Blueprint for Community Excellence at End of Life December 2014

Transcription

1 Blueprint fr Cmmunity Excellence at End f Life Prepared by Chris Phillips; Mary Ann Percy; Margaret Jacbsn, MD; Bree Jhnstn, MD; Casey Shillam, PhD, RN-BC; Larry Thmpsn Overview A mvement is taking hld in America that is supprted by munting evidence and prpelled by persnal cnvictin. The central idea f this mvement is quite simple: death is best understd as a natural part f life, and we are better ff as a culture if we act as if this were true. In April, 2014, the Whatcm Alliance fr Health Advancement (WAHA) cnvened a Task Frce cmpsed f experts and cmmunity leaders wh were asked what it wuld take t transfrm Whatcm Cunty int a center f excellence fr all thse with and impacted by serius life-threatening illness. Fcusing n advance care planning, palliative care, prvider training, and cmmunity culture, the Task Frce is putting frth a blueprint fr cmmunity excellence that includes a sectin utlining shrt and lng term financing issues. An imprtant vehicle fr realizing this plan is the establishment f an End-f-Life (EL) Calitin. Overseeing the implementatin f the recmmendatins utlined in this paper, this grup wuld include healthcare and scial service prviders, educatrs, and cmmunity leaders frm a variety f fields. WAHA wuld like t thank the Task Frce vlunteers wh shared their experience, knwledge, and wisdm. In additin t meeting regularly ver a six mnth perid, these individuals spent cuntless hurs reviewing articles, meeting in subgrups, and writing, reviewing, and apprving White Papers. The wrk f the Task Frce was supprted by generus grants frm the RiverStyx Fundatin, Whatcm Cmmunity Fundatin, and Chuckanut Health Fundatin.

2 VISION Whatcm Cunty is a cmmunity where death is understd as a natural part f life, where n ne lives with untreated pain as they apprach life s end, where the entire spectrum f residents chsen wishes fr their care are knwn, respected, and hnred. Peple with chrnic r end-f-life illness, regardless f age, live their last mnths t their fullest, with their pain and suffering alleviated, their fears and questins heard and addressed, and their relatinal, spiritual, and cultural needs met with lved nes arund them. Our cmmunity is ne where family and friends feel supprted up t and fllwing the death f a lved ne. A cmplete range f prfessinal and vlunteer services t supprt this visin is rganized, easily accessible t all, and financially sustainable. Task Frce Marie Eatn, PhD Chair Prfessr, Western Washingtn University Ashley Benem Death Midwife/Massage Practitiner/Artist Margaret Jacbsn, MD PHMG/Whatcm Hspice Bree Jhnstn, MD, MPH PHMG/Palliative Care Serge Lindner, MD Center fr Senir Health, PHMG Dan Murphy Executive Directr, Nrthwest Reginal Cuncil Tnja Myers Administratr, St. Francis f Bellingham Chris Phillips Directr f Cmmunity Affairs, PeaceHealth St. Jseph Medical Center Berdi Saffrd, MD Medical Directr, VP f Quality, Family Care Netwrk Casey Shillam, PhD, RN-BC Nursing Academic Prgram Directr, Western Washingtn University Sandy Strk Death Café Funder, Cmmunity member Larry Thmpsn Executive Directr, WAHA Bbbi Virta Pastr, United Church f Ferndale Jsselyn Winslw Alzheimer s advcate, Cmmunity member Mary Ann Percy, MS Advanced Care Specialist, WAHA Liz Jnes, MPH Health Plicy Specialist, WAHA Page ii

