Overview Of End-of-Life Care In Hong Kong Now And To The .

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Overview of End-of-Life Care in Hong KongNow and to the FutureProf Roger ChungJockey Club School of Public Health and PrimaryCare, The Chinese University of Hong KongDiane Threapleton, SF Lui, Nicole Kiang,Patsy Yuen-Kwan Chau, Eliza Lai-Yi Wong, Janice Lau, SamuelYeung-Shan Wong, Eng-Kiong Yeoh, Jean WooJCECC Conference: Collaboration in Creating CompassionateHolistic End-of-Life Care for the Future

World’s Quality ofDeath By Ranking2

Hong Kong Ranked 22 in the world!Highlights from the Report:– Palliative care moderatelydeveloped– Medical curriculumexposes students to thesubject, but courses arenot compulsory– Accreditation is given forphysicians but not fornurses– DNR has no legal standing– Most people have limitedunderstanding aboutpalliative care3

Comparisons across countries – Place of DeathUKNo. deathsHospitals 48%Home 23%Taiwan No. deathsHome 40%Hospitals 40%SingaporeNo. deathsHospitals 61%HKNo. deathsHospitals 90%Others(incl Elderly Home) 29%Others(incl Elderly Home) 20%OthersHome (incl Elderly Home) 27% 12%Others (ElderlyHome, Home) 10%7Ref: Mingpao News July 10, 2016

The FHB Commissioned Research Project“Quality of healthcare for the ageing –Health system and service models to better cater for an ageingpopulation”Objectives:- To identify barriers and recommend service models forend-of-life (EOL) care in Hong Kong- To recommend service models and changes (includinglegislation) if required

MethodsKey informant interviews– 10 management-level informant from the health andsocial care sectors– 4 legal experts– 3 pathologists and mortuary staff– 2 private sector medical doctors– 2 private funeral agentsFocus groups– 11 groups of staff from the healthcare sector– 11 groups of staff from the social care sector9

Current Barriers and Gaps

Issues, Gaps and BarriersAnticipation & Preparation Legal Operational &Organizational Socio-cultural& PracticalEOL Care DeliveryDeath and Post-deathAdvance Directives (AD) andAdvance Care Planning (ACP)Mental Health Ordinance (Cap136)Powers of Attorney (Cap 31) &Enduring Powers of Attorney Fire Services Ordinance (Cap95) Coroners Ordinance (Cap 504)Low uptake and lack of formalstatus for ADLack of standardized policy,protocol, and formal status offor ACPUncertainties of EOLprognosticationLack of continuous EOL careconversation Inadequate capacity, supportand resources for supportingEOL care in the communityInadequacy for supporting EOLcare in the hospital settingsInadequate medical-socialinterface and coordination Dying at hospitalsDeath on/before arrival to A&EDying at RCHEDying at nursing homeDying at homeDeath as a cultural tabooInadequate discussion andeducationChallenge for healthcareproviders to initiateconversations Lack of appropriate culture,mindset and skills of staffs todeliver EOL careInadequate training andeducation on EOL issues formedical, nursing and residentialcare home staffsMisconception of EOL care inthe general public Dying at homeDying at RCHEDying at nursing homeConcerns of the general publicover reportable deathsGeneral concerns over funeraland cremation servicesLack of emphasis on post-deathand bereavement services 11

Issues, Gaps and BarriersAnticipation & Preparation Legal Operational &Organizational Socio-cultural& PracticalEOL Care DeliveryDeath and Post-deathAdvance Directives (AD) andAdvance Care Planning (ACP)Mental Health Ordinance (Cap136)Powers of Attorney (Cap 31) &Enduring Powers of Attorney Fire Services Ordinance (Cap95) Coroners Ordinance (Cap 504)Low uptake and lack of formalstatus for ADLack of standardized policy,protocol, and formal status offor ACPUncertainties of EOLprognosticationLack of continuous EOL careconversation Inadequate capacity, supportand resources for supportingEOL care in the communityInadequacy for supporting EOLcare in the hospital settingsInadequate medical-socialinterface and coordination Dying at hospitalsDeath on/before arrival to A&EDying at RCHEDying at nursing homeDying at homeDeath as a cultural tabooInadequate discussion andeducationChallenge for healthcareproviders to initiateconversations Lack of appropriate culture,mindset and skills of staffs todeliver EOL careInadequate training andeducation on EOL issues formedical, nursing and residentialcare home staffsMisconception of EOL care inthe general public Dying at homeDying at RCHEDying at nursing homeConcerns of the general publicover reportable deathsGeneral concerns over funeraland cremation servicesLack of emphasis on post-deathand bereavement services 12

