Ethics, DNR & end-of-life in the era of COVID-19

ETHICS, DNR IN THE ERA
OF COVID-19
Decisions, Communications, and (a bit of)
Management

Dr. Tan Hui Siu

MBBS, MRCPCH, MBE, Cert Peds Bioethics
& end-of-life
V
For healthcare professionals use only. The organizer of this CME will share the slides after the
session. Participants should not take or reproduce this slide in any form without permission.

• This slide was prepared for the Webinar Series on
COVID-19 session on 24th Feb 2021, by Dr. Tan Hui
Siu, Paediatrician subspecialized in Bioethics from
Ampang Hospital, Malaysia.

• This is intended to share within healthcare
professionals, not for public.

• Kindly acknowledge “Clinical Updates in COVID-19
http://www.nih.gov.my/covid-19/” should you plan to
share the information obtained from this slide with your
colleagues.
For healthcare professionals use only.

STORIES TO TELL
➤ Case scenarios, with elements
of narratives, are meant for
moral imagination and triggers
for further conversations. The
stories told here are
fi
ctional
or semi-
fi
ctional, and are in no
relation to a particular patient.

PATIENT A
➤ Son of 75-year-old patient unhappy of “one way transfer decision to the
general wards”.

➤ COVID-19 pneumonia Cat 5/D23/transferred from ICU to gen ward 3/7
ago, as poor candidate to survive intubation in view of poor heart comorbid.
Complicated with NSTEMI, refused bypass for triple vessel disease, NYHA
Class III, no previous ICU admissions. Patients wishes unknown, son says "I
want to go all out".

➤ New onset drop in GCS in the ward, new onset. Intubated, to investigate, to
decide on overall goals of care.

➤ From the managing team: “Who should be authorized to make the best
decisions on behalf of this patient who lacks decision-making capacity”

➤ Is there also elements of ethical dilemma and family-physician con
fl
icts here?

PATIENT B
➤ 60-year-old retired high school teacher, with underlying hypertension and
dyslipidemia, premorbidly independent presented with sudden syncopal attack.
Patient was brought to ED and was treated as ST elevation MI. Deteriorated in
ED, intubated with 4 inotropic support. Patient showed some clinical
improvement in the ward, but GCS is still poor.

➤ A week later, his conditioned worsened due to pneumonia. He required
intubation, renal pro
fi
le worsened with metabolic acidosis and increased
inotropic support.

➤ Without sedation, patient is able to wince in pain, pupils 3mm reactive,
otherwise no cough or corneal re
fl
ex, no corneal re
fl
ex. Family was informed
that prognosis was grim.

➤ From the managing team: How do we decide if patient is for active
management or comfort care? Is it ethical to opt for conservative
management? (Active management - angiogram and haemodialysis will need
to be done with high risk consent)

PATIENT C
➤ 9 year old, vegetative state due to TB meningitis,
trached, ventilator dependent Almost in ward for 5
months. This week, new bout of lung infection,
CPAP stepped up to SIMV mode. Parents did not
accept step down of care.

➤ The only non-COVID patient in the paediatric ward,
which is turning into full COVID hospital. Not able
to transfer out. The attending paediatrician is no
longer in-charged as been deployed to COVID team.
Current paediatrician - "Talking to mother multiple
times regarding comfort care, however, parent still
have a big hope on her".

➤ Ethical question: Is it right to hasten the
stepping down of care due to rationing and
public health needs of COVID-19 for a child
with poor neurological prognosis when the
parents are unprepared?

DISCLAIMER
➤ Identify with:

HESS, CEC, Paeds, Hospital Ampang

MREC, MBC

➤ Clinical/administrative roles: clinical,
NRP/PALS trainer, educator, NICU/PICU,
administrative and policy-making
experiences.

➤ A learner, will cite accordingly, not
prescribing, making no claims.

➤ Limitations:

➤ Conceptual discussions

➤ Observations

➤ Acknowledge gaps in evidence.
Dear doctors,

We encourage that you allow our parents to be
with their dying child, even during resuscitation.

(Contrary to common belief, family presence reduces litigations and improves in overall resuscitation efforts
and professionalism, apart from helping family to accept death. To read more on the evidence and benefits of
family presence during resuscitation (FPDR), please …..)

As a team leader (a medical officer or a specialist), if you have
decided to allow the presence of the parents beside their child, we
applaud and will support you fully.

Please take note of the simple steps below that we have created to
make you feel comfortable in supporting the family in the most
critical phase of their lives.

SIMPLE STEPS FOR FAMILY PRESENCE DURING RESUSCITATION
1. Allow ONLY the parents or the closest family member, not more than TWO
persons at a time.

2. Break the bad news of the critical condition of the child, if (unfortunately) nobody
has done so yet.

• Keep sentences simple eg ‘I am sorry that your child is in a very critical condition now and there is a possibility that
he might not survive. <pause> We are trying all we could to save him/her.’

3. Offer FPDR (visual or physical contact).

• ‘You could choose to be with him/ her in this critical phase, as long it is not obstructive to the resuscitation process.’

4. Verbalize concerns that may arise with the presence of the parents, that they may
be asked to leave temporarily if:

A. they become disruptive

B. they are experiencing fainting episode

C. there are procedures that do not allow any distractions eg intubation, chest tube insertion etc

D. they wish to leave

5. Before the parents come in, remind the staffs to maintain professionalism and
show empathy.
6. Have an empathetic and trusted nurse to be with and support the parents.

7. Focus on your role in the resuscitation process, but make sure you update the
parents on the progress, and to prepare them if the child would not make it.

• ’Somehow he/she is not responding much to our resuscitation, and we are worried that he/ she will not make it. I am
truly sorry. <pause> Maybe it is time that we hold his/her hand, say some prayers, tell them not to fear and we love
them very much.’

by FPDR support group The only right thing to do..
FPDR Perak Policy
CEC Ampang MBC

ROLES OF BIOETHICS DURING COVID-19
➤ To forge strong sense of solidarity

➤ To acknowledge moral distress, and encourage steps
clinicians and healthcare managers could take to support
each other

➤ To (help) resolve complex issues and con
fl
icts

➤ To enable and justify safe and just process/practices.