3 INTRODUCTION There is a grwing awareness natinwide abut the imprtance f end-f-life care. 1 The Institute f Medicine (IOM) Reprt, Dying in America, released in mid-september 2014, recmmends a persn-centered, family-riented apprach that hnrs individual preferences and prmtes quality f life. The IOM Reprt emphasizes that implementing this visin is a matter f natinal pririty and urgency. In Whatcm Cunty there is a rising tide f initiatives, interest, and excitement abut the idea f creating imprved care fr all thse with serius illness. Whatcm Cunty is already recgnized statewide as a leader in healthcare advancement and access, and we enjy a cmmunity-wide culture f cllabratin. A significant amunt f activity related t end-flife care is already ccurring in the Whatcm area. Hwever, it tends t be self-cntained, and lacks a cherent visin, with n plan fr wrking tgether tward a cmmn purpse. The verarching gal f this reprt is t kick-start the visin, mving tward a cmmunitywide system f services designed t be the best in America. The Whatcm Alliance fr Health Advancement (WAHA) cnvened a Task Frce and spnsred research t describe what it wuld take fr Whatcm Cunty t becme a cmmunity f excellence fr all thse with and impacted by serius and life-threatening illness. This cllabrative grup fcused n identifying essential cmpnents f such a cmmunity, develping a plan fr prgram implementatin and sustainability, and determining benchmarks fr measuring success. This Executive Reprt summarizes the wrk f the Task Frce ver the last six mnths. The Task Frce prduced five White Papers as preparatry material intended t prvide guidance fr hw Whatcm Cunty can becme a cmmunity f excellence fr end f life. The White Papers n the fllwing tpics that helped infrm the develpment f this Blueprint are psted n the WAHA website: Advance Care Planning, Palliative Care, Cmmunity Culture, Prvider Training, and Financing the Future. This summary paper prvides a brief backgrund statement fr each f these tpics, alng with identified keys t excellence, cmmunity assets, and recmmended steps tward realizing the Blueprint visin. 1 End f Life is increasingly in the news and the public eye, with frequent newspaper stries abut advance care planning, Death Cafes spruting up in cmmunities thrughut the cuntry, Palliative Care Services nw ffered in 61% f U.S. hspitals with mre than 50 beds, the availability f Death with Dignity in Washingtn State, CMS ffering funding fr numerus pilt prjects related t end-flife care, and Washingtn State s Bree Cllabrative establishing a wrkgrup in 2014 t address end-f-life care issues. Page iii

4 BLUEPRINT 1. ADVANCE CARE PLANNING BACKGROUND: Advance care planning (ACP) is an rganized prcess f cmmunicatin t help individuals understand, reflect upn, and discuss gals fr future healthcare decisins in accrdance with their values and beliefs. When this prcess is dne well, it can result in a written plan an Advance Directive that accurately represents the individual s gals, values, and preferences, and helps prepare thers t make healthcare decisins cnsistent with these preferences. In the absence f such a plan medical persnnel and family members are left guessing abut the patient s wishes, ften resulting in unnecessary stress and strife. KEYS TO EXCELLENCE A targeted and nging public campaign aimed at establishing family cnversatins and Advance Directives as a cmmunity nrm. Fcus n primary healthcare practices, with strategies fr engaging cmplementary and alternative prviders, financial planners, elder attrneys, faith cmmunity leaders, tribal, Hispanic and ther cultural and ethnic cmmunities. A structure that makes it easy fr peple t prepare advance directives and fr healthcare prviders t access the directives and carry them ut. COMMUNITY ASSETS The WAHA End f Life Chices prgram has tw years f experience ding this wrk and has learned a lt abut the best ways t train vlunteers, engage with health prfessinals and cnduct cmmunity utreach. WAHA has develped state-f-the art marketing and educatinal materials that include what culd becme the standard Whatcm Cunty Advance Directive. RECOMMENDATION Under the auspices f a newly frmed cmmunity EL Calitin, initiate a campaign t reach the gal f 60% f all peple ver age 65 having a prperly filed Advance Directive ( 60 by 65! ). The campaign shuld have the fllwing attributes and characteristics: Staffed and rganized by WAHA with financial supprt frm the cmmunity Cnducted in partnership with primary care clinicians Prmted by the legal and faith cmmunities and ther key cnstituencies Uses standard Advance Directives Related t a reliable dcument filing prcess at PeaceHealth St. Jseph Medical Center that results in crss-rganizatinal electrnic access Page 1 Blueprint fr Cmmunity Excellence at End f Life

