Textbook of Palliative Care Communication

Section V: Clinical Communication Topics

PATIENT-CENTERED COMMUNICATION

Chapter 29

Patient-Centered Communication

• Patient-centeredness– Based on the biopsychosocial model of medicine

that accounts for biological, behavioral, psychological, and social dimensions of care

– Involves communication that recognizes expression of symptoms as well as emotion, concern, feelings

Patient-Centered Communication

• Based on six main functions:1) fostering the patient-provider relationship2) providing and receiving information3) responding to emotions4) managing uncertainty5) making decisions6) enabling patient self-management

Skills for Patient-Centered Communication

• Name the problem or issue– Articulate each person’s perspective and come to

agreement on the main issue• Clarify the facts– Check understanding by asking verbal questions

• Address negative emotions– Identify, acknowledge, validate emotions

Skills for Patient-Centered Communication

• Frame an uncertain prognosis– Determine the source of uncertainty and frame

information based on what is known and unknown• Encourage participation– Provide opportunities and prompt each person’s

preferences• Teach self-activation– Represent and advocate for one’s interests and

desires

CARE COORDINATION AND TRANSITIONS IN CARE

Chapter Thirty

Care Coordination and Provider Communication

• Care coordination involves deliberate organization of patient care activities AND sharing information among participants, ensuring patient preferences are known

• Care coordination relies on shared decision-making between provider, patient, family– Improves engagement, reducing uncertainty

Goals of Care

• Common goals of care: – Be cured, live longer, improve function, be

comfortable, achieve life goals, support for family

TRUST, HOPE, AND MIRACLESChapter Thirty-One

Trust as a “Pre-Existing Condition”

• Trust is a “pre-existing condition,” and hope is much more than a coping strategy

• Issues of trust are due to psychosocial and/or cultural predispositions– Prior healthcare experiences– The patient’s ability to trust providers

• Issues of power inherent in the patient-healthcare provider relationship– Status-based power

Context of Hope and Denial

• Insistence on a miraculous cure also may be a “necessary rest-stop” on the road to acceptance

• Provider fear of giving “false hope” to patient, family– the patient believes in the power of faith to

intervene, not the miracle– Provider needs to recognize that hope is real, hope is

energizing, and hope is at the center of healing

The African-American Community

• African-Americans’ experiences with this country’s healthcare system– segregated hospitals– breaches in trust – a legacy of poor access

• The African-American community is also largely religious-oriented

AMEN PROTOCOL

• A conversational tool to facilitate discussions focused on hope for a miracle.

• The palliative care provider steps out of the provider role for a moment and responds as a human being, whether he or she is a religious person or not.

AMEN Protocol

• Affirm the patient’s belief. Validate his or her position: “Ms X, I am hopeful, too.”

• Meet the patient or family member where they are: “I join you in hoping (or praying) for a miracle.”

• Educate from your role as a healthcare provider: “And I want to speak to you about some medical issues.”

• No matter what; assure the patient and family you are committed to them: “No matter what happens, I will be with you every step of the way.”

PHYSICAL PAIN AND SYMPTOMSChapter Thirty-Two

Communication about Pain

• Cultural background strongly influences:– Pain perception and reporting about pain– Pain expression (e.g., stoicism)– Descriptions of pain– Language translations can be problematic– Acceptability of treatment plans

Communication about Symptom Management

• The patient’s and family’s religious beliefs need to be explored

• Do not assume you know or understand patient’s/family’s beliefs because they identify with a certain cultural/religious background

• Review the advantages and side effects of medication with patient/family– Use plain language and translate medical terminology– The Plain Language Planner for Palliative Care ©

Complications of Pain Management

• Risk of chronic pain management addiction– Overwhelming prevalence of addiction disorders

across the United States• Patients who are at high risk of opioid abuse

should be screened• Providers should discuss mental health

disorders, social factors, personal or family history of abuse, employment and legal issues related to substance use or distribution

Communication about Pain Management at End of Life

• Pain histories may be difficult or impossible to obtain– Rely on patient observation, bedside staff, prior

providers, and family members– Nonverbal scales are available

• Maintain frequent communication with family to educate on pain from disease progression and pain management side effects

COMPLEMENTARY AND ALTERNATIVE MEDICINE

Chapter Thirty-Three

Complementary and Alternative Medicine (CAM)

• Defined as non-mainstream approaches that go together with, or in place of, conventional medicine

• CAM includes– natural products such as herbal medicines– mind-body practices such as yoga, guided imagery, and

tai chi– manipulative body-based practices that include

chiropractic and message therapy.

CAM and Palliative Care

• Talking about CAM modalities requires building a relationship, establising a “therapeutic alliance”– Help patient explore unknown environment of

own death and dying– Understand the patient's psychological challenges

(anger, resignation), physical symptoms (pain), and their needs or concerns

Communication about CAM

• When talking about CAM– Be mindful of cultural setting (cultural belief

behind CAM intention)– Use metaphors to explain, adjectives to comfort– Provide reliable evidence of effectiveness– Address strengths and limits of CAM therapies

The goal of communication about CAM is to build a therapeutic alliance with the patient

Building a Therapeutic Alliance

• Convey compassion, empathy, and acknowledge the patient’s dignity and autonomy

• Recognize the patient’s biopsychosocial-spiritual (holistic) needs and wishes

• Ensure sensitivity to, and respect for, the patient’s concerns and values

• Adopt humanistic and ethical principles of care

COMMUNICATING ABOUT LIFE SUPPORT, ARTIFICIAL HYDRATION, AND NUTRITION

Chapter Thirty-Four

Discussing Artificial Nutrition and Hydration (ANH)

A very common fear is that the patient will suffer from thirst and hunger, if ANH is removed.

