evaluation on the community-based end-of-life care...

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Evaluation on the Community-based End-of-Life Care Models

(20.06.2018)Conference on Innovation.Impact

The Review and Vision of Community EoLCMiss Iris Chan

Senior Training OfficerJCECC Project, Faculty of Social Sciences, HKU

Deaths in Hong Kong

• About 46,000 deaths happen every year in HK, with 78% died from life-limiting diseases

2

(Census and Statistic Department, 2017)

EoLC Services in HK

• Mainly in public hospitals under the Hospital Authority:

– 16 public hospitals provide 360 hospice beds

– Palliative consultative team (for inpatient)

• Community Services for EoL patients provided by Hospital Authority:

– Out-patient

– Home care

– Day care

3

Estimated population needing EOLC

4

(WHO, 2014)

Postulated Needs in HK

• Estimation based on Death Statistics of Hong Kong in 2016 and WHO estimation of needs of PC for each illness 5

Leading causes of death in 2016 (N=46463)

Adult ChildPain

prevalenceAdult

Pain prevalence

Child

Estimated Adult needing

EoLC

Estimated Child needing

EoLC

1 Malignant neoplasms 14193 16 84% 80% 11922 13

2 Pneumonia 8286 5 67% 67% excluded

3 Diseases of heart 6188 11 67% 67% 4146 7

4 Cerebrovascular diseases 3218 6 67% 67% 2156 4

5External causes of morbidity and mortality 1789 19 -- -- excluded

6 Nephritis, nephrotic syndrome and nephrosis 1704 1 50% 67% 852 1

7 Chronic lower respiratory diseases1638 1 67% 67% 1097 1

8 Dementia 1371 0 47% 67% 644 0

9 Septicaemia 965 5 67% 0 3

10 Diabetes mellitus 498 0 64% 67% 319 0

11 Other causes 6613 111 -- -- excluded

46463 175 21137 26

Age group 65 and above accounted for 16020 (75.6%) of patients

needing PC

Increasing needs on EoLC

• Rapidly expanding population age 65 and above, expected to reach 31% of the population by 2046

6

(Hospital Authority, 2017)

Medical Services Utilization in Last Phase of Life

• Surge of hospital admissions in the final 2 months of life Compared with other elderly patients, elderly patients in their last year of life:– Number of A&E attendances are 5 times higher

– Patient days are 10 times higher

• Substantial financial burden on health care system 7

(Hospital Authority, 2017)

Where do EoL patients in HK spend most of their time receiving care?

• A retrospective review on the medical service utilization of cancer and non-cancer EoL patients in 4 hospitals in Hong Kong:

8

Total duration of hospital stay in last 6 months of life (in days)

Cancer patients (n=183) 28.5 (26.0)

Non-cancer patients (n=656) 40.9 (36.0)

Patients spent around 5 months in the last 6 months of life in the community.

(Lau, Tse, Chen, Lam, Lam, & Chan, 2010)

9

Source: Economist Intelligence Unit (2015). The 2015 Quality of Death Index: Ranking Palliative Care Across the World.Retrieved from http://www.lienfoundation.org/sites/default/files/2015%20Quality%20of%20Death%20Report.pdf

2015 Quality of Death in HK

The Economist (2015) conducted a survey on 80 countries about their quality of palliative care based on 19 indicators in 5 categories. Hong Kong ranked 22 out of 80.

http://www.lienfoundation.org/sites/default/files/2015 Quality of Death Report.pdf

EoLC Issues in Hong Kong

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Current Challenges• Increasing medical expenses

with the ageing population• EoL care is possibly a lower

cost alternative• Social Cost: Guilt and

prolonged bereavement responses

Current Challenges• Public hospital services are over-

specialized• Disproportional low level of

emotional, psychological and spiritual support

Current Challenges• Only 21 Palliative Medicine

specialists in HK• Insufficient training for family

caregivers and volunteers

Current Challenges• Most deaths happen in hospitals• Barriers to receiving EoL care and dying in the community• Lack of community-based end-of-life care services

Current Challenges• Only 360 palliative care beds

offered to over 11,000 adult cancer patients in need of palliative care

• Less than 1.5% of patients with non-cancer life threatening illness received EoL care

Coverage

Cost

Effectiveness

Choice

Competency

Continuity of Care

Jockey Club End-of-Life Community Care Project (JCECC)

• A three-year project launched by The Hong Kong Jockey Club Charities Trust in 2015.

