The Elephants in the Room: Advance Care Planning and Capacity Declara3on Valerie Zamudio, MD Advanced Fellow, Geriatric Medicine UCLA Bureau of Health Professions Faculty Training Program March 25, 2015
Elephant #1 ADVANCE CARE PLANNING
Objec3ves Advance Care Planning Demys3fy conversa3ons about death and dying Review epidemiology Discuss how doctors die differently Iden3fy tools that can be used to facilitate advance care planning in a primary care sehng Discuss reimbursement
Bedside Rounds 90- year- old man h/o esophageal cancer s/p XRT, odynophagia, dysphagia, recurrent aspira3on PNA, hearing and visual impairment Values his independence Lives alone in apartment with cat ; gets help from friends and neighbors AdmiXed for esophageal myotomy but it was canceled 2/2 in- pa3ent aspira3on PNA and decondi3oning so got PEG instead Plans of Care Primary team arranged transfer to in- pa3ent geriatric rehab unit aker PEG inser3on Medical team in rehab unit planned to discharge to home but Vet had a ques3on that opened the door to a very interes3ng conversa9on. To be confnued.
Advance care planning (ACP) improves outcomes for the seriously ill Higher rates of advance direc3ve comple3on Increased likelihood that clinicians and families understand AND comply with end of life (EOL) wishes Reduced hospitaliza3on at EOL Receipt of less intensive treatment at EOL Increased u3liza3on of hospice services Increased likelihood of dying in preferred place Higher sa3sfac3on with the quality of care Lower risk of stress, anxiety, and depression in surviving rela3ves Reduces cost of EOL care without increasing mortality
In America, death is inevitable and undoubtedly unpleasant in this world nothing can be said to be certain, except death and taxes. Benjamin Franklin, in a leker to Jean- BapFste Leroy, 1789
Why are we not talking about IT? Politics If we talk about death, it is like we are calling death to us. The time isn t right. Our society values youth, and young people don t die. Religion They re/i m not ready. General I do not want my family to think that I m giving up. I m not a quitter! Death is a taboo
Domains of Concern Fears of the Sick (and everyone else) Pain & Symptoms Prolonga9on of Dying Loss of Control Burden of Dying Strained Personal Rela9onships may become realized when advance care planning does NOT take place.
should include Planning planning for life for death...
but it oken (tragically) does not. When is the most appropriate time to let conversations about death out of the closet?
De- Mys9fica9on involves: Addressing fears of the sick with pa3ent and family early Normalizing the advance care planning experience Iden3fying personal goals to direct care preference selec3on
The Disconnect Do not want to burden family with tough decisions Prefer to die at home Want to speak with doctor about EOL care Say it s important to document EOL wishes in wri3ng Sayers Doers 60% 56% Source: Survey of Californians by the California HealthCare Founda3on (2012) 70% 30% Source: Centers for Disease Control (2005) 80% 7% Source: Survey of Californians by the California HealthCare Founda3on (2012) 82% 23% Source: Survey of Californians by the California HealthCare Founda3on (2012) EOL = end of life
How Doctors do IT by Ken Murray November 30, 2011
Aside from doctors The following pa3ent characteris3cs are associated with a higher likelihood of ACP and advance direc3ve (AD) comple3on: Older Americans Caucasian Americans History of chronic disease, including AIDS and cancer High disease burden Higher socioeconomic status Prior knowledge about ACP and EOL op3ons Higher level of educa3on
back-up driver Durable Power of A1orney for Healthcare Living Will
Efforts to Raise Awareness Na9onal Healthcare Decision Day April 16 th Engage with Grace Thanksgiving weekend
Advance Illness Checklist Prognosis: What is your understanding of where you are and what the future may hold with your illness? Informa9on: How much informa3on do you want from me about what is likely to be ahead with your illness? Fears/Worries: What are your biggest fears and worries about the future with your illness? Goals: If your health situa3on con3nues to get worse, what are your most important goals? Dr. Susan D. Block
Advance Illness Checklist (con3nued) Trade- offs: If you become sicker, how much are you willing to go through in terms of procedures, machines, and being in the hospital, in order to have the possibility of gaining more 3me? Func9on: Are there specific health states that you would find unacceptable? For example, being on machines, in a coma, or unable to care for yourself. Family: How much have you discussed your goals and wishes with your family? Dr. Susan D. Block
Recently revised in California
Advance Direc9ve for anyone 18- years of age and older provides informa3on for FUTURE treatment does NOT guide emergency medical personnel guides in- pa3ent treatment decisions when made available appoints a healthcare representa3ve POLST for persons with serious illness at any age provides medical orders for CURRENT treatment guides ac3ons by emergency medical personnel when made available guides in- pa3ent treatment decisions when made available may differ by state in color and wording
Changes made: 1. The order of treatment choices in Sec3ons B and C changed with most aggressive/ invasive treatment choices listed first. 2. In Sec3on B, Limited Addi3onal Interven3ons is now called Selec3ve Treatment. 3. In Sec3on B, Comfort Measures Only is now called Comfort- Focused Treatment. 4. Goal statements have been added for each treatment choice in Sec3on B to promote quality conversa3ons.
