Life Care Program
Life Care Program Advance care planning and communication with participants and families throughout transitions in life Tanya Kailath, MSN,GNP-BC, ACHPN
What is a life care program? CEI vision to understand how participants define what makes life Better Listen, learn, and implement plan to improve quality of life in all dimensions Physical (functional) Social Spiritual Psychosocial DISEASE is not identity- Beyond Medical Choices 5
Life Care Structure at CEI Comprehensive CEI team approach Working with Participant, family, and/or significant others Delivering optimal care and treatment per participant wishes Provided at every stage of life at CEI 6
Physicians failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself. Eric J. Cassell, MD 7
Respecting Choices Gunderson Evidence-based Gunderson, La Crosse, WI, early 1990s Works with organization on communication Understanding of importance of ADLS Consequence of not planning Opportunity to reflect on goals, values, beliefs Discussion family, PCP, spiritual advisors HEALTH CARE POWER of ATTORNEY http://gundersenhealth.org/respectingchoices 8
Team approach 9
Life Care Goals Assist participant, family or SO to understand medical condition(s). Engage participant, family and/or SO to identify life care preferences (POLST, ADHC). Identify surrogate decision maker(s) able to support participant wishes. Provide ongoing quality care and treatment for medical conditions and to improve pain and symptom management. Provide comprehensive spiritual, emotional and bereavement support. 10
Why Formalize Life Care? Participants are at high medical risk having an average of > 12 medical diagnoses. To share/confirm participant, family and/or SO s understanding of diseases, disease trajectory and expectations. Provides opportunity for participant, family and/or SO to identify values, treatment preferences and surrogate decision maker(s). Confirms CEI understanding and ability to honor participant s life care wishes. Provides emotional and spiritual support per participant, family and/or SO preferences. 11
Why Formalize Life Care? Focus on comfort and symptom/pain management. Understand participant preferences and planning for care in home setting when appropriate. Provide emotional/spiritual support as end of life nears. Provide opportunity for participant, family and or SO to express preferences related to funeral arrangements. Provide ongoing emotional/spiritual support to surviving family and significant others. 12
Crossroads = Change When do you have the conversation? 13
How participants define better Feel like they have choices in a life filled with change and increasing loss Live in clean, safe, attentive environment Eat food that has flavor that they like Stay in their current home and have freedom to do what they want, when they want Pain relief so they can spend time with friends, family and doing enjoyable activities Able to stand and walk Access to medications and help taking them 14
Life care not just END 15
Palliative care Geriatrics/Primary Care Cardiology/ nephrology/ pulmonology Hospice Oncology Pain management/ neurology Surgery 16
CEI approach to life care 17
Stage one A stage 1 interdisciplinary LC discussion for new participants regarding clinical information, values, preferences and goals is to be held within 30 days of joining CEI. POLST is to be initiated within 30 days for new participants, or for any existing participants without a Health Directive on file. Providers will make every effort to obtain participant treatment wishes via POLST Center directors will work with Center team in making every effort to identify surrogate decision maker(s). Goal: ADHC within 90 days. 18
Stage two A follow-up stage 2 interdisciplinary LC discussion related to disease trajectory, revisiting values, preferences and treatment options is to be held with all CEI participants: On discharge from acute stay hospital At significant decline in clinical condition At time of participant annual assessment, And/or upon request. Key to the discussion is to confirm participant, family/so understanding of disease and feeing comfortable and empowered to continue making Life Plan choices. 19
What is involved? Stage 1 Stage 2 1. LCP discussion-initiate POLST, identify surrogate decision-maker 2. Treatment wishes entered in ECW and documents scanned Follow-up discussion to occur with any change in condition, hospitalization, change in level of care Who is involved? 1. Providers, social workers, RNs, center director 2. Health information coordinator Other info Also desirable to discuss advanced health care directive (ADHC). Provider reviews existing AD/POLST. SW arranges meeting to complete documents if not on file Inquire about financial DPOA Desired result POLST within 30 days enrollment ADHC within 90 days Wishes documented within 90 days
Introduction to life care planning What is involved? Stage 1 Stage 2 Assess/confirm right time to talk Assess/confirm right time to talk Assessment Who is involved? Provider Nursing Rehabilitation Social work, Behavioral health, Chaplain Provider Nursing Rehabilitation Social work, Behavioral health, Chaplain Talk Points Who is involved? Non-clinical: SW Why conversation? Goals of care Defining QOL Non-clinical: SW Why conversation? Goals of care Defining QOL Completing Advance Directive Who is involved? SW-confirm AD, provide copies to participant, DPOA, provider, ECW SW-confirm AD, provide copies to participant, DPOA, provider, ECW
Stage three 22
Stage three Addresses participant s wishes as end of life nears. Generally within last 6 months of life Includes additional discussions and validation of wishes, preferences, and goals. Provides comprehensive clinical care at preferred residence. Care is managed based on participant need. Services include MD or NP, social services, geriatric aide, chaplain, and other support as needed. 23
CASE STUDY #1 78-year-old Caucasian male, moved to RCFE from home shortly after enrolling in CEI CKD, anemia, HTN (hypotension), PVD, actinic keratoses, dementia with behaviors, peripheral neuropathy, insomnia, hearing loss Team approach-nutrition, nursing, medicine, day center staff, activities, rehab, SW (care plan) 24
CASE STUDY #1 continued Transition weaker, more tired, less engaged at day center ~2 hospitalizations within 1 month with potential 3 rd when staff identified decline, Goals of care? SW communicated with family out of town for updated POLST/ADHD 25
CASE STUDY #1 DPOA agreed goal would be avoid hospitalization Lived 1 year on comfort care Adjusted all meds for comfort HHRN weekly visits symptom management, wound care Rehab transfers, ROM Chaplain family support Hospice in last 72 hours of life and died with support hospice 26