5 2. PALLIATIVE CARE BACKGROUND: Palliative care is specialized care fr peple with serius illnesses. It is fcused n prviding patients with relief frm the symptms, pain, and stresses f a serius illness. The gal is t imprve quality f life fr bth the patient and family. Palliative care is prvided by a team f dctrs, nurses, scial wrkers, chaplains, and ther specialists wh wrk tgether. It is apprpriate at any age and at any stage in a serius illness, and can be prvided alng with curative treatment. It is widely recgnized that palliative care imprves quality f life fr patients with advanced illness and their families while reducing csts. Inpatient palliative care is prvided in the hspital setting, and utpatient palliative care is prvided in any ther setting in line with patient preference. KEYS TO EXCELLENCE Strng clinical leadership well versed in symptm management and the imprtance f emtinal, psychscial, and spiritual supprt. Prgraming that wuld be well-crdinated with existing services, and available acrss the cntinuum f care, including hmes, assisted living, and skilled nursing facilities, and when apprpriate, alngside ther specialty services r clinics. COMMUNITY ASSETS Whatcm Cunty has established a significant array f palliative care services, including a strng Hspice Prgram, an inpatient palliative care cnsultatin service, and a lw vlume utpatient palliative care clinic fr patients with advanced cancer (based in the PeaceHealth Cancer Center). FCN maintains a lw vlume hme-care prgram fr vulnerable patients. Additinally, there is a rbust cmmunity f cmplementary practitiners prviding supprt and palliatin fr seriusly ill peple. RECOMMENDATION Under the auspices f the EL Calitin, cmplete planning fr a cmmunity based utpatient palliative care service. This planning shuld be guided by knwledgeable clinicians (Bree Jhnstn, MD and Meg Jacbsn, MD) and staffed by WAHA with in-kind staff supprt frm bth PeaceHealth and Family Care Netwrk. The aim f this wrk, (which has recently begun) is t: Prduce a plan that includes immediate steps t build cmmunity based shared services, blending existing resurces t create a prgram which can evlve int a cmprehensive service with greater capacity. The new utpatient prgram will be a cmmunity partnership that will initially be subsidized by a cmbinatin f lcal and reginal grant surces, in-kind staff supprt, and will include a plan fr nging financial sustainability. Page 2 Blueprint fr Cmmunity Excellence at End f Life

6 3. PROVIDER TRAINING BACKGROUND: It is widely recgnized that palliative care imprves quality f life fr patients with advanced illness and their families, reduces csts, and advances the Triple Aim. The need fr palliative care is grwing, due t increases in chrnic and serius cnditins and the aging ppulatin s desire fr quality f life as well as quality f care. A wrkfrce f traditinal, cmplementary, and alternative care prviders in all disciplines, specialties, and practice settings, trained in basic palliative care cmpetencies, is essential t meeting this need. KEYS TO EXCELLENCE Organizatinal cmmitment and leadership frm PeaceHealth, Family Care Netwrk (FCN), and area nursing hmes and hme health agencies. Training curriculum and pprtunities that are inclusive f the multiple disciplines that are a hallmark f palliative care, including allpathic physicians and nurses, certified nursing assistants, scial wrkers, chaplains, and cmplementary care prviders. COMMUNITY ASSETS PeaceHealth is in the prcess f establishing basic palliative care training requirements fr physicians treating patients with serius life-threatening illness; all staff at Family Care Netwrk Clinics are receiving training in Advance Care Planning cnversatins as f late 2014; the RN-t-BSN Prgram at Western Washingtn University (WWU) is training nurses in palliative care cmpetencies. The Palliative Care Institute assciated with the WWU Nursing prgram is well psitined t design and serve as the hub fr a crss-rganizatinal, multidisciplinary training prgram. RECOMMENDATION Under the auspices f the EL Calitin, the Palliative Care Institute in cllabratin with the PeaceHealth Department f Learning and Develpment shuld develp a detailed plan fr ensuring that basic palliative care cmpetencies are established fr the cntinuum f traditinal, cmplementary, and alternative care prviders in all disciplines, specialties, and practice settings. The plan wuld aim t imprve the knwledge, skills, and attitudes regarding: 1) pain and symptm management; 2) cmmunicatin; 3) cultural cmpetence; and 4) ptimal resurce utilizatin and care crdinatin. Training pprtunities need t be a mix f cmmunity interdisciplinary wrkshps; nging Cntinuing Educatin events within disciplines; and n-line training mdules riented tward specific cmmunity-based and clinical issues. Page 3 Blueprint fr Cmmunity Excellence at End f Life