LEGALAnticipation and PreparationAdvance Directives (AD)– Disputes over types of decision to be included in AD, e.g. Duration of validity Option to revoke a previous decision Refusal of life-sustaining treatments only or also basic care, which isbroadly defined in the UK Mental Capacity Act 2007 as “actions thatare needed to keep a person comfortable, e.g. warmth, shelter, actionsto keep a person clean and the offer of food and water by mouth.”)– Operates under common law framework, but not legislated yet– Still a debate: Should AD be legislated?Advance Care Planning (ACP)– No formal legal standing ACP wishes not binding13

LEGALAnticipation and PreparationMental Health Ordinance (Cap 136)– Uncertainties with definition of “mental incapacity” refer to Law Reform Commission’s reportSubstitute Decision-making and AdvanceDirectives in Relation to Medical Treatment (2006)Powers of Attorney Ordinance (Cap 31)– Currently only allows the attorney to handlefinancial matters before and after he/she becomesmentally incapacitated14

LEGALEOL Care Delivery Fire Services Ordinance (Cap 95)– Duty clause: to “assist any person who appears toneed prompt or immediate medical attention by (i)securing his safety; (ii) resuscitating or sustaininghis life; (iii) reducing his suffering or distress”.– Therefore, FSD is still obligated to performresuscitation, if required, despite having completedDNACPR, ACP or AD documentations FSD’s nonparticipation in the HA’s DNACPR guidelines– Points (ii) and (iii) may contradict in some cases15

LEGALDeath & Post-deathCoroners Ordinance (Cap 504):– Dying at Residential Care Homes for the Elderly (RCHE): Type 16: “Any death of a person where the death occurred in anypremises in which the care of persons is carried on for reward orother financial consideration (other than in any premises whichcomprise a hospital, nursing home or maternity home registeredunder the Hospitals, Nursing Homes and Maternity HomesRegistration Ordinance (Cap 165)).” death at RCHEautomatically reportable– Dying at home: Type 2: “Any death of a person (excluding a person who, before hisdeath, was diagnosed as having a terminal illness) where noregistered medical practitioner has attended the person during hislast illness within 14 days prior to his death.” reportable butcan be exempted16

Issues, Gaps and BarriersAnticipation & Preparation Legal Operational &Organizational Socio-cultural& PracticalEOL Care DeliveryDeath and Post-deathAdvance Directives (AD) andAdvance Care Planning (ACP)Mental Health Ordinance (Cap136)Powers of Attorney (Cap 31) &Enduring Powers of Attorney Fire Services Ordinance (Cap95) Coroners Ordinance (Cap 504)Low uptake and lack of formalstatus for ADLack of standardized policy,protocol, and formal status offor ACPUncertainties of EOLprognosticationLack of continuous EOL careconversation Inadequate capacity, supportand resources for supportingEOL care in the communityInadequacy for supporting EOLcare in the hospital settingsInadequate medical-socialinterface and coordination Dying at hospitalsDeath on/before arrival to A&EDying at RCHEDying at nursing homeDying at homeDeath as a cultural tabooInadequate discussion andeducationChallenge for healthcareproviders to initiateconversations Lack of appropriate culture,mindset and skills of staffs todeliver EOL careInadequate training andeducation on EOL issues formedical, nursing and residentialcare home staffsMisconception of EOL care inthe general public Dying at homeDying at RCHEDying at nursing homeConcerns of the general publicover reportable deathsGeneral concerns over funeraland cremation servicesLack of emphasis on post-deathand bereavement services 17