• Aimed at improving the quality of end-of-life care in the community through:

– Developing community EoLC service models;

– Building capacity of the community (professionals, family caregiver, volunteers) to provide EoLC; and

– Raising public awareness.

11

Project Feature and Components

Community-based EoLC Models

Service Recipients & Objectives

• Patients who:

– Aged 60 or above

– Diagnosed of an incurable disease with a prognosis of 6 months or less

• and their family members

• Objectives:

- To enhance QoL of patients and family members

- To reduce unnecessary hospitalization14

Common Features of Models

1. Care in and Care by the Community

2. Respecting Choice and Autonomy

3. Family as Service Unit

4. Holistic Care with an Emphasis on Psychosocial Care

5. Medical-social collaboration

6. Evidence-based Practice

15

Six Foci of Holistic Intervention

• Symptom management1

• Psychosocial care2

• Practical support3

• Communication4

• Support for EoL decision making5

• Bereavement care6

16

Four Community EoLC Models

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NGOs

Hospital Partners

CommunityPartners

Medical Professionals

Community elderly support team + Family

Patient Groups +

Professional Volunteers

Church Groups

KEC + PYNEH

HKEC & HKWC

TMH & POH

PYNEH + RH

Enhanced community health

care model

Family capacity building model

Non-cancer patient capacity building model

Community capacity building

model

Cancer & non-cancer

Cancer & non-cancer

Non-cancerCancer & non-

cancerPatients

Differentiated Capacity Building

Community-based health care Capacity Building

18

Enhanced community health

care model

Family capacity building model

Non-cancer patient capacity building model

Community capacity building

model

Family

Patients

Community Social Support Network

Common & Specific Interventions

Symptom management

Psychosocial care

Practical support

Communication

EoLDecision Making

BereavementCare

Commonintervention components

• Counseling• Emotional

support• Legacy• Wish

fulfilment

• Equipment loan/consultation

• Escort• Service

referral

Facilitate family communication

Care preference discussions

Bereavement support

• Health consultation

• Alternative therapies

Mutual support group/visitsVolunteersupport

Family reconciliation

Funeral planning

Funeral support

Symptom self management education

• Joyful activities

• Positive death education

• Home-basednursing care

• Telemedicine

Spiritual care ACP discussion ACP review

Occupational therapy

Cheer-up activities

Caregiver stress relief sessions

Cheer-up activities

Funeralplanning

Funeral support19

Outline of Common Service Pathway

20

Intake assessment

Practical support

Acute Phase (1-3 months)High staff involvement

Symptom management

Communication

EoLC decision making

Bereavement carePsychosocial care

Maintenance Phase Lower staff involvement remain proactive

Increased volunteer involvement

Support for bed-side care

Continuous assessment

At risk of dying in 6 months

Short weeks/Last Days

Death

Volunteer psychosocial support to patients and caregivers

Short weeks/Last Days

Post Death

Trigger acute intervention when in need

Evaluation Framework

21

IMPACT(Distal Effect)

OUTCOMES(Intermediate

Effect)

OUTPUTS(Proximal Effect)

ACTIVITIESINPUTS

Funding Innovative Community EoLC

Programmes

Beneficiaries served

Patients:-Quality of life: Physical, Psychological and social health

Family Carers:-Caregiver strain-Complicated Grief-Family relationship

Patients and Family carers:- unnecessary health and social care services

Community:-Cost effectiveness of service


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Effect)


ACTIVITIESINPUTS

Study 1Outcome & Impact Evaluation on

Patients and Family Members

Study 3In-depth interviews with Patients and

Family Members

Study 2Satisfaction survey with Patients and

Family Members

Study 4Satisfaction survey with referrers with

open-ended questions


23



Effect)


