Advance Care Planning (and more)

Advance Care Planning (and more) Tessa & Josie Karl Steinberg, MD, CMD,HMDC @karlsteinberg, karlsteinberg@mail.com WWW.COALITIONCCC.ORG Advance Care Planning ACP is a process that unfolds over a life span Advance Care Planning A broad term that encompasses all discussions and measures taken in advance to address goals of care NOT Advanced NO d! Can range from very specific to very general Can involve family, health care providers, spiritual counselors, and others Helps ensure that people get the treatment they want to get And avoid getting the treatment they don t want to get! Advance Care Planning Advance Care Planning Often involves creating an Advance Health Care Directive (AHCD), or Durable Power of Attorney for Health Care Designates an agent to make health care decisions on your behalf Choice to prolong life vs. Choice not to prolong life within the limits of generally accepted health care standards Can specify certain wishes (e.g., no tube feeding) But It s not a doctor s order like POLST It s recommended that everyone over 18 complete AHCD Advocates Can only be completed by persons who have decisional capacity (including those with early dementia) Doctors and nurse practitioners/physician assistants can now bill for these discussions CALIFORNIA 1

Why is Advance Care Planning important? Why is Advance Care Planning important? Helps avoid unwanted and unpleasant medical interventions and medicalization of death Allows loved ones/decisionmakers to feel comfortable when directing treatment Nothing completely eliminates guilt, but ACP conversations and documents definitely help Makes healthcare professionals more comfortable with providing or withholding/withdrawing treatment Usually enhances patient-clinician relationship and trust As a side benefit, can reduce healthcare costs Avoids making decisions in a crisis situation Creates realistic expectations of medical interventions and predicted functional status Helps us provide truly person-centered care Allows family members to become closer through these important discussions among themselves But: Cannot envision every possible scenario And: Remember, people change their minds ( in both directions) Life Expectancy Leading Causes of Death in the U.S. 80 78 76 1950 1960 700,000 600,000 Heart Disease 74 1970 500,000 Cancer 72 1980 400,000 70 68 66 1990 2000 300,000 200,000 Chronic lower respiratory disease Stroke 64 2010 100,000 62 Average U.S. Life Expectancy (both genders) 0 Cause of Death Accidents Centers for Disease Control [Internet]. Atlanta, GA: National Centers for Health Statistics. Available from: http://www.cdc.gov/nchs/ Centers for Disease Control [Internet]. Hyattsville, MD: Leading Causes of Death; 2010. Available from: http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm. Quality of Care at the End of Life Californians Think Planning for Serious Illness and End of Life is Important Inadequate emotional support 50% Not enough information 30% Inadequate physician communication 24% Inadequate attention to pain 24% Inadequate attention to dyspnea 22% Teno, J.M., Clarridge, B.R., Casey, V., Welch, L.C.; Wetle, T., et al. (2004) Family perspectives on end-of-life care at the last place of care. JAMA, 291, 88-93. Wright AA Associations between end-of-life discussions, patient mental health, medical care near death, caregiver and bereavement adjustment. JAMA 2008; 300(14) 1665-1673. CHCF 2012 data, The Final Chapter Think recording wishes is important 82% Wishes for care Recorded in some form: 23% CALIFORNIA 2

Most Patients Do Not Discuss End-of-Life Wishes with Family Most Patients Do Not Record Their Wishes for Care or Discuss Options with Providers 23% of Californians have recorded their wishes for care in a written document. 9% of California patients report that a physician asked them about their wishes for care at the end of life. Source: Californians Attitudes Toward End-of-Life Issues, Lake Research Partners, 2011. Statewide Survey of 1,669 adult Californians, including 393 respondents who have lost a loved one in the past 12 months. Copyright 2012, California HealthCare Foundation Data: CHCF 2012 Final Chapter Deaths in Acute Care Settings are Down; Intensive Care at the End of Life is Increasing What We re Aiming For 45 40 35 2000 30 25 20 2005 15 10 5 0 Deaths in Acute Care Hospitals ICU use in last 3 months of life Hospice use at time of death 2009 Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009 Teno, JM JAMA, 2013 February 6 ACP: A conversation about What is important to the individual Hopes, goals and concerns about the future The realities facing the individual Diagnoses, abilities, limitations, resources Completing documents and arrangements Benefits of ACP Discussions: The Patient s Perspective Increases likelihood that wishes will be respected at end of life Achieves a sense of control Strengthens relationships Relieves burdens on loved ones Eases sharing of medical information (HIPPA) Provides opportunities to address life closure CALIFORNIA 3

