Textbook of
Palliative Care Communication
Section I: Communication Principles
Chapter One
OVERVIEW OF COMMUNICATION
Approaches to Communication
• Relationship-driven
– Patient and family do not
receive information; they
co-create messages and
construct meaning with
providers
– Information is not the main
outcome of clinical
communication
• Outcome is the
relationship built
between provider and
patient/family.
• Information-driven or
sender-based
– Outcome is based on
delivery and receipt of
medical knowledge
– Receipt of information is
considered effective
communication
• Outcome derives from
the sender’s performance
Our Concept of Communication
• Transactional
– The parties contribute to and negotiate the meaning
of messages, both verbally and nonverbally
• Relational
– All messages have at least two levels of meaning: the
task or informational level and the relationship level,
which cues interactants how to interpret and process
the message itself
• Mutual
– Communicators influence one another
COMFORT Communication Model
The seven basic principles of palliative care
communication, from a relational
communication perspective:
– Communication (clinical narrative practice)
– Orientation and opportunity
– Mindful communication
– Family
– Openings
– Relating
– Team
Chapter Two
A HISTORICAL PERSPECTIVE IN
PALLIATIVE CARE COMMUNICATION
Communication:
The Cornerstone of Quality Care
Early Focus of Communication in Healthcare
– Avoided the subject of death and dying
– Discussing death and dying was perceived as
stressful to patient
Hospice and the Role of Communication
Hospice Movement: Strides forward in
Communication
Hospice providers encouraged open and honest
communication
– Introduction of team-based care and team
communication
Communication Comes to the Forefront
National Consensus Project
• In 2004, clinical practice guidelines were developed by a
consortium of the leading palliative care organizations,
representing a major advance in palliative care
• Quality communication is at the core of all the palliative
care guidelines:
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Domain 1-Structure and Process of Care
Domain 2 – Physical
Domain 3 – Psychological and Psychiatric
Domain 4 – Social
Domain 5 – Spiritual
Domain 6 – Cultural
Domain 7 – End of Life
Domain 8 – Ethical and Legal
Current Communication Trends in
Palliative Care Literature
• Patients’ and families’ desire for honest and
open communication
• The importance of communicating hope in
palliative settings
• Barriers to communication
• Communication needs among pediatric
populations
• Use of technology to improve communication
Current Limitations of
Palliative Care Communication
• Research has focused on physician-patient
interactions
• Communication education restricted to
“breaking bad news” discussions
• Protocols or “step” approaches have excluded
relational approach
• Training has been limited to lecture format
Chapter Three
TRANSACTIONAL COMMUNICATION
Transmission Model of Communication
• Also called the sender-oriented approach
– Sender transmits message to receiver
• Shortfalls:
– Uneven balance of power between sender and
receiver (ex: healthcare provider and patient)
– Depicts communication as product of independent
parties without a guarantee that important
information will be heard and understood by receiver
– Little concern for medium and medium’s effectiveness
(face-to-face, telephone, email)
Transactional Model of
Communication
• People are simultaneously senders and receivers
in an ongoing process
– Each person is influenced by the other
– Emphasizes shared meaning and what happens
“between people”, between the sender and receiver
• Benefits:
– Encourages people to share power
– Reminds people to be attentive to cues about how
others interpret information
– Recognizes social, environmental, personal factors
BATHE
• A five-part guide for responding to emotions
– Background information (Briefly, what has been
going on?)
– Affect (How has this affected you?)
– Trouble (What troubles you most?)
– Handling things (How have you been handling this
situation?)
– Empathy (It sounds like this is very stressful)
Relationship-Centered Care Model
• Focus on how relationships are enacted across all
healthcare providers who are serving the patient
– Mindful Communication (awareness of self, others,
relationships, and being open to new ideas)
– Diversity of Mental Models (how to manage diversity
within the context of care)
– Mutual Respect (team members are honest,
respectful of each other)
– Mix of Social and Task-Related Interactions (have fun,
but be productive)
Chapter Four
CONSUMER COMMUNICATION AND
PUBLIC MESSAGING
Knowledge of Palliative Care
• In 2011, a national poll revealed that 7 in 10
Americans are not knowledgeable about
palliative care
• Providers are also unfamiliar with the scope of
palliative care, equating palliative care to
hospice
Definition of Palliative Care
• Palliative care is specialized medical care for people
with serious illnesses. Its goal is to provide relief from
the symptoms, pain, and stress of a serious illness –
whatever the diagnosis – to improve the quality of life
for both the patient and the patient’s family.
• Palliative care is provided by a team of doctors, nurses,
and other specialists who work with a patient’s other
doctors to provide an extra layer of support. Palliative
care is appropriate for all patients suffering from
serious illness - at any age and at any stage - and can
accompany curative treatment.
