A PORT IN THE STORM A DAY OF EDUCATION AND DISCUSSION ABOUT EQUITABLE ACCESS IN PALLIATIVE CARE FOR STRUCTURALLY VULNERABLE PEOPLE IN VICTORIA

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1 A PORT IN THE STORM A DAY OF EDUCATION AND DISCUSSION ABOUT EQUITABLE ACCESS IN PALLIATIVE CARE FOR STRUCTURALLY VULNERABLE PEOPLE IN VICTORIA DECEMBER, 2015

2 1 THE EQUITABLE ACCESS TO CARE STUDY Kelli Stajduhar University f Victria Sheryl Reimer-Kirkham Trinity Western University Ryan McNeil BC Centre fr Excellence in HIV/AIDS Kristen Kvakic AIDS Vancuver Island Grey Shwler Victria Cl Aid Sciety Danica Gleave Victria Cl Aid Sciety Caite Meagher Cl Aid Cmmunity Health Centre Caelin Rse Victria Hspice Bruce Wallace University f Victria Bernie Pauly University f Victria Naheed Dsani St. Michael s Inner City Health Staff: Ashley Mllisn University f Victria Carlyn Shwler University f Victria Kelsey Runds University f Victria Taylr Teal University f Victria A PORT IN THE STORM COMMUNITY REPORT BACK On Thursday, Octber 29, the University f Victria Equitable Access t Care Study Team (PI Kelli Stajduhar), Victria Hspice, and the Palliative Outreach Resurce Team (PORT) hsted an interactive and educatinal event abut palliative care fr structurally vulnerable peple. Structural vulnerability recgnizes that particular grups f peple are mre vulnerable t harm as a result f intersecting factrs (e.g., pverty, hmelessness, gender, disability, race, illicit drug use, mental health issues, etc.). The bjective f this event was t fster dialgue between frmal palliative care prviders (e.g., hspice persnnel, hme care wrkers, etc.) and dwntwn service prviders (i.e., health, husing, faith and scial service rganizatins) t identify challenges in ur cmmunity with regards t palliative care access fr these ppulatins. The day began with a welcme frm City Cuncillr Marianne Alt wh spke abut the significance f dignified palliative care services fr Victria s inner city ppulatin. Participants then heard abut current research n palliative care and structurally vulnerable ppulatins thrugh presentatins by Dr. Kelli Stajduhar, Lead Investigatr with the University f Victria's Equitable Access t Care study, and Ryan McNeil frm the BC Centre fr Excellence in HIV/AIDS, a leading researcher in the field. A series f presentatins fllwed n prmising practices in palliative care frm Dr. Naheed Dsani, lead physician with PEACH (Palliative Educatin and Care fr the Hmeless) in Trnt; Dr. Sue Burgess, a physician prviding palliative care in Vancuver s Dwntwn Eastside; and Victria's Palliative Outreach Resurce Team, represented by Grey Shwler. After lunch, a panel f practitiners frm Angela McNulty-Buell (Pacifica Husing), Dr. Danica Gleave (Cl Aid Cmmunity Health), Dr. Deb Braithwaite (Victria Hspice), Rev. Allen Tysick (Dandelin Sciety), Darren Schweitz (Our Place Sciety), and Kristen Kvakic (AIDS Vancuver Island) spke abut the challenges t prviding and accessing palliative care fr the peple they serve. The remainder f the event was spent in small grup discussins where participants with diverse emplyment backgrunds, including frnt line wrkers, health care prfessinals, managers, executive directrs, spiritual practitiners and peple with lived experience f pverty and hmelessness participated in discussins abut challenges t palliative care access in Victria. Finally, Dr. Dsani facilitated break-ut grups where participants had the pprtunity t discuss hw 7 palliative care principles (i.e., flexible admissin

