Palliative vs. End-of-Life Care

Care Approaches

• Palliative and end-of-life care differ, especially in their focus on comfort versus addressing final life stages. Nurses require skills in palliative care due to the increasing number of individuals living longer with chronic, life-limiting conditions.
• End-of-life care specifically addresses the period immediately preceding death.
• Palliative care includes end-of-life care but can extend for months or years.
• Palliative care can be given alongside curative treatments, while end-of-life care emphasizes comfort.
• Family-centered care forms a fundamental principle in palliative care.
• A "good" death aligns with the preferences of both the patient and their family.

Palliative Care Focus

• Improves quality of life regarding life limiting illnesses
• Can last from diagnosis to bereavement for months or years
• Administered concurrently with curative treatment

End-of-Life Care Focus

• Focuses on the end of life stage
• Time-limited care
• Occurs during acute events like accidents, illnesses, suicide, or homicide, or after chronic illnesses

Hospice

• Life expectancy is six months or less
• Curative treatments are discontinued

Palliative and End-of-Life Care Key Considerations

• Personal assumptions and biases about death and dying must be addressed
• Beliefs, attitudes, and experiences like the perception of family presence during death
• Personal assumptions and biases about people
• Cultural and spiritual beliefs
• Family involvement
• Includes family caregiving and their suffering, and siblings
• Interprofessional team involvement, including collaboration
• Bereavement care is the care that continues after death
• There can be barriers to optimal palliative and end-of-life nursing care

Nursing Role in Emotional Support

• Emotional presence and understanding family dynamics are important responsibilities of nursing
• Includes the importance of being with the patient
• "The gift of self" refers to being physically and psychologically present for patients and families
• Presence helps alleviate suffering and distress
• Presence strengthens relationships, promotes healing and improves patient satisfaction

Family Presence Importance

• Essential for patients' emotional and physical well-being
• Provides comfort and security during critical illness or life transitions
• Reduces anxiety and distress
• Enhances patient recovery and coping mechanisms
• Improves communication between healthcare teams and families

Competent Family Care

• A holistic approach should be used when treating the entire family unit, and not just the individual
• Relationships should be established
• Engage with family members
• Understand their values, beliefs, and concerns
• Information should be provided
• Communicate clearly about the patient’s condition, treatment, and expectations
• Guidance on available resources and support systems

Therapeutic Questioning

• Engages the whole family and ensures collaborative decision-making
• Key steps include:
• Assessing the illness's impact on the family
• Encouraging problem-solving and adaptability
• Using interventive questioning to facilitate change and adaptation
• Seeking family feedback about their needs and concerns

Nursing Actions

• Actions to Support Family Presence involves:
• Anticipating family needs and provide relevant information
• Clearly explaining when and how clinical updates will be provided
• Educating on treatment procedures in simple language
• Providing contact details for follow-up questions
• Encouraging family involvement in patient care and decision-making

Best Nursing Practices

• Think Family: Always consider the family's role in the patient’s health journey
• Provide competent, compassionate care that includes both the patient and their family
• Be Present: Offer emotional and psychological support in addition to medical care

Family Involvement in Care

• The role of family caregivers in managing illness and the impact of chronic conditions on family dynamics are:
• Caregivers are at risk of experiencing emotional, mental, and physical health problems
• Incorporate educational and counseling needs into a treatment plan
• Family caregivers play a crucial role in managing chronic illness by:
• Monitoring Conditions and Behaviors: Keeping track of the patient's health status and changes
• Interpreting and Differentiating Behaviors: Understanding what is normal versus what may be serious
• Providing Hands-on Care: Assisting with daily activities and medical needs
• Making Decisions: Making informed choices about treatment and care plans
• Developing Care Routines: Establishing consistent routines to manage the illness effectively
• Problem Solving: Addressing issues and finding solutions to care-related challenges
• Teaching Self-care Management: Educating the patient on how to manage their condition independently.
• Identifying Resources for Respite Care: Finding support services to provide temporary relief for caregivers

Caregivers

• Are essential in ensuring the well-being of individuals with chronic illnesses
• They balance multiple responsibilities and face the emotional, mental, and physical health challenges themselves