Implementation Lessons Learned Original intention was to start with Phase 1 of the program Due to expertise and natural leanings CEI started with Stage Three Clinical training Nurse Practitioner train-the-trainer End-of-Life Nursing Education Curriculum (ELNEC) Discovered that all levels of conversation regarding Life Care planning are more difficult for some individuals both participants and staff 27
Lessons Learned SW did not feel that ELNEC training met their needs SW felt they wanted SW specific training Nurses felt course was too much too quick Medical providers still initiating discussion and directing conversations 28
What are the barriers to communication about end of life? Culture Language Education Biases Religion Fear, denial, anger, timing Preserving hope 29
Breaking bad news (SPIKES) S-setting up the interview, setting the stage P-assessing the perception I-obtain the invitation K-giving knowledge and information E-empathy S-strategy and summary 30
Getting the most out of life: Social work training, July 2016 Empathy Conversation project Documentation 31
Testimonials I felt that having the experience of completing our own advance directive changed how I think about completing advance directive with participants. I also really enjoyed the experience of the letter because I could think about my own decisions around what I would want at the end of life. 32
Testimonials I noticed that using the terminology final arrangements rather than funeral arrangements opens communication more and allows for conversation about people s lives. 33
Next Steps Implement all phases of the Life Care program starting with phase 1 and at a different site in August of 2016 34
Pre ELNEC training (started with new participants) 7/1/2015 to 11/30/2015 (Eastmont initial pilot) 1 participant disenrolled prior to 30 days 92% POLST within 30 days enrollment (12/13) 100% within 90 days enrollment (13/13) 23% AD completion within 6 months and total to present 35
ETC Pilot Demographics 13 Participants 36
ETC Pilot Demographics (continued) 37
Pre ELNEC-training JBC (New Participants at JBC --19) 7/1/2015 to 11/30/2015 (JBC) 11% POLST within 30 days enrollment (2/19) 52% POLST within 90 days enrollment (10/19) 63% POLST within 6 months enrollment (12/19) 6 no POLST of new enrollees from July to November 1 disenrolled and moved 21% AD completion within 6 months of enrollment 38
JBC demographics 39
JBC demographics (continued) 40
Goals 100% completion of Advance Health Directive for new participants within 90 days of enrollment. Any current participant without any of these tools and/or decisions made will be completed at the next annual evaluation. Therefore, 100 percent of all participants will have had the opportunity to participate in the Life Care Program and complete the documentation within 12 months. 41
Additional opportunities Notary will be coming on site Health information coordinator (HIC) tracking POLST and AD completion, update census Train team regarding assessment and communication Identify barriers to AD completion Coordinate with RCFE administrators who maintain AD and final arrangements for their residents 42
Conclusion Life care is about living and emphasizes early decision making throughout journey Supported throughout time in CEI, transitions in care that affect physical, psycho-social, emotional, spiritual, financial and MORE Complete POLST, advance directive and Medical & Financial DPOA This is an ongoing and evolving process IF WE CAN DO IT, YOU CAN DO IT! 43
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ACKNOWLEDGEMENTs Linda Trowbridge, CEO Fiona Wilmot, MD, MPH, Chief Medical Officer Dianna Garrett, Director of Communication and Planning Onita Brown, Member Services Coordinator Elizabeth Reid-Gonzales, Quality & Resource Manager Alicia English, PhD, Director of Behavioral Services Crystal McCloud, JBC Center Director Theresa Galano-Burkett-communications specialist Sandee Quinones-JBC activities director
Primary Palliative Care? To support best quality of life, regardless of stage of disease or need for other therapies, in accordance with patient values and preferences Pain and symptom management 46
Palliative Care 47
PERCEPTIONS of PROGNOSIS Optimism, Intuition, and Faith 36% Optimism: We want to be positive that s why we re saying he s going to have a 90% chance to survive. We do not want to be negative. God: My daughter is very, very sick, but I believe her faith in God and her faith in being cured will give her the strength to survive. 48
Power of Bedside Support -13% Support of family, friends, support groups, and church Well, I think a lot of his surviving has been with the help of myself and my daughter... the fact that we ve been by his side, whenever we possibly can, telling him to think positive and I think that really helped him a lot. 49
Patient s Physical Appearance or Status 64% Physical appearance: Facial expression, skin hue, comfort or discomfort, I think he has a 90% chance of recovery today he opened his eyes when we were talking to him. 50
Perceptions of Prognosis Surrogates estimated on average, the patient s chance of survival was 69% 55% of patients survived hospitalization Received prognostic information from physician 79% Based prognosis partially on info from MD 47% Based prognosis solely on info from physician -- 2% 51
Palliative Care provides opportunities! 7 out of 10 deaths among Americans each year are from chronic diseases. Heart disease, cancer, and stroke account for more than 50% of all deaths each year. (need footnote) As Ellen Goodman noted in her recent Harvard Business Review article Die the Way You Want To, 25% of Medicare expenditures are incurred by the 5% who are in their last year of life. 52
Your life Just Got Better My long-time friend I see sadness in your eyes I m sorry, I can t disguise, I ve got bad news The cancers back and it spread everywhere The doctors say there s not much they can do but comfort you 53
Your Life Just Got Better continued I ll help you live day s pain free Whatever you need, just tell me Tell me how that sounds to you? What do you look forward to My girl has a baby on the way and I ll Live each day My girl holds her baby boy and shares Her joy before I say goodbye When my heart beat stops and I can t breathe 54
Your Life Just Got Better continued MY friend, if I m gone, let me be Please respect my choice to not prolong my suffering I ve had my share of living, let me go and be at peace So long my friend Don t be scared I know that you will miss me But just prepare to see me down the bend Until then this is goodbye 55