Overview of Palliative care

~Disease should simply become a discrete but dignified

exit of a peaceful person from a helpful society without
pain or suffering and ultimately without fear - Phillipe
Aries, 1977 The Hour of Our Death
~I place life before intervention. I look at life in its entity,
even in its brevity. I dont want to be seen as Dr. Death; I
want to be seen as Dr. Quality. I cannot always prevent
death. I can influence quality. I can help make the pain go
away. I can help make the symptoms better. I can help
them be with their families and help them do the things
that they want to do. Everything that makes up a persons
life, we try to incorporate to make life as good as possible
while it lasts.- Divya-Devi Josni M.D.
PALLIATIVE CARE
Synonymous with active care
NOT an end of life issue
Associated with chronic or terminal illness
Why do we do palliative care? Dignify exit and
living to that
We dont like to be identified as doctor death but
as doctor quality
The patient is seeking for compassion and
kindness
Palliative care: to relieve, alleviate, to cloak,
mask or shield
HISTORICAL PERSPECTIVE:
House of refuge for the sick, needy and dying
during the Roman times
Sanctuaries became known as hospital, hospice,
hotel, hostel
Hospices were to be found along pilgrim routes
as place of refuge
Medieval hospice care under religious orders of
the Benedictines
MODERN MOVEMENT
1947: Cicely Saunders met David Tasma

I only want what is in your mind and in

your heart.

Ill be a window in your home.

1967: St. Christophers Hospice was established
You matter because you are you; you matter to the last
moment of your life and we will do all we can not only to
help you die peacefully, but to live until you die.- Dame
Cicely Saunders
World Health organization (WHO):
Palliative care is a part of patients with active,
progressive, far-advanced disease for whom the
focus is the relief and prevention of suffering and
the quality of life.
Doctors must fulfil a patients wish to life- prolonging
treatment and if no living will exists, they must presume
that treatment should be given unless the patient would
deem their life to be intolerable, the high court has ruled.
Active disease
Progressive disease
Far advanced disease
Quality of Life (QOL)
Person-oriented
Not primarily concerned with Life prolongation
Not Primarily Concerned with Producing Long Term
Disease Remission
Holistic
Multidisciplinary or Interprofessional Approach

Quality of Whatever Life Remains for the Patient

Aims of Palliative care:
1. Relief of symptoms

Most common is PAIN

Medications are given on a PRN basis?

2. Maintenance of the best quality of life within
the limitations of their illness
3. Support the family before and after the death of
the patient

Assist the family, Care giver fatigue

Palliative Medicine
Study and management of patients with active,
progressive, far-advanced disease for whom the
prognosis is limited and the focus of care is the
quality of life
It is a medical component of PALLIATIVE CARE
WHO: Palliative care is the active total care of patients
whose disease is not responsive to curative treatment.
Control of pain, other symptoms, psychological, social and
spiritual problems is paramount.
Objectives:

Affirms life and regards dying as a normal

process

Neither hastens nor postpones death

Provides relief from pain and other distressing

symptoms

Offers a support system to help the family

cope during the patients illness
PATIENT POPULATION:
Malignant cases:
28000 CA deaths/ 1M
2400- Pain
1300- dyspnea
Functional impairment occurs 1 year <death
increases within 5 months
Cancer-predictable trajectory of health
impairment
Non-malignant cases
6900 deaths/1M
35% of cases will have functional impairment
Gradual loss of functional activity but with
episodic abrupt deterioration with partial recovery
*The difference between malignant and noon-malignant
cases is the course illness. Malignant cases are easier to
predict like in Stage 4 breast cancer, but for nonmalignant cases, it is harder to predict and have more
serious consequences like in cases of dilated
cardiomyopathy .
THE NEED FOR PALLIATIEV CARE
52M people die each year
It is estimated that tens of millions of people die
with unrelieved suffering
About five million people die of cancer each year,
to which can be added the numbers of patients
dying with AIDS and other diseases who might
benefit from palliative care
That many people die with unnecessary or
untreated suffering has been well documented in
many studies and published in hundreds of
scientific papers and reports
In developed and developing countries alike,
people are living and dying in

