PRELUDE

Basic Certificate in Palliative Care

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(NPTEL & NAPCAIM)

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NAPCAIM

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NAPCAIM
 NAPCAIM aims to alleviate the sufferings of the patients
through integration of Modern Medicine with AYUSH.
Training of Healthcare professionals of both streams, along

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with supporting volunteers, social workers & nurses is of
utmost importance, hence

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NAPCAIM
 During COVID pandemic, online training was only feasible.
Taking advantage of technology, the whole training is planned
“Online & Distance Learning” through Web Portal. Though it

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is an “Online” program, there is an ample opportunity for
one to one interaction with the faculty through distance
learning.
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 We have galaxy of expert faculty in pain management,
palliative care & AYUSH on our panel.
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IIDL
 we started the unique upgradable distance learning courses;
the first step of which is “Foundation Course in
Palliative Care”, for one & all under the banner of

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International Institute of Distance Learning, a unit
of NAPCAIM in October 2020. It aims to bring

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together the palliative care practices prevailing in
AYUSH & Allopathy thus establishing integration
between them.
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Courses by IIDL, NAPCAIM
1. Certificate Course in Palliative Care ………………… Duration
3 Months

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2. Fellowship in Palliative Care ……………………………
Duration 6 Months

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3. Post-Graduate Diploma in Palliative Care ……….. Duration 1
Year
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4. Master’s Course in Palliative Care ………………….. Duration
1 Year

 (All these courses are upgradable)

 Who can do this course?

“Anyone with

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attitude to learn &
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practice Palliative
Care” can apply for
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this course.
 How it is beneficial to you?

Palliative Care is an integral part

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of any clinical practice. It is a
multispecialty stream requiring
co-ordination and support from
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not only specialists but also
social workers, volunteers,
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nurses & alternate therapists.
Hence, learning palliative care
widens your scope of practice,
wherever you are!
BASIC CERTIFICATE IN PALLIATIVE CARE
OUTLINE

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Dr GEETA JOSHI

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Chief Executive Officer
Community Oncology Centre & Hospice
Ahmadabad

NDr YASHAVANT JOSHI

DIRECTOR
Unnat Academy of Human Excellence
Vadodara
National Association of Palliative Care
for
AYUSH & Integrative Medicine

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 Why NAPCAIM???

To create Awareness of about Health &

Well-being!

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To reach out to all, practicing Palliative
Care

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To highlight the practices of Palliative Care
in Resource-poor Settings

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To involve ALL…. Including Communities.
To promote Training, Research & Practices

Now let’s go out and create opportunities for ALL ...!

International Institute of Distance Learning

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International Institute of Distance Learning Name of the Course Duration
NAPCAIM Training Division Orientation in Palliative Care Few Hours
to 1 Day
 Online Courses… Few Hours to 1 Year Volunteers’ Training in Palliative 2.5 Days
Care (Offline)
 Self Learning… Certificate Course in Palliative 3 Months

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Care (CCPC) - UPGRADABLE
Through Google Classroom Fellowship in Palliative Care 6 Months
(FCP) - UPGRADABLE
 Opportunity for “Hands On” Training

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Post Graduate Diploma in 12 Months
Palliative Care
(PGDPC) – For Medicos
 Benefits for NAPCAIM Member UPGRADABLE

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 Conferences & Workshops
 Enhance your practices
Master’s Course in Palliative Care
(MCPC) - UPGRADABLE
UG Diploma in Integrative
12 Months

12 Months
Palliative Care
(UGDIPC) - UPGRADABLE
Visit Website: www.napcaim.com PG Diploma in Integrative 12 Months
Palliative Care (PGDIPC)
 IIDL, NAPCAIM
National Program on Technology Enhanced Learning, IIT Kanpur
Foundation Certificate Course in Palliative Care – Jan 2023

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Enrolled Registered Certified

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N 1301 404 367 95 214 53 5

Provision for Internship…. Offline …. With Stipend

 International Institute of Distance Learning
NAPCAIM Training Division
Offline & NPTEL Course

Offline Courses Duration NPTEL “Swayam” Courses Duration

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Palliative and Geriatric Aide Course 6 Months Foundation Certificate Course in 12 Weeks
– Offline Palliative Care – Rerun in Jan 2024
(Offered by Kosish – The Hospice)

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Farishtey (A course on death & 12 Months Basic Certificate in Palliative Care – 12 Weeks
dying) - Offline Upgraded – From Jan 2024
(Offered by Koshish –The Hospice)
“Hands On” Training and
NPTEL Internship at
Community Oncology Centre
N 4 to 8 Weeks

Ahmedabad
BASIC CERTIFICATE IN PALLIATIVE CARE
Please NOTE...
1. DOMAIN: Palliative Care (Medical Domain of NPTEL)
2. DURATION: 12 Weeks starting from January 2024

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3. FACULTY: Expert Faculty from the Domains of Palliative Care
4. COURSE: Elective (Certificate)

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5. AUDIENCE: Helpful for Medical Professionals, Paramedical Staff, Volunteers, Care
Givers and Anyone interested in Health & Well-being
6. METHODOLOGY: Under SWAYAM PORTAL (Self Learning). Delivered Though
Google Class Room N
7. CREDIT HOURS: Anyone Who Registers and Passes All the Twelve Assignments will
Get a CERTIFICATE with 32 Credit Hours
 BASIC CERTIFICATE IN PALLIATIVE CARE
Please REMEMBER...

1. This Course is for EVERYONE who is interested to learn about Palliative Care. Even a
family member should know about it because, Palliative Care is about TOTAL CARE. It

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includes important aspects like Social, Cultural, Psychological, Spirituals and Community
Participation. Of course, it covers the aspects of Pain Management & Symptoms

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Management also.
2. The delivery of the Course Lectures is SIMPLE so that, even a layperson can understand
the contents.
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3. In Palliative Care, even a Care Giver or a Family Member has the RIGHTS to take part
in the whole process of Diagnosis, Treatment till the END!
 WEEK: I (02 CREDIT )
INTRODUCTION TO PALLIATI CARE
 Prelude
 Prologue: Basic Certificate in Palliative Care

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 Introductory Dialogue for Week: 1
 Basics of Palliative Care

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 Community Participation
 Communication in Palliative Care Part: I
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 Communication in Palliative Care Part: II

Reference Material and Assignment in Each Week

 WEEK: II (04 CREDIT HOURS)
ADVANCE COMMUNICATION SKILL
 Introductory Dialogue for Week: 2
 What is Active Listening?

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 Are You Really Listening?
 Active Listening Skills

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 Communication Skills for Health Professionals
 Communication Competency for Health Professionals
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 Talking About Death!

Reference Material and Assignment in Each Week

 WEEK: III (02 CREDIT HOURS)
PSYCHOLOGICAL DISTRESS
 Introductory Dialogue for Week: 3
 Psychological Aspects in PC

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 What is Psychological Distress?
 Types of Psychological Distress

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 Kessler Psychological Distress Scale
 Generalized Anxiety Disorder (GAD)
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 Guilt & Regret

Reference Material and Assignment in Each Week

 WEEK: IV (02 CREDIT HOURS)
SOCIO-CULTURAL & SPIRITUAL ISSUES

 Introductory Dialogue for Week: 4

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 Cultural Aspects in Palliative Care
 Spirituality (FAQs)

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 Spiritual Distress
 Ways to Lead Spiritual Life!
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Reference Material and Assignment in Each Week
 WEEK: V (02 DREDIT HOURS)
STRESS AND BURNOUT MANAGEMENT
 Introductory Dialogue for Week: 5
 What is Stress & Burnout

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 Some Tips to Manage Stress
 Burnout in Health Care Professionals

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 Avoiding Burnout in Health Care Professionals
 Volunteers to Prevent Burnout!
 Self Care! N
Reference Material and Assignment in Each Week
 WEEK: VI (04 CREDIT HOURS)
POST-DEATH PSYCHOLOGICAL SUPPORT
 Introductory Dialogue forWeek: 6
 Ethical Aspects of End of Life

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 Impact of Bereavement on Family
 Kubler-Ross Model

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 Theoretical Models of Grief & Bereavement
 Psychology of Grief & Bereavement
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 Management of Grief & Bereavement

Reference Material and Assignment in Each Week

 WEEK: VII (02 CREDIT HOURS)
PAIN MANAGEMENT WITH OPIOIDS & ADJUVANT DRUGS

 Introductory Dialogue for Week: 7

 Metastatic Bone Pain Management

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 How to Prescribe ENDs?

