Hu Wen-Yu

Professor & Director

Palliative Care and the

ethical issue in Cancer Patients

Feb 13, 2019

National Taiwan University/School of Nursing

National Taiwan University Hospital/Nursing Department

Function

High

LowTime

A B D

D. Frality

Figure 1.

A. Sudden death

B. Terminal cancer

C. Death from organ failure(ex: COPD, ESRD, Heart failure…

Theoretical trajectories of dying

C

(Lunney, Lynn, Foley, Lipson, & Guralnik, 2003 )

Patients with chronic illness often have a more prolonged

illness trajectory than cancer patients.

By THE PEOPLE

Through THE PEOPLE

For THE PEOPLE

Palliative Care for All

3Worldwide Hospice Palliative Care Alliance (WHPCA, 2014)

The goal of the care is to

help people who are dying have

peace, comfort and dignity.

(A) Acute stage IV GVHD, following a myeloablative conditioning chemotherapy.

(B) Chronic skin GVHD, following conditioning chemotherapy with TBI and

cyclophosphamide.

(C) Chronic GVHD, following reduced intensity conditioning chemotherapy.

Survivorship programs-

Symptoms in HCT patients’ muscles, fascia or joints

can be key indicators of chronic GVHD.

Gradual decline over

years or months with

in intermittent crises

or serious episodes;

more frequent crises

and hospitalizations in

the last year.

Many patients will want

to know their prognosis.(Murtagh, Murphy, & Sheerin, 2008).

Illness trajectories: A) Cancer trajectory vs B) end-stage heart or lung failure trajectory. Reproduced with permission from Pallium Canada.8 Adapted with permission from Lunney et al.

Lunney, J. R., Lynn, J., & Hogan, C. (2002). Profiles of older Medicare decedents. Journal of the American Geriatrics Society, 50(6), 1108-1112.

More rapid decline

the last months and

weeks

a) The World Health Organization (WHO) model of resource allocation in cancer care from 1990 depicting “present allocation of cancer resources

a) The World Health Organization (WHO) model of resource allocation in cancer care from 1990 depicting “present allocation of cancer resources

a) The WHO model of resource

allocation in cancer care from

1990 depicting “present allocation

of cancer resources” and

“proposed allocation of cancer

resources in developed countries”.

b) WHO model of “continuum of

care” in association with

palliative care from 2002 [5].

c) Novel integrated lung cancer care

concept with diagnostics, systemic

therapy, radiotherapy, surgery,

palliative care and follow-up as

equitable pillars of lung cancer care.

Source: copyright of Education for Physicians on End-of-life Care (EPEC) Project, 1999.

12 life-sustaining treatments

We developed a booklet that consisted of LST

figures to assist the cancer patient understanding

the real situations and procedure.

1.Intubation2.Artificial respiration3.Cardiac massage 4.AED 5.IV infusion 6.Vasopressi

n

12.Tube

feeding

10.Antibiotics7.Tracheostom

y

8.Non-invasive

mask

9.Mechanica

l ventilator

11.Hemo-

dialysis

Where is

the patient?

How to provide the most appropriate care for the terminal patient?

Survival? Quality of life?

Which is the most important ？

Terminal patient

Ethical reflection

Withholding/Withdrawing

Futile Life-Supports Systems

(不予或撤除無效醫療)

Ethical Dilemma?

personNursing

science

Patterns of Natural Systems Components (Bertalanffy, 1972)

Culture

Subculture

Community

Family

Atoms

Subatomic particles

Quarks

Social

Sciences

Physical &

Biological

Sciences

Traditional

Western Medicine

Universe

Earth

Human beings

Systems

Organs

Tissues

Cells

Organelles

Molecules

Whole

External environment

Internal environment

人Body

Spirit

Mind

Health axis（Health professional service)

人Bod

y

Spirit

Min

d

Nursing philosophy (Hu，2004)

Whole person human right be respected

Health promotion

Palliative medicine

UniqueIndividualHolistic

The continuous line: from Health to Good death

人( person )

Health

Healthpromotion

Control disease &Long term care

X Survival

Curative treatment

Good

death& Quality of life

Supportive treatment & Palliative care

Pain

Spiritual

CulturalSocial

Psychological

Physical

person Disease

body

spirituality

mind

SickSuffering

(Eds. : Hu，2008)

Caring

Total

suffering

Pain

Fugating wound pain

Psychological problems

Body image change、

distress 、depression

Endure pain

Cultural factors

Exudates、odor、bleeding…

Physical symptoms

Social difficulties

Social withdraw、Activity 、interaction

Spiritual concerns

Fear of death人

Death

Healt

h人身靈 心

Dying

End of

life

Refractory

Treatment stage

Diagnosis stage

【Disease trajectories of the patient 】

The patient and family will encounter many different health problems and ethical dilemmas during the disease trajectories

End of life

care

Terminal

care

Supportive

care

Palliative

care

Good dying process or Dying well

We could preparefor the

good death

Imminent

death

Before

48hrs

Pts may die from

weeks/months/ years.