PRACTICAL CONCEPTS (BIOETHICS/CLINICAL ETHICS)
➤ Case consult

➤ Policy making

➤ Education

➤ Advocacy, informal support
Complex
case/
conflicts
Ethics
consult
Refer
Analysis &
Recommen
dation
Receive
Further
action
Reflect
Identify
ethical
question
Gather
multistake
holder
Deliberate
x 3 & Plan
Impleme
ntation
Audit &
Review

DRAWING THE ETHICAL BOUNDARIES
Acknowledging the clinical/legal/sociocultural borders - what are the
acceptable options and where are the "grey areas".
Impermissible
Permissible
GREY
zone

WRITING SO FAR IN RESPONSE TO COVID-19
➤ Bioethics and COVID-19 - Guidance for
Clinicians https://doi.org/10.5281/
zenodo.3821126 - which includes topics on
shared decision-making, resuscitation, triaging,
communication, etc.

➤ BMJ ethics statement:

➤ "Report on the Ethical Responses to
COVID-19 in Malaysia"

➤ "Can Malaysian Private Healthcare Providers
Refuse to Treat Patients with COVID-19?"

➤ Ethics paper - "Paediatric Palliative Care during
COVID-19 Pandemic - A Malaysian Perspective"

➤ MOH ethics guide chapters (in progress)

TALKS THAT COVERED SO FAR SINCE COVID-19
➤ Ethics of advance care planning

➤ Informed consent - enduring the challenges during COVID-19

➤ Equity, ethics, and decision-making in healthcare

➤ Navigating through the moral distress and the challenges in clinical
practice during COVID-19 x 3

➤ Ethical dilemma and moral distress - to reason, re
fl
ect, and resolve

➤ Introduction to clinical ethics x 3

➤ Balancing science and safety in research ethics during COVID-19
Pandemic x 2

➤ Deciding for children - guiding principles

DO NOT RESUSCITATE AND END-OF-LIFE DECISIONS
Who

What

When

How

How to go about when in dispute?

(Micro level & prima facie duties, not macro level e.g. triaging,
which may override some of the principles)

COMPLEXITIES OF DYING IN THE MODERN ERA
Organ 1943 1960 1970
Kidney Death Dialysis, transplant Dialysis, transplant
Lungs Death Mechanical ventilation
Mechanical ventilation,
transplant
Heart Death CPR, pacemaker
CPR, pacemaker,
LVAD/transplant
Liver Death Death Transplant
Brain Death Death Death
J. Michael Bostwick, MD
Tony Brue, Clinical Ethics Class 2018

CONCEPT OF DYING IN MALAYSIA
A dying doctor
VS
Dying at home
Malaysia: 50% died in the hospital (2016)
DOSH 2016, Hospice M'Sia PC Needs 2016
For EOL, the majority of our respondents prefer to receive the bulk of care
at home (53%) and prefer to die at home (61%) (Figure 8), with a minority
opting to receive the bulk of their care in hospital (22%) and even smaller minority
opted to die in hospital (6%). In the figure, others included Mecca, nursing homes,
and other health care facilities.
Figure 8: Respondent's preferred place of death and where they expect to
receive the bulk of their care (n=600)
To understand why more deaths occurred in hospital compared to the preferred
home death, respondents were asked to rate a list of 11 reasons which may
influence why people end up dying at hospital. Figure 9 below shows that the
majority of respondents feel that interference by family is a very strong influence,
pain is better managed at a hospital, and as death is imminent the patient
required treatment that could only be provided in hospital.
Figure 9: Influencing Factors of why People Die at Hospital despite a
53%
61%
22%
6%
6%
11%
16%
21%
3.5%
1.2%
Expected place of care
Preferred place of death
At home hospital No preference Don't know Others
To understand why more deaths occurred in hospital compared to the preferred
home death, respondents were asked to rate a list of 11 reasons which may
influence why people end up dying at hospital. Figure 9 below shows that the
majority of respondents feel that interference by family is a very strong influence,
pain is better managed at a hospital, and as death is imminent the patient
required treatment that could only be provided in hospital.
Figure 9: Influencing Factors of why People Die at Hospital despite a
preference to die at home
53%
61%
22%
6%
6%
11%
16%
21%
3.5%
1.2%
Expected place of care
Preferred place of death
13.5%
15.0%
16.7%
18.8%
19.3%
20.7%
27.5%
28.8%
38.5%
39.3%
58.3%
16.7%
22.5%
30.0%
41.2%
35.3%
32.2%
39.8%
42.8%
39.3%
43.5%
8.7%
25.5%
32.8%
31.2%
25.2%
22.8%
29.3%
23.3%
19.2%
15.3%
11.3%
19.8%
21.8%
16.8%
14.0%
12.0%
14.3%
10.5%
7.0%
6.8%
5.5%
4.0%
10.8%
22.5%
12.8%
8.2%
2.8%
8.2%
7.3%
2.3%
2.3%
1.3%
1.8%
2.3%
People are uncomfortable with having a deceased
person in their home
People change their minds and decide they would
prefer their end-of-life occur in a hospital instead
Patients’ preferences are forgotten or unknown
Interference by medical professionals
It is too overwhelming a challenge for the family
People don’t make a plan or discuss preferences
People imagine dying suddenly, instead of battling a
terminal illness which is what happens more often
Caregivers panic and transfer care to a hospital
As their illness worsened and death was imminent,
the patient’s condition required treatment that…
Pain management is better handled at a hospital
Interference by family members
v strong influence strong influence modest influence weak influence no influence at all

RESPECTING PERSONS AND THEIR VALUES/WISHES
➤ "A young Chinese in her 30s with advanced breast cancer was admitted to
an inpatient hospice. She perceived herself as a Buddhist."