7 4. COMMUNITY CULTURE BACKGROUND: Our generatin is the first that has cared fr parents r ther lved nes in a health care system that has the ptential fr prviding treatments that may prlng the length f life while reducing the quality f life and these experiences are changing ur feelings abut what chices we want at the end-f-life. Additinally, ur cmmunity is becming mre diverse K and that change is reflected in the attitudes, emtins, and custms related t death and dying. There are many critical questins that need t be asked and cuntless answers and slutins that have yet t emerge. Helping individuals and families grapple with end f life issues is part f what it means t live in a caring cmmunity. KEYS TO EXCELLENCE Cmmunity engagement in realizing the Blueprint Visin thrugh nging and evlving educatinal events, small grup cnversatins, and artistic expressins f issues related t death and dying. Institutinal supprt frm majr educatinal, legal, faith, and healthcare rganizatins aimed at understanding and accelerating psitive cultural trends such as the de-medicalizatin f death and dying, and the activatin f peple in their wn, and their family s end f life chices. COMMUNITY ASSETS The Palliative Care Initiative at WWU, Faith Cmmunity Nurses, and the Hspice Vlunteer Recruitment and Training Prgram. Numerus grassrts initiatives exist in ur cmmunity, including Death Café, Death Midwifery Service, Bellingham Threshld Chir, and Wmen with Wings. Whatcm Cunty enjys cnstructive relatinships at the State level with Cmpassin & Chices f Washingtn, a leading prpnent f the WA State Death with Dignity Act; Hnring Chices Pacific Nrthwest; and the Washingtn End-f- Life Calitin. RECOMMENDATION A central lcatin fr infrmatin and resurces abut death and dying in ur cmmunity shuld be made available. Mst immediately, the EL Calitin shuld establish a website that is rganized with the same categries utlined in this Blueprint and includes infrmatin abut Death with Dignity. The EL Calitin and interested cmmunity partners shuld als explre the pssibility f establishing a place in Bellingham that culd huse activities assciated with the Blueprint. Under the auspices f the EL Calitin, the Palliative Care Initiative at WWU shuld develp a cmprehensive apprach t tending cultural change in ur cmmunity that calls upn the resurces at the University, (e.g. the Cllege f Business and Ecnmics and Cllege f Fine and Perfrming Arts) and maximizes the interest and engagement f a range f cmmunity grups and partnerships. Page 4 Blueprint fr Cmmunity Excellence at End f Life

8 5. FINANCIAL SUSTAINABILITY BACKGROUND: While mst medical services, including end-f-life care, are reimbursed n a fee-fr-service basis, ther payment mdels such as pay fr crdinatin, bundled payments, pay fr perfrmance, shared savings, and capitatin may prvide mre innvative and patientcentered mdels fr prviding end-f-life services. A number f existing clinical prgrams have shwn prmise in utilizing these innvative mdels t prvide end-f-life services, including Medicare Special Needs Plans, Partners in Palliative Care, and Life Passages. KEYS TO EXCELLENCE Recgnitin by all cncerned that healthcare and cultural nrms regarding death and dying are changing; fee fr service is shifting t ppulatin-based payment methds, and quality f life cncerns are driving change in the type f care that peple want fr themselves and their lved nes. If ur aim is excellence, there needs t be a cncurrent recgnitin that large scale change takes time, and there will be stages f develpment that require pilt prjects and philanthrpic investment. COMMUNITY ASSETS There are a number f philanthrpic rganizatins in ur cmmunity that have an interest in end-f-life issues, including RiverStyx, the Hspice Fundatin, Chuckanut Health Fundatin, the Whatcm Cmmunity Fundatin, and the WWU Fundatin. WAHA has significant develpment and healthcare financing expertise t lead a step-wise planning effrt that can supprt the realizatin f the Blueprint Visin n a lnger term basis. The PeaceHealth System appears philsphically cmmitted t end-f-life excellence, and als has enugh market-share t ptentially mve the rest f ur lcal health care delivery system in a similar directin. RECOMMENDATION Fllwing initial cnversatins with ptential funding partners, the EL Calitin, with supprt frm WAHA, shuld prepare a set f interrelated grant applicatins t a brad range f funders that wuld supprt the implementatin f the recmmendatins utlined in the Blueprint. WAHA shuld cnvene representatives frm PeaceHealth, Family Care Netwrk, insurers, and ther prviders t ask fr engagement and cmmitment t the further design f care payment strategies that culd supprt the phased build-ut f a full cntinuum f services needed t prvide excellent end-f-life care fr peple in ur cmmunity. Page 5 Blueprint fr Cmmunity Excellence at End f Life