3 types of pt (cancer,

organ failure ,frail

elderly /dementia pts )

Everyone needs

supportive care

Helping the patient

/ family cope better

with their illness

holistic care

Some regard as

overlapping or

following

curative

treatment

Death

Dignity death

Appropriate death

Peaceful death

Status (狀態) ?

Diagnosing

dying - care in

last hours and

days of life

The

momen

t

Process (過程) ?

Could we make an appointment

with good death?

Totalsuffering

Family

distress

survivalhealth

Clinical trial

/research

good

deathquality of life

(Hu，2004)

Palliative careDisease treatment

Which is the patient’s choice ?

X

Longevity(長壽)

Wealthy(富貴)

Good death(善終)

Virtue(好德)

The five blessings

have descend upon

one's house

(五福臨門)

Healthy(康寧)

Respect

Patient’s Wish(Institute of Medicine, 1997)

32

The definition of good death

Pain free, dignified, and one in which active

resuscitation never occurs. (Jones & Willis, 2003)

One that is free from avoidable distress and

suffering for patients, families, and

caregivers; in general accord with patient’s

and family’s wishes; and reasonably

consistent with clinical, cultural, and ethical

standards. (Institute of Mediine,1997; Wenger & Rosenfeld,

2001)

Appropriate Death

Respect personal significance

Maintain self esteem

Minimal distress

Relieve intractable symptom

Good death Scale

(palliative care ward, NTUH)

Full score:15

Indicator \ Score 0 1 2 3

1. Awareness □ Complete

ignorance

□ Ignorance □ Partial

awareness

□Complete

awareness

2. Acceptance □ Complete

unacceptance

□unacceptance

□Acceptance □ Complete

acceptance

3. Propriety □ No

reference to

the

patient’s

will

□ Following

the family’s

will alone

□ Following

the

patient’s

will alone

□ Following

the will of

both the

patient and

family

4. Timeliness □ No

preparatio

n

□ The family

alone had

prepare

□ The patient

alone had

prepared

□ Both the

patient and

their family

had

prepared

5. Comfort □A lot of

suffering

□ Suffering □A little

suffering

related to relieve patient’s

distress symptoms and

total suffering

□ No suffering

From Curative treatment to Palliative care

After

death

Good

Death

Dx.

Cure End-of-life

careHospice

care

Terminal

care

Imminent

careBereavement

care

Survival

Time

Curative treatment

Control disease

Support treatment

Stage

Type

of

Treat–

ment

Clinical trial/research

Or

Palliative treatment

DiseaseMonths -

Years

6-12

monthsDays -

Months＜ 48hr.chronic illness

Control

life-threatening

The Nature of

Clinical Research / Trial

The term “Clinical” is derived from the Greek “klinikos” meaning of or pertaining referred to a bed.

Its original usage in the context

of medical practice referred to

a physician who attends

bedridden patient

“Clinical trial” is an experiment testing medical treatments on human subjects, which is well-organized study

37

Globalization of Clinical ResearchDensity of Actively Recruiting Clinical Sites(per million inhabitants)

Nature Rev Drug Dis. (2008:7)

38

Volume of Ongoing Clinical Trials

in Asia Pacific Region

Taiwan is also the

leading country

in Asia

39(Hastings, Fisher, & McCabe, 2012)

Data quality

Participant safety

Golden Triangle of Clinical Trials

Clinical

Trials

(Declaration of Helsinki)

Ethics

Conduction(Good Clinical Practice)

Science(Principle of Clinical Trials)

The Center of All Clinical Research

Efforts

From: Eadows,B. & Fioravanti,S. (2000) “Interdisciplinary team”

Ethical reflection

14 February 2019 42

The purpose of ethical reflection

“Culture RNs’ or CRNs’ ethical

sensitivity toward clinical research

situration to research participants.”

Where is

the patient?

How to provide the most appropriate care for the terminal patient?

requires a marriage of scientific knowledge

and human care

~ Plato 500 BC ~

Good clinical medicine

Survival? Quality of life?

Which is the most important ？

Terminal patient

Ethical reflection

4646

Withholding/Withdrawing

Futile Life-Supports Systems

Are We Killing The Patient

When we stop life supports?

Incurable patients died

Medical failure ?

The current medical model, to receive

life-sustaining treatments (LST) and

intensive care in the end-of-life.

The biggest problem is that our healthcare systems are designed to provide acute care when what we need is chronic care..........

Side EffectsPositive Effects

BurdensBenefits (experiential assessment)

Patient

(clinical assessment)

Medical staff

BenefitsBurdens

Nearly 80 % of research participants do not understand

the context of clinical trial and palliative care

Families prefer the clinical trial

Patient followed physician’s opinion

The patient often loses his or her right to make the decision

It’s insufficiency in nursing education regarding clinical trial

or palliative care

Clinical trial or Palliative care ?