Unrelieved pain

With uncontrolled physical symptoms

With unresolved psychosocial and

spiritual problems

In fear and loneliness

This is the suffering that could be helped or

prevented with PC
The WHO (1900) AND the Barcelona (1996)
declarations both called for palliative care to be
included in every countrys health services
Ceiling dose: drug wont work even in higher dose
Ceiling of drugs
Paracetamol: 4,000mg
Ketorolac: 140mg
Tramadol, Opioid and Morphine: No ceiling dose
More prominent side effect of morphine and opioid:
Constipation (therefore lactulose must be given)
Other ADR: Pruritus
Palliative Care Unit
It is a special unit with the ff goals:
1. Good communication- disclosure
2. Decision making/ goal setting
3. Mgmt of disease related complications
4. Symptom control
5. Psychosocial and spiritual care
6. Coordination of care/opd/home
7. Terminal care
Physical structure
In patient service
Outpatient service/ ambulatory care/ day care
Continuity of care at home and community

referred to the specialized palliative care

unit.

If the patient prefers to be treated at

home, the palliative care unit coordinates
with the basic or home care palliative
team to provide day care facilities.

There should be no restrictions provided

done legally in prescribing drugs to
relieve pain. Re: opioids.

The palliative care service should

demonstrate multi professional and
interdisciplinary team working.

The palliative care team assigned in the

community must work closely with the
palliative care unit of the hospital.

The palliative care team should

demonstrate the application of
recognized quality assurance programs.
The causes of suffering:

Palliative Medicine Program Organization:

Total Suffering

Minimum requirements for Palliative care:

A. Fundamental principles

Palliative care should be integrated as

essential facts of health care for patients with
advanced or chronic illness

Palliative care should be available round the

clock, seven days a week, at a basic level
through general health care services
(community level) and at an expert level
(hospital based unit).
B. Clinical issues: The objectives of Palliative
care services include:
The optimization of QOL and of dignity in illness
and dying
Recognizing the patients choice and
autonomy
Recognizing the patients need in any care
setting
Recognizing the needs of family members
during the illness for bereavement support
How to achieve these?

Patient with distressing symptomswhich

cannot be controlled at home should be

Aspects of Suffering and the components of

Palliative care
Suffering
Care
Pain
+ Other Physical Symptoms
+ Psychological problems
+ Social difficulties
+ Cultural Factors
+ Spiritual Concerns

Treatment of Pain
& Other Physical Symptoms
& Psychological problems
& Social difficulties
& Cultural Factors
& Spiritual Concerns

=Total Suffering

= Multidisciplinary
Palliative Care (Total Care)

Principles of Palliative care:

1. Attitude to care (Most important)

2.

3.

This is the one that will be remembered, not your

diplomas, not your credentials

Caring attitude

Commitment

Considerations of individuality

Cultural considerations

Consent ask patient if they want to be cared

in the hospital or at home

Choice of Site of care

Communication

Communication Amongst Health care

Professionals

Communication with patients and families

They say doctors are not good in communicating
o
Relatives will say that the doctors should
not tell the patient he/she has cancer, But
according to Dras study...

70% of patients want to be told that

they have Tumor

30% are undecided

The care

Clinical context: Appropriate treatment

Comprehensive and Multidisciplinary

Care Excellence

Consistent

Coordinated

Continuity

Crisis Prevention

Caregiver Support

Continued Reassessment

Unrealistic expectation of disease

response

Patient-family disagreement about

treatment options
Social factors

Ethnic minorities, language barriers

Rural communities

Poor or underprivileged
Access factors

High cost of care, treatments and

medications in developing countries

No government subsidies for health care

in developing countries

No physician reimbursement or
prohibiting the use of opoids

WHEN SHOULD PALLIATIVE CARE BE INVOLVED?