➤ "The husband and son visited her regularly. Her 5 yo son desired to do
something personal for his mother and in order to occupy him, she
requested him to comb her long hair. The simple task was both
ful
fi
lling and created a sense of contentment and satisfaction for him. The
son did his utmost to maintain the same routine every time he visited his
mother and this continued for several weeks.

➤ "As her condition deteriorated and she was dying, when they arrived later,
the father told his son to bid farewell to his mother. The little boy
however requested to comb his mother’s hair instead. This simple
action demonstrated his care and love for his mother and was the only
thing he felt he could do for his mother at his tender age."
Loh Ee Chin, Cultural differences in Caring for Dying 2011

RESPECTING PERSONS AND THEIR VALUES/WISHES
➤ "A Malay lady, who is a Muslim in her late 40s was diagnosed with advanced
breast cancer. She was married, several young children under the age of 10.:

➤ "During her
fi
nal admission, she was having the same problem as mentioned
above and her appetite was reduced. She also requested to stay in the ward
until she died as she was afraid that her young children could not cope with her
death. Not being a burden to her relative was also important which
in
fl
uenced her decision to remain in hospital."

➤ "She wished to take a shower when death was imminent to ensure that she
presented a clean image before the Day of Judgment by Allah (God) and her
husband agreed to assist her. When she suspected time was short, the nurse
assisted her to shower and wash her hair."

➤ "Without hesitation, her husband helped to comb her hair and dressed her in
white garments. She expressed a calm reliance on the death and accepted
death as God’s will. “Saya Reda”, she said, - meaning ‘I am willing to
submit myself to the God’. She died on that day."
Loh Ee Chin, Cultural differences in Caring for Dying 2011

PSYCHOSOCIAL AND SOCIOCULTURAL DIMENSIONS
➤ Cultural competency - older concept

➤ Cultural humility - still not all encompassing enough

➤ Personalised approach

➤ values and preferences -

➤ the in
fl
uence (or none) from their stated faith, upbringing,
education, experiences, identity, and relations to others.

➤ universal emotions (love, sad, guilt, pain), and sentiments
(towards those whom they loved)

➤ always ask - get history/story, understand the "how" and "why"

➤ be aware of own biases, see from di
ff
erent perspectives -
"lenses"

PROBLEM ANALYSIS - END-OF-LIFE DECISIONS
CHALLENGES
AND BARRIERS
Patient not
empowered
Lack of family
conversations on
death and dying
Unwarranted
litigation fear from
family members
Hard to die
Concept of dying
Lack of support for
clinicians -
psychosocial/ethical/
legal support
Skills &
competencies of
clinicians - comms,
ethics, cultural
Focus on tertiary
care, curative medicine,
than healing

PROBLEM ANALYSIS - END-OF-LIFE DECISIONS
CHALLENGES
AND BARRIERS
Patient not
empowered
Lack of family
conversations on
death and dying
Unwarranted
litigation fear from
family members
Hard to die
Concept of dying
Lack of support for
clinicians -
psychosocial/ethical/
legal support
Skills &
competencies of
clinicians - comms,
ethics, cultural
Focus on tertiary
care, curative medicine,
than healing
COVID-19

ff
ectiveness:

➤ Delay in resuscitation can be accepted for safety reasons e.g.
PPE/
fi
nding space/con
fi
rming code status.

➤ Not for shortage of beds, COVID-19, or social status.

➤ Delays can be mitigated by the

➤ anticipation of cardiorespiratory arrest,

➤ preparation of PPE and space in advance, and

➤ adequate training for di
ff
erent scenarios to ensure
e
ff
ectiveness.

*Pressure: duty to save lives, family expectations
BMA, MBC, NHS Scotland, Annex 40 MOH COVID-19

WHO DECIDES?

PATIENT

PATIENT AUTONOMY
➤ Western concept? Relevant during COVID-19? -
compromised to certain extent

➤ Respect for patient autonomy: recognising that patients
who have decision-making capacity have the right to
make decisions regarding their care

➤ to say yes, no, or waive (to family or physician)

➤ Relational autonomy

➤ Self-governing agent makes decisions shaped by
their relations to others.

➤ COVID -19
➤ Prevention and Control of ID Act 1988 - legal
boundaries that the pandemic will need to be
contained

➤ Moderate paternalism is ethically justi
fi
ed for the
safety of all.

➤ However, severe harm or burdens towards
individual health and well-being should never be
in
fl
icted for public utility. Personalism, could
complement this utilitarian approach we needed.
Personalism = respect for persons and their
individual values. WHO (2008), PH act (1988), Dworkin G. Paternalism. New ethics in PH (1999)
Adequate information should always be provided for
in the following areas (23):

• Isolation and quarantine process for COVID-19
patients or suspects

• Diagnosis and subsequent management plans

• Updates on clinical progress or results.

• A sudden change of the patient’s clinical status

• When a revision in the goals of care is needed

• When a request for more information by the
patient or family members.
Compensatory Measures to Counter the Impact to
Patient Autonomy and SDM during COVID-19
➤ Keep patient well-informed

➤ Have open and e
ff
ective communications

➤ Make sound clinical judgments based on the latest
evidence and skills

➤ Maintain privacy and con
fi
dentiality.

➤ Consider honouring informed refusal from dying
patients.

APPELBAUM P - ASSESSMENT OF PATIENT'S COMPETENCE TO CONSENT
➤ Temporary incapacitation secondary to temporarily impaired during
a state of delirium, fever, hypoxia, uraemia, sedation, or stroke;
psychosocial adversities, fear, and anxiety.
Communicate a choice
Appreciate the situation and its consequences
Reason about treatment options
Understand relevant information
To demonstrate decision-making capacity,
one must…

VOLUNTARINESS
➤ Potential in
fl
uences:

➤ acute stress,

➤ family in
fl
uences,

➤ patient-physician relationship,

➤ power di
ff
erences, and

➤ social determinants (e.g. low income and educational
level) 
Roberts L. Informed consent and the Capacity for Voluntarism (2002)

SHARED DECISION MAKING
➤ SDM is generally needed for most medical decision-making

➤ SDM builds trust, allows self-determination, the right to information, and some
physician authority.