What healthcare professionals need to hear from patients Surrogate Who is to speak for the patient if incapacitated Treatment wishes Such as resuscitation (CPR) Values, Goals, Preferences What makes life worth living What needs to be completed before death What is unacceptable to the patient I d rather die in comfort than. Special religious or cultural preferences ACP: What patients need to hear from healthcare professionals Current state Diagnoses Threats to wellbeing and function Expected outcomes (life expectancy, disability, death) Treatment options Benefits Burdens Likely results Alternatives Who Speaks for the Patient In the following order: Named in Verbal Advance Directive Named in Written Advance Directive Named as Conservator by Court Closest Available Relative Other Friends if above unavailable Terms for Surrogate Legal Terms Surrogate verbal AD Agent written AD Conservator court order Other, closest available relative Community Terms Surrogate / Decisionmaker / Spokesperson / Proxy DECISIONS and Communication Choosing a Surrogate Choose one person as Primary surrogate Naming two or more people as Primary can create problems Choose an Alternative surrogate List a 2 nd surrogate & consider listing a 3 rd What to do with additional family members Consider giving them other roles CALIFORNIA 4

Qualities of a Good Surrogate Willing and able Knows values and preferences Can make difficult decisions May or may not be the closest family member Scope of Surrogate s Authority Decisions about: Choose healthcare providers Approve or refuse medical treatment Agree to testing Review medical records Donate organs Authorize autopsy Direct disposition of remains Scope of Surrogate s Authority How does surrogate make decisions: Legal Standard In accordance with patient s Expressed Wishes (substituted judgment) To the extent unknown, based on Patient s Values and Best Interests (best interests) Documents may specify how much leeway the surrogate can exercise Scope of Surrogate s Authority How does surrogate make decisions: Lay Language Carry out the patient s wishes Make the decisions the patient would have made Stand in the shoes of the patient Substituted judgment Who Cannot be a Surrogate Patient s supervising healthcare provider Employee of the healthcare institution where the patient receives care Unless related to patient, or Patient also employed by institution Operator or employee of facility where the patient lives Unless related to patient When is the Surrogate s Authority Effective When patient lacks capacity (if there is a springing clause ) Anytime the patient requests that the surrogate make decisions If the patient so designates in advance directive, immediately CALIFORNIA 5

What Else Can Go Into AHCD Goals Values Treatment Preferences Leeway Leeway Choose how much flexibility you want your surrogate to have No Flexibility Expect surrogate to follow wishes exactly Some Flexibility Some wishes are flexible, others are not Total Flexibility Okay for surrogate to do what he/she thinks is best at the time Advance Care Planning Documents Which document do I use? No single form for California Several to choose from Statutory form Simple versions Five Wishes DPAHC only What is an Advance Health Care Directive? Tool to make health care wishes known if unable to communicate Allows a person to do either or both of the following: Appoint a surrogate decision maker (Durable Power of Attorney for Health Care) Give instructions for future health care decisions (Living Will) What is Required Individual s signature Date of execution Witnesses or Notary In nursing home, the ombudsman must witness AHCD signing CALIFORNIA 6

Two Witnesses Witness either Signing of advance directive, OR Patient s acknowledgement of his/her signature Who Cannot be a Witness Neither Witnesses can be Patient s healthcare provider or employees of patient s healthcare provider Operator or employee of community care facility or assisted living facility The agent named in the advance directive One of the Witnesses cannot be Related to patient by blood, marriage, adoption Entitled to a portion of the patient s estate Duration of Effectiveness Advance directives do not expire ( Durable ) Unless document states otherwise The one with the most recent date will be followed to the extent of a conflict California Recognizes Advance directives executed in another state in compliance with that state s requirements Military advance directives What is a verbal Advance Directive? ACP Across the Continuum When residing in a healthcare institution Patient notifies supervising healthcare provider Provider documents in chart Good for lesser of stay or 60 days Advance Care Planning Continuum Age 18 Complete an Advance Directive Update Advance Directive Periodically Diagnosed with Serious or Chronic, Progressive Illness (at any age) Complete a POLST Form Treatment Wishes Honored CCCC perspective on Advance Care Planning CALIFORNIA 7

POLST Physician Orders for Life-Sustaining Treatment Who Would Benefit from POLST? Physician s Medical Order Provides instructions regarding specific medical treatment Legally binding across healthcare sites in California Valid only if appropriately signed by patient (or decisionmaker) and physician/np/pa Serious illness Medically frail Chronic progressive condition Qualitative tool for determination:.you wouldn t be surprised if this patient died within the next year. 2014 POLST Form 2014 POLST Form 2011 POLST Form 2011 POLST Form When does this apply? When Does Section A Apply Resident has died a natural death No heartbeat Not breathing Important for people to know that checking DNR/AND does not mean Do Nothing in situations short of a full cardiac and respiratory arrest Useful to communicate that CPR is not very effective in frail elderly patients, and can cause serious harm for those who survive CALIFORNIA 8