It is not killing(ex: IV push KCL)

It is allowing dying

It is letting die

or

Ethical Dilemma?

Quality of lifeSymptoms

Functional

Limitation

Psychologica

l

Distress

Heart Failure

Pathophysiology

Rector's model of quality of life

Good death

How to provide care?

The difference between

Euthanasia V.S. Nature death

Qu

ality

of L

ife

Diagnosis Euthanasia Nature death

Life survialAnti-cancer Tx.

Death

Palliative care

Put Nursing Humanities

From Scientific research

To Palliative care

into Practice

Palliative MedicineHospice Care

Quality of death Quality of life

1980

Palliative Care Services in Taiwan

Palliative care model

W: Hospice ward (52)

H : Hospice home care (84)

S : Shared care (130)

C: Community care (81)

10W,13H,13S,8C

3W,5H,10S,12C

0W,0H,2S,0C

5W,7H,9S,6C

4W,4H,8S,5C

1W,2H,5S,8C

6W,12H,12S,3C

1W,1H,6S,1C

2W,3H,6S,2C

1W,1H,3S,1C

0W,2H,4S,14C

1W,2H,3S,4C

2W,4H,6S,2C

3W,3H,5S,2C

5W,10H,10S,5C

1W,2H,2S,1C

2W,3H,8S,2C

5W,10H,17S,4C

0W,0H,1S,1C

Update 2015/10/19

There are more thirty thousands patients

dying in cancer every year, but hospice beds

can not meet the need in Taiwan.

.

Quality of Death / End-of-Life Care in Taiwan

終末照護的負擔

終末照護的環境

終末照護的品質

終末照護的可近性

The Economist Oct 2015Taiwan was ranked 6th in the world.

Artificial nutrition and hydration is the first ethical dilemmas in the issues of clinical management.

Truth-telling and place of care had higher

scores in the issues of communication.

management as.From: Chiu TY, Hu WY, Huang HL, Ya CA, Chen CY (2009) J Clin Oncol.

Prevailing Ethical Dilemmas in Terminal Carefor Cancer Patients in Taiwan

Taiwanese culture

“ I do not becoming a starving soul after death

and affecting one’s later generations ”

“ Eating is as important as the emperor ”

“ Food comes first for people ”

A Medical Last Rite?- Intravenous Fluids and the Hospitalized Dying

59the final dignity in life is often neglected

Do ANH would briefly prolong life?

excessive supply with fluid and ANH

increase body loading

discomfort

limb or general edema

severe pleural effusion

pulmonary edema, with consequent dyspnea

decrease in patients’ quality of life (Morita et al)

The survival period of terminal cancer patients

wouldn't have differences whether using ANH or not

(NTUH hospice team, 2002)

Many health providers still lack knowledge

to handle this issue properly and comfortably.

Health

healthpromotion

control disease &long term care

X

supportive treatment & palliative care

Disease

Good

death

Disease trajectories and treatments of the patient at the end of life

appropriate care at end of life

ethical consideration

survival

curative treatment

& quality of life

Totalsuffering

palliative

nursing

family

distress

(Hu, 2012)

Knowledge, attitudes, and behavioral

intentions of nurses toward providing

ANH for terminal cancer patients

in Taiwan.

Aim: to understand present knowledge, attitudes, and

behavioral intentions of clinical nurses providing artificial

nutrition and hydration (ANH) for terminal cancer patients.

197 nurses from the gastroenterology, general surgery, and

intensive care units

knowledge about providing ANH for

terminal cancer patients was lower

( accurate-answer rate, 53.67% )

From: Ke LS, Chiu TY, Lo TY& Hu WY (2008) Cancer Nursing.

62

Nurses’ behavioral intentions still

favored providing ANH

‘‘attending physicians’’ (45.3%) is

important influencing persons on

nurses’ support for ANH

98% of nurses were

likely or very likely to

provide intravenous

fluids and artificial

nutrition

Table 3 Comparison of mean scores of pretest and post-test within single

group

a Used Wilcoxon signed ranks test

Variable Pretest Post-test t value or z

value

95% CI p value

Knowledge

Control, mean (SD) 5.68 (2.62) 5.21 (2.58) z=−1.517 – 0.129

Experimental, mean (SD) 6.80 (3.11) 10.96 (2.95) z=−5.255 – 0.000

Attitude

Control, mean (SD) 10.49 (1.61) 10.66 (1.42) t=−0.774 −0.61∼0.27 0.443

Experimental, mean (SD) 10.65 (2.03) 12.79 (2.57) t=−5.191 −2.96∼−1.3

1

0.000

Behavioral intentions

Control, mean (SD) 1.58 (0.44) 1.61 (0.47) z=−0.050 – 0.960

Experimental, mean (SD) 1.67 (0.42) 1.97 (0.36) z=−3.274 – 0.001

***

***

***

The nurses’ attitudes

about providing ANH

for terminal cancer

patients viewed ANH

as having more

burdens than benefits.