Bedside Rounds (con3nued) 90- year- old man h/o esophageal cancer s/p XRT, odynophagia, dysphagia, recurrent aspira3on PNA, hearing and visual impairment Values his independence Lives alone in apartment with cat ; gets help from friends and neighbors AdmiXed for esophageal myotomy but it was canceled 2/2 in- pa3ent aspira3on PNA and decondi3oning so got PEG instead. We had an unforgepable conversa9on in the geriatric rehab unit. The Geriatric Rehab Team accomplished: Low vision opthalmology examina3on Dentures reordered PT for strength/gait/balance training and fall preven3on Neurobehavioral assessment to determine learning needs OT/nursing educa3on for PEG tube feeding ST for dysphagia & diet recs Home health for home safety evalua3on In- home support services for ADL/IADL support
Respec3ng Choices ACP Program The Five Promises 1. We will INITIATE the conversa3on. 2. We will PROVIDE assistance with ACP. 3. We will MAKE SURE plans are clear. 4. We will MAINTAIN and RETRIEVE plans. 5. We will APPROPRIATELY FOLLOW plans. Step 1 Introduce ACP to any adult regardless of health status Goal: nominate a surrogate Step 2 Suggest ACP to pa3ents with symptoma3c chronic progressive illness Goal: develop a more detailed ACP Step 3 Focused on pa3ents most likely to die within the next year Goal: develop clear and transferable medical treatment orders Gundersen Health System, Wisconsin
Time is Money Welcome to Medicare Preven3ve Visit aka Ini3al Preven3ve Physical Exam (IPPE) EOL planning is verbal or wrixen informa3on provided about their ability to prepare an AD and whether or not clinician is willing to follow it HCPCS code G0402 in the Medicare- Fee- For- Service Program HCPCS = Healthcare Common Procedure Coding System
Time is Money (Unless You re Talking about Death) New Current Procedural Terminology (CPT) Codes for CY 2015 99497 99498 Advance care planning Advanced care planning including the explana3on and including the explana3on and discussion of advance discussion of advance direc3ve such as standard direc3ve such as standard forms (with comple3on of such forms, when forms (with comple3on of performed), by the physician such forms, when or other qualified health performed), by the physician professional or other qualified health First 30 minutes, face- to- face professional with the pa3ent, family Each addi3onal 30 minutes member(s) and/or surrogate But the Centers for Medicare & Medicaid Services (CMS) won t pay.