Key Messages to Convey
about Palliative Care
Palliative Care:
• Helps provide the best possible quality of life
• Helps manage pain, symptoms, and stress of
illness
• Is a partnership between patient, family, and
healthcare providers
• Provides the patient and family an extra layer of
support
• Is appropriate at any age and at any stage of a
serious illness, alongside curative treatment
Resources for Palliative Care
Communication
• Vitaltalk (vitaltalk.org)
– Advanced communication skills resources and courses
for professionals focused on balancing honesty with
empathy, when discussing serious illness.
• Palliative Care Communication Institute
(pccinstitute.com)
– Free teaching materials to advance a patient-centered
training program called COMFORT– designed to teach
communication strategies for patient-centered
palliative care.
Chapter Five
COMMUNICATION ETHICS
Communication Ethics
• Ethical communication is a form of care, subject
to ethical norms:
– Respect for personhood
– Minimize harm
– Maximize benefit
• Cecily Saunders summarizes an approach to
sensitive communication: “The real question is
not ‘what do you tell your patients?’ but rather
‘what do you let your patients tell you?’”
Palliative care as a moral practice
• Goals of practice need to be well-defined and
resonant with larger social values
• Palliative care must have shared internal values
that promote the goals of practice
• Palliative care provides “agency” to patients,
allowing care to be patient-centered, enabling
the patient to develop and exercise a sense of self
by engaging with the world in a manner that sets
and achieves goals by doing things for oneself.
Communication as an Ethical
Obligation
• Communication should seek to:
– discern and incorporate the values and
preferences of patients and family members,
thereby respecting their autonomy
– minimize the risk of avoidable harm, thereby
respecting nonmaleficence
– maximize benefit to patients and families by
engaging processes and producing outcomes that
are consistent with how they would define “good,”
thereby honoring beneficence.
Communication within the Team
• Moral agency of team members is a significant
part of the ethical equation
• Be attentive, self-aware, and reflective to the
emotional responses of oneself and other
healthcare providers
• Consider professional hierarchy in healthcare
Chapter Six
COMMUNICATION IN PALLIATIVE
SOCIAL WORK
Social Work Communication
• Diagnosis
– Tailor information to individual and family needs
– Address Psychosocial concerns
• Plan of Care
– Organize and interpret patient and family data
• Advance Care Planning
– Support patient autonomy, self-determination
– Include caregivers
Social Work Communication
• Pain and Symptom Management
– Educate patient and family about medication, side
effects
– Teach complimentary and alternative techniques
• Practical support
– Discuss home care needs, insurance, financial needs
• Assess patient distress
– Provide supportive counseling
– Reinforce strengths and coping mechanisms
Social Work Communication
• Religious, spiritual, existential issues
– Discuss degree of religiosity, use of spirituality as
coping mechanism
– Discuss guilt, regret, need for forgiveness
• Evaluate role of culture in understanding of
illness, role of language, decision-making style
• Integrate cultural values into decision-making
Social Work Communication
• End of life communication
– Discuss practical aspects of patient’s death
– Discuss hopes and fears for patient and family
– Educate about expected course
• Talking about hospice
– Participate in intake assessment
– Identify psychosocial concerns
– Target caregivers with high bereavement distress
Chapter Seven
COMMUNICATION IN PALLIATIVE
MEDICINE
Why Communication in Palliative
Medicine Matters
• Findings across research studies illustrate a
need for communication:
– Only half of all patients discussed hospice with
any doctor two months before death
– More than half of lung and colorectal cancer
patients thought their chemotherapy was curative
– Only a third of lung cancer patients understood
that radiation would not cure them
– Less than 20% of patients had accurate awareness
of their prognosis
Key Barriers to Communication
• Patient factors
– Emotional overwhelm, language barriers, cultural
barriers may create mistrust of physicians; patients
may have limited health literacy, over-estimate cure
• Physician factors
– Lack of proper communication skills or training in
managing emotions; fear of causing pain or taking
away hope
• Healthcare factors
– No incentives for patient-centered communication,
multiple transitions of care, multiple subspecialists
SPIKES: A strategy for sharing poor
prognosis/serious diagnosis
S: Setting
P: Perception of
condition/
seriousness
I: Invitation from
patient to give
information
•Arrange for some privacy
•Involve significant others
•Sit down
•Make connection and establish rapport with the patient
•Manage time constraints and interruptions
• Determine what the patient knows about the medical
condition or what is suspected.“Before you tell, ask.”