➤ Cross-section nearly 500 in Malayisa. SDM was preferred by 51.9% of
patients, followed by passive (26.3%) and active (21.8%) roles in decision-
making. Higher household income was signi
fi
cantly associated with
autonomous role preference (p=0.018). Among patients whom doctors
perceived to prefer a passive role, 73.5% preferred an autonomous role
(p=0.900, κ=0.006).
Patient
autonomy
Physician
autonomy
• Ho A. Relational autonomy or undue pressure? Family’s role
in medical decision-making. 2008

• Kon A. The shared decision-making continuum. 2010.

• Ambigapathy R. Malaysia. 2016
SDM
Autonomy = relational, power difference, education

LEGAL/REGULATORY FRAMEWORK FOR AD
➤ Advance directives - No legal statute in Malaysia, and public
awareness remains poor.

➤ Could be recognized in court if such a case arises for
judicial review by referencing the common law and local
professional code of ethics (10,11).

➤ Common law position - right to refuse medical treatment
(patient autonomy, informed decision-making, truth
telling, control over dying process)
Kassim J. AD for Med Treatment. (2015); Chan H. Regulating AD (2019); MMA Code of Med Ethics (2001),
MMC Consent for treatment (2019).

REGULATORY GUIDANCE
➤ MMC

➤ Code of Professional conduct
2019 - Clause 1.14

➤ Consent for Treatment 2013 -
Clause 18 provisions pertaining to
a written AD

➤ non-application of AD to illegal
activities like euthanasia and
TOP,

➤ validity and relevance of the AD
i n r e g a r d s t o c l i n i c a l
circumstances,

➤ the priority for professional
judgement in emergency
scenario;

➤ and the resolution to uncertain
situations.

PROFESSIONAL GUIDANCE ON
AD, W&W/ END-OF-LIFE CARE
➤ Resuscitation Training in MOH
2016

➤ ICU Management Protocols MOH
2019

➤ MMA: Code of Medical Ethics,
Clause 5 section II - one should
always take into consideration any
AD and the wishes of the family.

➤ AMM - Handbook of Palliative
Medicine

➤ MSQH - 5th/6th edition

➤ MBC - “Bioethics and COVID-19:
Guidance for Clinicians”

➤ National palliative care policy and
strategy plan 2019 - 2030

DIFFERENCES BETWEEN AD & ACP
➤ AD
➤ Legal framework

➤ Instructive

➤ Focuses on medical care,
health proxy (AD, living
will, POLST/MOLST)

➤ More western bioethics -
highly individualistic
stance
ACP
Some use ACP as an
umbrella to include AD/
living will etc

Focuses on values, wishes,
and relational aspects -
things that matter the
most, burdens/QoL willing
to accept, surrogate
appointment

Considers multicultural and
local context.

PRIOR WISHES - WHERE TO LOCATE
➤ Advance care plans - patient held record

➤ Personal resus plans - patient held record

➤ Goals of care discussions

➤ clinician notes on treatment options, resus plans, values
and wishes

➤ patient held records, medical records (incl EMR)

➤ Substituted judgement, verbally from close family

SURROGATE DECISION-
MAKER

IN THE EVENT OF INCAPACITATION
➤ • Partner 
• Family (parents, children, etc.) 
• Friends 
• Healthcare proxy / durable
power of attorney
• Guardian 
• Doctors caring for her 
• Doctors not caring for her 
• Ethics committee 
• Another committee 
• The community - appointed
surrogate 
• Judge

➤ Mental Health Act 2001: spouse,
children, parents, siblings

LEGAL/REGULATORY FRAMEWORK FOR SURROGATE DM
➤ No legal regulations

➤ The need of a statue on enduring power of attorney act that
allows the legal appointment of a healthcare proxy or surrogate
for medical decision-making in the event of a permanent
incapacitation.

➤ “Power of Attorney Act 1949” does not survive the incapacity of
the person.
➤ Next-of-kin socially & professionally recognised, not always the
best surrogates.

➤ good surrogate decision-maker needs to demonstrate
qualities such as decisional capability, availability, willingness
to serve, and familiarity with the patient’s preferences.

SUBSTITUTED JUDGEMENT
➤ A doctrine that that allows
a surrogate decision-maker
to attempt to establish,
with as much accuracy as
possible, what decision
an incompetent patient
would make if he or she
were competent to do so.

SUBSTITUTED JUDGEMENT
➤ Bene
fi
ts
➤ Further patient
autonomy (e.g. usually
right to refuse unwanted
care)

➤ Takes the burdens o
ff
families
Problems
Surrogates do not know

Patients change their
minds

Patients want family and
HCP to have input

Family may have bias or
COI/emotional burdens

Decision may con
fl
ict with
medical best interest
Shalowitz et al. Arch Intern Med. 2006;166(5):493-7. 2Fried et al. J Am Geriatr Soc 55:1007–1014, 2007.

DURING COVID-19
➤ Patient autonomy and shared decision-making may be
compromised. Patient and family wishes may not be met.
➤ Surrogate decision-making and discussion may also be
reduced to short family brie
fi
ngs or phone calls.

➤ Thus, healthcare providers have the duty to:

➤ maintain a decent level quality of care and humility;

➤ respect for persons, and

➤ understand the psychological/moral distresses

"Build relationship early, recognise emotions &values, build
consensus"
Alexia M. Torke, MD; G. Caleb Alexander, MD, MS; John Lantos, MD; Mark Siegler, MD

PROPOSED FRAMEWORK FOR "WHO DECIDES"
3. Who decides? If the patient has the capacity, it is crucial to confirm their previous wishes.
They are sometimes temporarily incapacitated secondary to the disease, e.g. hypoxic or
uremic. Thus, it is prudent to consult with families. Without any known or documented prior
wishes or preferences, physicians and surrogate decision-makers should rely on best
interest principle to decide on further interventions.
Who Decides?
Notes:
- Capacity: C - communicate a choice, U- understand the relevant information, R - reason
about treatment options, A - appreciate consequences.
- Prior wishes: through substituted judgement (what is known to family), advance care or
resuscitation plans, goals of care discussion notes.
- Best interests: promoted beneficence, which includes the considerations in survival,
prognosis, quality of life, and benefits/harms/burdens of care. It may also cover known values
and patient’s goals.
- MAC: Medical Advisory Committee; CEC: Clinical Ethics Committee
Patient with capacity?
No
Surrogate available?
Priori wishes known?
Use best interests
Yes
No
Yes
No
Yes Patient decides
Pursue guardianship or
consult hospital committees
(e.g. MAC, CEC or ethics
consult)
Follow prior wishes
within the legal framework

WHAT PRINCIPLES?

