Advance Care Planning Pat Porterfield RN Wallace Robinson

Advance Care Planning Pat Porterfield RN Wallace Robinson RSW Lyne Filiatrault MD Session supported by an ‘acceleration’ grant from Integrated Primary & Community Care (IPCC)

Who are we? Why are we here? • Pat Porterfield, RN • Wallace Robinson, RSW • Lyne Filiatrault, MD

Show of hands • Family Doctors? • Hospitalists? • Anyone doing Palliative Care work? • Anyone doing ER work?

Goals of this session: Why are we here? • What is ACP? Why now? • BC legislative framework & ACP tools: the law & the language • The ACP conversation • Incorporating ACP in your practice

Your Goals and Objectives?

Pre-Evaluation • Please take a moment to fill the “pre” section.

Anecdote • Joe, a previously spry and independent 91 year old man, is brought to the ED with a massive, debilitating stroke. The family wants Joe to be a “Full Code”. • When asked what Joe would have wanted? The family doesn’t know, they never had The Conversation…

The heart of the matter

Changing face of dying We are living longer. By 2025: • 30% of the population >65. • 33% increase in deaths over 2004. • 2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty”. • Only 20% of us will die with a recognizable terminal (“palliative”) phase. 9

What ACP research says (1) • Patients wishes more likely to be known & respected (Detering et al, BMJ March 2010) • Less survivor stress, anxiety & depression (Detering et al, BMJ March 2010) • Enhances hope, patients waiting for HCP to ask (Davison, BMJ Oct 2006) • ACP improves satisfaction with care – chronic & EOL (Heyland et al 2009, Engelhardt et al 2006, Rabow et al 2004)

What the research says (2) • Sustained, systematic ACP increased prevalence, availability & specificity of ACPs (Hammes et al, JAGS 2010) • Increased ACP reduction in acute care utilization & costs (Gundersen-Lutheran/Dartmouth Atlas Study Methodology 2007) • MD pt EOL conversations = fewer life-sustaining procedures & lower ICU admissions (CHPCA, Wright et al JAMA 2008) • Increased communication better outcomes, increased family satisfaction & less expensive care (Wright et al JAMA 2008, Zhang, B et al Arch Int Med 2009)

The ACCEPT Study • People* think about future care (pts 76%; families 82%) & discuss their wishes with someone (88%) • Most discussions are with family members; • Discussions about future care had taken place with family physician: patients-30% & families--23% • Discussion of prognosis with a physician prior to hospitalization: pts-20% & families— 33% 13

Shared Experience? Briefly share an experience from your practice where ACP was present or absent and the effect on patient care

The Law & the Language in BC 16

Consent is the basis for Health Care Decision-making and ACP A health care provider must not provide any health care to an adult without the adult's consent unless an exception applies, and he or she has made every reasonable effort to obtain a decision from the adult. Health Care (Consent) and Care Facility (Admission) Act RSBC 1996 (HCCCFA)

What is Advance Care Planning? • For capable adults • About wishes, values, beliefs &/or instructions for future health care when pt will not be capable of making health care decisions • A continuum, an ongoing conversations with family, friends, substitute decision maker (SDM) & health care provider (HCP) • simply oral but ideally also written

Substitute decision maker A question we should ask ourselves and all our patients: If there came a time when you could not communicate, who would you want to speak on your behalf to help us make medical decisions for you?

Temporary Substitute Decision. Maker (TSDM) The order below matters! The adult’s spouse üThe adult’s child (may be any child; birth order not relevant) üThe adult’s parent üThe adult’s brother or sister (any sibling; birth order not relevant) üThe adult’s grandparent (new=Sept 2011) üThe adult’s grandchild (any grandchild; birth order not relevant) (new) üAnyone else related by birth or adoption to the adult üA close friend of the adult (new) üA person immediately related to the adult by marriage. (new)

Qualifications for a TSDM • The TSDM must be at least 19 yrs old • been in contact with the adult in past 12 months • have no disputes with adult • be capable of giving, refusing or revoking consent • be willing to comply with duties in Part 2, section 19.