OPERATIONAL & ORGANIZATIONALAnticipation and PreparationLow uptake and lack of formal status for AD– Only 1,919 people signed AD in public hospitalsbetween August 2012 and March 2016 due to various reasons: reluctance to start EOLconversations, concerns over lack of protection for thehealthcare providers, inadequate awareness andknowledge of AD and uncertainties of AD– Lack of mechanism to alert the healthcareproviders within HA of the possession of a validand applicable AD for the patients18

OPERATIONAL & ORGANIZATIONALAnticipation and PreparationLack of standardized policy, protocol, and formal status of forACP– No formal recognition by related sectors, includingHA, other healthcare institutes, RCHEs, nursinghomes, Fire Services Department, police– FSD’s non-participation in the HA’s DNACPRguidelinesUncertainties of EOL identification and prognostication– Lack of standard protocol: when should the EOLconversation start?Lack of continuity in EOL care conversation19

Changing course of health care needs along theillness trajectory (Adapted from WHO)20Source: WHO, Cancer control: Palliative care- WHO guide for effective programmes, 2007.

OPERATIONAL & ORGANIZATIONALEOL Care DeliveryInadequate capacity, support and resources for supporting EOLcare in the community– Manpower: VMOs at RCHEs, no requirement for onsite medical doctors at nursing homes, untrainedinformal carers at homes and low awareness of EOLcare services in the community– Equipment, facility and space: e.g. wheelchairs,oxygen supply, oral suction, IV drip/syringe pump, etc.– Transportation: Inadequate non-emergencytransportation to the hospitals for EOL patients whorequire sub-acute attention21

OPERATIONAL & ORGANIZATIONALEOL Care DeliveryInadequacy for supporting EOL care in the hospitalsettings– Medical doctors traditionally trained in deliveringcurative care but not EOL care with palliative careat its core– 19 palliative care specialists in HK– Insufficient coordination and communicationbetween the different departments (e.g. A&E withthe parent team)22

OPERATIONAL & ORGANIZATIONALEOL Care Delivery Inadequate medical-social interface andcoordination– Referral, transfer, information sharing and access, etc. to ensure timely,appropriate and continuous care– Mechanism and system that enables multi-disciplinary coordination(E.g. HA’s pilot program of Enhanced CGAT for EOL Care in RCHEs) No clarity as to whether RCHE/ nursing home staffs need to follow/execute AD/ACPmade in hospitals– No common understanding between the 2 sectors distrust– Overlaps of services provided to the patients in the community(e.g. CGAT, CNS, Integrated Care and Discharge Support, homepalliative care services, other organ-specific programs as well as othercommunity and home care visits by allied health professionals) lackof system to coordinate and manage these services23

OPERATIONAL & ORGANIZATIONALDeath and Post-death Dying at hospitals– Limited space and flexibility of visiting hours at publichospitals– General practice to transfer/rush back patients fromcommunity to hospitals to die ambulance A&E– Inadequate understanding and coordination between A&Eand other extended care facilities regarding terminally illpatients at EOL24

OPERATIONAL & ORGANIZATIONALDeath and Post-death Death on/before arrival– Common misconception: Deaths occurred within 24 hours of A&Earrival must be reported to the coroner No such legal requirement if doctor is familiar with the case, they cansign the Medical Certificate of the Cause of Death (Form 18) Patients being sent to hospital as soon as they show any early/suspectedsign of dying crowding out A&E resources, false alarm, revolving doorsyndrome25

OPERATIONAL& ORGANIZATIONALDeath and Post-death Dying at RCHE–––––RCHE not designed to facilitate dying in place!Limited in space, may lack extra air-conditioned roomNo required storage of non-designated drugs in RCHEsRCHE staff not trained and equipped to handle death and post-deathCounseling of bereaved family members and to assist them withhandling police investigation, death reporting and registration, etc.26

OPERATIONAL & ORGANIZATIONALDeath and Post-death Dying at nursing home– Legal (non-reportable), but – Not all nursing home have regular medical practitioner available 24hours a day Difficulty to find doctor to view the body and issueForm 18– Limited in space, may lack extra air-conditioned room– Non-coroner’s case A resting place is required for storage before burial/ cremation Alternative: funeral parlor services which incur more costs than deaths athospitals and reportable deaths– Counseling of bereaved family members and to assist them withhandling police investigation, death reporting and registration, etc.27