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 Safe Use of ENDs
 Neuropathic Pain & Its Management
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 Introduction to Intervention Pain Management

Reference Material and Assignment in Each Week

 WEEK: VIII (04 CREDIT HOURS)
SYMPTOMS MANAGEMENT

 Introductory Dialogue for Week: 8

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 Gastrointestinal Symptoms
 Respiratory Symptoms Management

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 Delirium and Dementia
 Emergencies in Palliative Medicine
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 Recent Advances in Nausea & Vomiting

Reference Material and Assignment in Each Week

 WEEK: IX (02 CREDTIT HOURS)
ADVANCE NURSING CARE

 Introductory Dialogue for Week: 9

 Nursing Care Plans: Case Scenario

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 Bladder & Bowel Care

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 Stoma Care Part: I
 Stoma Care Part: II

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 Skin Care in Colostomy

Reference Material and Assignment in Each Week

 WEEK: X (04 CREDIT HOURS)
CARE OF DYING

 Introductory Dialogue for Week: 10

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 Importance of Prognostication
 Diagnosing the Dying!

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 Facing Death: How to Help?
 Subcutaneous Route
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Reference Material and Assignment in Each Week
 WEEK: XI (02 CREDIT HOURS)
GOVERNMENT SCHEMES FOR PALLIATIVE CARE

 Introductory Dialogue for Week: 11

 National Health Mission (NHM)

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 Aushman Bharat

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 Government Schemes for Palliative Care
 NDPS Rules 2015
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 Delivery Models of Palliative Care

Reference Material and Assignment in Each Week

 WEEK: XII (02 CREDIT HOURS)
AVAILABILITY OF ENDs & ADVANCE DIRECTIVE
 1. Introductory Dialogue for Week: 12
 2. Availability of ENDs in India

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 3. Availability of ENDs & Advocacy
 4. Euthanasia

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 5. Advance Directive

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 6. History of Opium PART: I
 7. History of Opium PART: II

Reference Material and Assignment in Each Week

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BASICS OF PALLIATIVE CARE
INTRODUCTORY DIALOGUE
WEEK: I

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Dr GEETA JOSHI & Dr YASHAVNT JOSHI

BASICS OF PALLIATIVE CARE

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DR GEETA JOSHI
COMMUNITY PARTICIPATION
Community Based Palliative Care

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Dr YASHAVANT JOSHI
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

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PART: I

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DR YASHAVNT JOSHI
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

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PART: II

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DR YASHAVNT JOSHI
 Basics of Palliative Care

Dr Geeta Joshi
Chief Executive Officer

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Community Oncology Center
The Gujarat Cancer Society
Ahmedabad: 380007

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Former Prof & Head

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Gujarat Cancer & Research Institute
Ahmedabad

Email: [email protected] Mobile: 9824075707

 Ravi, a 25 years old man
 Fell from coconut tree 6 months ago
 Underwent an operation on back
 He becomes “Paraplegic” following surgery
 Doctors says “Take him home. Nothing more can be done”
 Ravi is now bed-ridden
 He develops bed-sores, wounds with smelling discharge
 He has lots of pain, can not lie on his back

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 He is in severe “DISTRESS”
 He & his family members do not know what to do?

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Do you agree with the
doctor’s remark that
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Ravi?
 What is Palliation?
From Latin verb – palliare, To Palliate (v.t.)
means…
1. To cause something to appear less serious
or offensive

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2. To relieve symptoms of a disease without

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curing

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“You are a Bridge!”
 What is Hospice?
The word “Hospice” is derived from the Latin word
‘hospitum’, which means hospitality
(it is resting place for people who are very sick & Dying)

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It is different from “Hospital”
(It is healthcare set up for active medical care)

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 History of Palliative Care in Western World
Concept of Care of dying

Concept of Hospice

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Dame Cicely Saunders
22 June 1918 – 14 July 2005
English nurse, Social Worker,
Saint Christopher's Hospice
Physician & Writer London, UK, 1967
 History of Palliative Care in India
Community Oncology Center
Shanti Avedan Sadan – Mumbai In Ahmedabad
Dr L D’Souza in 1987 Dr M T Bhatia in 1988

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 History of Palliative Care with Community Participation
The Concept of Neighbourhood Network in Palliative Care’ in Kerala in 1999

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Pain & Palliative Care Society, Kozicode

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Institute of Palliative Medicine

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What is Palliative Care? WHO Definition 1990 & 2018

Palliative care is an approach that improves the quality of life

of patients and their families facing the problems associated
with life-threatening illness, through the prevention and relief of

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suffering by means of early identification and
impeccable assessment, and treatment of

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pain and other problems –
physical, psychosocial and spiritual.
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Palliative Care: A concept of “Holistic Care”

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Mind

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“It is the care which addresses the
Wellbeing of the whole person”
 What is good quality PC?

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“Good quality palliative care can be defined as
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the care, which I would be happy to have given
to a member of my own family if he or she was
dying, or to receive myself when my time
comes”
– Dame Cicely Saunders
 Why Palliative Care is needed?

 Change in Disease demographics: increased incidence of Life Style Diseases

Like, Hypertension, Diabetes, Stroke, Kidney, Lung & Liver disease,
 Rise in Incidence of Cancer and HIV / AIDS: Patients report for treatment

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In very advanced, incurable stage. They need Palliative Care only
 Increase in Life Expectancy: In 1990 it was 57.86 years. In 2017 it has
Increased to 69.16 years

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 Change in dying process: Most of the people die in hospital, increasing
Healthcare cost. <10% sudden, unexpected cause (MI, accident). Death

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Is considered as “Medical Failure”

In India, 3-4 people per 1000 population need Palliative Care [1.2 billion]
Only 5 million has access to it.
 Who needs Palliative Care?

- Cancer

- HIV/AIDS
- Dementia
Palliative Care

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- Progressive neurological disorders
For
o Parkinson’s disease
Cancer
o Multiple Sclerosis

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And
o Motor Neurone Disease
Non-Cancer
o Stroke
- End-stage organ diseases N
o Lung, Heart, Kidney, Liver
Patients

- Old age
o old people dying as a consequence of the ageing process
Palliative Care is continuum of Care

Old Curative
Concept Palliative Rx
Rx

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PT
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Palliative Care is Integrated,
Complimentary Care?

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HOLISTIC CARE

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Patient Caregiver

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“There is always something I can do”
Where Palliative Care can be given ?

Out Patient Department

In Hospital

Day Care Unit

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Palliative
In-patient Ward In-patient Ward
In Hospice
Care In Hospital

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Services

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 How Palliative Care is delivered?
Clinical
Spiritual Gurus
Psychologist AYUSH
Specialists

Volunteers

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Physiotherapists

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Nurses

Social

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Multidisciplinary
Physicians
TEAM
 How Palliative Care is delivered?

Nursing
Care

Pain Mx

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Psycho-Social Psyco-Social Issues
Issues Symptom Mx
By

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SYMPTOM Pain Mx
Communication
Mx Skills 4th Qtr

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Community Participation is Backbone of Palliative Care Delivery
 Palliative Care is identifying
Serious Health Related (SHR) sufferings
Ques Nil Mild Moderate Severe Excruciating
0 1 2 3 4

Pain &
Symptoms

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Psychology

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Social
issues

Spiritual
issues
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score > 2 need palliative care, and ensured followed up,
until the score reduces to < 2
 Palliative Care: Patients’ Perspective

Just let me
make my own
decisions

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PT
Paternalism
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Autonomy
 Let me make my own decisions …

Ryle’s
Tube???
? Don’t tell
Sedate
my family

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me
I am dying
Send me
home to

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Resuscitate die Feed me
me until the

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I want
I don’t want
morphine
end

? euthanasia ?
Palliative Care: Patients’ Perspective

Tender, loving, care!

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PT
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 Palliative Care: Patients’ Perspective
Low Tech, Quality Care & Socially acceptable
And affordable interventions

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PT
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Palliative Care: Patients’ Perspective
Always in presence of Loved ones!

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 Concept of HOSPICE
Hospice care is a type and philosophy of care that focuses
on the palliation of a terminally ill or seriously ill patient's
Pain and symptoms, and attending to their
And family’s emotional and spiritual needs.

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PT
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N
PT
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N
PT
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COMMUNITY ARTICIPATION
Community Based Palliative Care

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PT
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Dr YASHAVANT JOSHI
 PALLIATIVE CARE
CONTINUUM OF CARE

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PT
N
 Physical

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Total Psychologi
Social
Care cal
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N
Spiritual
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PT
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 What is Palliative Care?
1. Low Tech but High Touch (Care)!: Doesn't
extend days into Life but increases LIFE into

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days.

