End of Life Option Act: One Year. Susie Crandall Hospice East Bay. CAHSAH CHAPCA Annual Conference & Expo May 22 24, 2018, Monterey, CA

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1 End of Life Option Act: One Year Susie Crandall Hospice East Bay Play the 2018 Conference Post to Win Game for a chance to win different prizes each day! 1

2 Session Objectives 1. Understand what has led to the EOLOA being enacted into law 2. Understand the contents of the law 3. Understand what an organization needs to consider 4. Understand the impact of the law in California to date May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 4 2

3 Setting the Stage Life expectancy 1900 = 40 years Life expectancy 2000 = 80 years 1900: Infectious diseases caused death 2000: Degenerative diseases caused death During the last 50+ years, medicine has become increasingly capable of postponing death Death moved from home to hospital transitioned from natural to medical process May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 5 Today Nearly half of all Americans die in a hospital Nearly 70% die in a facility: hospital, SNF or long-term care facility 7 out of 10 want to die at home Almost 1/3 see 10 or more physicians in the last 6 months of life May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 6 3

4 The Economic Cost of Dying Patients with chronic illness in their last two years of life account for about 32% of total Medicare spending Medicare covers 1/3 of the cost of treating cancer in the final year, 78% occurring in the last month of life Costs about 1/3 less if an EOL discussion May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 7 The Emotional Cost of Dying Suffering for the dying patient What some medical staff view as futile treatment Mental anguish for loved ones making difficult decisions May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 8 4

5 Dying in America America: The only country where death is optional Dying increasing involves choice Aggressive treatment? Palliative care? Hospice care? Life-ending medication? May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 9 Language Death with Dignity Act: OR and WA Patient Choice & Control at End-of-Life Care Act: VT End-of-Life Option Act: CA and MT Physician-Assisted Death Physician-Assisted Suicide Aid in Dying May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 10 5

6 The California Law Legal in California as of June 9, 2016 Sunset Clause (unique to California): The law remains in effect until 1/1/2026 unless another statute is enacted to extend May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 11 Law Contents Terminally ill, competent adult (18+) Resident of California Medically predicted to die within 6 mos. Decision-making capacity Physical and mental ability to selfadminister the medication Request made solely and directly by the individual, not on behalf of May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 12 6

7 Physician Involvement 2 physicians, an attending and a consulting Both affirm diagnosis, competence and decision-making ability Attending MD prescribes and completes official paperwork Physician must discuss feasible alternatives, such as hospice, PC Optional referral to psychiatrist May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 13 Forms 2 verbal requests and 1 written request 15 day waiting periods between verbals 2 witnesses sign/date written request Witness cannot be involved MD or mental health specialist Only 1 witness can be related by blood, partnership, adoption, etc. Attestation form 48 hours before taking meds May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 14 7

8 General Provisions Not considered suicide or assisted suicide under California statutes Underlying illness cause of death Recommendations: Have another person present Notify next of kin/family Don t take in a public place Participate in a hospice program Keep meds safe until ingestion May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 15 Medication Secobarbital or pentobarbital most frequently used; cost $3000 to $5000 Compound med being used; cost $400 Medicare will not cover the medication MediCal will cover the medication Most private insurance companies will cover May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 16 8

9 The Oregon Experience 480,000 died between 1998 & used the Act (1,173 prescriptions) 53% male 98% Caucasian 46% married 72% college educated 90% enrolled in hospice 95% died at home May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 17 Reasons for Using the Law Autonomy Ability to enjoy life Loss of dignity Control of bodily functions Burden on family, friends, caregivers Inadequate pain control or concerns about pain Financial implications May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 18 9

10 California Data 183,265 died between June-December received prescriptions 111 (58.1%) died from end-of-life medication 21 (11%) died without using the med 59 (30.9%) outcome not yet known 173 unique MDs prescribed the drugs May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 19 California Age Data 87% 60+ years of age Median age: % under % % 90 or older May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 20 10