OPERATIONAL & ORGANIZATIONALDeath and Post-death Dying at home– Legal (non-reportable), but – Difficulty to find doctor to view the body and issue Form 18– Home deaths may generate fear and discomfort to neighbors livingnearby– Removal of body: May cause inconvenience to neighbors Handled by funeral parlor services for non-reportable deaths incurmore costs– Home deaths may trigger police investigations distress to familymembers28

Issues, Gaps and BarriersAnticipation & Preparation Legal Operational &Organizational Socio-cultural& PracticalEOL Care DeliveryDeath and Post-deathAdvance Directives (AD) andAdvance Care Planning (ACP)Mental Health Ordinance (Cap136)Powers of Attorney (Cap 31) &Enduring Powers of Attorney Fire Services Ordinance (Cap95) Coroners Ordinance (Cap 504)Low uptake and lack of formalstatus for ADLack of standardized policy,protocol, and formal status offor ACPUncertainties of EOLprognosticationLack of continuous EOL careconversation Inadequate capacity, supportand resources for supportingEOL care in the communityInadequacy for supporting EOLcare in the hospital settingsInadequate medical-socialinterface and coordination Dying at hospitalsDeath on/before arrival to A&EDying at RCHEDying at nursing homeDying at homeDeath as a cultural tabooInadequate discussion andeducationChallenge for healthcareproviders to initiateconversations Lack of appropriate culture,mindset and skills of staffs todeliver EOL careInadequate training andeducation on EOL issues formedical, nursing and residentialcare home staffsMisconception of EOL care inthe general public Dying at homeDying at RCHEDying at nursing homeConcerns of the general publicover reportable deathsGeneral concerns over funeraland cremation servicesLack of emphasis on post-deathand bereavement services 29

SOCIO-CULTURAL AND PRATICALEOL Care Delivery Lack of appropriate culture, mindset and skills of staffs to deliver EOLcare– Good EOL care will not fall into places with only operational protocols andpolicies– Inadequate medical ethics training– Fear and feeling of uncertainty of legal liabilities for administering EOL care (e.g.AD/ACP, DNACPR, withdrawal of life-sustaining treatments) Inadequate training and education on EOL issues for medical, nursing andresidential care home staffs– Inadequate emphasis on psychological and spiritual needs of patients andfamily members Misconception of EOL care in the general public– Feeling of guilt if they do not care enough for the patients (Andershed &Harstade 2007)– Filial piety to do the utmost inadequate EOL education and discussion– Inadequateunderstandingbetweenpatientsand theirfamilyRef: AndershedB, Harstade CW.discussionNext of kin’s andfeelingsof guilt and shamein end-of-lifecare. ContempNurse.Australia; 302007Dec;27(1):61–72.

SOCIO-CULTURAL AND PRATICALAnticipation and Preparation A vicious cycle:– Death as a cultural taboo - Inadequate discussion andeducation in general public– Reluctance to engage in discussions on life-and-death andEOL among younger generations, more so than the elderlyChallenge for healthcare providers to initiate conversations– 90% medical students felt that they did not have sufficient knowledgeon EOL and were unprepared to handle such issues (Siu MW et al. 2010)– Administering palliative care giving up hopeRef: Siu MW, Cheung TY, Chiu MM, Kwok TY, Choi WL, Lo TK, et al. The preparedness of Hong Kong medical students towards31advance directives and end-of-life issues. East Asian Arch Psychiatry. 2010;20(4):155–62.

