patients anxiety about unwanted treatments • Reduces potential for family strife over treatment decisions • Increases physician confidence in decisions • Lowers costs by withholding unwanted treatments Health Care Surrogate - Advantages • Can serve as extension of patient’s autonomy • Can respond to changes and ambiguities better than living will • Formalizes common sense approach to patient care • This person may be most knowledgeable about patient’s wishes • Reduces number of interested parties to whom physician must respond Health Care Surrogate - Disadvantages • May not have discussed with patient • May not accurately anticipate or represent patient’s wishes • May create an overwhelming psychological burden • May not represent a durable choice • May have ulterior motives or be subject to influence of others • May demand medical treatment with no hope of benefit When should end-of-life discussions be initiated? Urgent Indications • Imminent death • Talk about wanting to die • Inquiries about hospice or palliative care • Recently hospitalized for severe progressive illness • Severe suffering and poor prognosis Routine Indications • Discussing prognosis • Discussing treatment with a low probability of success • Discussing hopes and fears • Physician would not be surprised if patient died in 6-12 months Regulatory Compliance for Advance Directives • Federal requirement – “Inform and provide written information… concerning the right to accept or refuse medical or surgical treatment and …formulate an advance directive.” (F 156) • Surveyor guide (42 CFR 489.102) – Provide written information about rights under state law – Document whether or not has advance directive (AD) – Don’t discriminate based on whether has one or not – Ensure compliance with AD under state law – Provide staff education re policies on AD – Provide for community education Regulatory Compliance for Advance Directives • Facility is not required to provide care that conflicts with an advance directive or implement an AD the provider cannot implement as a matter of conscience and state law allows such objection • Resident or guardian shall be informed annually of facility policies re emergency and life sustaining care and right to treatment decisions – which if AD present should be reviewed annually with resident or proxy (19CSR 30-88.010 (9)) Goals of Care in the Nursing Home • Four treatment goals are identified in the Resident Assessment Instrument User’s Manual Version 2.0 – – – – Rehabilitation Maintenance Prevention Palliative Care • Care should be consistent with resident’s goals; if condition changes, goals must be again reviewed and changed to address the needs of the resident Ongoing Assessment and Care Plan Revision • Assessment during the early end-of-life period (ex. Resident chooses to not go to the dining room) • Assessment throughout all stages (ex. Identification and treatment of pain and depression) • Assessment in the imminent death stage (ex. Keep comfortable without pushing nutrition and hydration) Goals of Care • Defining quality of life – As you look into your future life, what do you want? – Have you thought about what you would like the last phase of your life to be like? – What is most important for you during that time? Goals of Care (cont.) • Residents without Decision Making Ability – MBC Document • “Surrogates recognized by providers/facilities and not appointed by resident’s advance directive or court order should share in the decision making process with the physician, family, and representatives of the facility” – Ethics consultation Goals of Care (cont.) • Shaping care and settings goals – The interdisciplinary team can make better decisions with the following information: • The clinical condition and prognosis • The personal beliefs and social views (resident or surrogate derived) What to include in most end-of-life discussions? • Goals of treatment – Relative emphasis on life prolongation – Relative emphasis on quality of life • Specifics - range of interventions – Advance directives: living will, health care proxy – Do not attempt resuscitation (DNR) orders – Other therapies: mechanical ventilation, tube feeding, antibiotics, dialysis, hospitalization – Palliative care: pain and other symptoms, relief of psychosocial/spiritual suffering, unfinished business Representative questions to ask: Scripts on describing Goals • Given the severity of your illness, what is most important for you to achieve? • How do you think about balancing quality of life with length of life in terms of your treatment? • What are your most important hopes? • What are your biggest fears? Representative questions to ask: Advance Directives • If you are unable to speak for yourself, who would be best able to represent your views and values? (health care surrogate) • Have you given any thought to what kind of treatment you would want (and not want) if you become unable to speak for yourself in the future? (advance directive) Representative questions to ask: DNR • If you were to die suddenly, that is, you stopped breathing or your heart stopped, we could try to revive you by using cardiopulmonary resuscitation (CPR). Are you familiar with CPR? Have you given thought as to whether you would want it? • Given the severity of your illness, CPR would likely be ineffective. I would recommend that you choose not to have it, but that we continue all potentially effective treatments. What do you think? Representative questions to ask: Palliative Care Symptoms • Have you ever heard of palliative care (hospice)? What has been your experience with it? • Tell me about your pain. Can you rate it on a 10point scale? • What is your breathing like when you feel at your best? How about when you are having trouble? Pathways • Intensive Pathway. Life prolongation is the prime goal, with maintenance of physical and cognitive function second and maximization of comfort third. This translates into all medically indicated procedures, including cardiopulmonary resuscitation, intubation, and ICU care. • Comprehensive Pathway. Prime goal is maintenance of physical and cognitive function, with prolongation of life second and maximization of comfort third. Attempted CPR would be excluded, as would ICU care, because both of these interventions have a low probability of success and, when they do not result in death, commonly result in functional decline. Pathways • Basic Pathway. Prime goal is maintenance of physical and cognitive function, with maximization of comfort second and life prolongation third. Nursing home-based care for all medical conditions and substitution of medical treatment for surgical treatment whenever possible. • Palliative Pathway. Prime goal is comfort, with maintenance of physical and cognitive function second and life prolongation third. Nursing home-based care exclusively, keeping diagnostic tests to a minimum. • Comfort Only. Only goal is comfort. Treatment is exclusively to relieve symptoms, e.g., pneumonia would be treated with oxygen, acetaminophen, and morphine, not antibiotics. – From the Hebrew Rehabilitation Center for Aged, Boston MA MDS and Goal Setting • Section J5c “end stage disease, 6 months to live.” – Assessor should observe resident and consult staff, especially attending physician, whose certification of prognosis should be documented • Section A10 – Advance directives • Multiple MDS items reflect change of condition – Change in cognition, communication, mood, ADL function, urinary continence, care needs, pain, weight, pressure ulcers, hospital, ER, or special procedures • Clinical change should merit significant change assessment Federal regs on “highest practicable well-being” • Fundamental regulatory goal is: – “…for the resident to receive the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being in accordance with the comprehensive assessment and plan of care.” • This does not mean that regardless of the resident’s condition, the facility must continue to provide rehabilitation or restorative goals, but that there is a comprehensive assessment and plan. However… • Increased dependency near end of life cannot result in isolation – a predictor of abuse and neglect. Rather, dependency may result in increased amount of staff time to care for the resident. • The ongoing assessment, care plan development, care plan implementation, and revision are the elements that direct the decision of avoidable vs. unavoidable outcomes (e.g. weight loss, pressure ulcers). Therefore, the key is assessment, planning, and implementation • Purposeful observations and conversations should be documented in the resident’s record • All members of the team should collaborate to translate the resident’s wants into care goals and interventions • Symptoms should be assessed, interventions initiated, and evaluation should be documented – all need to be informed about changes in care • There is always something that can be done.