3 2 criteria; cnsistent and cntinuus case management; maximize flexibility f prgram plicies; fster peer-supprt netwrks; emply diverse and hlistic care mdels; priritize client dignity; prvide palliative care within intensive supprtive husing) culd be implemented in varius rganizatins fr a cmmunity-based respnse t this imprtant issue. Evaluatins frm the day suggest that the day was a great success and peple left feeling inspired. The Equitable Access t Care study will cntinue with data cllectin until spring We plan t hst anther cmmunity frum with peple wh have lived experience f pverty and/r hmelessness t seek feedback n findings and prject recmmendatins. Thanks t ur generus funders and cntributrs: The Svereign Order f St. Jhn f Jerusalem Knights Hspitaller Victria Cmmandery, Victria Hspice, the Palliative Outreach Resurce Team (PORT); the Canadian Institutes f Health Research (CIHR) and the UVic Centre n Aging; and ur presenters, panelists and facilitatrs, and Terry Ducette fr the cver pht. The fllwing are key themes that emerged frm small grup discussins at A PORT in the Strm. At tw pints during the day, the participants were divided int small grups. The first small grup sessin was fcused arund the questin: In yur pinin/experience, what are the majr challenges in ur cmmunity in terms f prviding palliative care t structurally vulnerable peple? and the secnd arund the 7 principles f palliative care facilitated by Dr. Naheed Dsani. Ntes were recrded n large sheets f paper by an appinted r elected grup facilitatr and cmpiled int themes by the EAC prject crdinatr. The purpse f this dcument is t cmpile what we heard frm peple in ur cmmunity abut palliative care fr structurally vulnerable ppulatins including recmmendatins fr imprving access t palliative care. This dcument represents a starting pint fr this discussin in ur cmmunity and it is ur hpe that this cnversatin cntinues t happen. Please see resurces at the end f the dcument fr mre infrmatin.

4 3 KEY THEMES AND RECOMMENDATIONS FROM A PORT IN THE STORM Theme 1: The need fr palliative educatin & awareness f the changing face f palliative care Fr the public, decisin makers and prgram designers: Hmelessness cuts a persn s life expectancy by 50% Need t change the face f palliative care fr public and prviders: recgnize that a palliative apprach is relevant fr thse living with chrnic, life-limiting cnditins, nt just lder adults wh are dying Need t change the definitin f hme and recgnize that fr structurally vulnerable peple, shelters, transitinal husing and supprtive husing may be hme Senir levels f gvernment need educatin as t what is needed n the grund Use f terminlgy t refer t structurally vulnerable ppulatins can reduce dignity (e.g., marginalized; hard-t-reach ) Fr cmmunity frnt line wrkers and utreach teams wh are nt specialized in palliative care: Need mre educatin n palliative care including hw t identify thse wh culd benefit frm a palliative apprach Increased supprt arund acknwledging death and knwing hw t have a cnversatin abut death and dying Culd there be a referral mdel fr supprt/netwrking arund death and dying issues? PORT is an excellent resurce fr infrmatin/resurces abut palliative care fr structurally vulnerable peple Fr health care prviders nt familiar with wrking with structurally vulnerable ppulatins wh are in need f educatin arund a palliative apprach t care: There are embedded assumptins arund care prvisin (e.g., access t a hme, family supprt, financial resurces) that make care fr this ppulatin much mre challenging. Need educatin n hmelessness and pverty Need fr educatin n hw t administer pharmaceuticals fr pain management fr peple wh use drugs Health care prviders wrking in palliative care, in hme care and in hme supprt may be nervus dealing with this ppulatin because they d nt have the training Educatin and netwrking with cmmunity utreach teams -- what des each team d? Culd they prvide palliative care and supprts? Need a different apprach t building trust with different ppulatins; skills in trust-building may nt transfer t ther ppulatins; nt everyne needs/wants t be treated the same way The prvisin f palliative care within institutinal settings, like palliative care units, des nt always wrk fr this ppulatin f structurally vulnerable peple. Issues identified included: Lack f privacy Restrictive plicies that d nt address the unique needs f the ppulatin Judgements frm staff because f the persn s lifestyle