SOCIO-CULTURAL AND PRATICALDeath and Post-death Dying at home– Fear and discomfort of neighbors socio-cultural/religious beliefs,taboo and concept that body would quickly decompose and smell– Inadequate knowledge of administrative procedure for dealing withdeath at home– Patient might not have expressed their wishes to die at home to familymembers, who may not prefer the patient to die at home (e.g. goingback home giving up hope, hospital is the best place for dying,perceived fear of depreciation of property value!)32

SOCIO-CULTURAL AND PRATICALDeath and Post-death Dying at RCHE– Fear and discomfort of staff and housemates– General concern over decomposition and smell of the body– General concern over possible requirements for autopsy if coroner’sprocess is triggered Dying at nursing home– Similar to RCHE– No expectation for family members of the patient to die at nursinghome33

SOCIO-CULTURAL AND PRATICALDeath and Post-death Concerns of the general public over reportable deaths– Perceived notion: time-consuming and onerous for family members– Socio-cultural/religious belief: “completeness” of the body General concerns over funeral and cremation services– 15 days of waiting list for cremation service on average– Some family members choosing convenient time and “auspicious” date– Hospital mortuaries are free-of-charge for storage Lack of emphasis on post-death and bereavementservices– Lack of awareness of such services even when available34

A Telephone Survey of 1,067 adults of theGeneral Hong Kong Population above 30 yearsoldRoger Yat-Nork Chung, Eliza Lai-Yi Wong, Nicole Kiang,Patsy Yuen-Kwan Chau, Janice Lau, Samuel Yeung-ShanWong, Eng-Kiong Yeoh, Jean Woo35

Main Findings – EOL CareMost important element of EOL care if you were beingdiagnosed to be terminally ill:40.035.033.933.9Percentage (%)30.025.020.015.010.05.00.011.06.94.33.63.43.1

Main Findings – EOL CareIf you were being diagnosed to be terminally ill,you would prefer to:– Prolong your life as much as possible withmedical interventions even when it means pain,discomfort and suffering– Receive appropriate palliative care that does notnecessarily prolong your life but gives you morecomfort

Main Findings – EOL CareIf you were being diagnosed to be terminally ill,you would prefer to:Prolong your life as much as possiblewith medical interventions even when itmeans pain, discomfort12.4%87.3%Receive appropriate palliativecare that does not necessarilyprolong your life but gives youmore comfort

Main Findings – EOL CarePercentage (%)If you were being diagnosed to be terminally ill, you would prefer 0.174.825.291.440-498.68.90.250-5960-6970-7980 AgeProlong life as much as possibleReceive appropriate palliative care

Main Findings – EOL CareDoctors should generally try to keep their patientsalive by any means (e.g. machines, intubation) for aslong as possible, even if it means pain, discomfort,and sufferingNot sure/ Neutral,24.1%It is a good practice for medical staff directlyinform patient about their situation and end oflife care plansAgree,92.2%Agree,32.9%Disagree,1.8%Not sure/ Neutral,6%Disagree43.0%The patient’s own wishes should determine whattreatment he/she should receiveNot sure/ Neutral,8.8%Disagree,5%Agree,86.2%

Main FindingsAdvance Directive

Main Findings – Advance Directive85.7% have not heard ofAdvance Directive (AD)After explanations of what AD means It is a good approach to make an advance directive when a patient is diagnosed tobe have an incurable disease.Agree,73.9%Disagree,4.2%Not sure/ Neutral,21.9%

Main Findings – Advance DirectiveWould make AD if formally legislated in HKYes,60.9%No,22.6%Not sure,16.5%

Main Findings – Advance DirectiveWould make AD if formally legislated in HK70Percentage 0-69AgeYesNoNot sure70-7980

Main Findings – Advance DirectiveReasons for not making an AD (Can choose morethan one)6052.7Percentage (%)50403025.72013.711.611.2Afraid of desired/needed care beingdeprivedNot sure100Possible change ofmindOthers*Inconvenient/Trouble to makeone* Too young, haven’t thought about it, not necessary, more understanding needed

Main FindingsPreferred Place of Care/Death

Main Findings – Preferred Place of CareRCHE/ NursingHome/ HospiceOthersLast Year618 (57.9%)180 (16.9%)251 (23.5%)9 (0.8%)Last Weeks430 (40.3%)186 (17.4%)12 (1.1%)Last Days358 (33.6%)164 (15.4%)12 (1.1%)430 (40.3%)524 (49.5%)IncreasingHospitalDecreasingHome