Table 4 Comparison of mean score changes in 2 groups

Mean score change = (mean score of post-test) − (mean score of pretest)

a Used M–W test

Variable Control (n=44) Experimental (n=44) t value

& z value

95% CI p value

Knowledge

Mean score change (SD) −0.48 (2.72) 4.18 (3.24) t=−7.306 −5.92∼−3.39 0.000

Attitudes

Mean score change (SD) 0.18 (1.44) 1.86 (2.25) t=−4.165 0 −2.48∼−0.87 0.000

Mean score change (SD) 0.03 (0.56) 0.30 (0.52) z=−1.943 – 0.052

After educational intervention, the mean score of knowledge and attitude had significantly increased.

***

***

However, the mean scores of changes of behavioral intentions between two groups

were not significant.

Behavioral intentions

From: Ke LS, Chiu TY, Hu WY & Lo TY(2008) Support care cancer.

Effects of educational intervention on nurses' knowledge, attitudes, and behavioral intentions toward supplying

artificial nutrition and hydration to terminal cancer patients.

98.8% of nurses would be provide

intravenous fluids and artificial nutrition

families requiring that ANH

followed physician’s orders× Sufficient knowledge

+

Ethical reflection

the patient often loses his or her right to make the decision

insufficiency in nursing education regarding end of life care

Ethical considerations

Appropriate therapy

×

“ If you do not recognize through to life,

how can you recognize through to death? ”

(The Analects of Confucius)

A taboo concept to telling the truth

82.1% terminal ill patients

whose consent sheet was

signed only by family

( Huang, Hu, Chiu & Chen, 2008)

69.5% cancer patients

at terminal stage

the preeminent role of

family in end-of-life

decision making

The family oriented decision-making in Taiwan

Physicians (43.9%) and nurses (49.4%) had the ethical dilemmasin truth telling and discussing the advance directives

A myth in Taiwan

respect the families’ wishes rather than

patients’ wishes

conflict with the goals of palliative care

69

Core values Respects patients’ autonomy Refuse unnecessary medical management

For the past 20 years, legal and medical ethical exploration

of medical decision making in Taiwan has revolved around

the idea of patient autonomy.

Related ethical issues

Truth Telling

Executing Advance directives

Hospice-Palliative Care Act (Taiwan, 2000)

Patient Autonomy Act (Taiwan, 2015)

(adequacy = 41.41%) Canonical

Loading

4. Families are unable to manage patients’ emotional

reactions

0.63 0.04

5. Patients will be sad and commit suicide 0.56 0.0.6

6. Families can’t accept the disease prognoses of patients 0.51 0.14

7. Truth telling means the announcement of medical

failure and imminent death

0.46 -0.38

n=229

Puzzling factors Canonical

Weight

0.37

0.34

0.631. Families don’t know how to tell patients the truth 0.85

2. Unnecessary to tell aged patients the truth 0.71

3. Patients can be happier without awareness of truth 0.70

From: Hu WY, Chiu TY, Chuang RB & Chen CY (2002) A professional perspective：solving

family-related barriers to truthfulness in cases of terminal cancer in Taiwan. Cancer Nursing.

Family-related barriers to truthfulness of terminal cancer in Taiwan

Truth telling is the most difficult

decision encountered by family

caregivers.

(adequacy = 40.69%) Canonical

Loading

0.59

0.33

0.43

4.To identify what patients and families know and find the 0.65

appropriate time and person to give more information

0.03

5.To tell families that most patients have actually known

their prognoses

0.58 0.15

6.To provide the help by psychologists or social workers 0.40 -0.05

7.To explain the benefits of truth-telling to families 0.38 -0.22

n=229

Solutions Canonical

Weight

1.To communicate with and encourage families to accept 0.83

patients’ prognoses

solving family-related barriers to truthfulness of terminal cancer in Taiwan

From: Hu WY, Chiu TY, Chuang RB & Chen CY (2002) Cancer Nursing.

3.Tell families about the possible emotional reactions in 0.72

patients and the way to support

2.To discuss the sickness gently with patients and 0.76

determine what patients know

“What do you think about your sickness? ”

“Would you like to have more information

about your illness? ”

Nationwide guidelines for truth telling in Taiwan

ACTS

Assess and preparation

Communication with family

Truth telling process

Support and follow up

website：http://health99.doh.gov.tw/educZone/edu_detail.aspx? Catid=21568&Type=SEARCH )

Dynamic

process

The knowledge and barriers of

the advanced cancer patient

receiving hospice palliative care

Hu W.Y., Chao C.S. , Chen C.Y. , Wang C.H. ,

Yang C.L. , Hsu T.H., Sung C.L.