5 4 The need fr palliative care services t expand t address the needs f structurally vulnerable ppulatins Fr clients: Harm reductin/using drugs/cultural safety peple need t be educated abut their rights and ptins t use substances when thinking abut entering palliative facilities Recmmendatin: The need fr diverse, hlistic care mdels Supprt mre multidisciplinary teams Champin systems that are inclusive and remve thse that are exclusive Challenge structural, plicy, prfessinal barriers Invlve cmmunity in service planning Integrate new interventins int existing mdels Use diverse mdels f care (e.g., nursing specialty fr structurally vulnerable ppulatins) Site fr supervised cnsumptin and palliative care Relatinal care: smther, singularly resurced, transitinally fcused, integrated system that takes peple thrugh early recgnitin f palliative needs all the way t death Theme 2: The need t cmbat stigma, fear and judgement in ur health services Prevalent stigma and judgement that peple chse t be hmeless; hmeless peple are dehumanized Structurally vulnerable peple wh are dying face a duble stigma arund hmelessness, multiple illnesses, substance use, etc. The prblem f peple being prfiled as hmeless when they walk thrugh the dr and need fr change in attitude in health care clinics and settings; lack f cultural safety fr this ppulatin Peple are alienated and scially islated; the fcus needs t be n trust and relatinship building Service prviders need t be accepting f difference and we need t shift the way we think abut the care we prvide fr this ppulatin Structurally vulnerable peple and many frnt line wrkers d nt trust that the system will prvide adequate and humanized care in the face f dire need Language used t talk abut structurally vulnerable peple can smetimes perpetuate stigma

6 5 Recmmendatin: The need fr health care prviders t be self-reflective in their practice Educatin and self-reflectin n wn behaviurs and beliefs can help health care prviders t build skills Shift framing frm individual risk factrs t structures that create risk (e.g., being Indigenus is nt a risk factr; being part f a clnial system creates risk) Health care prviders need t understand the cultures f the peple they serve in rder t plan apprpriate and acceptable services Change ur language t reflect the change in ur care fcus t structural cnditins Recgnize that we are flawed peple t and that ur flaws help us t be genuine The imprtance f transferring pwer t reduce differences in pwer and prmte dignity; acknwledge that race is pwer differential Recmmendatin: Fstering peer supprt netwrks fr educatin and systems navigatin Invaluable t have experiential vices as part f care design and delivery; excellent fr relatinship building and educatin Start with a dedicated team Imprtance f develping pprtunity/space fr apprpriate mentrship Mnetary incentives peer psitins need t be paid psitins Serving life: infrmal buddy system and care prvider; frmal create training and educatin prgram within team Needs t be an integrated cmmunity initiative Lk t peer grups and prgrams in the cmmunity (e.g., Umbrella; Hspice 101; Use Street Schl frm AVI & SOLID as mdels fr training) Theme 3: Navigating the system & challenges accessing palliative care resurces Budget cuts and cntinual rerganizatin f health services has resulted in discntinuity f care; this creates a situatin where there is little ability t fcus n trust and relatinship building, an essential cmpnent f caring fr structurally vulnerable peple Cmmunity grups and agencies are nt wrking tgether; cmpetitin fr funding pits agencies against each ther (nt just cmmunity rganizatins but plicing, the City; health authrity, etc.) Plicies prhibiting health care prviders frm serving structurally vulnerable peple (e.g., nt allwing health care prviders t enter certain husing cmplexes) place them in psitins f having t break the rules f their rganizatin in rder t prvide access t services that are desperately required by peple