Timely referrals

This is important because palliative care

is an active care
Close time of diagnosis
Unrelieved pain and/or symptoms
Comfort rather than cure
Symptoms vs. diagnosis
Emotional, spiritual and social support
To improve the quality of life

Models of Patient Care

Traditional model

Responsibilities of the Physicians and Nurses

Physician
Psychosocial/ Spiritual care
Diagnosis

Assess family

Extent of disease

Identify resources

Illness course

Emotional needs

Resuscitation status

Spiritual needs

Complication risk

Cultural needs

Main symptoms

Family concerns

New model

Discharge date
Medications and prognosis
Barriers to Palliative Care:
Physician:

Later referral

Poor prognostication

Lacks communication skills to

address end of life issues

Reluctant to refer

Doesnt understand or believe in

PC

Loss of control, loss of income

Lack of institutional standards for

end-of-life care
Patient

Believe prognosis better than what they

are told

Why Palliative Care and Cancer?

Pain is significant factor: >70% of patients
with cancer have pain
Pain relief is a basic human right
Adherence to principles of pain management will
allow relief in 80%
Effective treatment is nearly always available
Cancer treatments often causes pain
Pain influences physical, psychological, social
well-being
4 Cardinal Principles
1. Patient autonomy (respect the patient as a
person)
2. Beneficence (do good)
3. Nonmaleficence (minimize harm)
4. Justice (fair use of available resources)
Applied against a background of respect for life and
acceptance of death as a natural process.
Gold standard for Palliative Care
Optimize QOL for seriously ill people
Patients admitted to the unit are those who are
chronically ill with at least a life expectancy of >3
months
Less than 1 month are considered to be at the
terminal phase of illness- end of life.

Composition of the Multiprofessional team

A. Community based:

Physician that may include clerks, interns,

residents on rotation

Nurse that may include clinical

instructors, student nurses or regular
staff nurses

Social worker

Psychologists

Pastoral care

Administrative/NGO, GO support

Local government
B. Hospital based:

A team captain or doctor trained or

knowledgeable in palliative care

Doctors from various disciplines

Social service

Psychology/ psychiatry

Nutritional/dietician support

Physical therapy

Occupational therapy

Religious (Pastoral) care may cover all

representatives in various religions

Pharmacy

Administrative support
To cure sometimes, to relieve often, to comfort always
this is our work. This is the first and great commandment.
And the second is like unto it- Thou shalt treat thy patient
as thou wouldst thyself be treated.
Empathy vs Sympathy
Empathized: More objective, level headed
Sympathized: You cry and embrace just to show
some kind of support
Thank you and never forget the therapeutic triad of
EMPATHY, WARMTH, and PURITY at heart.
THE WINDING ROAD... Truth telling, a right?
Why is bad news disclosure so hard?
Because it is a life-altering event
Vital signs and ordinary laboratory results with
abnormal values should be delivered and
interpreted carefully
BAD NEWS DISCLOSURE
Reflects a glaring gap in the training of doctors

Something so often encountered in

practice

Yet hardly taught purposively in training

Most medical students do not relish the

thought of giving bad news to patients

Experienced Physicians are so concerned

with specifics of giving bad news
An experience of vulnerability
It puts to fore who we are as persons

To tell the truth, what is the truth?

To acknowledge feelings
o
Of the patient wanting to know the truth
o
Our very own virtues of sincerity,
accuracy, and authenticity
What is the TRUTH?
Related to the doctrines of informed consent
Objective, subjective and relational aspects of the
patient, the doctor, and the family
Because...
It is bad news
No other circumstance in the doctor-patient
relationship challenges

The patients trust in his doctor

And the doctors trust in himself
The same Physician takes charge from
initial contact to definitive treatment

BAD NEWS
What makes news bad?

Your test is positive. Good news or Bad news?