A National Survey in Taiwan

Physician Nurse

249 496

745

Subjects

Number

Total number = 1613

Cancer

PatientFamily Public

156 176 536

868

A questionnaire survey

Two-stage systematic with unequal proportion random sampling

Institutes: 18 medical centers or local hospitals

From: Hu W.Y., Chao C.S. , Chen C.Y. , Wang C.H. , Yang C.L. , Hsu T.H., Sung C.L. (2012)

Behavior Intention in Truth Telling Model：Patient

Marital status

Religion

Understanding (H-P)

Acceptance levelhospice/palliative care

Understanding (ADs)

Understanding (HPCA)

Understanding (CPR)

Understanding (DNR)

Knowledge(H/P care and HPCA)

Agree with ADs

Occupation

Education

Sex

relative with incurable

disease

Ethics in DNR

relative with terminal illness

relative who had been received

H/P care

R2=22.5%

Prefer QOL at terminal stage

PatientIntention in

Truth telling

Barrier(truth telling and H/P care)

Attitude(truth telling-positive)

AttitudeHospice/Palliative

(HA-I)

Decision Balancein

ADs (Cons)

Agree to himself

to execute ADs

have ADs or not

Agree to relative to

execute ADs

It’s the positive attitude of truth telling

and they agree to execute ADs

There are only 2 important

predictors, the total explain

variance (R2) is 22.5%

Behavior Intention in Truth Telling Model ： Family

Marital status

Religion

Understanding (H-P)

Acceptance levelhospice/palliative care

Understanding (ADs)

Understanding (HPCA)

Understanding (CPR)

Understanding (DNR)

Agree with ADs Agree to himself

to execute ADs

Agree to relative to

execute ADs

have ADs or not

Occupation

Education

Sex

relative with incurable

disease

Ethics in DNR

relative with terminal illness

relative who had been received

H/P care

R2=32.3%

Knowledge(H/P care and HPCA)

FamilyIntention in

Truth telling

Attitude(truth telling)

Decision Balancein

ADs (Cons)

AttitudeHospice/Palliative

(HA-I)

Barrier(truth telling and H/P care) For patient should not be

told the truth

Negative attitude of truth telling

among family

For patient should not be told the truth

Better knowledge about hospice care and

advance directives of cancer patient and family

There are 3 important predictors the total explain variance (R2) is 32.3%

Behavior Intention in Executing ADs ：Patient

Marital status

want to be disclosed the

terminal illnessUnderstanding (H-P)

Acceptance levelhospice/palliative care

Understanding (ADs)

Understanding (HPCA)

Understanding (CPR)

Understanding (DNR)

Knowledge(H/P care and HPCA)

Agree with ADs

Possibility to execute

ADs

Agree to relative to

execute ADs

have ADs or not

Occupation

Education

Sex

relative with incurable

disease

Ethics in DNR

relative with terminal illness

relative who had been received

H/P care

Prefer QOL at terminal stage

Death Place(home)

R2=60.3%

Health providerIntention in

Executing

ADs

Intention in

Truth telling

Intention in

Hospice-Palliative

care

Attitude(truth telling)

AttitudeHospice/Palliative

(Positive)

Barrier(truth telling and H/P care)

Decision Balance

ADs (Cons)

Behavior Intention in Executing Ads ： Family

Marital status

want to be disclosed the

terminal illness

Understanding (H-P)

Acceptance levelhospice/palliative care

Understanding (ADs)

Understanding (HPCA)

Understanding (CPR)

Understanding (DNR)

Knowledge(H/P care and HPCA)

Agree with ADs Agree to myself to execute

ADs

Agree to relative to

execute ADs

have ADs or not

Occupation

Education

Sex (F)

relative with incurable

disease

Ethics in DNR

relative with terminal illness

relative who had been received

H/P care

R2=36.3%

Intention in

Truth telling

Attitude(truth telling)

Barrier(truth telling and H/P care)

Health providerIntention in

Executing

ADs

Intention in

Hospice-Palliative

care

AttitudeHospice/Palliative

(Positive)

Decision Balance

ADs (Cons)

Important Factors Related to Behavior

intention to provide (execute) ADs

The more knowledge and the

fewer ‘‘cons’’ perceived by

individual, the more willing

they were to complete ADs at

present or in the future. Cancer patients and family with more

knowledge about DNR and willing to

sign hospice care when end of life are

coming are intended to discuss or

execute advance directives

Heath providers, the publics and

cancer patients with positive aspects of

intention behavior of discussion or

execution advance directives are more

earlier to discuss or execute advance

directives

based on individualism,

ADs are acceptable,

regarded as basic rights

Western countries (culture)

family-centered model

family member might become

the designated medical agent.

Eastern countries (Confucian culture)

attitudes toward executing advance directives (ADs)

62.1% patients: family members signed

consent without the patients’ involvement in

the discussions. ( Huang, Hu, Chiu & Chen, 2008)

The issue of executing ADs

is becoming more important in Taiwan.

autonomy

Living will DNR

ACP

Durable power of

Attorney for health

care

ADs

The relationship among Ads, ACP and DNR

To provide information about the HPCA and

related materials about ADs proactively ,

(including answering questions about obtaining

legal documents and the actual process of execution

of Ads).