7 6 Navigating the health care system fr structurally vulnerable peple and service prviders is a majr challenge Histry f vilence fllws peple (e.g., purple dtted ) Rules and guidelines are restrictive t peple getting service where they live (e.g., shelters/ sme supprtive husing units); currently there is little flexibility and liability is a cncern Hme care plicies deny access t certain buildings because f safety cncerns Lack f specialized palliative care resurces fr structurally vulnerable ppulatins The ptential fr specialized resurces have the ptential t re-stigmatize There is a lack f palliative care resurces, in general Lack f respite beds is a majr challenge; waiting list fr respite beds Access t palliative care beds that require a per diem t be paid create a barrier t access fr peple wh cannt affrd it Lack f transitinal care beds Lack f specialized hspice bed/services within shelters The requirement f a family dctr fr accessing palliative care r chrnic disease management: Lack f GPs -- Over 10,000 rphaned patients in Victria Challenging t access walk-in clinics (e.g., ne file, nt ne dc; challenge getting t walk-in clinics) Access t medicatins t supprt quality end f life care is prblematic Recmmendatin: Cnsistent & cntinuus case management fr systems navigatin Walk beside as a tur guide rather than telling peple what t d Meet ut in the cmmunity rather than expecting client t cme int ffice; culd take a lng time t cme int an ffice Safe, shared space; build trust by being there in persn Cnsistency in staff; this need is especially imprtant fr this ppulatin Trust and safety needs t be built thrugh little gestures that recgnize the persn s humanity Services need t transfrm Health care prviders can use principles f taking the time, shwing up/accuntability, human cnnectins, gd fr health care prvider wellness and care fr client Health care prviders wh have built trust can vuch fr ther prviders n the team and say that the resurces are trustwrthy Nthing abut us withut us ; interdisciplinary teams shuld include peer supprt wrkers Recmmendatin: Flexible eligibility & admissin criteria Clarify and educate abut the criteria fr palliative care services Services need t be flexible t recgnize peple s agency Harm reductin needs t be integrated

8 7 Theme 4: Lack f husing and place fr structurally vulnerable peple in Victria Lack f physical space fr structurally vulnerable peple in Victria The requirement f a hme t receive palliative care The lack f affrdable and apprpriate husing in Victria Can t have hme deaths withut a hme Husing shuld be tied t incme (i.e., scial husing) Case management t supprt lng term Death at hme can wrk with supprt and educatin Peple s medical needs becme t high fr supprted r transitinal husing and there is nwhere t g but acute care Prviding gd treatment management when ne f the presenting issues is a husing issue Ht ptat : Needing t evict smene s they get medical care Lack f palliative beds in shelters r supprted husing facilities Shrt term recmmendatins: Recgnize that palliative care happens in cmmunity as well as in Hspice and thrugh frmal palliative care services; change the definitin f hme Sme supprted husing facilities are prepared t keep residents there at end-f-life with supprt frm medical prfessinals Husing criteria include palliative as criteria t scring/need fr husing Fund sme peple in shelter were cmfrtable; allws hme address, stability Lng term husing recmmendatins: Link t the City s Husing First Municipal Husing Strategy fr husing Need quickly accessible, nimble husing respnse fr palliative care Prvide Palliative Care within Intensive Supprted Husing Harm reductin based Multidisciplinary care team ( map readers ; peer wrkers!) Multiple levels f care within ne building fluidity, flexibility, cntinuity f care, maintain cmmunity

9 8 Theme 5: Risk management and the impact n access t care Banning/limits fr hme care re: buildings in cmmunity because f safety cncerns When smene becmes palliative, their hme becmes a wrkplace and wrk safe applies Cmbinatin f smking and xygen an issue Medical cannabis smking als an issue Challenge f balancing wrk safety and needing t prvide services; May nt be real fears Risk management plicies mean that services are nt prvided There is a list that limits hme care visits t certain buildings: is list up t date? Rules abut entering places with cckraches has been an issue at times Defining the caregiver: Hme care nurses need t be able t trust a primary caregiver with meds need palliative utreach wrkers Need right hme care wrker at right time Outreach nurses can d sme f the same things as hme care Cmmunicatin and avid duplicatin Need mre cllabratin Recmmendatin: Maximizing flexibility f prgram plicies Service prviders and peple wh use the services shuld be invlved in develping the plicies Flexibility in wrk safe issues and liability Smking is a barrier t care; need flexibility in nn-smking plicies: Slutins (like ventilatin systems) may already exist in ther places that culd be replicated Having hme care meetings in ther lcatins like Tim Hrtns, where pssible Currently nt many fficial plicies arund illegal drug use and alchl Spaces designed fr a variety f peple hw can we adapt rules s that everyne can get care? Designing rms t be cleaned easily? Jint visits between hme care staff and husing/utreach staff Supprting street family and ther residents in the building t be primary care givers Theme 6: Challenges identifying and prviding palliative care t structurally vulnerable clients Challenges identifying wh the palliative clients are and getting the care early: Challenges in deciding wh and when t receive care all f ur clients are palliative Als need skills t knw whether a persn is dying/palliative with all ptential health cmplicatins. Fr example, a small additinal illness culd tip them ver the edge Challenges getting palliative designatin thrugh Hme & Cmmunity Care Wh wuld benefit frm a palliative apprach? Challenges prviding palliative care:

10 9 Peple can slip thrugh the cracks very easily; have t be diligent, extra attentin and care Unable t access, cmmunicate r find peple Crystal methamphetamine causing instability in determinants f health Individual barriers: Peple face challenges with scial anxiety; mental illness; fitting nrms; stigma Peple have cmpeting pririties and are fcused n getting what they need t survive (including incme, fd, shelter and substances) Relatinships with health care prviders need time Need fr facilitated admissin t palliative care Scial islatin and need fr engagement Barriers t affrd csts assciated with dying (e.g., medical supplies nt cvered) Recmmendatins: Educatin n symptm management with peple wh use drugs: Need mre mental health educatin in primary health care and address the destabilizatin (mentally and physically) frm illicit drug use Need t lk at respnses and ways f helping individuals manage illicit drug use Priritize Client Dignity: Dignity is a cre issue but taken fr granted Dignity means different things t different peple Respect client chice Checking assumptins abut structurally vulnerable peple e.g., incme; number f hspitalizatins/emerge cntacts; what is a gd death? Wh is change being made fr? Being caring and listening; giving time Imprtance f cnsistent prviders Fcus n wellness (nt just physical) Need t address childhd trauma

11 10 NEXT STEPS The Equitable Access t Care study will be cmpleting data cllectin by the fall f 2016 and there will be future pprtunities t engage in this tpic and recmmendatins emerging frm the study. Next year, we will als hst an event fr peple with lived experience f pverty and hmelessness t prvide feedback n study recmmendatins. In the meantime, feel free t take a few minutes and explre the ipanel website ( a cllabrative with the cmmn gal f advancing the further integratin f a palliative apprach int the healthcare system. If yu are interested in cnducting an interview with us abut yur experiences prviding r accessing palliative care fr structurally vulnerable peple r if yu have any cmments r suggestins fr the research wrk ging frward, please dn t hesitate t be in tuch at equitableaccess@uvic.ca. Fr mre infrmatin abut PORT, palliative care fr peple wh are structurally vulnerable, r t bk a wrkshp please see the PORT descriptin n the next page.

12 11 THE PALLIATIVE OUTREACH RESOURCE TEAM (PORT) IN VICTORIA Infrmatin fr Health Care and Husing Staff Healthcare prviders and cmmunity partners in Victria, BC are netwrking t imprve access t and the quality f hspice palliative care fr peple wh are dying and wh live n the street r are hused unstably. PORT members represent different prfessins and disciplines frm: Cl-Aid Cmmunity Health Centre AIDS Vancuver Island Dandelin Sciety Our Place Victria Hspice University f Victria Schl f Nursing Serving peple wh live n the street r wh are hused unstably means hnuring the unique experiences, hpes, strengths, and preferences f each individual and their family. Prviding care may mean wrking with: Fragmented and irregular health care Legacies f prejudice, clnialism, vilence Cmplexities f living with mental health issues Cmplexities f living with substance use issues Difficulties cntacting family T build n existing strengths within the cmmunity and address diverse preferences f health care recipients, the PORT pririties are t: Advance an eths f dignity Advcate fr resurces & services within the Health Authrity Imprve crdinatin f care amng prviders & agencies Offer bereavement supprt Offer educatin t supprt the prvisin f high quality care Advance research relevant t the abve pririties Fr further infrmatin abut PORT, t bk a wrkshp, r t cnsult abut a client, please cntact ne f the fllwing: Grey Shwler r Caite Meagher, Cl Aid Sciety Kristen Kvakic, AIDS Vancuver Island Caelin Rse r Lucie Mattar, Victria Hspice urplace

13 12 THANK YOU TO EVERYONE FOR MAKING THE DAY SUCH A SUCCESS!