Substitute Decision Makers (SDM) • SDM is a stressful role as own preferences may vary from those of the patient and/or other family/friends • The role of the SDM is to represent the values, beliefs, and wishes/preferences/instructions of the patient • Not responsible for decision to withdraw care 22

Substitute Decision Makers (SDM) • When dealing with SDM, frame the question in a way that clearly indicates what you need from him/her: “What would your father be thinking … ? ” “What would be important to your father …? ” “What would your father do in this circumstance? ” 23

Formally appointed Substitute Decision Makers If adult is incapable of the decision and it is not an emergency… Personal Guardian (Committee of Person) appointed by the court Representative appointed by the capable adult in a Representation Agreement

Standard (7) Representation Agreement Created for those with diminished capacity but still able to identify who they trust to speak on their behalf Authorized to make these decisions: • personal care • major or minor health care • routine financial (pay bills, deposit income, purchase food, make investments) Cannot consent to facility/group home placement & limits on end-of-life decision making

Enhanced (9) Representation Agreement Lawyer/notary witnessing no longer required: Capable to make a Rep 9 if the adult understands the nature and consequences of the proposed agreement Authorized to make these decisions: • personal care • major or minor health care • refusal of life-supporting care and a move to a care facility (unless otherwise specified in the agreement)

Financial/personal decision making RA 9 no longer contains financial/legal provisions: • (Enduring) Power of Attorney replaces this role • Pre Sept 1 st RA financial/legal grandfathered Rep 7 retains minor financial/personal decision making power

A ‘basic’ advance care plan 1. Conversations/expression of beliefs, values and wishes: • Informal: Verbal or on video 2. Written • looseleaf • My Voice pp. 30 -31 • CHABC or other faith-based guide 3. Writing down contact info for people who qualify for TDSM list. Similar limits on refusal of life supporting care or consent to facilitate/group home placement as in an RA 7

Advance Directive • Written instructions made by a capable adult to give or refuse consent for health care directly to the adult’s health care provider, when: • adult is incapable • relevant to the decision required, about care that is offered • no TSDM is sought for the applicable decision in the AD • If Representation Agreement also in effect, Rep decides based on instructions in AD

Advance Directive • AD-like documents made < Sept 1, 2011 or in other jurisdictions may be considered as an AD if meets requirements • If documents are not considered “Advance Directive”, wishes expressed when capable to be honored by the SDM

Advance Directive Requirements ü 2 qualified witnesses or 1 lawyer or Notary Public ü Form in My Voice guide an option, not mandatory but must contain statements indicating the capable adult’s understanding of the effect of the Advance Directive • specified care may not be provided • no ‘other’ may be asked

Advance Directive Requirements ü Cannot bind HCP to medically inappropriate care or direct action in contravention of a law ü Do not follow without consideration of applicability; if in doubt, consult a colleague or Risk Management

The Representation Agreement & Advance Directive in combination • Appointment of a Representative and binding instructions to the HCP • If AD instructions are to be acted upon without the representative, must be explicit in the Representation Agreement Who might this be good for?

Summary Advance Care Planning is the process resulting in several types of advance care plans 1. ‘Basic’ advance care plan (expression of wishes to the person who will be appointed TSDM) 2. Representation Agreement (2 types) 3. Advance Directive 4. Rep Agreement & Advance Directive in combination

Ministry of Health Resources http: //www. seniorsbc. ca/legal/healthdecisions • The “My Voice” guide • Brochures -an introduction to ACP -a brochure for Aboriginal community • 3 videos on Ministry website, explaining the guide; English, English with Chinese subtitles, English with Punjabi subtitles • FAQs • Quick Tips

Questions?

ACP: The Conversations 38

Calgary’s experience with ACP & Goals of Care It’s about the conversations Helps prepare people for in the moment decision-making Normalizes this process for pts, families & clinicians Goal is to make this a standard of care, not simply a policy Eric Wasylenko 39

Agree or disagree? All patients should have an advance care plan.

…but emphasis on: • People living with a chronic life-limiting disease (with a diagnosis of dementia consider early in disease trajectory) • Surprise question (would you be surprised if this pt died within the next six months? ) • Capable adults with life expectancy of less than 6/12 months (may be done in conjunction with No CPR/DNAR/Options for Care ensure consistency)

Barriers to having the Conversation

Anticipating the conversation • With whom should I have this conversation? • How do I prepare the patient (& family/ SDM)? • How do I prepare myself, as care giver? • What is the content of the conversation? • Follow up?