ACTIVITIESINPUTS

Study 1Outcome & Impact Evaluation on

Patients and Family Members

Study 5

Service Statistics Study 3

In-depth interviews with Patients and Family Members

Study 2Satisfaction survey with Patients and

Family Members

Study 4Satisfaction survey with referrers with

open-ended questions

Study 1Outcome & Impact Evaluation

Objectives

• Assess the objective outcomes and impacts of services on patients and caregivers

• Identify effective service components

Design

• Single-group pre-post-follow-up design

Data Collection

• Clinical assessments collected by case workers

24

Study 1Study Design

25

TC0 assessment

TC1 assessment

TC2 assessment

Family

membersPatients

TP0 assessment

TP1 assessment

TP2 assessment

Service intake

1 month of service

3 months of

service

2 months after

patient’s death

Patient’s death

Study 1Assessment Tools – Patients

Integrated Palliative Care Outcome Scale (IPOS)

• Chinese translation with permission from the King’s College London

• Patient-reported outcome measure

• Multi-dimensional

• Brief but capture important concerns of patients : 18 questions, ~10 minutes

26

OUTCOMES(Intermediate Effect)


• IPOS - a core outcome measurement in the OACC suite of measures developed by the King’s College London

27

– Open collaboration, London and nationally

– Common set of measures

– Linked/pooled outcome data

– Benchmarking and casemix-adjusted outcomes across settings and service in the long-run


Integrated Palliative Care Outcome Scale (IPOS)• Patient version (3-day recall)

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Physical symptoms (10 items)

PainShortness of breath

Weakness/lack of energyNausea

VomitingPoor appetiteConstipation

Sore or dry monthDrowsiness

Poor mobility

(Cronbach’s 0.74)

Communication & Relation (7 items)

DepressionAnxiety

SpiritualityPerceived family anxieties

Sharing feelings with family/friendsInformation needsPractical concerns

(Cronbach’s 0.75)

one open-ended question on “main problems/concerns”

https://pos-pal.org/maix/ipos_in_english.php



Impacts:

• Medical service utilization per month pre-and-post intervention (TP0, TP1, TP2)

– A&E Admission, hospital admission, hospital in-patient bed-days, ICU bed-days in the last month

29


Study 1Assessment Tools – Family Members

Outcomes:

• 13-item Chinese version Modified-Caregiver Strain Index (C-M-CSI) (TC0, TC1)

– Caregiving stressors, Cronbach’s 0.89 (score range: 0-26)(Chan, Chan, & Suen, 2013; Onega, 2008; Thornton & Travis, 2003)

• Intimacy with patient (TC0, TC1)

– “Describe the level of intimacy of your relationship with the patient” (score range: 0 “Very distant” – 4 “Very intimate” )

• 19-item Chinese - Inventory of Complicated Grief (TC2)

– Frequency of complicated grief symptoms, Cronbach’s 0.91 (score range: 0-76, cut-off for high risk: 25)

(Prigerson et al, 1995; Tang & Chow, 2017) 30

OUTCOMES(Intermediate Effect)

Study 1Assessment Tools – Family Members

Impacts:

• Medical service utilization per month pre-and-post intervention (TC0, TC1, TC2)

– Doctor consultations

– A&E Admission

– hospital in-patient bed-days

31


Study 1Assessment Tools – Others

Patients

• Age, Gender, Disease groups, living arrangement (singleton, living with family), family income and financial assistance

Family Members

• Age, Gender, relationship with patient, family income

• Caregiving situations: number of hours providing care per week

• Health status: presence of chronic illness

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Patients Background (N=176)

33

Freq (%)

Gender (Male) 89 (50.6%)

Age 76.4 (10.983)

Marital status

Single 13 (7.5%)

Married 94 (54.3%)

Widowed/separated/divorced 66 (38.2%)

Patients Background (N=176)

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Living arrangement

Living alone 34 (19.7%)

Living with a domestic helper only 12 (6.9%)