Chronic Conditions Impact

• Chronic illnesses impact families in many ways:
• Depends on the type of illness, family functioning, and the time phase of the illness, from acute phases to the end of life
• Nurses enhance care for individuals with a chronic illness

Family Communication

• Effective, honest, and sensitive communication supports patients and their families
• It's essential for interaction with those receiving care, promoting health and providing comfort

Communication Goals

• Should be to form relationships, convey information, clarify perceptions and manage distress
• Requires a transmitter and a recipient

Communication should be:

• Effective
• Make sure questions are asked
• Information is given and understood
• Comfort is provided
• Consider the ways how messages are sent and receive

Privacy and Communication

• Is essential for building trust
• Electronic medical records, HIPAA, PHI, and Rights to Information should be protected

Miscommunication

• Miscommunication/communication breakdown occurs when:
• Communication is not clear or received
• Meanings are not grasped, or inappropriate interpretation occurs
• There is failure to listen or faulty assumptions are made
• All these can lead to medical errors and cause unnecessary suffering

Relationship-focused communication

• Involves building trust, asking questions, listening, informing and giving feedback

Family Unit

• Family must be considered to provide proper care
• Family structure types and changes within family roles must be recognized

Family Unit Care

• Requires healthcare providers to consider the needs of the entire family unit as a unified whole
• Acknowledges that health and illness impact not just the individual
• Effective care must address these broader dynamics

Family Care Challenges

• Overly demanding provider-patient staffing ratios
• Restricted family visitation
• Health care systems focused on a provider-centric model of care
• Unequal distributions of power
• Lack of time to provide adequate information and support
• Communication difficulties
• Limits of fiscal resources

Individual and Family Health Care Needs should establish

• Clear information, adequate supports, self-management skills, navigation of health care systems and a voice in the care they receive

Family Structure Types

• It is important to understand the different types of family structures
• Doing so, allows to understand how they influence care needs
• Structures can have varying dynamics and support systems
• These are crucial for tailoring care appropriately

Family Roles

• Roles can change in time, which affects health, impacting care
• Recognize these changes helps in providing comprehensive and supportive care that meets the evolving needs of both the patient and their family

Support Through Transitions

• Family roles change in response to illness
• It is important to support families during these transitions

Family Caregiving

• Caregivers are at risk of experiencing emotional, mental, and physical health problems
• Includes following educational and counseling needs into a treatment plan involves:
• Monitoring conditions and behaviors
• Interpreting and differentiating normal and expected behaviors from different and serious ones
• Providing hands-on care
• Making decisions
• Developing care routines
• Problem solving
• Teaching self-care management
• Identifying resources to assist with respite care

Family Structure

• Caregiving depends on family structure, whether child caregiving for an adult, families caring for children living with a chronic illness, adolescents with chronic illness transition to adult services

Transitions

• Occur: when transitioning from one provider to another, during hospital discharge, when transitiong from nursing home to hospital, when switching from private care to medicare

Transfer plans should involve

• Introducing the concept of transition early in the care relationship with the family
• Holding family meetings
• Assessing the adolescent's ability to provide self-care
• Designing educational programs to meet the needs of the adolescent/young adult
• Holding discussions about the adult health care environment, insurance coverage, and health policy changes
• Having discussions about how the parents may need to move to a more supportive and collaborative model of decision making
• Providing the family with a list of adult health providers
• Introducing independent visits with the pediatric health care provider
• Arranging for an introductory visit with an adult provider
• Identifying a transition coordinator

Sibling Reactions

• Guilt
• Pressure to be the “good child”
• Resentment/anger
• Loss and isolation
• Shame/embarrassment
• Increased responsibilities
• Increased empathy, patience, resiliency, sensitivity, and compassion

Family Nursing Intervention

• During chronic illness involves abilities to incorporate medical regimens into their daily routines via remediation, redefinition, realignment
• Involves reeducation
• Family health routine should focus on:
• Self-care, safety and prevention, healthy habits and high-risk behaviors, mental health, family care, illness care, and family caregiving
• Supporting families through transitions is important to ease the transitions. Transitions can include a new provider, hospital discharge, nursing home or switching to medicaid