WHAT TO DECIDE?
Same clinical and ethical principles for COVID -19

and non-COVID-19 patients.

BEST INTEREST PRINCIPLE DURING
COVID-19 (MOH DRAFT)
➤ Without any known prior
wishes or preferences,
physicians and surrogate
decision-makers should rely
on BIP to decide on further
interventions.

➤ Best interest principles is a
promoted bene
fi
cence
framework, which includes the
considerations of survival,
prognosis, quality of life, and
bene
fi
ts/harms/burdens of
care.

➤ It may also cover known
values and patient’s goals.

BEST INTERESTS
➤ Bene
fi
t
➤ Promoted bene
fi
cence

➤ Calculation: survival,
bene
fi
t/harms, burden
of care, prognosis,
quality of life

➤ Could also cover known
values and patient’s
goals
Problems
Vague

Di
ffi
cult to do“calculations”

May be using values that
the patient does not hold

Does not consider what the
patient may consider e.g.
relational - burdening
family.

FUTILITY DEFINITIONS DEBATE
➤ Physiological futility

➤ Medical futility (physician goals)

➤ "When physicians conclude (either through personal experience,
experiences shared with colleagues, or consideration or reported empiric
data) that in the last 100 cases, a medical treatment has been useless, they
should regard that treatment as futile”. Quantitative

➤ Any treatment that merely preserves permanent unconsciousness or that
fails to end a patient’s total dependence on intensive medical care should
be regarded as non-bene
fi
cial, and therefore, futile.” Qualitative

➤ Unable to meet the goals patients/surrogates (patient goals)
Schneiderman, Jecker, Jonsen 1990

REFOCUSING FUTILITY
➤ “Since de
fi
nitions of futile care are value laden, universal
consensus on futile care is unlikely to be achieved.

➤ “…recommends a process-based approach to futility
determinations.”

➤ Patients are experts on their goals and preferences (i.e., values).

➤ Clinicians are experts on whether certain treatments will achieve
those goals and preferences.

AMA Council on Ethical and Judicial A
ff
airs, 1999.

ACTS VS OMISSIONS -
KILLING OR ALLOWING TO DIE

THOUGHT EXPERIMENT
➤ Aunt Mary Lim is dying of an incurable disease. Her family and her
doctors have agreed to withdraw her ventilator in the morning,
knowing that she will die quickly. But her greedy nephew Joe has
seen her will, and knows that he will be cut out of the inheritance
unless she dies before midnight. That evening, he sneaks into the
ICU and turns o
ff
her ventilator. The nephew performs exactly the
same act as the doctors would have done the following morning.

➤ Was the nephew's act defensible or permissible?

➤ How can we say that the nephew killed her, but the doctors merely
"allowed" her to die?
pollev.com —>huisiutan499

INTENDED VS MERELY
FORESEEN EFFECTS

ANDREW MCGEE 2014
➤ Does withdrawing LST cause death or
allow the patient to die?
Lights go off
Result
Flip light switch
Act
Flip vent switch Patient dies
Act
Provide ventilator
breaths
STOP this
action
Patient dies
Withdrawing LST is stopping an action, allowing the underlying
cause to proceed
Other examples:
Dialysis
Tube feedings
Pacemaker?
Deposit $10,000
Withdraw
$10,000 $0 Balance
Same same,

but not the
same?

DOUBLE EFFECT
➤ The doctrine (or principle) of double e
ff
ect is often
invoked to explain the permissibility of an action that
causes a serious harm, such as the death of a human
being, as a side e
ff
ect of promoting some good end.

The Doctrine of Double Effect
Good Effect:
Bad Effect:
Act: 1
1. Act - morally good or neutral
3
3. Bad effect merely foreseen
Give Morphine
Speed Death
Relieve Pain
2. Good effect is intended
2
4
x
4. Bad effect not the means to
the good effect
5. Proportionality - good must
outweigh the bad
5
DOCTRINE OF DOUBLE EFFECT
Thomas Aquinas
1.Act - morally good or
neutral

2.Good e
ff
ect is intended  
3.Bad e
ff
ect merely
foreseen  
4.Bad e
ff
ect not the means
to the good e
ff
ect  
5.Proportionality - good
must outweigh the bad

PROBLEMS WITH DOUBLE EFFECT
➤ “Moral-free zone”?

➤ “Morally responsible for all of
our actions - intended or not?

➤ Intentions are not always pure.

➤ “
􏰐
W h e n e v e r t h e r e i s
someone in a family who has
long been ill, and hopelessly
i l l , t h e re c o m e p a i n f u l
moments when all timidly,
secretly, at the bottom of their
hearts long for his death.
􏰓
” -
Anton Chekhov (1860-1904)

ACTS VS OMISSION -

WITHDRAWING &
WITHHOLDING

DIFFERENCES BETWEEN W&W?
➤ Ethical di
ff
erence? NO

➤ Beauchamp and Childress: “…the
distinction between W & W is
morally untenable and can be morally
dangerous.”, “Giving priority to
withholding over withdrawing
treatment can lead to over-treatment
in some cases.”

➤ Withdrawing - allows for a trial period.

➤ Emotional di
ff
erence? YES

➤ Feels di
ff
erent - important to
recognize as the sta
ff
s are dealing with
this emotion.

➤ Solution: bene
fi
ts/burdens assessment
along with patient’s preferences or best
interests (will treatment cause undue
burdens?)