Living with family members 114 (65.9%)

Residential care home for elderly (RCHEs) 13 (7.5%)

Primary Caregiver

Spouse 57 (32.4%)

Adult child 60 (34.1%)

Siblings/Relatives 10 (5.7%)

Domestic helper 14 (8%)

Others/Friends 28 (15.9%)

Family Members Background (N=105)

35

• 105 family members completed T0 and T1

– Male: 23 (21.9%)

– Age: 58.75 (13.037)

Freq. (%)

Marital Status

Single 17 (16.2%)

Married 86 (81.9%)

Separated/divorced/widowed 2 (1.9%)

Employment

Full-time 29 (27.6%)

Part-time 12 (11.4%)

Home maker 28 (26.7%)

Not working 36 (34.3%)

Freq. (%)

Relationship with patients

Spouse 47 (44.8%)

Child 48 (45.7%)

Siblings 3 (2.9%)

Child-in-law 3 (2.9%)

Others 4 (3.8%)

Family Members Background (N=105)

• On average, caregivers

– spent 59.3 (60.264) hours per week to take care of patients, i.e. 35% of the time

• 38 (36.2%) caregivers are not living with the patient, they

– visited the patient 4.7 days per week on average

In the last month before service admission:6 (5.7%) have been admitted to A&E

2 (1.9%) have been admitted to hospital

Findings: Patient Outcomes

37

Severity

T1-T0 ***T2-T0 **

**

IPOS - Physical Symptoms


38

Severity

T1-T0 n.s.T2-T0 *

*

T1-T0 ***T2-T0 ***

***

*

T1-T0 *T2-T0 *

Severity Severity

IPOS - Physical Symptoms


39

Severity

T1-T0 **T2-T0 ***

***

T1-T0 ***T2-T0 ***

***

**

T1-T0 n.s.T2-T0 **

Severity Severity

IPOS - Psychological


40

Severity

T1-T0 *T2-T0 ***

***

T1-T0 *T2-T0 **

**

Severity

IPOS - Communication and Relation


41

Severity

T1-T0 ***T2-T0 ***

***

T1-T0 ***T2-T0 ***

***

Severity

IPOS - Communication and Relation

Findings: Impacts on Patients

42

Medical Service Utilization

Number of bed days/admission frequency

Findings: Family Member Outcomes

43

Strains

*

*

Intimacy level

Caregiver Strains and Family Relation

Findings: Family Member Outcomes

44

Complicated Grief

15.6% estimated prevalence of complicated grief in a study conducted in the US #2

13.9% estimated prevalence of complicated grief in a study in China #1

Findings: Impacts on Family Members

45


Effective Components Based on outcomes with moderate – large Effect Sizes

46

HC SJS HOH HKSR

Physical Symptom self-management

education

Psychosocial care Cheer-up activities Joyful activitiesPositive death

education

Practical support Equipment loan and service

referrals

ACP (information)

Communication & Relationship

Familyreconciliation

Mutual support and volunteer-

assisted support network

ACP

Caregiver Support Caregiver stress relief sessions


Nursing careACP review

Study 2: Satisfaction Survey with Patients and Family Members

Objectives

• Assess subjective outcomes of services on patients and caregivers

Design & Data Collection

• Telephone survey conducted by HKU research team

• All participants were invited, participation on voluntary basis

• Quantitative standardized questionnaire, satisfaction levels on service components

47

Study 3: In-depth Interviews with Patients and Family Members

Objectives

• Solicit self-reported outcomes and impacts from patients and family members


• Face-to-face in-depth interviews conducted by HKU research team

• Systematic sampling, 2 cases from each model per year

• Semi-structured interview guideline48

Study 2 & 3Study Design

49

TC0 assessment

TC1 assessment

TC2 assessment

Family

members

Satisfaction

Survey

Patients

TP0 assessment

TP1 assessment

TP2 assessment

Satisfaction

Survey

Service intake

1 month of service

3 months of

service

2 months after

patient’s death

Patient’s death

In-depth

interview

In-depth

interview

Study 2 & 3 Findings

50


51


The most helpful service components as perceived by patients and family members (from in-depth interviews)