Transfer Plans

• These should introduce the concept of transition early, assessing ability to provide self-care, education, and transition coordination

Postpartum and Maternal Health

• Recognize and support mental health concerns like postpartum depression
• Understand its impact on maternal-infant attachment

Postpartum Depression

• Affects up to 80% of mothers, causing mild distress
• PPD symptoms include:
• Sadness, frequent crying, disinterest in appearance or activities, as well as fatigue, sleep disturbances, and suicidal thoughts

Nursing Intervention

• Nurses should use screening tools (Postpartum Depression Predictors Inventory)
• Involve partners and family for support
• Encourage self-care strategies

Poor Parent-Infant Attachment Risks

• Separation from the infant, lack of knowledge about infant behavior, mental illness, stress, or chronic illness, and family history of poor attachments

Poor Parent-Infant Attachment Indicators

• Annoyance at crying, verbal dissatisfaction with the baby, failure to respond to the baby’s needs, lack of spontaneous touching or holding, or eye contact

Nursing Intervention

• Nurses should provide education and awareness, support parent-infant bonding, address mental health concerns, and connect families to resources and follow-up care

Chronic Illness and Bereavement

• Support families coping with chronic illness and grief
• Support an understanding of how these experiences affect the family unit

Chronic Illness

• Impacts families depending on illness type, the family's functioning, and the illness phase
• Nursing must address the health needs of a multicultural society, remain culturally knowledgeable, and ready to adapt to changing needs and beliefs, and language, and varying health

Theoretical Chronic Illness Understanding

• Use the Ethnocultural Gerontological Nursing Model (ECGNM)
• Rolland’s Chronic Illness and the Life Cycle Framework
• Family Management Style Framework (FMSF)
• Family Health Model (FHM)

Ethnocultural Gerontological Nursing Model

• Integrates cultural factors into family nursing
• Includes focusing on diversity with an aging population for general populations
• Focus focuses on both the differences and similarities within cultural groups
• Gives a special focus on the strengths of individuals, families and generational cohorts within the communities in which they live

Micro- and macro-social ties

• Nurses can best assess how various forces intersect and influence individual, family and ethnocultural groups interpretation of health, illness and life events in various phases of their lives

Top and lower frames

• Top and lower frames of the model list macrosocial factors that include historical, political, economic and public policy factors along environmental climate and stereotypes
• The lower frame includes group influences such as discrimination, health and self care traditions
• Running across the center are microsocial personal dimensions and sociocultural ones that affect that influence outcomes

Conceptual Framework

• Successfully used to analyze various family beliefs, knowledge and experiences
• Provides a framework for conducting a more comprehensive assessment of individuals and families
• Provides better support via custom tailoring

Rolland's Model

• Helps healthcare professionals understand why different families react differently to chronic illnesses
• Explains how chronic illnesses affect families differently based on 3 main factors:
• Illness Type such as onset and the course of the illness
• Time Phases of the Illness that may include diagnosis, the chronic phase or terminal phase
• Family function as it relates to organization and structural patterns

Family Management Style Framework

• Helps nurses understand how families with a child integrate management of the chronic illness with their everyday family life
• It serves as a family assessment tool to identify family needs via childhood illnesses, dementia or parental cancer

Five Family Management Styles

• Thriving; Highly adaptable, positive outlook
• Accommodating; Adjusts well but faces challenges
• Enduring; Struggles but maintains stability
• Struggling; Faces ongoing stress and difficulties
• Floundering; Overwhelmed, lacks effective coping mechanisms

Familiy Structure Factors

• How parents define and manage illness
• How they perceive consequences and balance family life

Four Medical Regimen Adoptions

• Remediation- correcting issues in caregiving
• Redefinition; Changing view of illness/condition
• Realignment: Adjusting family roles and routines
• Reeducation: Learning new caregiving techniques
• Focus areas for family safety focus on self-care and safety, healthy habits and risk reduction, mental health support, also illness and family caregiving strategies

Nursing Practices

• Understanding family adaptation to chronic illness is essential
• Nurses should use FMSF and Rolland's Framework to assess family needs
• Improve illness management and quality of life with family-focused interventions
• Caregivers and families managing chronic conditions must have Policy support