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2. You will not be Cured but you will die Healed!:
Improves “Quality of Life”!
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3. Death with Dignity!: You will not die Cured but
die Healed! Grief & Bereavement Services
 COMMUNITY PARTICIPATION

PART: I Community Based Palliative Care

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Centres
PART: II Volunteers
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PART: III Home Care
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PART: IV Care Givers
PART: V Neighbourhood Network
Community Based Palliative Care
Centres

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PT
N

PART: I
 Community Based
Palliative Care

“Palliative Care services

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which are run with
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Community
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Participation”
 Community Participation

 The involvement of people in a community to solve their own

problems.
Very broad concept

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
 Simple feedback, major involvement in all the phases and areas
of the program.
 PT
Needs assessment, Planning, Implementation, Resource
mobilization, Daily management and Evaluation
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 Every member of Community can not contribute equally
 Attempt to actively involve as many key groups and individuals
as possible.
 Why a Community Approach
 Need continuous care and attention for the rest of their
lives
 Need of regular social, psychological and spiritual support

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in addition to the medical and nursing care
 Readily accessible and available as close to home as

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possible PT
Integrated care- all diseases, all stages
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 Enough social capital available to build a ‘safety net' in the
community around these patients
 Saves precious health care resources for acute care
 Better outcomes
 COMPONENTS
COMMUNITY BASED PALLIATIVE CARE
Sensitive

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Supportive
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Participative

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 BENEFITS

PATIENTS / FAMILIES COMMUNITY

Total care  Social capital,

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 Improving skills
Affordable care
Easy
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empowerment.
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accessibility
 More confident
 Self sufficient
 COMMUNITY

 A group of interacting organisms sharing

an environment and common

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characteristics.
 Intent, belief, resources,
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preferences, needs, risks, etc..
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 Common identity of the people and degree
of cohesiveness.
 COMMUNITY PARTICIPATION
 People who can spare at least two hours per week to care for
the sick in their locality are enrolled to undergo Volunteers
Training Programme. On successful completion of this
training, these volunteers are encouraged to form groups of 10-

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15 and identify the problems of such people who require
palliative care intervention. These groups are to be supported
by doctors and nurses in the local pc centres.
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 They make regular home visits to follow up the patients seen by
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the palliative care team, identify and address their psycho-social
and financial problems, organize programmes to create
awareness in the community and to raise funds for palliative
care activities including rehabilitation projects. They function as
an effective link between the community and the palliative care
providers.
 SMALL SCALE DONATIONS…
ONE RUPEE PER
DAY
Started in Nilambur.

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A method for

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increasing participation.
Now a major source of
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income for many of the
clinics
 SMALL SCALE DONATIONS..

BUS EMPLOYEES’
PARTICIPATION

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Each bus entering

Nilambur and Areakode

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bus stands contribute
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two rupees per day
ROLE OF VOLUNTEERS

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PT
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PART: II
 Role of Volunteers
 Volunteers though not counselors can be trained to listen
compassionately to whatever the patient and members of the
family may choose to share. While they do not under any

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circumstances replace the professionals on the team, they
represent the face of a caring community and bring a much
needed human touch to the care of the seriously ill and dying
patient.
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N
 In cases where a volunteer does not wish one-to-one contact
with a patient or family member, he or she can perform practical
tasks for patients and their families including office duties and
promotional work like fundraising.
 ROLE OF VOLUNTEERS
 Provide an opportunity to the patient and the family
to talk over issues that may be troubling them.

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• Offer practical advice and support to family
members as well as fill in for them.
• PT
Get medical equipment, supplies and nutritional
supplements for those with special needs.
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• Mobilize the local community to offer support in a
variety of ways.
• Offer bereavement counseling to grieving relatives
 COMMUNITY VOLUNTEERS

 Emotional support

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 Basic nursing

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 Follow up of professional home care

 Linking up with the professional team

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 Spiritual support
 COMMUNITY VOLUNTEERS
Social support to the affected family by way of:

 Food for the family

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 Educational support for children
 Helping with transport to hospital
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 Linking with other support groups
 Helping to make potential benefits from
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government / NGOs available
 Rehabilitation
 Bereavement
 COMMUNITY VOLUNTEERS
ORGANIZATIONAL AND ADMINISTRATIVE SERVICES:

 Regular awareness program in the community

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 Training the family members to look after the
patient
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 Training volunteers in the community
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 Administrative management of the unit

 Fund raising
HOME CARE

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PT
N

PART: III
 OBJECTIVE of HOME CARE
The aim is to address
“Total Pain” of

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patients and their
Care Givers and
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improve the
quality of life of
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the patients and
their relatives.
 What is Home Care?
 Home care is an option allowing older adults the choice to age at
home with a specified level of care they need for safety, comfort
and independence.

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 Simply described, home care means help with activities of daily living
and household tasks. It includes meaningful companionship for
older adults. In-home care is the oldest form of healthcare.
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Today, home care serves as a comprehensive alternative to institutional
living.
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 Home care is commonly presented as a service to assist aging seniors,
it’s a valuable resource when a person at any age has an injury, accident
or surgery or is suffering from a chronic illness.

RECEIVING CARE AT HOME!

 What is Home Care?
1. Bed-ridden Patients

End of life Palliative Care patients are

mostly bed ridden and cannot come

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to an OPD of a hospital. Such
patients will need to be cared for at
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a hospice or their homes. Since
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most of our patients prefer to be
cared at homes, the need for Home
Care is there.
 What is Home Care?
3. Quality of Life
Home care can be the key to achieving the highest quality of life possible. It
can enable safety, security, and increased independence; it can ease
management of an ongoing medical condition; it can help avoid
unnecessary hospitalization; it can aid with recovery after an illness,

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injury, or hospital stay; all through care given in the comfort and
familiarity of home. Home care can include:
 Help with daily activities such as dressing and bathing
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 Assistance with safely managing tasks around the house
 Companionship
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 Therapy and rehabilitative services
 Short- or long-term nursing care for an illness, disease, or disability
including tracheotomy and ventilator care

The care you need in the place you love!

 What is Home Care?
4. Professional Support Services
 Home care includes any
professional support services that
allow a person to live safely in their

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home. In-home care services can help
someone who is aging and needs
assistance to live independently; is
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managing chronic health issues; is
recovering from a medical setback; or
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has special needs or a disability.
Professional caregivers such as nurses,
aides, and therapists provide short-term
or long-term care in the home,
depending on a person's needs.
 HOW IS CARE PROVIDED?
Personal care and
companionship does not

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need to be prescribed by
a doctor. Care provided
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on an ongoing basis on a
schedule that meets a
client’s needs, up to 24
N
hours a day, 7 days a
week, including possible
live-in care.
 Types of Home Care

Not all home care providers offer all the different types of home care
services. Care is customized to your individual needs; by contacting
a provider to discuss your needs can help determine what care is

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best for you. While the multiple types of home care may serve
different needs, they share a common goal: to enable happier,

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more independent living for the people receiving care,
and to provide support and peace of mind for their
families.
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1. Home Care by Care Givers
2. Home Care by Medical Services
CARE GIVERS

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PT
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PART: IV
 CAREGIVING!
How it Starts?
In fact, it starts from our childhood!

Your parents have aged now; no one to care for at home!

You start dropping by their house and start doing her
laundry, or taking your dad to a doctor’s appointment.

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You find yourself that your energy goes to caring for your
loved one. Thus, Caregiving has become your new
PT
routine! You do grocery shopping and refilling
prescriptions: gradually, you are doing more and more.
N
At some point, you realize you have made a commitment
to take care of parents!

THUS, CAREGIVING CREEPS UP ON YOU!

 CAREGIVING!
How it Starts?
Maybe you suddenly realize
that dad’s memory lapses
have become dangerous

EL
Sometimes, caregiving is
triggered by a major
PT
health event, such as a
stroke, heart attack, or
N
accident. Life as you know
it stops, and all.. career,
and you adjust to a new
normal.
 WHO IS CARE GIVER?
A caregiver, carer or support worker
is a paid or unpaid member of a
person's social network who helps

EL
them with activities of daily living.
Since they have no specific
PT
professional training, they are often
described as informal caregivers.
N
Caregivers most commonly assist
with impairments related to old age,
disability, a disease, or a mental
disorder.
 WHY CARE GIVER NEEDED?
 With an aging population in all
our societies, the role of A person may need
caregiver has been increasingly care due to loss of

EL
recognized as an important health, loss of
one, both functionally and memory, the onset
PT
economically. Many
organizations that provide
support for persons with
of illness, an
incident (or risk) of
N
falling, anxiety or
disabilities have developed
various forms of support for
depression, grief,
care givers as well. or a disabling
condition.
 BASIC PRINCIPLES
 A fundamental part of giving care is being a good communicator with
the person getting care.
 Care is given with respect for the dignity of the person receiving care.

