Textbook of Palliative Care Communication Section III: Patients and Families

PATIENT EXPERIENCE OF ILLNESS Chapter Sixteen

Patient Experiences Patients tell stories to share their experiences Context influences a person’s experiences on two levels: – Macro Level Access to care, social justice, regulation, politics, privilege, power Culture, language, values, beliefs – Micro Level Impact on institutions, providers, patients, and families Providers need to focus on the way they listen

Theoretical Framework for Patient Experiences Broyard – Illness is a drama that brings on a heightened sense of self – Providers need to honor and explore the individual experience of illness – Providers need to focus on the ways that they listen to patients

Theoretical Framework for Patient Experiences Sontag – Metaphors used to describe the illness experience can isolate or objectify those who are sick – Metaphors can bring order to the experience or create chaos for those who do not understand The challenge lies in discovering the effectiveness of metaphor in a patient’s story – Are they comfortable or empowering? – Are they incongruous with the nature of a specific person, leaving them feeling blamed, defeated or demoralized?

Theoretical Framework for Patient Experiences Kleinmann – the concept of mini-ethnography Encourages the healthcare professional to place themselves in the lived experience of patient and family, cognitively, emotionally and with imagination. Let symptoms and illness become the disease, and persons become the patient – Move beyond checklist, lab reports to actively listen to the patient’s words

FAMILY MEMBER EXPERIENCE OF CAREGIVING Chapter Seventeen

Family Caregiver “refers to any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition” --- National Family Caregivers Association

Changing Relationship and Role Caregivers experience burden, distress, and conflict Majority of caregivers work outside the home Family communication patterns and roles, social networks, and relationship quality all change Communication about end of life is especially challenging Feelings of guilt, regret, shame, failure arise

Impact of Caregiving Physical Well-Being – Most common problems are sleep and fatigue Social Well-Being – Care tasks interfere with caregiver’s social connections, activities Psychological Well-Being – Caregivers report less emotional support than patients – Caregiver mental health worse for female caregivers

Assessing Caregivers Caregivers report performing complex medical and nursing tasks – With little or no preparation! It is imperative to assess family – Tools are limited, with a need to focus on assessing family communication and developing tools that go beyond measuring communication as information receipt

FAMILY CAREGIVER COMMUNICATION GOALS AND MESSAGES Chapter Eighteen

Goals and Messages Multiple Goals – At the minimum, any individual is simultaneously attempting to achieve tasks as well as engage/manage relational goals. – Provider’s role is to attempt to understand what the competing goals are for caregivers and patients, and what goals have not yet been realized

Family Communication Family communication patterns detail the “rules” of family talk scope of topics, frequency, and degree of obligation Providers must adapt their clinical communication to meet family communication needs There are four specific caregiver communication types Manager Carrier Partner Lone

Caregiver Communication Manager Caregiver – Heavily prepared research material – Directives about treatment plans Carrier Caregiver – Heavy and trusting reliance and dependence – High frequency of questions with little challenge to answers

Caregiver Communication Partner Caregiver – Various family members present at different times – Offers to help the provider team Lone Caregiver – Leary and has potential for defensiveness – Talk that fixates on immediate physical needs of patient

CULTURAL CONSIDERATIONS IN SERIOUS ILLNESS Chapter Nineteen

Culture and Palliative Care Cultural shift in demographics occurring nationally Patients report illness and symptoms that are culturally bound (e.g., suffering) National Consensus Project for Quality Palliative Care, Guideline 6: Culture – Conduct cultural assessment of patient, family as a core component of palliative care

Disparities Differences in morbidity, mortality, and outcomes exist among specific groups – Sub-groups of culture, race, ethnicity, or socio- economic status Language barriers contribute to disparities in non-English speaking groups

Social Determinants of Palliative Care Health Access and Care Utilization – Impacted by insurance status, income level, lack of usual source of care, cultural factors Acculturation – Maintaining one’s original culture and establishing bonds with the new culture

Cultural Determinants Ethnic Identity – country of origin, degree of acculturation, reasons for migration Communication – verbal and nonverbal preferences for communicating Social Organization- sources of social support

Cultural Determinants Time and Space – view towards past, present, and future time; socially accepted space between individuals when communicating Religion, spirituality, and taboos – used as source of strength, reference for meaning of life Death and dying practices – Beliefs and practices toward dying, expressing grief

FAMILY CONVERSATIONS ABOUT IN-HOME AND HOSPICE CARE Chapter Twenty

Naturally Occurring Conversations Goes beyond patient self-reports Actual conversations as they occur Allows for examination of real-time communication Conversation Analysis method – Examines how speakers work together to produce meaning – Specialized transcription of interactions used for analysis

Family Conversation Study of phone calls among family over 13 months (61 phone calls) Chapter examines four of these calls Mom, early 50s, dying of cancer Includes conversations between patient, caregiver (husband), and child (adult son)

Family Conversation “They will just not warehouse her” – Talking about transition from hospital to home – Patient not happy with moving home “I kinda screwed up the medication” – Unintentional mistakes made by caregiver – Introduces new hospice nurse to son

Family Conversation “What’s the doctor saying… you do this for the ones you love” – Family trying to judge length of time left – Assessment of caregiver “It’s nuts around here… it hurts… and they help me a lot” – Hospice nurse helping with pain – Use of humor to minimize irregularity of routine

Health Intervention and Campaign Phone calls adapted into a professional theatrical production to facilitate: – Counseling sessions and workshops for patients and families – Training sessions for providers – Discussions about ways to improve communication among team members