➤ Honest and open conversation on
goals and values
Moral
courage

TO READ ON FUTILITY AND HOPE

WHEN? - TIMING AND
CIRCUMSTANCES

TIMING AND CIRCUMSTANCES
➤ COVID-19 pandemic

➤ medical uncertainties

➤ resources juggling and
limitations

➤ public health interests vs
individualised care

➤ Many patients with advanced
co-morbids - their goals and
values not previously explored.

➤ DNR during COVID-19

➤ Are families prepared?

➤ Are we prepared?

➤ How do ensure the process is
safe and just?
Individualised care
Compassionate care
Public health interest

HOW TO GO ABOUT?

STEPS TO ETHICAL PATHWAY OF DNR AND EOL
(MOH DRAFT)
ASSESS
DISCLOSE
DISCUSS
INFORM MANAGE
➤ Indications

➤ Level of
decision-
making

➤ Preconditi
ons
➤ Breaking
bad news

➤ Goals of
care
➤ Communic
ating
specific
decisions
➤ Respect and
dignity

➤ Consistent
comms

➤ Ceiling of care

➤ Provide Sx Mx

➤ Max comfort

➤ Compassionat
e care steps
RESOLVE
➤ Align
expectations
and goals

➤ Involve
consultants

➤ Seek MAC/
ethics

➤ Respect
family's need
for closure
➤ . TRIGGERS
Align expectations, maintain trust and allow some shared decision-making
As early as possible Once ready
}
}

TRIGGERS AND ASSESS INDICATIONS
➤ Triggers for decision and discussion:

➤ Poor response to current treatment

➤ Disease progression with severe major organ(s) dysfunctions/failure

➤ Repeated hospitalisations or ICU admissions

➤ Wishes to limit care explicitly expressed by the patient or family members.

➤ Assess for INDICATIONS of DNR or end-of-life care* (5,9):

➤ Physiological futility – Patient is facing imminent death

➤ Medical futility - Patient’s condition indicates CPR or LST would fail or not
sustain, e.g. in the setting of irreversible organ failure

➤ Quality of life – Patient is terminally ill, the burdens/risks of CPR or LST
outweigh the bene
fi
ts to the patient/ unable to achieve his goals/values.

➤ Burden/risks of CPR/LST are more than what patient/family is willing to
accept.
NHS Scotland 2010, ICU Mx Protocols 2019

ASSESS LEVEL OF DECISION-MAKING AND PRECONDITIONS
➤ Assess LEVEL of decision-making:

➤ Time permits: Team(s)-based consensus – with shared decision-
making approach.

➤ Time pressure: Decisions are desirably made by at least two
specialists (one from the primary team) and communicated
empathetically to family members.

➤ Assess that PRECONDITIONS are met:
➤ Adequate assessment by senior members or team/s consensus.

➤ Disclosure (breaking bad news/DIL) has been done.

➤ There is some family acceptance and expectations are aligned.

BREAKING BAD NEWS
➤ When?
➤ Grave diagnosis Clinical deterioration

➤ Presence of futility

➤ Imminent death

➤ Who?
➤ Specialists or senior medical o
ffi
cers

➤ Where?
➤ Private room at ED, general wards, ICU,
PICU

➤ How?
➤ Use SPIKES.
SPIKES

S = SETUP. Turn your phone off, so you are not
interrupted. Sit down, make eye contact, get ready to
engage with the patient/family. Prepare necessary
medical facts and be aware of your own emotions and
limitations. Introduce yourself and purpose of the
conversation.

P = PERCEPTION. Find out what the patient/
family knows about the medical situation. Eliciting their
concerns can help them feel heard and help you plan.
“What do you understand so far about…”, “What
concerns you the most?”

I = INVITATION. Find out how much information
the patient/family wants.

K = KNOWLEDGE. Use language that matches
the patient’s/family’s level of education, avoid jargon.
Give a warning that bad news is coming. Break
information into chunks. After giving the bad news,
provide a suitable pause (several seconds) to allow
information to sink in and to observe emotions and
reactions - resist the urge to say something.

E = EMPATHIZE & EXPLORE. Wait until
the patient/family are ready to talk. Use empathic
statements to name or acknowledge emotions. “I can see
that you are worried,” “Seeing your mom like this must be
painful for you.” You can help them hope for the best
while preparing for the worst. “You have done your best.”
Take the opportunity to explore goals and values. “Could
you tell me more about her?”, “What do you think she
would want?”, “What matters to you the most?”

S = SUMMARIZE AND STRATEGIZE.
Summarize the medical information and make plans for
next step, including further discussion on goals of care.
Check understanding and emotions, ask if there is
anything more they would like to know or you to help.


DISCUSSING GOALS OF CARE
➤ When?
➤ Presence of futility

➤ Disease worsening/progression

➤ Repeated hospitalisations or ICU admissions

➤ Routine discussion

➤ Who?
➤ Specialists/medical o
ffi
cers with patient/
family

➤ Where?
➤ Clinic, ED, general wards, ICU, PICU

➤ What?
➤ Disease trajectory, ceiling of care,
resuscitation orders, palliative and symptoms
management, and other wishes

➤ How?
➤ Use RE-MA-P
RE-MA-P

R = REFRAME. Assess patient’s/family’s
understanding of the illness and trajectory, if necessary, to
provide new information. Go for the “bigger picture” of the
illness, and by re- evaluating the whole situation – “re-
evaluate where we are”, justify the need to revise the GoC.

E = EXPECT EMOTION. Emotional cues may be
verbally explicit, or nonverbal such as crying. Reflective
statements that acknowledge emotion help the patient/family
feel heard. Questions asked right after the reframe are often
expressions of emotion rather than requests for information.

Check if the patient is ready to move to the next step. “Would
it be OK to talk about what this means for the future?”. Give
more time if the emotion does not dissipate.