EL
 The carer remains in contact with the primary health care
provider, often a doctor or nurse, and helps the person receiving care

 PT
make decisions about their health and matters affecting their daily life.
In the course of giving care, the caregiver is responsible for managing
hygiene of herselves, the person receiving care, and the living
N
environment.
 The caregiver manages organization of the person's agenda. Of
special importance is helping the person meet medical appointments. Also
routine daily living functions are scheduled, like managing hygiene tasks
and keeping health care products available
 Qualities of Care Giver
Being a caregiver is an incredibly rewarding experience that can
offer many amazing benefits. From the sense of satisfaction, you
get from helping someone in need to the strengthened bond you
form with the person you’re caring for, there are plenty of reasons
to be proud of being a caregiver. Here are just a few of the reasons

EL
why caregivers are amazing people:
1. Constantly Giving of 5. Have a Lot of
PT
Themselves: Empathy
2. Great
Patience
6. They are
N
Communicators Resourceful
3. Have a Positive 7. Caregivers are
Outlook Strong
4. Flexible 8. Compassionate
 MOTHER
The Best Example of Caregiving!

EL
PT
N
NEIGHBOURHOOD NETWORK

EL
PT
N

PART: V
 NEIGHBORHOOD NETWORK
NN in Palliative Care is an attempt to develop a
sustainable ‘community led’ service capable of offering
comprehensive Long Term Care and Palliative Care to

EL
the needy in the developing world. In this programme,
volunteers from the local community are trained to
PT
identify problems of the chronically ill in their area and
to intervene effectively, with active support from a
N
network of trained professionals. Essentially, NNPC
aims at empowering local communities to look after
the chronically ill and dying patients in the community.
 NEIGHBORHOOD NETWORK

People with incurable diseases have problems

different from those being treated by health care
institutions for acute illness. These chronically ill

EL
people are in need of regular care for the rest of
their life. Palliative Care aims at ‘total
PT
care’. But, putting the concept of ‘total care’
N
with continuous support in physical, psychosocial
and spiritual realms into practice is very difficult
through ‘institutionalized care’.
 NEIGHBORHOOD NETWORK
Issues associated with chronic/incurable
illness are basically social problems with a

EL
medical component. These need to be
handled by the society. For this to happen,
PT
the community should be in charge of the
programme rather than a few volunteers
N
among them taking pre-determined slots in
the palliative care units/home care
programmes run by health care
professionals.
 NEIGHBORHOOD NETWORK
 2001
 Malappuram district , Kerala

EL
 Kozhikode, Wayanad, Thrissur, Kannur
 10000 patients


PT
75 units -50 physicians /100 nurses
All the expenses for delivery of care (including
N
salaries, cost of medicines, food for the family,
educational support for the children) raised
locally (~ 80-90%)
 Neighbourhood Network: Kerala

 A project initiated in 2001 as an attempt to provide

community led care to the patients and their families

EL
who are in need of long-term care and palliative care

PT
 The project is inspired by the concept of primary
N
healthcare envisaged by WHO in 1979.
Kerala Model

 Neighborhood Network in Palliative Care (NNPC) was

established to facilitate the active involvement of the
community in the problems of the patients and care-

EL
givers.
 The initiative was launched in Mallapuram district by
four NGOs in Nov 2001.
 PT
Creation of a policy umbrella by the Govt of Kerala in
2008 (Pain & Palliative Care Policy of Govt of Kerala).
N
 Intervention by Local Self Govt Institutions and Govt
Health Services.
 Part of National Rural Health Mission.
COMMUNITY CENTRE, VASANA
Palliative Care is integral part of Cancer Care.
Palliative care aims to enhance the quality of life of
patients and their families who are faced with a life-

EL
threatening illness like Cancer. Home Care is one of
the most important facets of this services.

PT
Following the celebration of Hospice Day on 9 Oct
2010, a separate “Pain & Palliative Care OPD started.
We were doing Palliative Home Care earlier, of
N
course, on a small scale. Now, we will be going to
needy patients of Ahmedabad area with ambulance
from Gujarat Cancer & Research Institute.
COMMUNITY CENTRE, VASANA
“Lodge Fellowship No 140” under the stewardship of Col
(Dr) Yashavant Joshi donated an ambulance for Home
Care Project in memory of Bro Major SS Oberoi on 19

EL
Jan 2014.This Home Care Van was formally dedicated for
services of patients on “World Cancer Day” of 4th Feb
2014 by Dr Sunil Avashia, Addl Director, Medical
PT
services, Dept of Health & FW, Gandhinagar. It boosted
our efforts and provided scope for starting services on
large scale. We started our Home Service on daily basis
N
from Monday to Friday in afternoon hours. Our home
care visits are restricted to city of Ahmedabad &
Gandhinagar.
N
PT
EL
COMMUNITY CENTRE, VASANA

EL
PT
N
 TEAM

Together

EL
Each one
PT
Achieves
N
More
Thank you!

EL
PT
N
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

EL
PT
N

Dr Yashavnt Joshi
WHY COMMUNICATION IMPORTANT?

DOCTOR

EL
PT
N

PATIENT
HOW DOCTORS COMMUNICATE?

EL
PT
N
 COMMUNICATION PROBLEMS
PALLIATIVE CARE

We need effective
communication to solve the
following:

EL
1.Breaking Bad News.
2. Denial
3. Collusion PT
4. Difficult Questions
N
5. Ethics & Spiritual Issues
6. Emotional Reactions
7. Bereavement
 CONTENTS
PART: I Communication Skills in
Palliative Care
PART: II Why Empathy Matters?

EL
PART: III Six Points Tools Kit for
Communication

 CLASS
PT
PART: IV Some Communication Models:
N
 RESPECT
 NURSE
 SPIKES
 CONES
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

EL
PT
N

PART: I
 TIME OUT: I
Working with a trusted colleague discuss
palliative care terms and concepts. Choose a

EL
phrase or term such as ‘palliation’ or ‘symptom
management’:
PT
a) Describe how you would explain this concept to
lay carers.
N
b) Identify why it could prove confusing for
patients and their supporters.
 COMMUNICATION

Types of

EL
Communication
 Verbal

 Non-verbal
PT
N
 VERBAL
 Conscious use of spoken or written
word
Choice of words can reflect age,

EL

education, developmental level,


culture. PT
Feelings can be expressed through
N
tone, pace etc.
 Should be simple, brief, clear, well
timed, relevant, adaptable, credible.
 NON-VERBAL
 Use of gestures,
facial expression,  Eye
behaviors (body  Eye Contact

EL
language)  Posture, including
Less conscious sitting or standing

than verbal PT  Pitch and Pave of
Requires Voice
N

systematic  Touch
observation and
valid interpretation
PALLIATIVE CARE…
The focus is on the person
with the disease, rather
than the disease, therefore,

EL
COMMUNICATION
is very important in

PT Palliative Care.
N
 Treating patient and family
as unit of care
 Recognizing
psychological and
spiritual needs
COMMUNICATION
“Communication, like
tumors, may be DEFINITION
benign or malignant. The transmission of

EL
They may be information,
invasive, and the thoughts, and
PT
effects of bad
communication with
feelings so that
they are
N
a patient may satisfactorily
metastasize to the received or
family.” understood.
 COMMUNICATION SKILLS
 The act of communication is an important part of
therapy

EL
 Sometimes it is the only constituent

 PT
It requires greater thought and planning than a
drug prescription
N
 Unfortunately it is commonly administered in sub
therapeutic doses
N
PT
EL
N
PT
EL
TYPICAL SCENE!

EL
PT
N
IT IS DIFFERENT REALLY! BELIEVE IT!!

EL
PT
N
WHAT DOES IT MEAN?

EL
PT
N
 COMMUNICATION

1. What is the
need to

EL
communicate?
PT
2. What if we
fail to
N
communicate?
 THE NEED
Reliefof anxiety & better adjustment
with the disease process

EL
Mutual exchange of ideas or feelings

Proper guidance & better compliance

PT
Involvement of the family
N
Reduce isolation (self &social)

Acceptance & Trust

 IF WE FAIL?
 Poor symptom control
 Improper adjustment

EL
 Poor compliance & lack of co-operation

PT
 Worsening distress

 Escalating conflict
N
 ‘Too demanding’

 Medico-legal problems
 CONSEQUENCES OF POOR
COMMUNICATION
 Shock
 Emotional

EL
numbness
 Denial
 Anger PT
N
 Anxiety
 Depression
 Guilt
 COMMUNICATION: ART OR SCIENCE

“The art of the individual clinician

communicating with their

EL
patient”

PT
“The science of ensuring this
N
communication effectively meets
the patients need”
 GOALS OF COMMUNICATION
To reduce uncertainty
To enhance relationships

EL
To give the patient and
PT
family a direction in which
N
to move
Personal satisfaction
 PROBLEMS IN COMMUNICATION
 Fright of upsetting the patient.
 Anxious about doing more harm than
good.

