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:
– 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

•Arrange for some privacy

•Involve significant others
S: Setting •Sit down
•Make connection and establish rapport with the patient
•Manage time constraints and interruptions

P: Perception of • Determine what the patient knows about the medical

condition or what is suspected.“Before you tell, ask.”
condition/ • Listen to the patient’s level of comprehension
seriousness • Accept denial but do not confront at this stage

I: Invitation from • Ask patient if s/he wishes to know the details of the
medical condition and/or treatment
patient to give • Accept patient’s right not to know
information • Offer to answer questions later if s/he wishes
 SPIKES continued
•Use language the patient would understand.
•Consider educational level, socio-cultural background, current
K- emotional state
•Give information in small chunks, warn the patient you are about
Knowlege:giving to give bad news
medical facts •Check whether the patient understood what you said
•Respond to the patient’s reactions as they occur
•Give any positive aspects first

E - Explore •Prepare to give an empathetic response:

•1. Identify emotion expressed by the patient (sadness, silence, shock etc.)
emotions and • 2. Identify cause/source of emotion
•3. Give the patient time express his or her feelings, then respond in a way
sympathize that demonstrates you have recognized connection between 1 and 2.

S – Strategy and •Patients who have a clear plan for the future are less likely to feel
anxious and uncertain-so clarify their understanding
summary •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 self-
care as a team member
– Assistance with compassion fatigue, trauma