Core Concern of

Health Promoting in Palliative Care

Advance Care Planning

Life and Death education

Under Chinese filial piety and familism

culture, self-determination for the

Chinese elderly at the end of life.

Such as signing DNR (do-not-resuscitate)

consent, It is difficult for both elderly

residents and their family members.

Palliative care needs for Chronic disease

How about the Asia culture?

8484

The difference between the Western / Eastern

principle of autonomy

“For Western people, the issues of life and

death are too important to be left with

others, even if they are members of one’s

family”

(Fan, 1997)

“For Eastern people, these issues above are

too important to be left only with oneself,

even if one is competent”

Respect choice

Patient

Autonomy Act

in Taiwan

2017/01/06

Sharing Your Wishes

Advance Care Planning

1.

Presenting

and

illustrating

topic

2.

Facilitating

a structured

discussion

3.

Completing

document

with

advanced

directives

4.Reviewing and updating the ADs

5.

Applying the

ADs in

clinical

circumstance

s

ACP is a constant communicated process

The process of ACP

1. presenting and illustrating topic(呈現、說明並引發病人討論ADs相關的醫療主題)

2. facilitating a structured discussion(促進結構性討論病人的價值觀與期望醫療方式 )

3. completing document with advanced directives(完成ADs書面文件簽署 )

4. reviewing and updating the ADs(再審視、修改或更新ADs內容)

5. applying the ADs in clinical circumstances (實際落實ADs於臨床照護決策情境)

COMMUNI

CATION

PROCESS

ACP discussion How?

* opportunistic informal conversation* Formalised systematic ………..

What?* What matters to you?* What do you wish to happen? * What do you do not want to happen? ………..

Who?* Named spokesperson (informal)* Lasting power of Attorney (formal) ………

Where?* Preferred place of care* Carer’s preferred place of care…………

Others?* Special instructions-organ/tissue donation

when

Break bad news & Sign the DNR

Communication skills+Medical ethics

Communication is the key

Listening

(傾聽)

Silence

(靜默)

Empathy

(同理)

NTUH HOSPICE

Team

conference

Family

conference

Nurse is an advocate and coordinator

physician - patient – family

It is the obligation of the physician to inform the patient/family

about the burdens and benefits of palliative care.

H.T., Lee & W.Y., Hu ( 2015)

Purposes : This study aimed to explore

elderly nursing home residents’

attitudes when they need to

sign their own DNR consent.

Culture Perspectives in the Attitudes of

Elderly Nursing Home Residents in

Signing Their own Do-not-resuscitate

Consent in Taiwan

Methods : in-depth interview

Sampling (in the eastern Taiwan)

- Consecutive sampling was used to select participants.

- Inclusion criteria

Aged≧65 years and spoke Mandarin or Taiwanese

Living in the nursing home ≧ 1 month

Families who are their caregivers or someone

who can make decision for them

The SPMSQ of the elderly ≧ 8

Subjects

The average number of chronic diseas

3 / each person

The most common chronic disease among the

residents were CVA (60%), HTN (50%), DM (20%) ,

CAD (16%), and arthritis (13%)

11 residents were recruited

The mean age of residents : 80.6 years

Outcomes (2)

Most of elderly nursing home residents in this study

refused to make decision by themselves.

Content analysis of the interviews revealed four

themes for declining to sign their own DNR

Theme IV: Regarding making decision by

themselves as an unnecessary thing

Theme III: Accepting the arrangement from God

Theme II: Trusting the doctor’s ability

“I am glad to know my son spend money for me to live here, it costs him a lot of money…I know that my son care about me and I trust him”, “…if he wants me to live longer, let me have CPR; if he does not want me to suffer too much pain and wants me to pass away, I would also agree with him…he knows what decision is best for me”

Theme I: Depending on children’ decision

“doctors…they are professionals…they know

what decision is the best for me…if they said

my condition is too bad to live longer…I will die

soon…just let me pass away” “…I have told to

my children that they need to trust doctors’

ability and follow their orders without

questions…”

“I am a good person and I always treat people

very kind…the God knows what is the best

arrangement for me and he will bless me

everything…” “ …and I will also accept any

arrangement from him happily…, if he think

I need to have the CPR at the end of my life

before going to see him… it is my destiny to

have this challenge from him…”

“it is not necessary for me to make decision

about the end of life care for myself …when

the timing is coming…everyone knows how

and what to do is best for you…” “the only

thing you need to do is accept it…why do I

think too much to cause my families or myself

trouble? it is an unnecessary thing for me…”

Implications for practice

Nurses can increase the family-center

autonomy by actively implementing the

advance care planning for elderly residents,

their families as well as the health providers

to make decision together.

The cultural issues, such as filial piety and family-

center decision making, did affect the elderly

autonomy and the elderly residents tended to

make decision by someone except themselves in

Taiwanese nursing homes.