Elephant #2 CAPACITY DECLARATION
Objec3ves Capacity Declara9on Differen3ate between capacity and competence Discuss elements of informed consent Review bioethical principles Discuss elements of decision- making Review steps to assess capacity
Capacity Competence Determined by a physician What are things that Specific for certain medical decisions appear to be the same but are actually different? Can be lost and regained (e.g., delirium) Apples and Oranges, Peas and Carrots, Capacity and Competence Determined by court Global for medical and non- medical decisions Difficult to revoke
Another Look 90- year- old man h/o esophageal cancer s/p XRT, odynophagia, dysphagia, recurrent aspira3on PNA, hearing and visual impairment Values his independence Lives alone in apartment with cat ; gets help from friends and neighbors AdmiXed for esophageal myotomy but it was canceled 2/2 in- pa3ent aspira3on PNA and decondi3oning so got PEG instead Informed Consent Elements Nature of the problem Proposed interven3on Alterna3ve approaches Risks and benefits
A Tale of Two Veterans Veteran #1 70- year- old ornery man Metasta3c prostate cancer and paranoid schizophrenia (stable) Medica3on inadherence and inconsistent follow- up Values religion (Buddhism) and independence Lives alone in HUD- VASH housing with assistance from a friend and emo3onal support from sister in a different city AdmiXed for falls and inability to care for himself Plans of Care Primary team arranged for SNF placement but Vet declined Primary team arranged transfer to in- pa3ent geriatric rehab unit but Vet declined Primary team planned to discharge to home but sister, nurses, and SW voiced concerns about this plan Bioethics consult for capacity evalua3on To be confnued.
Bioethical Principles Autonomy Beneficence Non- Maleficence Jus9ce
Decision- Making & Autonomy Autonomy = pa3ents have the right to ACCEPT or REJECT healthcare recommenda3ons Autonomy pa3ents have the right to DEMAND interven3ons that are not medically indicated Respec3ng autonomy = recognizing that medical decisions are complex and influenced by many factors Medical facts Individual goals, experiences, social rela3onships, etc. Surrogate decision making may be even more complicated
Surrogate Decision- Making Iden3fying the surrogate Durable Power of AXorney for Healthcare Hierarchy (may differ by state) Common standards: Subs3tuted judgment Best interest Hierarchy of Surrogates Legal Guardian Spouse Adult Children Parents, Siblings, Nearest living rela9ve
A Tale of Two Veterans (con3nued) Veteran #1 70- year- old ornery man Metasta3c prostate cancer and paranoid schizophrenia (stable) Medica3on inadherence and inconsistent follow- up Values religion (Buddhism) and independence Lives alone in HUD- VASH housing with assistance from a friend and emo3onal support from sister in a different city AdmiXed for falls and inability to care for himself What happened next: Bioethics consult for capacity evalua3on Medical team delayed discharge as per Bioethics Family mee3ng held Veteran agreed to hospice care at home but admixed feeling betrayed by staff and family Medical team then promised SNF for rehab Rapid response à code blue
A Tale of Two Veterans (con3nued) Veteran #2 98- year- old man Gait/Balance impairment and PTSD Social isola3on Values independence Lives alone in home he built with his own hands for > 60 years. Divorced x 3. Estranged from daughters. AdmiXed for falls and gait/ balance disorder Plans of Care Primary team arranged transfer to in- pa3ent geriatric rehab Probable mild cogni3ve disorder uncovered during geriatric assessment We performed a bedside evalua3on of his capacity specific to his preferred discharge plan Medical team in rehab unit discharged him to home with more in- home support
Evalua3ng Decision- Making Capacity Determined by trea3ng physician, geriatrician, or psychiatrist Evalua3on: ü Ability to communicate ü Ability to understand the proposed treatment and alterna3ve interven3ons ü Ability to appreciate the consequences of accep3ng or declining the suggested treatment ü Ability to explain the ra9onale for their choice A person must meet ALL four elements in order to be deemed capable of par3cipa3ng in decisions about their care.
Capacity Declara3on for Conservatorship Alertness and axen3on Informa3on processing Thought disorders Ability to modulate mood and affect Periods of impairment Ability to consent to medical treatment
Key Points Advance Care Planning (ACP) Appropriate to start at any age regardless of health status Comprehensive ACP includes documenta3on that is transferrable across health care sehngs, especially near the EOL At the very least encourage people to appoint surrogate decision- maker and discuss wishes with them POLST rule of thumb Capacity Declara9on Must precede any ACP or informed consent discussion Capacity Competence The four elements: q Ability to communicate q Ability to understand the proposed treatment and alterna3ve interven3ons q Ability to appreciate the consequences of accep3ng or declining the suggested treatment q Ability to explain the ra9onale for their choice