11 California Data 89% Caucasian 54.1% female 72.1% some college education 83.8% receiving hospice and/or PC May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 21 Insurance Data 96.4% had health insurance 56.8% Medicare or MediCal 30.6% private insurance 9% undetermined health insurance May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 22 11

12 Disease Data 58.6% cancer 18% neurological disorders, such as ALS or Parkinson s 8.1% heart disease 6.3% lung respiratory disease 9% other underlying illnesses May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 23 Cancer Data 20% lung cancer 18.5% breast cancer 12.3% pancreatic cancer 10.8% prostate cancer 38.5% other malignant neoplasms May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 24 12

13 Hospice Utilization 83.8% had hospice or PC services Low utilization compared to Oregon (98%) May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 25 Healthcare Workers Protection No civil or criminal liability or neglect for acting in good faith, including being present when patient takes the meds No censure, discipline, loss of license, privileges, or membership, or other penalties to members of professional organizations for either participating or not participating May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 26 13

14 Opting Out Providers may opt out because they are unable or unwilling to participate Can continue to provide other patient services while abstaining from fulfilling the request May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 27 Institutional Prohibitions Allowed Institutions (organizations) may prohibit employees from participating in the act Must provide written notice to the employees and the general public regarding its policy Policy allows providers to give all other services May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 28 14

15 Organizational Choice Full Participation Medical professionals associated with organization may serve as attending physicians under the law and write the prescriptions Staff can be present at time of ingestion and actively support patient/family during the process May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 29 Organizational Choice Partial Participation Medical professionals may serve as consulting physicians Staff may or may not be present at ingestion, depending on agency policy May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 30 15

16 Organizational Choice Limited Participation Refer to supportive organizations, such as Compassion and Choices Staff not allowed to be present at time of ingestion May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 31 Organizational Choice No Participation Refuse to accept or serve patients pursuing the medication Refuse to allow staff to discuss option with patients Do not make referral to outside organization May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 32 16

17 Informed Consent Policy Patient right to receive accurate information Patient right to non-judgmental care Support self-determination Recognize the legality of the Act Patient made aware of level of organizational involvement May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 33 Staff Training Train on your policy Train on how to have patient-centered, not provider-centered conversations Explore the why behind the interest Assess for unmet needs Maintain non-judgmental body language/words/responses May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 34 17

18 Staff Opting Out Develop policy and process for staff to opt out of caring for patients who receive the medication Coordinate a smooth transition to other staff members May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 35 The HEB Experience Started with a task force comprised of hospice team members of all disciplines Purpose of task force was to explore their concerns and make recommendations for the agency policy Policy created by a sub-committee of the HEB Ethics Committee; best practice created separately Decided on Partial Participation May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 36 18

19 Staff/Volunteer Training Met with small groups (no more than 20) to discuss the agency policy and best practice Allowed for questions and concerns to be expressed May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 37 First Patients When staff members attended an EOLOA death, they returned to office to debrief with leadership. Purpose? Provide emotional support Learn about differences, if any Re-examine best practice and re-tool if necessary May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 38 19

20 Current Practice Not currently formally tracking number of patients Staff does not present EOLOA as an alternative, but support patient exploring Best practice: Staff going in pairs Continue to review and re-evaluate our practices May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 39 QUESTIONS? May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 40 20

21 Resources The Oregon Death with Dignity Act: A Guidebook for Healthcare Professionals, Dignity-Act-Guidebook.pdf Dignity, Death & Dilemmas, Journal of Pain & Symptom Management, Vol 47, No. 1, pp May 10-12, 2016 CAHSAH 50th Anniversary Annual Conference 41 Speaker Information Susie Crandall, PhD, CHA VP, Agency Collaboration & Effectiveness Hospice East Bay 3470 Buskirk Ave., Pleasant Hill, CA hospiceeastbay.org May 22-24, 2018 CAHSAH CHAPCA Annual Conference 42 21