Nursing facilitiesNursing home

Long term care institution

Hospital based institution

Community careCommunity general

practitioners

Health center

Current long term care services in

Taiwan

Home-based care Home care

Home social care

Delivery services

Home rehabilitation

Elder activity

center…etc.

National Taiwan University

The resources

from civil

society.

Social welfare

resources

government

• Cancer ward

• Non-cancer

ward

OPD

Hospice

in patient

careHospice

shared care

OPD

for palliative care

Hospice home care or

day care

Discharge planning

Other special

Hospice home care

The public has a well of fear,

anger and distrust about the

care they will receive and how

they and their families will die.

Totalsuffering

Family

distress

Health survivalX &Good

deathQuality of life

Provide Appropriate end of life care

RN/APN

Research results as Evidence

Evidenced base practice

Teaching material SN

2005-2008 Clinical skills of hospice palliative care in medical education course for nursing students

2003-2005 Medical education for patient-centered end-of-life care clinical courses for nursing students

2008-2011 E-learning of end-of-life care in medical education incorporated with humanities and community-nursing practice

2011-2012 The establishment of teaching strategies and evaluating tools for the clinical competence of end-of-life care - Holistic assessment and Comfort care

2012-2013 International collaborative development of e-learning project in end-of-life care:an action research with service learning for humanity

2013-2016 Developing, establishing and testing nursing curriculum for clinical research nurse by using the OSCE program with competence indicator-based

Educational

research in

EoL care 2014-2017 Integration of the medical care and social systems to establish better teaching model of end-of-life care to achieve good death at home –nursing practice

2017-2020 Integrating the connotation of patients ' autonomy act to promote hospice care in the community--advanced curriculum of Nursing specialty in medical humanities and society

The overview results of the

decade (2003~2018) series

survey and action research

were conducted.

103

3. Team

4. Society

5. Health system

1. Patient

2. Family

Figure 3. Dimensions of the Palliative Care learning process

- European Association for Palliative Care (EAPC, 2004)

Level A Level C

Basic Advanced

Level B

Undergraduate

SN

A

Postgraduate

RN (new)

General setting

A

Postgraduate

RNPalliative ward

B

Postgraduate

SpecialistPalliative care

C

3. Spiritual-religious- cultural

4. Ethical consideration

5. Teamwork

6. Organizational dimension

7. Non-clinical work: administration …..

1. Physical dimensions

2. Psychological-social dimensions

104

Figure 3. Dimensions of the Palliative Care learning process

- Taiwan Palliative Nursing Association (TPNA, 2008)

Level A Level CEntry Specialist

Level B2

A

Postgraduate

RN (new)

General setting

B1

Postgraduate

RNPalliative ward

B2

Postgraduate

SpecialistPalliative care

C

Professional

Level B1

13 hours

(Team-basic)

43 hours

(Nurse-advanced)

15 hours

(Team-advanced)

21 hoursPreceptor

- credentialing

Palliative nurse certificate

Preceptor

Palliative care in community

Undergraduate

SN

Formal

curriculum

Gap ?

1st practicum

manual2nd practicum

manualChange (一)

suggestion(1)

suggestion(4)

3rd practicum

manual

sugestion(2)

Change (二)4th practicum

manual

suggestion(3)Change (三)

Action research

reflection

Patient-oriented Multimedia-directed Interactive

Clinical skill teaching method

Assistant teaching materials

107

The last sixty days

- manual for teacher

Palliative & end of life care

Pearls of Palliative Care for

Nursing Practice - manual

More than 40 native

multimedia teaching films

that were case-based were

completed, and placed on

the e-learning platform.

The teaching material fits

in scenario simulation.

Cancer movies

Non cancer movies① Critical disease

② COPD

③ ESRD

E - learning

14- Base course (Teamwork)

18- Advance course (Nursing)

18-Advance course (Medicine)

Case-based at end of life care

The Teacher’s Guide was

applied for flipped classroom

teaching since 2010

http://tis.mc.ntu.edu.tw/xms/

Grade A+

能呈現病人的基本資料、治療、生理、心理、社會與靈性層面的相關性

Grade A+

All goals achieved

beyond expectation (4.3)

TC - OSCE(Team Compassionate Based – OSCE )

AR/VR/MR

Making sense of magic leap and the future of reality…

天

Thinking

Feeling

Feeling and

thinking

are

complementary

Thinking

destroys

the beauty of

Feeling

Without

thinking

- Feeling has

no meaning

Whole-person learning

APN(C level)

The core competencies of nursing professional

RN(B level)

SN (A level)

Caring

&

Respect

How to cultivate the student

in palliative care field

Novice Expert

( practice growth)

To cultivate

sensitivity

reflection

Table 3 Attitudes of student nurses on ANH

for terminal cancer patients (con’t)

Item Mean (SD) Rank

Burdens of providing ANH

8. In terminally ill patients, increased

respiratory tract mucous production may

result from intravenous infusions with

subsequent need of suction

2.44 (.72) 2

9. In terminally ill patients, fluid overload is

likely to result in pleural effusion or

pulmonary edema

2.02 (.48) 7

n=89

Attitude toward supplying terminal

cancer patients with ANH had a mean

score of 2.75 (SD=0.72, range 1–5), which

shows the negative attitude of student

nurses toward being inclined to supply

ANH to terminal cancer patients.