EL
 Ill-equipped to answer difficult
questions.
PT
 Short of time
N
 Unable to handle the patients’
emotions.
 We cannot make the situation better
i.e. we cannot cure the patient.
 TIME OUT: II
Discussion of ‘presencing’ highlights that it would
be naive to think of communication solely as
‘speaking’. We communicate in different ways

EL
and sometimes through being present and
saying nothing. With your colleague discuss
PT
how the silent presence of the nurse with a
dying patient is different to the silence of
N
strangers in a railway waiting room. Make a list
of what is qualitatively different about this that
enables you to claim that you are caring for the
patient.
 PRINCIPLES OF GOOD
COMMUNICATION
 Clear:One meaning
 Complete: All relevant Information

EL
 Concise: Brief and yet
Comprehensive
PT
 Constructive: Positive Results
N
 Correct: Accurate

 Courteous: Polite
 DO’S IN COMMUNICATION
Show willingness to listen
Encourage the receiver to talk

EL
Modify or adapt your
PT
communication as per the
demand of situation
N
Maintain professional distance
by avoiding lose talk
DOCTOR-PATIENT COMMUNICATION

1.Difficulties for
Professionals

EL
PT
2.Difficulties
for Patient
N
DIFFICULTIES FOR PROFESSIONALS

 Upsetting the patient & handling reactions

 Being blamed, doing harm

EL
 Do not have the knowledge and the skill
How to say – ‘I do not know’!


 Too busy PT
N
 To concentrate more on physical issues
 Not part of my job, cannot make it better
 The language and dialect
 DIFFICULTIES FOR PATIENTS

 Lack of time & privacy

Other than physical – To tell or not ?

EL


 Afraid of the ‘truth’

 PT
Afraid of treatment being denied
Fear of losing control over emotions
N


 Unfamiliarity of the surroundings

 The ‘med speech’, authoritative Hierarchy
 COMMUNICATION BARRIERS

Patients might not ask questions

because they:

EL
 Fear the answer
 Want to avoid feeling stupid
PT
 Consider their uncertainties trivial
N
 Feel rushed
 Were previously brushed off by the
doctor
 COMMUNICATION BARRIERS

Patients might not disclose problems

because they:

EL
 Do not want to seem negative or
ungrateful
PT
 Want to be strong

 Think their concerns are not legitimate

N
 Do not want to add to the doctor's burdens

 Believe nothing can be done

 COMMUNICATION BARRIERS

Doctors block communication when

they:
 Give cues that they feel time pressure

EL
 Allow distractions

PT
 Do not acknowledge the patient's
emotions
N
 Address physical aspects only
 Offer reassurance before the main
problems have been identified
NOISE
physical noise – environment, inability to hear
– can detract from the message being

EL
communicated, while psychological noise –
form of address, presentation of self – can
PT
also affect the communication process. The
nurse needs to be sensitive to the context in
N
which communication is taking place with
the family unit and do everything in his or
her power to include them in all aspects of
the communication process.
 NOISE
In any communication model, noise is interference with the decoding of
messages sent over a channel by an encoder. There are many examples
of noise:
 Environmental Noise: The noise from a construction site next to a

EL
classroom making it difficult to hear the professor.
 Physiological-impairment Noise: Physical maladies that prevent
effective communication, such as actual deafness or blindness.

PT
 Semantic Noise: Different interpretations of the meanings of certain
words. For example, the word "weed" .
 Syntactical Noise: Mistakes in grammar can disrupt communication.
N
 Organizational Noise: For example, unclear and badly stated directions
can make the receiver even more lost.
 Cultural Noise: Offending a non-Christian person by wishing them a
"Merry Christmas".
 Psychological Noise: Certain attitudes can also make communication
difficult. For instance, great anger or sadness.
 TIME OUT: III
To explore the concept of ‘noise’ consider the following
scenario. Leela is being cared for in the community
and is in the final stages of illness after being

EL
diagnosed with bowel cancer. She copes with pain
which is adequately controlled, the embarrassment of
PT
unplanned bowel movements and mild wound odour.
She is also at the centre of an unpleasant divorce
N
between her daughter and son-in-law. Leela is trying
to protect her granddaughter from excess hurt. What
constitutes ‘noise’ here? Make notes on how you think
this influences the support relationship that a nurse
might offer.
 EFFECTIVE COMMUNICATION
IN
PALLIATIVE CARE

Build a healthy

EL
therapeutic
relationship

 Genuineness
PT
N
 Love, compassion
 Empathy
WHY EMPATHY MATTERS?

EL
PT
N

PART: II
 WHY EMPATHY MATTERS?

What is Palliative Care?

1. Low Tech but High Touch (Care)!: Doesn't ADD days into Life but adds LIFE into
days.

EL
2. You will not be Cured but you will die HEALED!: Improves “Quality of Life”!

PT
3. Death with Dignity!: Grief & Bereavement Services
N
THEREFORE
Our Communication & behaviour with patients should be
with
EMPATHY & COMPASSION!
UNDERSTANDING THE WORDS!

EL
PT
N
UNDERSTANDING THE WORDS!
1. Apathy: Lack of interest,
without feelings
2. Pity: Feelings of sorrow
caused by the sufferings of

EL
others
3. Sympathy means you can
understand what the person is
PT 4.
feeling.
Empathy means that you feel
what a person is feeling.
N
5. Compassion is the
willingness to relieve the
suffering of another.
 SYMPTHY

 Sympathy means you can understand what the person is

feeling. It can be tricky to differentiate sympathy and
empathy. The main difference? When you are

EL
sympathetic, you are not experiencing another’s feeling.
Instead, you are able to understand what the person is

PT
feeling. For example, if someone’s father has passed
away, you may not be able to physically feel that person’s
pain. However, you can understand that your friend is sad.
N
This explains why you send sympathy cards when your
friend’s loved one has passed away. You are not feeling
that person’s pain, but you want your friend to know you
are aware of her suffering.
SYMPTHY

EL
PT
N
 EMPATHY
 Empathy means that you feel what a person is
feeling. When you are viscerally feeling what
another person feels, you are experiencing. Thanks

EL
to your brain’s researchers “mirror neurons,”
empathy may arise automatically when you witness
someone in pain. For example, if you saw a spider
PT
crawling up my arm, you may feel a tickle on your
arm.
N
 For example, perhaps you saw me slam my fingers
in a car door, but you didn’t automatically feel that
pain. Instead, you can imagine what it might be like
to have your fingers slammed in a door, and that
may allow you to feel my pain.
EMPATHY

EL
PT
N
N
PT
EL
 COMPASSION

 Compassion is the willingness to relieve the suffering of

another. Compassion kicks empathy and sympathy up a
notch. When you are compassionate, you feel the pain of

EL
another ((empathy) or you recognize that the person is in
pain (sympathy), and then you do what you can to alleviate
the person’s suffering. compassion is a four-step process:
PT
 Awareness of suffering.
 Sympathetic concern related to being emotionally moved
N
by suffering.
 Wish to see the relief of that suffering.
 Responsiveness or readiness to help relieve that
suffering.
COMPASSION

EL
PT
N
UNDERSTANDING THE WORDS!

EL
PT
N
SYMPATHY – EMPATHY -
COMPASSION

EL
PT
N
N
PT
EL
 MEANING OF EMPATHY

 Understand another person’s emotions and

feelings
 Understand one’s own feelings and

EL
emotions.
 Supporting others who are in need.
PT
 Making people feel better about them.
 To be able to exercise self-control.
N
 To treat others the way you want to be
treated.
MODEL OF EMOTIONS

EL
PT
N
 WAYS TO SHOW EMPATHY

 Be aware of another person’s feelings by

showing concern.

EL
 Show sensitivity by looking at their facial
expressions.
PT
 Ask questions to understand feelings.
N
 Give a simple sign of affection such as
hug or a tender touch.
 WAYS TO SHOW EMPATHY
we show empathy by acknowledging the emotion. We
may say, for example,
 I can see you are really uncomfortable about this.

EL
 I can understand why you would be upset.

PT
Though empathy is usually used in reference to
sensing someone else's painful feelings, it can also
N
apply to someone's positive feelings of success,
accomplishment, pride, achievement etc. In this
case a "high five" would also be a sign of empathy.
 WHAT IS EMPATHETIC LISTENING?

 Empathetic listening is when one

EL
listens with the intend to
understand how the speaker feels.
PT
 To understand his/her ideas.
N
 Identify with person’s emotion and
feelings
 WHY IS EMPATHIC LISTENING IMPORTANT?