Timely intervention

• “Once you promised to receive the service. Someone will be responsible for your case in a short time. Whenever I have any requests, the worker will reply me quickly as well.” (HC, bereaved caregiver)

• “ We don’t know which type of beds is suitable, luckily the worker tell me that the NGO can rent us a bed. Not to mention that they even deliver the bed to us in a timely fashion. Once the bed is set up, we immediately go and pick up the patient. “ (SJS, bereaved caregiver)

• “The most memorable thing was… when my husband passed away… they were there immediately once I called the worker…” (SJS, bereaved caregiver)

52


Practical Support (Practical and informational)

• “They helped me find some cleaning service, and it is free. Also, they asked others to practice some physiotherapy exercise, and sometimes the volunteers came and visited me too.” (HC, patient)

• They (the service team) have already told me that I might need to bath her (the patient) if her condition worsen further, I didn’t know how to do that before, but since they already told me beforehand, I got myself prepared for this … you won’t feel that bad when that happened eventually. (HOH, bereaved family)

• “They accompanied you to go to see doctors, helped you do shopping on some resources, like milk powder, or even helped you apply assistive listening devices. These were all very practical help.” (SJS, bereaved family member)

• “It means… for all the resources that we need during the caring process… like meals delivery, or nurse visit, they will all provide these resources to you and provide choices for you to choose. They will provide practical opinions and suggestions to you. “ (SJS, bereaved family member)

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EoL psychosocial care• I am so grateful that we had the chance to take family photos before he gone, that was the most

important to me. We originally planned to go BBQ with him (the patient) together with the worker if he were still alive... (HKSR, bereaved caregiver)

• (the worker taught me to) touch my brother, massage him, talk to him, he would feel that although he couldn’t answer you. I followed what the worker told me to do and I felt no regret, I haven’t touched my brother for many years…It seemed that my brother had tears by that time, probably not real, but I felt really comforting. (HKSR, bereaved caregiver)

• They treated her (the patient) as an ordinary elderly (not a patient), and asked her about her grandchildren, if she had thought of going somewhere with her grandchildren…not only talked about her diseases. This helped us not to solely focus on the disease. (HOH, bereaved caregiver)

• Yes… Like today... I never expected I will have a birthday party for me... I never expected that... and I felt happy for this… It really a surprise for me. (HC, patient)

• After the interview of my past, they help me make a book that records my previous experience. (SR, patient)

• (What do you want the worker to do with you?) I want him to play chess with me, (when I play chess) I would feel calmer and the time spent easier. (SJS, patient)

54

Study 4: Satisfaction Survey with Case Referrers

Objectives

• Assess subjective outcomes perceived by Case Referrers


• Online survey for staff of service units which have referred patients to the JCECC programme

55

Identified referrers Reply received Response rate

114 72 63.16%

Study 4 Findings

56

Study 4 Findings

57

1.4%

2.8%

1.4%

5.6%

4.2%

4.…

8.3%

8.3%

5.6%

8.3%

15.3%

6.9%

19.4%

36.1%

38.9%

31.9%

26.4%

33.3%

47.2%

30.6%

25.0%

31.9%

33.3%

34.7%

23.6%

22.2%

29.2%

22.2%

20.8%

20.8%

0% 20% 40% 60% 80% 100%

Q7 Overall satisfaction rate to this project

Q4d Bring positive change to worker'srelationship with patients

Q4c Bring positive change to the service oforgainzation

Q4b Bring positive change to patients andcaregivers

Q4a Project satisfy Community Needs

Q2 Overall satisfaction rate on working withJCECC team

1-6 7 8 9 10

M=8.528 (SD=1.363)

M=8.500 (SD=1.151)

M=8.569 (SD=1.098)

M=8.736 (SD=1.035)

M=8.611 (SD=1.015)

M=8.833 (SD=0.934)

Study 4 Findings

58

Summaries

Most satisfying areas • Close and direct follow-up together with the medical team in hospital