Main Findings – Preferred Place of DeathHome30.8%Hospital51.8%Aged/ Nursinghome/ Hospice16.2%Others0.2%

Main Findings – Preferred Place of DeathA clear trend of increasing age for lower preference to die at home6057Percentage 0-4950-59Age80

Main Findings – Preferred Place of DeathWould you still prefer to die at home even if you didnot have sufficient support and care from family andfriends or the social and medical professionals?No,71.7%Not sure,8.8%Yes,19.5%

Main Findings – Preferred Place of DeathReasons for not choosing home as place of death(can choose more than one)908080Percentage (%)706045.650403022.32010.7100MostImportant?Do not want totrouble thefamilyLack of nursingand medicalprofessionalsupport66.3%18.4%Lack oftechnologicalsupport3.7%10Property priceComplexity ofproceduresand legalissues3.3%3.2%7Concerns forneighbours1.9%3.4Others/Notsure3.2%

Main Findings – Preferred Place of DeathIf a person passes away at home naturally, in other words,not by accidents, injuries, external causes Feeling uncomfortable about the houseNo,74.3%Yes,25.7%Feeling the house is “haunted” (凶宅)No,88%Yes,12%

Take-Home Messages1.2.3.4.5.6.7.8.First comprehensive population-based survey on the matters inHKMost important aspects of EOL care are the close relationshipsand being free from pain and discomfortEOL care with palliative care as its core needs to be moreemphasizedPatient’s autonomy should be considered as an important aspectof their best interestMost people want to make advance wishes for themselves ADlegislation can be consideredThe gap between people’s wishes and reality in terms of preferredplace of death is very wide Hospitals may be crowded out inthe future due to population aging need to be more options!Most important reason not to die at home is about their familymembers, NOT property price!Still misunderstanding of what “haunted house” (凶宅) entails public education across life course needed

Acknowledgement The work described in this paper was fully supportedby a commissioned grant from the Health and MedicalResearch Fund (HMRF) of the Food and Health Bureauof the Government of the Hong Kong SpecialAdministrative Region and the Research Grants Councilof the Hong Kong Special Administrative Region, China(Project Code: Elderly Care – CUHK). The Research Team All participants Ethical approval of the research protocol was grantedby the Survey and Behavioural Research EthicsCommittee of the Chinese University of Hong Kong

References1. Roger Yat-Nork Chung, Eliza Lai-Yi Wong, Nicole Kiang, Patsy Yuen-Kwan Chau, Janice Lau,Samuel Yeung-Shan Wong, Eng-Kiong Yeoh, Jean Woo. Knowledge, Attitudes, and Preferencesof Advance Decisions,End-of-Life Care, and Place of Care and Death in Hong Kong. APopulation-Based Telephone Survey of 1067 Adults. JAMDA xxx (2017) 1.e1e1.e92. The Law Reform Commission of Hong Kong., Substitute Decision-making and AdvanceDirectives in Realation to Medical Treatment. 2006.3. Food and Health Bureau., Introduction of the Concept of Advance Directives in Hong Kong:Consultation Paper. 2009.4. Hospital Authority Clinical Ethics Committee., Guidance for HA Clinicians on AdvanceDirectives in Adults. 2014.5. Kaan, T., Law and the end of life in Singapore. 2011.6. Legislative Yuan of Taiwan., The Patient Autonomy Act. 2015.7. The Law Reform Commission of Hong Kong., Enduring Powers of Attorney: Personal Care.2011.8. Department of Health., Mental Capacity Act. Vol. 6. 2005, London: HMSO. 2005--2006.9. Hospital Authority., HA Guidelines on Life-sustaining Treatment in the Terminally Ill. 2015.10. Hong Kong Legislative Council., Powers of Attorney Ordinance (Cap 31). 1999.

Thank You!

Overview of End-of-Life Care in Hong Kong Now and to the Future Prof Roger Chung . Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong . Diane Threapleton, SF Lui, Nicole Kiang, Patsy Yuen-Kwan Chau, Eliza Lai-Yi Wong, Janice Lau, Samuel Yeung-Shan Wong, Eng-Kiong Yeoh, Jean Woo

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