M = MAP OUT PATIENT VALUES. Explore
patient’s values before discussing therapeutic choices. “To
find out the best plan, let’s talk about what is most important
to your xxx and you at this point.”. Use open-ended
questions. Another way is to ask about the patient’s life
outside the hospital or previously, to discuss meaningful and
unfinished goals.

A = ALIGN VALUES. Verbally reflect back what the
patient/family has expressed, including any doubts. Make a
hypothesis about what this means, and summarise these
reflections in an understanding of the patient’s values and
priorities.

An alignment has occurred when the patient/family responds
something like “That is exactly right— that’s what most
important.”

P = PROPOSE A PLAN. If the patient/family is
ready, propose a medical plan that one believes has the best
chance of maximizing the patient’s values and goals, using
both information about the patient’s values and the feasibility
of medical treatments to help achieve the goals. Take
account of what degree of burden and risk the patient/family
is willing to accept. For healthcare professionals use only.

CAN WE ALSO INFORM CRITICAL DECISIONS? YES
➤ Assent means to agree or to give permission.

➤ Written authorisation not required, but document clearly.

➤ Advantages of informed assent may include:

➤ Clinicians could ask family members to allow them to decide and to
alleviate any psychological burden

➤ Family can focus on other EOL aspects, including bidding farewell.

➤ Clinicians have greater obligations to provide careful
prognostication and respectful, open, and thoughtful
communication with family members.

➤ Esp when a therapy (e.g. CPR/LST) will not be bene
fi
cial, o
ff
ering that
option to withhold may cause more confusion, emotional burden, and
guilt. NHS Scotland 2010; Curtis J. Decisions on DNR during COVID-19

IMPLEMENT NECESSARY MANAGEMENT PLANS
➤ Respect for person & maintain pt’s dignity at all times.

➤ Maintain consistent & empathetic comms with family.

➤ Consider agreed plans from the goals of care/ceiling of care.

➤ Provide care that maximise comfort, e.g. adequate control of
pain and dyspnoea.

➤ Consider compassionate care steps - psychosocial and
spiritual support, allow visitation and saying goodbyes.

MAINTAIN QUALITY OF CARE AND CLINICAL GOVERNANCE
➤ Document all decisions and discussions.

➤ Inform team(s) of plans, ensure continuity of plans and
communication.

➤ Debrief teams whenever possible.

➤ M&M audits or reviews

➤ Regular review of the processes and work
fl
ows according to
the latest evidence and feedback

WHEN IN DISAGREEMENT
➤ To align team(s)-family expectations (again) and agree on common goals.

➤ To involve consultants or HOD to arbitrate

➤ To seek administrative, medical advisory committee, or ethics  
consultation/facilitation

➤ To respect the family's need for closure by assuring that maximum e
ff
ort and comfort have
been provided.

“Clinicians must stay emotionally aligned with distressed surrogates, o
ff
ering them emotional
and logistical support while resisting the temptation to continue debating the merits of the
clinical decision not to o
ff
er CPR.”

Robinson et al. Hastings Cent Rep. 2017;47(1):10-19.; Solomon MZ. 2017;47(1):26-27.


WHAT IF WE DISAGREE?

WHEN DO YOU KNOW IT IS A MORAL DILEMMA?
➤ “Features of clinical ethics dilemmas:

➤ All the choices are bad 
All the options are legal 
Reasonable people disagree 
Fundamental principles con
fl
ict

➤ A choice must be made.”
- Dr. John Lantos’ lecture “What is Clinical Ethics?”, September 2019, Kansas City

FRAMEWORK OR METHODS OF CLINICAL ETHICS
➤ Principlism
➤ Respect for autonomy,
bene
fi
cence, non-
male
fi
cence, social
justice.

➤ Casuistry
➤ Narrative ethics
➤ Feminist ethics
➤ Microethics
Beauchamp T, 2019, Johnsen A et al, 2015, Montello M, 2014, Tong R, 1995, Truog R 2015

TO CONNECT
➤ How are you?

➤ How are you feeling?

➤ I am sorry to say that …

➤ What matters to you the most
now?

➤ Could you tell me more?

➤ Yes, I see. Hmm.

➤ Is that what he would have
wanted?

➤ <Silence>

➤ <Silence>
"If they are to be fully present to the patient, health
care professionals must prepare through re
fl
ection on
their own sense of transcendence, meaning, purpose,
call to service, and connectedness to others."

MATTERING MAP - FIND THE STORY
➤ “People occupy the mattering
map… The map is…a projection of
its inhabitants’ perceptions. A
person’s location on it is
determined by what matters to
him, matters overwhelmingly…”

➤ “One and the same person can
appear di
ff
erently when viewed
from di
ff
erent positions, making
interterritorial communication
sometimes di
ffi
cult”

➤ The Mind-Body Problem, Rebecca
Goldstein, 1983
Dr. Martha Montello, Narrative Ethics Lecture, September 2019

SOLVE
➤ “To
fi
nd the correct
answer to a problem

➤ To settle a question
conclusively

➤ And to do so with
precision”
Dr. Martha Montello, Narrative Ethics Lecture, Sep 2019
Harvard Yard, May 2019

RESOLVE
➤ “Latin: Unfasten, loosen,
release
➤ To break up or disintegrate.

➤ To clear away or dispel
(e.g. doubts, fears)

➤ Music: To progress from a
dissonance to a
consonance.”
Dr. Martha Montello, Narrative Ethics Lecture, September 2019
MFA, Night View, Boston, September 2018 For healthcare professionals use only.

A SEAT AT THE TABLE (PART 1)
➤ ….After nine grueling rounds, the health care team won the
battle in a victory that bore a frightening resemblance to an
ultimatum, and Ms. S.’s sons agreed to sign a DNR order for
their 70-year old mother. I chalked up the nauseated feeling in
the pit of my stomach to my inexperience in the
fi
eld. We had
stripped this family of a choice and left them with no option but
palliative care.

➤ “Medicine is not just about treating illnesses,” my attending
assured me. “It can often involve appreciating the necessity to
say no.” Ms. S. died the following afternoon."
Lisa Caulley, NEJM 2018

A SEAT AT THE TABLE (PART 2)
➤ "I was visited by the haunting memory of her case 2 years later. I rushed
quickly to
fi
nd the respiratory therapist providing PPV to Mr. M.