• Communication should focus on educating family about the following:– Remind them that loss of appetite and thirst is normal – Explain that continuing ANH can cause patient discomfort and

create more complex symptoms– Describe how the body no longer needs large amounts of energy

and the patient’s digestive system is progressively slowing down• Teach the family to keep the patient’s lips moist, using a

swab.

Use Simple Language To Discuss Life Support

Previous Experiences Frame Your Ability to Make Decisions

• Take the opportunity to step back before having difficult conversations with patients.

• Reflect on what is making it hard for you to begin the conversation. – Is there an unresolved experience preventing you?– Did you suffer emotional harm? – Ask yourself, how is holding onto that experience

going to help you in the present moment or keep you from being honest with your patient?

ADVANCED CARE PLANNINGChapter Thirty-Five

ACP Conversation

• Goal is to answer two key questions:– What do we need to think about when making

decisions about your care?– If you are unable to participate in healthcare

decision-making, to whom should we speak?

ACP Discussion Points

• ACP should be part of the routine practice of palliative care admission

• Assessment of patient competence– Patient must be able to understand and reflect on

illness and values• Confirmation or appointment of substitute

decision-maker– Known as proxy, this person should participate in team

discussions• Preferred place of care

Barriers and Enablers to ACP Discussions

• Public’s lack of knowledge of ACP• Who is responsible for ACP?– Unclear role among multiple providers

• Patient/family not ready to talk about ACP• High symptom burden impedes patient

involvement• Interpersonal and family relationships• Cultural barriers• Time

Conversation Starters for ACP

• Upon admission to palliative care– Discuss and confirm treatment preferences at first

meeting (e.g., talk about planned or refused treatments)

– Verify ACP status (e.g., is there already ACP in place?)

– Frame as part of routine provision of palliative care-intake process

– Identify primary caregiver, family relationships– Assess patient understanding of illness

SEXUALITYChapter Thirty-Six

Sexuality and Touch

• Human need for physical closeness through touch can communicate comfort, caring

• Physical expression of connection and closeness involves communication about sexuality and the power of touch

Communicating Through Touch

• Touch is the “physical” language of love, affection, support, validation

• Procedural Touch– Touch because of tests, procedures, examinations– Typically unpleasant and distressing

• Expressive Touch– Communicates concern and affection while

respecting and recognizing patient’s humanity

T.O.U.C.H.

• An assessment and intervention tool for communicating about sexuality

• Take a history of touch and its place within the caregiver relationships

• Organize touch responses using body mapping to help the patient identify where she/he likes and does not like to be touched

T.O.U.C.H.

• Unify physical touch with emotional feelings and the resulting feelings of connection

• Co-create opportunities for the patient being touched by the partner or loved one

• Honor the effort and risk-taking required by the patient, partner, or loved one to reinvest in and make gains with touch

SPIRITUALITYChapter Thirty-Seven

Defining Spirituality

• Form and content of a patient’s spirituality may vary significantly from patient to patient.

• For the purposes of this chapter, spirituality is defined as an individual’s beliefs, values, behaviors, and experiences related to ultimate meaning.

Spiritual Needs in Palliative Care

• Overcoming fears• Finding hope• Discovering meaning in life• Desire to talk about peace, death, and dying• Spiritual support from the healthcare team

can augment support from faith communities or serve as primary spiritual support.

SACR-D

• A clinical guide to promote healing by acknowledging, listening to, and providing a compassionate presence to deeply spiritual questions

SACR-D

• Self-awareness– Provider attunement, degree of openness

regarding spirituality• Assessment– Spiritual assessment to determine role and

importance of spirituality in person’s life• Compassionate Presence– Tone of care conveyed through body language and

attitude

SACR-D

• Refer to Additional Spiritual Supports– The act of referring to a spiritual care provider– Spiritual care providers have specialized

knowledge in assessment and spiritual care interventions

• Dialogue– Need to understand a person’s spirituality in

language that is accessible to them.

GRIEF REACTIONSChapter Thirty-Eight

Grief and Bereavement

• Psychological and Psychiatric domain of care under National Quality Project Guidelines

• Begins at initial contact with care team• Patients, Caregivers, and Providers all

experience loss, and therefore, grief• Skillful communication is important to enable

discussions about grief and provide bereavement care

Understanding the Terms

• Grief – normal reaction to loss– Physical loss and symbolic or psychosocial losses

• Anticipatory Grief/Preparatory Grief– The grieving process occurring prior to the

patient’s death• Complicated Grief, Prolonged Grief Disorder,

Complex Persistent Bereavement Disorder– Bereavement process marked by severe morbidity

representing a clinical disorder

Team Communication for Bereavement Care

• Monitor patient and caregiver for current condition and risk factors for anticipatory grief– Discuss team support needed for patients and caregivers with high risk

factors• Make a team decision on what terms will be used to discuss grief

– Complicated grief, Prolonged grief disorder, or Persistent complex bereavement disorder

• Provide education so that team members are able to recognize signs of risk for disenfranchised grief

• Encourage team members to reflect on their own grief in order to recognize patient’s/family member’s grieving process and their needs.

Communication Skills for Grief and Bereavement

• Elicit descriptions of patient and caregiver’s personal experience of loss– “What has it been like for you since you received the diagnosis?”

• Explain that the grieving process affects every thought and emotion in a person’s life

• Provide information and facilitate access to professional and community resources

• Normalize through education by explaining normal range of experiences– Emphasize that others experience similar symptoms – Acknowledge that although it does not feel normal, grief is normal