 Empathetic listening is important to use

in a emotional situation, when there is a

EL
problem that needs resolving or when
PT
there is a conflict present.
 The goal is to help the listener to show
N
emotions free from judgment and
criticisms.
 HOW DO YOU LISTEN
EMPATHICALLY?

“You feel….”
“It seems like…”

EL
“As I understand it, you sound…..”
PT
“It appears as if…..”
N
If I hear you correctly, you would
like…”
 STEPS FOR EMPATHIC
LISTENING

 Listencarefully for speaker’s messages,

EL
both verbal or non-verbal.
 Display an open and caring posture.
PT
 Consider the speaker’s emotional state.
N
 Calmly reflect back what you perceive
the speaker’s feelings and meaning to
be.
 IMPROVING COMMUNICATION
EMPATHETIC LISTENING

 Be present, and attend the conversation at hand.

Don’t be judgmental.

EL


 Pay attention to the speaker, their facial

expressions, and their body language.
 PT
Be quiet and patient. This is never truer than in a
tense situation that involves the speaker venting
N
over some hurt.
 Make sure you actually understand the issue at
hand.
 BEHAVIORS TO AVOID

Judging

EL
Criticizing
PT
Lecturing
N
Advising

Interrupting
 EMPATHETIC LISTENING TIPS

 Be interested in speaker.
 Have good eye contact and body

EL
language.
 Have less distractions.
PT
 Allow the speaker to talk
N
 Respond in a tone that is appropriate
for that situation.
 PALLIATIVE CARE
“HOPE” PLAYS AN IMPORTANT
PART...

EL
PT
N
N
PT
HOPE

EL
HOPE…
Hope needs an
object. Sometimes,
it is necessary to
HOPE

EL
break down an
is an ultimate goal into a
expectation series of mini goals.
PT
greater than
ZERO of
Setting goals is an
integral part of
caring for patients
N
achieving with an incurable
GOAL disease, even if
progressive.
THIS IS THE ANSWER!

EL
PT
N
PLEASE REFER…

EL
PT
N
PLEASE REFER…

EL
PT
N
PLEASE REFER…

EL
PT
N
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

EL
PT
N

Dr Yashavnt Joshi
WHY COMMUNICATION IMPORTANT?

DOCTOR

EL
PT
N

PATIENT
HOW DOCTORS COMMUNICATE?

EL
PT
N
 COMMUNICATION PROBLEMS
PALLIATIVE CARE

1.Breaking Bad News.

2. Denial

EL
3. Collusion
PT
4. Difficult Questions
5. Ethics & Spiritual Issues
N
6. Emotional Reactions
7. Bereavement
 CONTENTS
PART: I Communication in Palliative
Care
PART: II Why Empathy Matters?

EL
PART: III Six Points Tools Kit for
Communication

 CLASS
PT
PART: IV Some Communication Models:
N
 RESPECT
 NURSE
 SPIKES
 CONES
COMMUNICATION SKILLS
IN
PALLIATIVE CARE

EL
PT
N

PART: I
WHY EMPATHY MATTERS?

EL
PT
N

PART: II
SIX POINTS TOOLS KIT
for
COMMUNICATION

EL
PT
N

PART: III
 6 POINT TOOL KIT

1. Comfort

Language

EL
2.

Question Style
3.
PT
Active Listening
N
4.

5. Reflecting

6. Summarizing
 BE PREPARED…
 To stop the interview at
any stage

EL
 For repetition of
questions PT
N
 For silence

 For denial

 For emotional reactions

 1. COMFORT
 Preparation

 Physical

EL
environment
 Sitting PT
– perception
of time spent
N
 Height of Chairs, eye
contact
GETTING STARTED…

 Make time for unhurried conversation w/o

interruption

EL
 Privacy is important

 Introduce self by name and shake hands

PT
 Sit down to indicate you have time to
N
listen
 Make eye contact

 Avoid medical jargon

 2. LANGUAGE

 Impact- engaging and

gently transferring the

EL
information

 Avoid PT
N
 Complex words

 Jollying along

 Jargon
 3. QUESTION STYLE

1. Open : Questions that start with What and

How

EL
2. Closed: Questions that start with Did, Do,
Would, Will, Should, Could, Have, Must, Is
3. PT
Specific: Questions that are specific can start
with When, Where, Who, Which, How much,
N
How many, How often.
4. Visionary: What are your dreams, tell me
more, etc…
 QUESTION STYLE
 Open Question (How do you feel now?)

 Closed question (How is pain in your hand?)

EL
 Focused Question (For a specific information)

 If PT
too many – proper interrogation
N
 Leading question: Never ask.

 Direct question: Eliciting a special symptom

 Multiple questions: First Interview with patient

 ELICITING FEELINGS VS. DISTANCING

1. Leading Questions tend to

produce the answer the questioner

EL
want to hear. (Are you feeling better

2.
today?) PT
Closed Questions tend to
N
produce the answer Yes or No. (Have
you any pain?)
 COMMON WAYS OF DISTANCING
 Non-verbal Messages
 False Reassurance
 Labeling/Categorizing
 Using euphemisms to
 Paying selective

EL
mislead.
attention to safe
physical aspects  Jollying along…

PT
 Never asking beyond
the physical
 Concentrating on
physical tasks
N
 Using only closed  Inappropriate Humour

questions  Disappearing from

 Premature stressful situations

Normalization
 CASE HISTORY

 History is His story !

 We need to know his

EL
issues in order to
help him
PT
 LISTEN to the story
N
 Active listening is
the key to effective
communication
 4. ACTIVE LISTENING
 Open questions, encourage talking

 Accept silence

EL
 Allow assimilation of news
 Patient feels listened to
 Time to react, ask questions, talk

 PT
Avoid unnecessary interruption

Respond through verbal and non-verbal means

N


 Summarize & prioritize the agenda

 Empathize & give realistic hope

 EL
PT
N
LISTEN, LISTEN AND LISTEN…
 ACTIVE LISTENING!
 Active listening is a skill that can be acquired and
developed with practice. However, active listening can be
difficult to master and will, therefore, take time and

EL
patience to develop. 'Active listening' means, as its name
suggests, actively listening. That is fully concentrating on
what is being said rather than just passively ‘hearing’ the


PT
message of the speaker.
Active listening not only means focusing fully on the
N
speaker but also actively showing verbal and non-verbal
signs of listening. Generally speakers want listeners to
demonstrate ‘active listening’ by responding appropriately
to what they are saying. Appropriate responses to listening
can be both verbal and non-verbal.
 SIGNS OF ACTIVE LISTENING
NON-VERBAL SIGNS
This is a generic list of non-verbal signs of
listening, in other words people who are
listening are more likely to display at least

EL
some of these signs. However these signs
may not be appropriate in all situations and
across all cultures.
 Smile PT
 Eye Contact:
N
 Posture
 Mirroring
 Distraction
 SIGNS OF ACTIVE LISTENING
VERBAL SIGNS
It is perfectly possible to learn and mimic non-
verbal signs of active listening and not actually
be listening at all. It is more difficult to mimic

EL
verbal signs of listening and comprehension.
Positive Reinforcement


 Remembering PT
N
 Questioning

 Reflection

 Clarification

 Summarization
 ACTIVE LISTENING
 Nod to show you are paying attention
 Repeat words of patient to encourage
 Pick up cues

EL
 Reflect questions back

PT
 Ask about feelings
 Validate feelings
N
 Watch body language and pick up non-verbal
cues
 Summarise details of conversation
 Prioritize problems
 5. REFLECTING ON ANSWERS
For example, ‘What have you been told about
your illness so far?’ or ‘What is your
understanding of the reasons we did the

EL
scan?’ The responses to such questions
will indicate the patient’s understanding of
PT
his or her illness to date, will allow for the
correction of misinformation and can also
N
help to determine whether or not the
patient has, for example, unrealistic
expectations, illness denial or gaps in
information about his or her illness.
 6. SUMMARIZING
Present treatment or palliative care
options, being sure to align your
information with what you

EL
ascertained (during the assessment
of the patient's perceptions) to be
PT
the patient's knowledge,
N
expectations, and hopes. Providing a
clear strategy will lessen the
patient's anxiety and uncertainty.
 COMMUNICATION SKILLS
DIFFERENT WAYS!
 Kind and Concerned: as a painful duty – beating
round the bush, jargon, disguised hints, leaving the
patient confused / depressed / resentful

EL
 Hit and Run Approach: leaving a shattered patient

PT
Blunt and Unfeeling: Straight answers to straight
questions, leaving an unprepared patient without
N
support, worried / depressed
 Talking to the relative only, leaving the patient
suspicious and worried
 Flexible: based on feedback with reassurance,
leaving the patient concerned but reassured!
 COMMUNICATION PROBLEMS
PALLIATIVE CARE

1.Breaking Bad News.