Totalsuffering

Family

distress

health survival

Don’t lossThe opportunity

of survival

Clinical trial

&good

deathquality of life

Do graspThe opportunity

of good death

Hospice/Palliative careLife threaten

disease treatment

Advance care planning

Ethical reflection

X

Respect patient’s

choice

■ Thinking globalization

Strategy nationalization

Action localization

Improving nursing competencies in palliative

Nursing education

Strategies and Process

Building the Collaborative Research Platform and Professional

Training Workshop for Cancer Treatment、Hospice/Palliative

Care and Bioethics in Southeast Asian Countries

The main goal is to establish an academic and cultural translational platform connecting academic institutions in Asia and around the world.

National Taiwan UniversityHOST

14~21

Indonesia

Vietnam

1~8

1

Cambodia

4~8

Thailand

0~2

India

3~10

Malaysia

USA 1

41~46

Taiwan

0~2

Philippine

1~2Australia

0~1

Bangladesh

UNESCO

0~1

0~1

BurkinaFaso

1~3

Japan

The professional

training workshop

(2012 ~ 2016)

UK

0~1

Practice-based researchShifting the paradigm of palliative care research in Asia

The ultimate goal of Practice-based research network is to generate knowledge

and evidence to be as teaching materials, to upgrade clinical quality of care

1.Can countries of Asia learn from each other

about best practices relevant to the Asian region?

2.What are the cultural traditions relevant to

palliative care practice that have changed / are

changing?

Train practice-based research collaborators, to establish a communicative website with data

bank capacities, and to forge a consensus on international collaborative framework

Developing a palliative course

in ASIAN countries

April 19, 2018

Hu Wen-Yu

National Taiwan UniversitySchool of Nursing and Hospital, Professor & Director

Global Education And Research Center

for Life Care Science

( GEAR-LCS )

全球生命關懷教育與研究中心

Interest group

Women and child health care team

Figure. The structure of the Global Education and Research Center for Life Care Science

(GEAR-LCS)

Consulting team

Director

Administrative team

Acute/Chronic disease and cancer

care team

Interest group Interest group

Palliative and geriatric care team

Community care and long-term care team

Interest group Interest group

Psychiatric and mental health

care team

Hydration & TPN for terminal patients

Good death / Quality of death

Breaking bad news or tell the truth

Ethical consideration in terminal situation

Family caregiver bursen

Complementary therapy for total suffering

Palliative Nursing education for terminal

patients……

Sign in with Us Now

Global Education and Research

Center For Life Care Science aim to

keep communicating with

multidisciplinary and international

Humanity in Medicine and Bioethics

research teams in Southeast Asia, whilst

promoting Holistic Medicine Education

and End-of-life Care practice.

http://nursing.sino1.com.tw/Default_en.aspx

QR CODE

International Cross Cultural - Collaborative Research

The research issues:

What is the good death (COPD, ESRD, Cancer patients)?

To understand the perception and acceptance of withdrawal hemodialysis for hemodialysis patients.

To understand the perception and acceptance of hospice care for

hemodialysis patients.

To understand the spirituality for hemodialysis patients.

To understand the perception and expectance of ADs for hemodialysis

patients.

To understand the expectance of Five Wishes for hemodialysis

patients……….

Southeast Asian Clinical Research Consortium (SEACRC)

PI : Prof. Wen-Yu Hu

Co PI

Taiwan: National Taiwan University

Japan: Tsukuba and Chiba University

Indonesia: Universitas Gadjah Mada

Thailand: Mahidol University and Chiang Mai University

Research concepts

The need of Nursing education on palliative care

Palliative care issues (Good death, quality of life…)

Nursing Education Needs of Palliative Care-preliminary survey

To help medical professionals further

put humanistic and social care into

practice, increase ethical reflection in

end of life care and nursing competency

Challenges VS Expectations

Information technologist

NTUH HOSPICE

It is the obligation of the physician to inform the patient

/family about the burdens and benefits of truth-telling.

Team

conference

Family

conference

Nurse (CRN) is an advocate and coordinator

(physician - patient – family )

Totalsuffering

Family

distress

health survival

Don’t lossThe opportunity

of survival

Clinical trial

&good

deathquality of life

Do graspThe opportunity

of good death

Hospice/Palliative careLife threaten

disease treatment

Advance care planning

Ethical reflection

X

Respect patient’s choice

Facing the suffering of death

and despair

Hope

Let

life be beautiful

like

summer flowers

Indian poet

Rabindranath Tagore

” Stray Birds ”

Death

like

autumn leaves.Indian poet

Rabindranath Tagore

” Stray Birds ”

Thanks your attention.

Any Questions ?

National Taiwan University Hospital