9 CONCLUSION The EL Task Frce is recmmending that WAHA serve as the backbne rganizatin fr a newly cnstituted EL Calitin, and that this grup be asked t weave tgether the initiatives that are utlined in the Blueprint: A fcused Advance Directives campaign. The develpment f a cmmunity-based, crss rganizatinal utpatient palliative care prgram that builds n the current wrk f the PeaceHealth inpatient prgram and FCN utpatient clinic. A cmmunity-wide effrt aimed at ensuring that basic palliative care cmpetencies are established fr traditinal, cmplementary, and alternative prviders in all disciplines, specialties, and practice settings. The develpment f a central resurce in ur cmmunity that includes infrmatin n the full spectrum f available ptins regarding death and dying, and the marshaling f WWU and cmmunity resurces t accelerate cultural change. The cnvening f healthcare leadership in ur cmmunity fr the purpse f practively develping a plan fr maximizing the pprtunities presented by ppulatin-based payment mdels. While it is certainly pssible fr the lead rganizatins invlved in each f the initiatives utlined abve t develp their wn prgrams and funding pprtunities, the EL Task Frce is cnvinced that ur visin can nly be fully realized thrugh cmmunity cllabratin. Whatcm Cunty is pised and ready t enact significant change. Using this Blueprint and wrking tgether, we will becme a center f excellence in end-f-life care, and a best place t live and die in America. Page 6 Blueprint fr Cmmunity Excellence at End f Life

10 Tward an Integrated Cntinuum f End-f-Life Services Implementatin Steering Cmmittee EL Calitin Bree Jhnstn, MD (PHMG) Margaret Jacbsn, MD (Hspice/FCN) Berdi Saffrd, MD (FCN) Chris Phillips (PeaceHealth) Larry Thmpsn (WAHA) Casey Shillam, PhD (WWU) Dan Murphy, (NWRC) Sue Sharpe (CH Fundatin) Heather Flaherty (RiverStyx Fundatin) Cnsumer*, TBD Cnsumer*, TBD Inpatient Palliative Care Service Whatcm Hspice Inpatient & Outpatient Outpatient Palliative Care Advance Care Planning Prvider Training Cmmunity Culture Tending PeaceHealth Operated PeaceHealth Operated Lead TBD WAHA Operated WWU Palliative Care Institute Lead WWU Palliative Care Institute Lead Currently in peratin Recmmended additin * Cnsumer refers t a cmmunity member wh des nt have a direct prfessinal interest in palliative care and whse perspective is inclusive nt nly f the direct users f the service but als f the brader cmmunity needs fr a high quality, respnsive cntinuum f services. Page 7 Blueprint fr Cmmunity Excellence at End f Life

11 WAHA is a 501(c)(3) nnprfit rganizatin with a missin t cnnect peple t health care and t facilitate transfrmatin f the current system int ne that imprves health, reduces csts, and imprves the experience f care. The WAHA Leadership Bard includes cnsumers and cmmunity leaders frm the nnprfit, business, and gvernmental sectrs, as well as many lcal healthcare rganizatins. If yu have questins r cmments regarding this reprt, please cntact Mary Ann Percy at mpercy@hinet.rg r