➤ He was a 79-year-old man with a history of ESRF, coronary artery
disease, and dementia. He had been admitted 2 days earlier with signs
of pulmonary edema. Despite appropriate treatment, he had been found
by his nurse somnolent and tachypneic, and she had contacted the
nephrology and ICU teams for urgent assessment.

➤ Chaos swirled around Mr. M.’s bed, as frantic measures were taken to
support his oxygen needs. His expression was tired and vacant, his
bloated frame stretched by the mounting
fl
uid in his tissues.

➤ Transferring Mr. M. to the ICU for invasive life-sustaining therapy
would be a temporary solution for the irreversible damage from his
long-standing disease."

➤ "While his son sat ashen-faced in the hallway, Mr. M.’s wife stood anxiously
over her husband, whispering promises of his imminent recovery and
reminding him of his enduring strength for
fi
ghting his disease.

➤ Anticipating a di
ffi
cult road ahead, I called my senior resident, and we
huddled in a nearby conference room with Ms. M. and her son to discuss
the next steps in his care.

➤ My senior resident apologized for the late hour and the hastened
discussion before gently relaying the facts of Mr. M.’s critical status and his
options for life-sustaining treatments and reminding his family of his poor
prognosis given his chronic diseases.

➤ Through tears, Ms. M. asked the same questions I had by now heard many
family members ask: “Why can’t we start dialysis now?,” “Why can’t we
continue breathing for him?” And we gave her the same answer: “There’s
just no point.”

➤ "After a moment’s pause, my senior resident turned to the wife and
son and said, “Tell me about Mr. M.” It was such a simple question,
yet it empowered the family, opening the door to a wealth of
information critical to understanding the man who was awaiting
someone else’s decision about his fate.

➤ M. family welcomed the opportunity to allow Mr. M.’s past a seat at
the table as we discussed his future.

➤ Ms. M. laughed as she reminisced about his obsessions with
fi
shing
and European cars. His son described their adventurous trips through
Italy.

➤ Ms. M. and her son smiled sadly at one another, as if suddenly
recognizing how much Mr. M. had changed over the past few
years."

➤ "My senior resident described the reasons to avoid invasive treatments
at this stage of Mr. M.’s disease, discussed the course of comfort
measures, and asked whether that was what Mr. M. would want.

➤ Ms. M. and her son quietly digested this information, and with tears
streaming down their faces, they nodded in agreement. My familiar
nauseated feeling was a reminder that medicine is not just about
treating illnesses — it can often involve appreciating the necessity to
say “no,” while allowing patients the dignity to say “yes.”

➤ Mr. M. died the following afternoon."

CONCLUSION
➤ Rooms for growth in terms of end-of-life decision-
making and care in Malaysia.

➤ During the COVID-19 crisis, it's important to follow the
rights steps and adequate level of decision-making.

➤ Duty to care, and also to plan. Support each other.

➤ Listen, engage, and connect with patient/family.

➤ Medical humility - acknowledge limitations,
uncertainties. Consult and seek help.

THE CHAPTER ON DNR AND END-OF-LIFE (MOH DRAFTS)

SIMPLE ALGORITHM AND GUIDE (MOH DRAFT)
Flowchart on DNR and EOL Communication Tool Bundle

THE CHAPTER ON PALLIATIVE CARE
& COMPASSIONATE CARE

ETHICAL DILEMMA, DISPUTES OR
LEGAL CONCERNS
➤ Legal and professional ethics
➤ Cawangan Medico Legal, Bhg Amalan Perubatan -
denailham@gmail.com, fareed@moh.gov.my

➤ Malaysian Medical Council - Ethics and law unit
drfaizirosli@mmc.gov.my

➤ Bioethics and clinical ethics
➤ Hospital Ethics Support Service (HESS), Hospital
Ampang - Ethics Case or Non-Case Consultation
https://tinyurl.com/HAethicsconsult

➤ M e d i c a l E t h i c s a n d L a w U n i t , U i T M .
lydia_aiseah@uitm.edu.my, Clinical Ethics Consultation
Service, UiTM drmark.medethics@gmail.com

➤ Clinical Ethics Malaysia (CEM) COVID-19 Online
Consultation Service by UM/UiTM/IJN: http://
tinyurl.com/CEMConsultForm

➤ HRPB, QE2, HSM, Selayang
Whatsapp : 012-9586682
OR Phone call to 012-9586
OR email to:
ethicsampang@gmail.com
For any ethical dilemma or iss
please reach us by:
And then, fill up the referral fo
https://tinyurl.com/HAethicsco
We will check for incoming ref
3-5 pm every day.
If an urgent consult is needed
please do not hesitate to anyo
us:
Dr.Tan Hui Siu ; 012 - 9586
To help physicians, patients, and
relatives identify and analyze the
nature of value uncertainty or conflict
that underlies a consultation.
To facilitate the resolution of conflicts
among parties in a respectful
atmosphere with attention to the
interests, rights, and responsibilities of
all those involved.
To promote practices consistent with
ethical norms and standards to create a
working environment that is congruent
with good ethical norms.
To inform institutional efforts at policy
development and quality improvement
by identifying and deliberating on the
causes of ethical concerns.
To increase ethics knowledge and skills
among healthcare workers in order to
enhance the ethical practices in the
delivery of healthcare.
To empower and support healthcare
personnel through the process of ethics
HESS Team

CONVERSATION THAT MATTERS
➤ https://
theconversationproject.org/

➤ “The Conversation Project
emphasizes having a
conversation on values —
what matters to you, not
what‘s the matter with you.”

Ellen Goodman, Co-Founder & Director
➤ Thank you

➤ kaeytan@gmail.com

➤ ethicsampang@gmail.com
On death, for children

kaeytan@gmail.com

ethicsampang@gmail.com
THANK YOU

Ethics, DNR & end-of-life in the era of COVID-19

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