2014 Section B Goal Statements Section B Full Treatment In 2014 Revisions, Section B statements reflect goals of care as opposed to just descriptions, also does not use the language Comfort Care Only or Limited Interventions Also added time-limited trial of full treatment Also modified the order of all sections to be consistent, most aggressive to least aggressive Full Treatment Full use of all hospital has to offer Including ICU & intubation/ventilation, dialysis, etc. Invasive, intense, aggressive CPR = most invasive/aggressive intervention Those choosing CPR in Section A must choose Full Treatment in Section B Can be for trial period, either a specific time or just left blank and defer to decisionmaker Section B Selective Treatment Section B Comfort-Focused Treatment Selective Treatment Most complex category Not ready for pure comfort care, but want less invasive treatment No ventilator / intubation Think twice before surgery or ICU Treat treatable conditions if not too burdensome What many people would consider No Heroics Do Not Transfer option Acknowledges residents who want these treatments in SNF (or LTAC, but not hospital still transfer if comfort needs can t be met Comfort-Focused Treatment Everyone gets comfort care Whether box is checked or not Choice is mostly for residents at end of life interventions designed to prolong life not wanted Care plan should be consistent Evaluate all treatments and meds, many appropriate to stop usually no antibiotics for infection Change in condition Evaluate For example, broken hip may need surgery to address pain, which promotes comfort Advance Directive vs. POLST POLST vs. Pre-Hospital DNR (Do Not Resuscitate) AHCD General instructions for FUTURE CARE Requires interpretation Needs to be retrieved POLST Specific orders for CURRENT CARE Stays with the patient POLST Allows for choosing resuscitation Allows for other medical treatments Pre-Hospital DNR Can only use if choosing DNR Only applies to resuscitation Many different forms Signed by patient, witnesses Single, standardized form Signed by patient (or HC Agent) and physician Honored across all health care settings Only honored outside the hospital CALIFORNIA 9

Keeping Wishes Up to Date Review and Update Documents Important life changes Marriage, birth, divorce, death Major change in health status Change in treatment preferences Mnemonic: 5 D s: Decade, Disease, Disability, Divorce, Death What If I Change My Mind Individual Can modify or revoke his/her wishes at any time for any reason Surrogate Surrogate s job is to carry out individual s wishes Process Best practice is to execute a new document What do I do with the document? Give copy to your agent. Make copies for other loved ones. Discuss with doctor; get in medical record. Keep a copy; take to hospital if you go. Photocopies are just as valid as original. Original POLST should be kept on bedpost or refrigerator Palliative Care What is it For people with serious illnesses Relief from symptoms, pain, and stress Improves quality of life for both patient and family Appropriate at any age and at any stage in a serious illness Team-based Can be provided along with curative treatment Structured as philosophy of care Hospice What is it Care at the end of life Team of healthcare providers Focused on symptoms, comfort, quality of life Support patient and family Come into your home Requirements Six months or less life expectancy Forgo curative treatment Provided as medical benefit Take-Home Messages Do Advance Care Planning Now Do it with your whole family! Choose the right person to make decisions for you If you are seriously ill or have strong feelings about what kinds of treatment you want, consider a POLST Remember that DNR does not mean just let me die Dehydration is not a bad way to die If you don t make your wishes known, our default is to treat you as aggressively as possible to prolong your life if you want that, great...if not: make your wishes known. CALIFORNIA 10

CCCC Decision Guides Selected Web Resources Coalition for Compassionate Care of California www.coalitionccc.org, www.capolst.org The Conversation Project (for patients/families) http://theconversationproject.org/ Vital Talk (for docs/clinicians) www.vitaltalk.org Center for Practical Bioethics (for clinicians) www.practicalbioethics.org California State University Institute for Palliative Care https://csupalliativecare.org/ Selected Web Resources Questions? karlsteinberg@mail.com @karlsteinberg Prepare www.prepareforyourcare.org (also available in Spanish) eprognosis (Estimating Prognosis for Elders) www.eprognosis.org American Bar Association http://www.americanbar.org/groups/law_aging/resources/health_care_deci sion_making.html Caring Advocates (Dementia) www.caringadvocates.org Five Wishes (for general public, advance care planning) www.fivewishes.org CALIFORNIA 11