2. Denial

EL
3. Collusion
PT
4. Difficult Questions
5. Ethics & Spiritual Issues
N
6. Emotional Reactions
7. Bereavement
 COMMUNICATION PROBLEMS
PALLIATIVE CARE

 Bad News: Any information that drastically alters a

person’s view of their future for the worse.
 Denial: The psychological shock-broker that allows us to

EL
suppress mentally what we can not accept emotionally.
 Collusion: Collusion implies information (diagnosis,
prognosis and medical details about patient) being
PT
withheld by some and not shared with significant
stakeholders.
Anger Management: Appropriate short-term reaction to
N

diagnosis of serious illness. Encourage expression of
Anger.
 Difficult Question by Patient: Show interest, empathize
and explore reasons behind it.
 SOME
COMMUNICATION MODELS

EL
PT
N

PART: IV
 COMMUNICATION PROTOCOL
 A communication protocol is a system of rules that
allows two or more entities of a communications system
to transmit information via any variation of a physical

EL
quantity. The protocol defines the rules, syntax,
semantics, and synchronization of communication and
possible error recovery methods. Protocols may be


both. PT
implemented by hardware, software, or a combination of

Communicating systems use well-defined formats for

N
exchanging various messages. Each message has an
exact meaning intended to elicit a response from a
range of possible responses pre-determined for that
particular situation. The specified behaviour is typically
independent of how it is to be implemented.
 CLASS PROTOCOL

EL
“Initial Conversations”
PT
N
 THE CLASS PROTOCOL
As stated earlier, communication in palliative care is important
from the moment that the patient first meets a palliative care
professional until the last moment of life. Most significant

EL
conversations in palliative care comprise two major
elements: one in which medical information is
transmitted to the patient (bearing the news), and the

PT
other in which the dialogue centers on the patient's
feelings and emotions and in which the dialogue itself
is a therapeutic action (therapeutic or supportive
N
dialogue). In practice, most conversations are a mixture of
the two, although commonly there is more medical
information transmitted in the earlier conversations shortly
after starting palliative care, and there is usually a greater
need for therapeutic dialogue in the later stages.
 THE CLASS PROTOCOL
 C: Physical CONTEXT or
setting
 L: LISTENING skills

EL
 A: ACKNOWLEDGE
emotions and explore
them PT
N
 S: Management
STRATEGY
 S: SUMMARY and
closure
 EL
RESPECT PROTOCOL
“Difficult situations”
PT
N
THIS IS NOT THE WAY!

EL
PT
N
COMMUNICATING IN DIFFICULT SITUATIONS
 Difficult situations can make communication feel
impossible, or at least secondary to survival and
protecting your self-interest. Both stress and

EL
uncertainty can team up to evoke your fight or
flight response in personal and professional
settings. PT
N
 An easy way to remember the communication
skills needed for practice is summed up in a
catchy acronym: RESPECT. Here are the 6 things
you need to know in this acronym:
RESPECT…

R- Rapport
This is of vital importance. Noting the smallest

EL
details—such as physical appearance, your
level of eye contact with patients or how often
PT
you use their names in conversation—can
shape your relationships with patients. You
N
need to give patients your “full, undivided
attention,” listen carefully and “hear their
stories.”
RESPECT…

E – Explain
Ask patients a variety of questions that

EL
encourage them to explain more about
their health and habits outside their
PT
appointments. Questions such as, “Can
you tell me more about yourself? What is
N
important to you? And what can I do to
help you?” can incite patients to fully
engage in conversation.
RESPECT…
S – Show
Regardless of your specialty or practice setting,

EL
you will have to deliver constructive criticism
during your career. Work with them in an
active way rather than telling them what to
PT
do. With the proper approach, a critique can
become an opportunity to bond with your
N
patient. For instance, try a “7:1 compliment
ratio.” Give your patients seven compliments
for every one statement of criticism
RESPECT…

P – Practice
Practice may not always “make

EL
perfect,” but it certainly can help you
PT
get ahead of tough conversations with
patients. Practice good
N
communication as much as possible.
RESPECT…

E – Empathy
Avoid being judgmental by

EL
providing encouragement to your
PT
patients. This can be expressed
N
through verbal and non-verbal
cues.
 TIME OUT: IV

What do you understand by the term

‘empathy’? Give some examples of

EL
when you, as a nurse, were empathic
PT
with a patient. How did you feel when
you were able to identify with that
N
patient and make a real difference to
his or her situation?
RESPECT…

C – Collaboration
Keeping in mind that people are far

EL
more likely to positively respond to
recommendations and questions in
PT
collaborative settings, partner with
N
your patients. Explain your
recommendations, what you’re doing
and how you’re doing it.
RESPECT…

T – Trust
Trust is the most important component

EL
of this relationship. And trust is not
PT
something that we buy or demand
from others but it is something that
N
we gain.If we want others to trust us,
we need to respect them first.
NURSE PROTOCOL

EL
“Continuer Statement”
PT
N
 NURSE
Duke is one of the world's premier centers for
medical education, clinical care and biomedical
research. Planning for the school began in
1925, when businessman James Buchanan

EL
Duke, bequeathed $4 million to establish the
Duke School of Medicine, the Duke School of
Nursing and Duke Hospital.
PT
Less than five years after the school opened in
1930, the Association of American Medical
N
Colleges ranked Duke in the top quarter of
medical schools in the country. Now, more than
75 years later, the Duke University School of
Medicine is firmly in the top 10 medical schools
nationally.
 CONTINUER STATEMENTS
An educational program
 Name: State the developed by James Tulsky,
patient's emotion Director, Centre for Palliative
Care at Duke University

EL
 Understand: Empathize (Durham, NC) teaches the use
with and legitimize the of a “continuer statement”
emotion when an opportunity for an
 PT
Respect: Praise the
patient for strength
empathic response occurs in a
patient encounter. Such a
statement offers empathy and
N
 Support: Show support allows patients to continue
expressing emotions. The Duke
 Explore: Ask the patient team uses the mnemonic
to elaborate on the “NURSE” to label five types of
emotion continuer statements.
 EL
SPIKES PROTOCOL
“Breaking Bad News”
PT
N
 BREAKING BAD NEWS: SPIKES

In palliative care, there are many occasions when

new medical information needs to be discussed.
Hence it is essential to have a logical and

EL
systematic approach to sharing medical
information. The SPIKES protocol has been
developed at greater length; in practice, it has
PT
been found useful in all interviews concerning bad
news, whether or not the patient and the
N
professional know each other well. However,
formal studies of this protocol (or any other) have
not been carried out, and even the design of such
investigations poses major difficulties.
SPIKES

For over 70 years, MD

EL
Anderson Cancer
Center, Houston,
PT Texas, USA has
given hope and life
to thousands of
N
patients.
 COMMUNICATION

The forgotten medicine of the

medical field if properly given is the

EL
cure and if not is the disease itself.
PT
SPIKES?
N
 WHAT IS BAD NEWS?
 Any news which changes the way
a person looks at his future

EL
 Bad news is always a bad news

PT
for the patient

Only its impact can be lessened

N


by our communication style

Breaking bad
news is like
breaking an

EL
egg! It requires
a certain
PT
amount of skill,
N
otherwise you
are liable to be
in a mess!
 BAD NEWS

 Any information that drastically alters a

person’s view of their future for the worse.

EL
 How we break bad news can profoundly
affect out patients.
PT
 It is easy to escape from breaking bad news
N
but in practice, it is seldom a question of “to
tell or not to tell”, but more a matter of
“when and how to tell”.
 BAD NEWS
 Gradual communication of the truth within the
context of continued support and

EL
encouragement almost always leads to
enhanced hope.

PT
 Remember: The doctor-patient relationship is
based on trust; it is nurtured by honesty , but
damaged by deceit.
N
 It is necessary to be prepared for the strong
emotional reactions. E.g tears, anger, denial.
 WHAT USUALLY HAPPENS IN OUR
SURROUNDINGS
Collusion

Inadequate disclosure to the

EL
patient
PT
Disclosure without considering
N
empathy and emotional aspect
Disclosure with false assurance
 WHERE ARE THE BASICS OF HUMANITY?

 Autonomy ( right to know and right to choose)

EL
 Empathy

 Dignity

 Comfort
PT
N
 Feeling of being cared…??
 COMMUNICATION

 The forgotten medicine of the

medical field if properly given is the

EL
cure and if not is the disease itself.
PT
 Communication is the much
emphasized part, both in training and
N
clinical practice.
 Breaking bad news is one of the
crucial part in this.
 BREAKING BAD NEWS

 Often the first interaction between you and your

patient.