Bad news, just like beauty is in the eye of the
beholder Dra. Jacinto
Situations in holding the truth:
1. Medical emergencies
2. Mentally capacitated
3. Therapeutic privilege
Degrees of disclosure depends on what the
patient wants

The Art of Bad News Disclosure

Who is responsible for breaking the news?
Who must be present during the disclosure?
How can physicians manage the stress?
Bad News Disclosure
Requires physician training in
1. Comunication
2. Sensitivity
3. Handling of emotions:

Self

Patient

Family/ decision makers

BAD NEWS INSTANCES
Illness progression or recurrences
Positive diagnosis for an illness
Failed surgical procedure
Birth of a handicapped child
End of life directives
Medical error
~Bad news no matter how its broken remains bad. The
only option left is to communicate it with the least amount
of trauma
Preparing for Breaking Bad News:
Block off sufficient time
Arrange for an appropriate setting

Privacy

Confidentiality

Space for emotional reactions

First Principle: The best time to prepare for bad
news disclosure is before you need to do it

Tips for the First Principle:

Know:

The patient: preferences, likes/dislikes

MASTER WHAT IS INSIDE THE CHART

The message

Yourself
a. Know the patient

What is important to him?

What are his desires and beliefs?

What is his cultural background? Value

system?

Ask about his preference regarding depth

of the disclosure. How much does he
want to know? What does he know to
start with?
b. Know the message

Diagnosis?

Treatment options?

Failed procedure?
Use simple, understandable language
Avoid looking at the chart:

Study the case

Review the history and laboratory data

Second Principle: Begin with the end in mind. The

best form of patient care is to (sincerely) care
about the patient.

Tips for the second...

Identify the issue and communicate this clearly to
the patient
Anticipate the bad news disclosure process
Outline diagnostic and/or treatment options
(watch for patients reactions)
Gather agreement or consensus
Who breaks the bad news?
The primary attendingassumed to have
established a relationship with the patient
Other members of the treatment team---whenever
relevant
Who receives the bad news?
The patient
Significant others

Life partner

Decision makers
Guardian
Interpreter
~spare the patient or spare the family?
Third Principle: Every patient has a right to hope

Tips for the Third Principle:

Be

Honest

Realistic

Hopeful
Empathize

If I were the patient, then what?

How to conduct the actual disclosure
Sit at eye level, preferably at a 45* angle from the
patient
Avoid having physical barriers
Re-establish rapport and set the tone

We are here to discuss the treatment

plans for . . . .
The best way to do a disclosure is when THERE ARE NO
OBSTRUCTIONS, sit in a 45 degree angle
How to conduct the actual disclosure
Speak

Slowly

Clearly
Listen

Silence

Questions
Various modalities of language

PHASES OF DISCLOSURE:
A. Assessment
B. Disclosure
C. Assimilate
PHASE I- Assessment
Establish rapport
State your willingness to discuss the problem

I would be very willing to sit down with

you and your family to talk about this.

What do you think is the problem?

Why do you think its cancer?

PHASE II -Disclosure
1. Tailor made information
2. Give information for an appropriate rate
a. Watch the patients response
b. How much information can the patient
take?
c. Leave room for denial
3. Avoid telling patients about duration of life
~In 5 years, 45% of people with this illness
remain alive and well
4. Clarify reasons for feelings-upset, anger, sadness
~ I see you are upset. Are you ok talking
about it?
You seem angry. There are many reasons for
feeling that way now.
5.

6.
7.
8.

Avoid premature reassurance

~ It will be wrong for me to tell you that
everything will be ok. But there is some reason to
be hopeful. There is a best case scenario. .
Radiation may slow the growth of cancer, but not
cure it. Yet, it gives you time, more time, to be
with family or work.
Do not end abruptly
Patiently sit through the emotional reactions
~The illness is not my fault
Solicit questions and clarification

PHASE III- Assimilation

1. Summarize the main points of agreement
2. Offer additional sources of information

second opinion

Internet
1. Give them time

It might be good for the family

to think about these options. We can
finalize the discussion this afternoon.
Feel free to call me for any
questions.
2.
Schedule a follow up appointment and give
contact details
~Every patient has the right to hope: Partial
disclosure, evasive answers, half truths and omissions
create false hopes
And every doctor has the special task: to bring
them to a middle ground, (Where there are no
absolutes, and) Where truth can coexist with hope-The Anatomy of Hope by Jerome Groopman, MD
Black: From ppt
Blue: Additional notes from Dra
Orange: quotes from ppt
NT: Hope Cordoviz Warren