Triggers for Identification? “Routine” ü Patient history form/intake assessment ü Annually for all adults at age ? : “I try to speak with all my patients about this …” ü Part of chronic disease management: "This illness can have a fairly predictable course…" “Situational” What question might you ask following an emergency department/hospital admission? 44

Setting the stage for a conversation How do you identify appropriate patients? How do you introduce it? What has worked in your practice? 45

Elements of a good conversation – – – Relationship…. trust Privacy Honesty & clarity; “lay language” Not in a crisis…. not ER Listening No one way…. . different amounts of info desired some like to review written materials – Opportunity for family or potential TSDM or Rep to be present 1 ACCEPT study; VCH Community Engagement Public Forum 2010 2 Curtis study—ICU experience with conversations 46

The Conversation—Content • Content will vary dependent on age, health status…. . • What have they done thus far re thinking/planning? • Need to find conversation relevant to them given their age & illness --Healthy adult—SDM – Adult with advanced chronic disease-quality of life & treatment goals – Adult with prognosis of less than six months prognosis— interventions such as CPR • Need to understand that their decisions can make a difference—how health care decision-making works 47

Atul Gawande How to talk with a dying patient—video clip

Atul Gawande 1. Does the patient know his/her prognosis? 2. What are the patient’s goals? What does he/she want to do with the time that is left? 3. What are the patient’s fears about what is to come? 4. What are the trade-offs that the patient is willing to make? How much suffering is the patient to tolerate in order to achieve their goals?

Atul Gawande - Thoughts? • What do you think about using this approach for patients near end of life? 50

Following up the conversation • Clarify what they (pt & family) are going to do next? • Review ACP on a regular basis---consider when & how you will review with them? • Setting up systems for review—what makes sense for different pt groups? 51

Incorporating ACP into practice 52

HA activities

Appropriateness of Care ACP vs Goals of Care Advance Care Planning • Capable adult’s wishes, values, beliefs Care Episode Goals of Care • Patient condition • Patient wishes • Clinical perspective • Levels of intervention • DNACPR • Options for Care Potential updates of ACP over time • Interventions? ICU? Comfort?

Office Practice Documentation • EMR—screen shots of EOL algorithm • Hard copy system--? Greensleeves? On chart and at Home. 55

Communication/ Documentation/ Transfer of Information • Other team members? Home Care/Chronic Disease Nurses/Care Coordinators • Communication with EMS and acute care hospital • Communication between hospital and LTC 56

ACP & Primary Care Fee Codes— align with identification • G 14063 Palliative Care Planning Code can be used for discussions with palliative patients • Chronic disease management & ACP… Fee code 14033 - Complex Care Planning Fee – discuss ACP in context of chronic disease management

Starting tomorrow… how will I integrate ACP into my practice? Is there one patient you will see tomorrow who you can identify as appropriate for an ACP conversation? Is there an office change you could initiate to make ACP more systematic? Is…. ? ? ?

What will these numbers look like in 2015? 2008 VGH ED study: • 35% of elderly patients surveyed knew what an Advance Directive (AD) was • 19. 3% had an Advance Directive • only 5. 6% brought it to the hospital • 56% of the elderly surveyed had a F. Dr. aware of their AD *at the time Advance Directive = Advance Care Plan (current term)

Anecdote Revised • Joe, a previously spry and independent 91 year old man, is brought to the ED with a massive, debilitating stroke. • When asked what Joe would have wanted? The family is able to provide an ACP relating his beliefs, values and what is a meaningful life is for him.

Evaluation • Please complete the evaluation and give us feedback on how to improve these sessions.

Acknowledgements

PSP EOL Algorithm

Resources specific to different illnesses for pts/families • Dementia—www. alzheimerbc. org-Personal planning • ALS-www. als. ca- manual for living with ALS which includes acp • Parkinson’s Disease—Health Care Decisionmaking brochure—www. parkinson. bc. ca • Kidney disease—www. kidney. ca—information re kidney disease & treatment choices • Others? 64

Resources • • Mo. H: http: //www. seniorsbc. ca/legal/healthdecisions My Voice hard copies http: //www. crownpub. bc. ca/ PSP End-of-life module (GPSC PSP EOL website) BCMA website (website) VCH website: www. vch. ca/advancecareplanning PHC website: www. providencehealthcare. org/acp http: //www. trustee. bc. ca/pdfs/Adult%20 Guardianship/It's_Your_Choice. Personal_Planning_Tools_a. pdf • www. advancecareplanning. ca National Speak Up Campaign • Fraser Health website: www. fraserhealth. ca • CARENET: http: //www. thecarenet. ca/ 65

HANDOUT? Serious Illness Communication Checklist* 1. What is your understanding of your illness? 2. How much information would you like about what is likely to be ahead? 3. What are your most important goals in whatever life you have remaining? 4. What are your biggest fears and worries about the present, the future? 5. What abilities are so critical you cannot imagine living without? 6. If you become sicker, how much are you willing to go through for the possibility of more time? 7. How much does your family know about what you want? *Dr Susan Block, Dana-Farber Cancer Institute/Harvard Medical School