EL
 Prepare the base on which patient will react
psychologically to the disease.
PT
 Build the trust on which the further care to the
patient can be provided.
N
 Supports the family members and caregivers to
deal with the care related concerns.
AN APPROACH TO BREAKING BAD NEWS

THE ‘SPIKES’ PROTOCOL:

EL
 Setting
 Perception
PT
 Invitation or Information
N
 Knowledge

 Empathy

 Summarize and strategize

 WHY?
WHEN?
 Shared inclusive decision making

 Involvement of the family, closer  When the patient asks

bonding
Listen for cues

EL
 Reduce isolation, relief of anxiety 

& better adjustment with the

disease process  Give opportunity to ask!


feelings
PT
Opportunity to vent suppressed
N
 Proper guidance & better
compliance

 Acceptance & Trust

BREAKING BAD NEWS

 WHOM HOW
 Those who the patient knows  Bad news is a bad news
and trusts for the patient always.
Those who have the skill of

EL

 Only its impact can be
conveying the message
lessened by our
Those who can handle the

PT


reactions effectively communication style

 Those who know the disease,  Breaking bad news can be
N
prognosis and the treatment an ongoing process

BREAKING BAD NEWS

 BREAKING BAD NEWS: SPIKE
 Set the right physical context
 Setting up
 Explore the level of awareness
 Perception
Explore what patient wants to

EL
  Invitation
know  Knowledge

Sharing the information  Emotions

PT

 Strategy/Summary
 Warning shot, Pause, listen
 Aliquots of Information
This six-step protocol has
N
been developed at MD
 Allow ventilation, handle
Anderson Cancer Centre
reactions
(Houston, Texas)
 Check Clarity
 Future Plan, availability
 SETTING ( SPIKES )
 The physical environment, the news giver’s body
language.
 Quiet comfortable environment free from

EL
interruptions. ( e.g. mobile phones)
 Privacy of the patient

PT
 Body language of the news giver:
 Facial expression , eye contact
N
 Positioning and posture
 Pitch of voice and pace of speech
 touch
 PERCEPTION ( SPIKES)

 What does the patient/relative already know?

 “Can you tell me what has been happening so

EL
that I know what you have been told and
understand so far?”
PT
 Prevents discussing already known issues

 Identifies gap between knowledge and

N
understanding.
 Enables news giver to plan how to deliver news.
 INVITATION OR INFORMATION ( SPIKES)

 How much does the patient/ relative

want to know?

EL
 Invitation to receive further
PT
information.
 “Do you want to know more about
N
your illness? How much information
do you want? In what way?”
 KNOWLEDGE ( SPIKES)
 If patient wants to know in detail, give the
information gradually.

EL
 Give a warning shot and communicate the
information.
PT
 “The results of your tests tell us that we may be
dealing with something serious.”
N
 “Chunk and check” approach to ensure proper
understanding.
 Avoid using technical language.
 EMPATHY ( SPIKES)

 Demonstrate empathy with patient and family

 Listen carefully to what is being expressed.

EL
 Anger is a normal response, try to clarify the
causes of it and understanding.
PT
 Silence can be a useful tool.
N
 “Given what you are having to cope with, you
have every right to feel angry.”
 Demonstrate understanding and show support.
 SUMMARIZE AND STRATEGIZE

 Summarize what have been

discussed, understood and strategize

EL
for the future options and plans.
PT
 Emphasize what can be done to show
support to the patient and family.
N
 Openness to answer their questions
and availability.
IF PATIENT WANTS MORE INFORMATION…

 Give a “warning shot” before stating

diagnosis. (“Tests indicate that we

EL
should be dealing with something
serious”)
PT
 Tailor information to patient’s need,
N
use euphemisms
 Stop if patient indicated that she had
heard enough
 STRATEGY: COPING WITH UNCERTAINTY

“How long have I got, Doctor??

EL
A Rolling Horizon
PT
 Hope for the best but plan for the worst
N
 Reaching Anniversaries/Important Events

 Living one day at a time

 WHAT USUALLY HAPPENS IN OUR
SURROUNDINGS

 Collusion

EL
 Inadequate disclosure to the
patient
PT
 Disclosure without considering
N
empathy and emotional aspect
 Disclosure with false assurance
 We are not news reporters,
Breaking bad news should be

EL
emotional, soothing and
PT
acceptable experience
not sensational, panic and
N
disturbing.
Disclosing that a medical error
has occurred!

EL
PT
CONES?
N
 CONES PROTOCOL
Use the C-O-N-E-S Protocol
 C Context when:
• Disclosing that a medical
 O Opening error has occurred

EL
Shot • There is a sudden
deterioration in the patient’s
 N Narrative medical condition
 E Emotions
PT
• Talking to the family about a
sudden death
 S Strategy & NOTE: The news should be
N
delivered by the most senior
Summary person on the patient’s
treatment team.
 CONES PROTOCOL
C – Context
• Prepare for what to say and anticipate the patient/family reaction.
• Have the conversation in a quiet undisturbed area.

EL
• Seat the patient closest to you and have no barriers between you.
• Sit down, try to be calm, maintain eye contact.
• Have a box of tissues available.


PT
O – Opening Shot : Alert the patient/family member of important news:

“This is difficult. I have to tell you what I found out about why your
N
mother is so ill.”
 “This is hard, but I have some information to give you that is
important.”
 “I must talk to you about your condition.”
 “Thanks for coming in. I must tell you what is going on with your
father.”
 CONES PROTOCOL
N – Narrative Approach
• Explain the chronological sequence of events.
“As you know, your mother came in back in…” “Then, we gave her… and there was little
improvement.” “Last night we….and I just found out that …” “In other words, she

EL
received too much chemotherapy.”
• Avoid assigning blame and/or making excuses.
• Emphasize that you are investigating how the error occurred.



PT
“We started investigations and by the end of today I hope to be able to answer your
questions as clearly as possible.”
“I hope by the end of today she will turn the corner and start improving.”
N
 • Offer a clear apology.
 “I am really sorry that this has happened.”
E – Emotions
• Address strong emotions with empathic responses.
• Use the E-V-E protocol as soon as strong emotion occurs.
 “I know it’s upsetting for you and it’s awful for me too.”
 CONES PROTOCOL
“I know this is awful.”
“It’s very rare, but it does happen and I’m sorry to say that it did.”
• Beware of being pushed into making promises you can’t deliver.
• Avoid reassuring the person that there’s going to be a good outcome or that no harm

EL
was done.
S – Strategy & Summary
• Summarize the discussion and make specific plans for follow up.

PT
• Let them know the situation is a priority.
“I am the doctor responsible for your mother so it is important that I found out what
happened.”
N
“I’ll be open and honest with you when I have all the facts.”
“I can guarantee we will do our best.”
“Here is what I propose we do.”
“Let’s meet at the end of today or I can call you when I know more.”
 • If you don’t know the answer, say so and that you will attempt to find out.
 • Disclosing medical errors is now a standard. It’s not optional.
 • Sensitive disclosures have a favourable impact on malpractice claims.
N
PT
EL
 TAKE HOME MESSAGE
 Genuineness

 Best learned through experience

EL
 Identify your skills and try to refine them


PT
Identify your shortcomings and try to overcome them

There are no rigid guidelines

N
 Should be person centered and context oriented

 Do not try to imitate someone else!

APPLY TWO PARALLEL PRINCIPLES…

Never lie to

EL
1.
a patient
PT 2. Avoid
thoughtless
N
candour
 TEN COMMANDMENTS IN COMMUNICATION

“A good communicator is not one who

EL
is perfect and therefore never
commits a mistake; he is one who
PT
tries and gets it right as often as
N
possible!”
 TEN COMMANDMENTS IN COMMUNICATION

1. Thou shalt not do all the talking

2. Thou shalt not force your

EL
convictions on the patient
Thou shalt not make assumptions
3.

4.
PT
Thou shalt not be patronizing /
N
condescending
5. Thou shalt not moralize /
philosophize
 TEN COMMANDMENTS IN COMMUNICATION

6. Thou shalt not draw

comparisons

EL
7. Thou shalt not sympathize
8. Thou shalt avoid jargon
PT
9. Thou shalt avoid lies as well as
thoughtless honesty
N
10. Thou shalt avoid inappropriate
humour
 TECHNIQUES
IMPROVING PC COMMUNICATION

 Sit at eye level with the patient

 Be focused on the patient during the visit

EL
 Make eye contact
 Speak in short sentences
 Use simple language and pause frequently
PT
 Use drawings and pictures to explain a procedure
or a condition
N
 Ask the patient to describe his or her
understanding of your explanation
 Give a written summary of recommendations