Textbook of Palliative Care Communication

Section I: Communication Principles

OVERVIEW OF COMMUNICATIONChapter One

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

A HISTORICAL PERSPECTIVE IN PALLIATIVE CARE COMMUNICATION

Chapter Two

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 ForefrontNational 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

TRANSACTIONAL COMMUNICATIONChapter Three

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)

CONSUMER COMMUNICATION AND PUBLIC MESSAGING

Chapter Four

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.

COMMUNICATION ETHICSChapter Five

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

COMMUNICATION IN PALLIATIVE SOCIAL WORK

Chapter Six

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

COMMUNICATION IN PALLIATIVE MEDICINE

Chapter Seven

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•Sit down•Make connection and establish rapport with the patient•Manage time constraints and interruptions

S: Setting

•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

P: Perception of condition/

seriousness

•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 wishesI: Invitation from

patient to give information

SPIKES continued

•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

K- Knowlege:giving

medical facts

•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.E - Explore

emotions and sympathize

•Patients who have a clear plan for the future are less likely to feel anxious and uncertain-so clarify their understanding

•Close the interviewS – Strategy and summary

COMMUNICATION IN PALLIATIVE NURSING

Chapter Eight

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

COMMUNICATION IN PALLIATIVE CARE CHAPLAINCY

Chapter Nine

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

COMMUNICATION IN CLINICAL PSYCHOLOGY

Chapter Ten

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