• Listen to the patient’s level of comprehension
• Accept denial but do not confront at this stage
• Ask patient if s/he wishes to know the details of the
medical condition and/or treatment
• Accept patient’s right not to know
• Offer to answer questions later if s/he wishes
SPIKES continued
KKnowlege:giving
medical facts
E - Explore
emotions and
sympathize
S – Strategy and
summary
•Use language the patient would understand.
•Consider educational level, socio-cultural background, current
emotional state
•Give information in small chunks, warn the patient you are about
to give bad news
•Check whether the patient understood what you said
•Respond to the patient’s reactions as they occur
•Give any positive aspects first
•Prepare to give an empathetic response:
•1. Identify emotion expressed by the patient (sadness, silence, shock etc.)
• 2. Identify cause/source of emotion
•3. Give the patient time express his or her feelings, then respond in a way
that demonstrates you have recognized connection between 1 and 2.
•Patients who have a clear plan for the future are less likely to feel
anxious and uncertain-so clarify their understanding
•Close the interview
Chapter Eight
COMMUNICATION IN PALLIATIVE
NURSING
Nurse Communication
• Participates in patient assessment and in
collaborative care planning with team
– Nurses rated by public as most trusted healthcare
team member
• Uses symptom assessment instruments to
evaluate pain, take pain history
• Uses verbal or symbolic means appropriate to
patient to assess coping
Nurse Communication
• Facilitates communication within circle of care
– Patient, family, healthcare team, other providers
• Assessment and attention to spiritual issues
and concerns for patient and family
• Elicits cultural identification, strengths,
concerns, needs
– Determines cultural background as source of
resilience and strength for patient and family
Nurse Communication
• Communicates signs and symptoms of dying
process to patient, family, others
• Explains what to expect in the dying process
and provides support post-death
• Contributes to ongoing discussion about goals
of care, promoting understanding of patient’s
preferences
Barriers to Nurse Communication
• Personal
– Cultural norms, shyness, fears, fear of mortality,
unresolved personal losses
• Educational
– Few nursing schools offer instruction in palliative care
– Lack of experience with death, dying, and
communication
– Younger generation of nurses have had little exposure
or practice with face-to-face verbal communication
• Professional
– Inadequate nursing education and role ambiguity
Chapter Nine
COMMUNICATION IN PALLIATIVE
CARE CHAPLAINCY
Basics of Chaplain Communication
• Assist in Meaning-Making
– Global meanings are a person’s most basic values
and beliefs about the way the world works
– Situation meaning is the meaning given to a
particular event such as illness or death
• Emphasis on active listening rather than
information-giving
• Do not proselytize or impose one’s beliefs on
others
Barriers
• Defining chaplaincy
– “Being present” is too vague
– Any two chaplains do not describe their work in
the same way
– Need to translate spiritual work into medical
language and processes
• Healthcare team members do not know how
to conduct spiritual assessment; refer to
chaplain
Chaplain as Team Member
• Expert on spiritual subject matter
• Offer guidance on spiritual communication
• Provide understanding about family culture
and spiritual traditions/rituals
• A chaplain is often viewed as a neutral,
trusted person as compared to other
healthcare providers
• Assist with families who are awaiting miracle
cure
Future Work
• More research is needed to document
outcomes and accountability of chaplain
services
– Document the benefit of chaplain services
– Document patients’ spiritual needs ents
– Document interventions to reduce spiritual
distress
Chapter Ten
COMMUNICATION IN CLINICAL
PSYCHOLOGY
Clinical Psychologist in Palliative Care
• Four key roles:
– Assess and target treatment services for patients
– Provide education and supportive services to
families and caregivers
– Participate in educational and support activities
that assist the palliative care team
Provision of patient assessment
services
• Assessment Aims
– Symptoms, duration, and situational factors
associated with psychosocial health
• Assessment Approaches
– Interview and self-report questionnaires
– Neurocognitive functioning
• Assessment Domains
– Pre-morbid functioning, health literacy,
perception of illness
Provision of treatment services
• Goal-setting and Problem-solving
– Establishing goals grounded in patient values
• Psychotherapy
– Cognitive Behavioral Therapy
• Tools to modify dysfunctional thinking and behavior
– Existential Psychotherapy
• Helping patient confront the struggle of being human
– Psychotherapy at the End of Life
• Assist patient to achieve a respectful death, dignity
Psychologists’ involvement with
patients’ family systems
• Supporting family communication
• Cultural health beliefs
• ‘law of double death’ in families
– Awareness of likelihood of death, but do not
discuss their fears or concerns with one another
• ‘third person’ in families
– Families cannot discuss anxieties related to death
with patient, but can with other parties
The Psychologist as a member of the
interdisciplinary palliative care team
• Contribute patient information to team
• Educate staff
• Provide staff support and facilitation of selfcare as a team member
– Assistance with compassion fatigue, trauma