• Bridge the current service gap by providing EoLC support in the community

• Tailor-made and flexible service

Perceived biggest contribution

• Bridge the current service gap • Offer holistic and practical support

Observed impacts on patients/family/organization

• Improve relationship between patient and caregivers

• Increase trust placed on organization

Areas for improvement • Worries over the withdrawal of services after the project ends

• More chance for coordination of care between different service providers including those in hospital and the community

Conclusions

• The evaluation framework on outcomes and impacts is able to capture the expected outcomes

• Findings of studies 1-3 support the effectiveness of the models in enhancing QoL of patients and caregivers

• Impacts were evaluated, though with limitations

• Effective service components could be identified

• The medical-social collaborative strategies were found to be appropriate and feasible

59

Way Forward

• Generating an integrated model with effective service components

60

Caregiver Strain

Patient Emotion

Physical symptoms

Practical needs

Medical service utilization

Family Communication & EOL decision

High Level

Low Level

Average

Joyful activities

Education on symptom self-management

Stress relief sessions

Respite

Volunteer support

ACP

ACP

Wish fulfilment

Nursing care support

Family reconciliation

Cheerupactivities

Equipment loan, escort…

Discharge support

Way Forward

• Need-based and patient-centred

– Develop risk-stratifying need assessment tool based on the current outcome assessment

– Provide targeted intervention based on assessment of needs

61

High need

Low need

Intervention of

appropriate dosage

Way Forward

• Strengthen cost analysis

– Effort will be paid in developing accessibility of patients’ health record from eHR system to enhance collection of medical service utilization data necessary for cost-effectiveness analysis

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References

Chan, W. C. H., Chan, C. L. F., & Suen, M. (2013). Validation of the Chinese version of the Modified Caregivers Strain Index among Hong Kong caregivers: An initiative of medical social workers. Health & Social Work, 38(4), 214 – 221. Doi: 10.1093/hsw/hlt021

Lau, K. S., Tse, D. M. W., Chen, T. S. T., Lam, P. T., Lam, W. M., & Chan, K. S. (2010). Comparing noncancer and cancer deaths in Hong Kong: A retrospective review. Journal of Pain and Symptom Management, Vol40 (5), 704-714.

Onega, L. L. (2008). Helping those who help others: The Modified Caregiver Strain Index. American Journal of Nursing, 108(9), 62-69.

Palliative care outcome scale development team (2017). Integrated POS (IPOS) in English. Received on March 10, 2018 from https://pos-pal.org/maix/ipos_in_english.php

Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., Bierhals, A. J., Newsom, J. T., Fasiczka, A. …& Miller, M. (1995). Inventory of complicated grief: a scale to measure maladaptive symptoms of loss. Psychiatry Research, 59 (1-2), 65-79.

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References

Tang, S. & Chow, A. Y. M. (2017a). How do risk factors affect bereavement outcomes in later life? An exploration of the mediating role of dual process coping. Psychiatry Research, 255, 297-303.

Worldwide Palliative Care Alliance (2014). Global Atlas of Palliative Care at the End of Life. World Health Organization. Retrieved at http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf

Li, J. & Prigerson, H. G. (2016). Assessment and associated features of prolonged grief disorder among Chinese bereaved individuals. Comprehensive Psychiatry, Vol. 66, 9-16.

Bonanno, G. A, Wortman, C. B., Lehman, D. R., Tweed, R. G., Haring, M., Sonega, J. et al. (2002). Resilience to loss and chronic grief: A prospective study from preloss to 18-months postloss. Journal of Personality and Social Psychology, Vol. 83 (5), 1150-1164.

Prigerson, H. G., Maciejewski, P. K., Reynolds III, C. F., Bierhals, A.J., Newsom, J. T., Fasiczka, A., Frank,et al. (1995). Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59, 65-79.

Census and Statistic Department (2017). Hong Kong population projections 2017-2066. Retrieve from: https://www.statistics.gov.hk/pub/B1120015072017XXXXB0100.pdfLau et al., 2010

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http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf

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