Principles of Suffering Flashcards
Suffering - definition
Aversive experience characterised by the perception of personal distress that is generated by adverse factors. Results in reduced quality of life.
Defining characteristics:
- Presence of perceptual capacity (sentience)
- Factors that undermine QOL are distressing
- Experience is aversive
Post-traumatic growth - definition
Potential for personal development and net positive gain in overcoming situations of adversity and suffering.
Requires significant resources for coping and growth.
Rights regarding suffering
As per WHO, relief of pain and other symptoms is a right of patients with advanced and incurable cancer
Right to adequate provision of palliative care for the terminally ill has legal status in several countries. In Canada, 2017 alongside legalization of MAiD: “the Parliament of Canada recognizes the importance of ensuring that all Canadians have access to high-quality palliative care, especially in the context of physician-assisted death”
Causes of suffering: Physical symptoms
- Pain (interfering with thinking, sleeping, interactions, mood symptoms, fatigue)
- N/V
- Mood-related issues
- Dyspnea/cough
Causes of suffering: Psychological symptoms
- Anxiety, depression, confusion, insomnia are common in serious illness (cancer or non-cancer)
Factors influencing prevalence/severity include:
- Advanced disease
- Distressing physical symptoms (especially pain)
- Disability
- Unresolved previous feelings of loss or separation
- A lack of perceived support from at least one loved person
- Strained interpersonal relationships
- Controlling personality trait
- Difficulties adapting to the illness and its implication
- Economic concerns
- Impaired cognition
- Unsatisfactory communication regarding illness or treatment (especially if there was a precipitous disclosure of poor prognosis)
Spiritual and Existential Distress
- Spiritual well-being is one of the six domains of quality supportive care of the dying
- Unmet spiritual needs are common in patients with advanced cancer
Existential and Spiritual distress: Definition
Definitional themes:
- Relationship to God/higher power/reality greater than the self
- Not of the self
- Trancendence or connectedness to a bigger picture
- A conviction that there is more to life than what is observed materially
- Meaning and purpose in life
- Force of the person
- Integrating aspects of the person
Other themes:
- Communion with self
- Communion with others
- Communion with nature
- Communion with a higher being (faithfulness, hope, gratitude)
Common existential issues for patients with advanced cancer
- Hopelessness
- Futility
- Meaninglessness
- Disappointment
- Remorse
- Death anxiety
- Disruption of personal identity
Sources of Family Distress: Family Needs
Family needs
- Prompt and effective relief of patient symptoms
- Education around comfort care for family members
- Honest, direct, compassionate communication from care providers
Sources of Family Distress: Psychosocial distress
Psychosocial distress among family members
- Emotional strain
- Physical demands
- Uncertainty
- Fear the patient will die
- Alteration to roles and life styles
- Perceived inadequate of care services
- Financial concerns
- Ways to comfort patient
- Existential concerns
- Sexuality
- Conflict amongst family members
Anxiety, depression, and adjustment disorders are common. Higher risk in families with low cohesiveness and high conflict. Good communication mitigates risk.
Sources of family distress: Grief
- Anticipatory grief is common in the pre-terminal phase in chronic fatal illness
- The onset of this transition is generally heralded by a deterioration in the patient’s condition that challenges ongoing denial - typically unrecoverable weakness, loss of independence in ambulation and personal care, and loss of mental clarity
Sources of family distress: Caregiver burden
Caregiver burden
- Most patients die in the hospital setting, but most care prior to death is carried out at home by family members
- Home care involves heavy physical work of transfers, intimate care, and uncertainty
- May also be balanced against already established roles and responsibilities
Sources of family distress: Financial distress
- Significant financial and social costs to family, particularly when providing home care
- Many primary caregivers must leave work or lose their jobs, or lose income during leave
Sources of family distress: Caregiver conflicts
- Significant conflict can occur between family members regarding goals and type of care, limits of care, and aggressiveness of care
- Caregivers may also experience conflict between the desire to relieve symptoms yet preserve consciousness and avoid hastening death
Identifying families at risk of distress
Risk factors:
- Perceived lack of caregiver social support
- Caregiver history of drug/alcohol abuse
- Poor caregiver coping skills
- Caregiver history of mental illness
- Patient that is a child
- Global family function (low cohesiveness, high conflict)
Healthcare provider distress: Stressors
- Constant exposure to suffering, loss, and grief
- Patients may experience high morbidity and mortality
- High work pressure
- Frequent life and death decisions in ambiguous circumstances
- Interstaff conflict
- High consumer expectations
- Severe emotional distress in patients and families
Staff may also identify with patients who remind them of family members which can revive personal pain or heighten feelings of guilt or loss of control
Healthcare provider distress: Physician distress
- Most research based on oncologists
- Stress and burnout common amongst oncologists with patients with incurable cancer
Contributes include:
- Work/life balance issues
- Volume overload
- Inadequate staffing
- Challenge of keeping current with medical literature
- Pressures to do research/publish
- Mountain admin burden
- Delivering bad news
- Dealing with distressed, angry, or blaming patients and families
Positive attitudes and involvement with supportive/end of life care may be resilience factors
Assessment of suffering:
Patient Assessment
- Disease status and expected progression
- Functional status and anticipated future problems
- Understanding of disease and GOC
- Physical consequences of disease and coping
- Existential/spiritual issues
Family Assessment
- Willingness/ability to provide home care
- Other supports
- Family’s understanding
- Social context
- Family wellness (psychological, physical)
- Coping
Formulating a care plan
- Based upon assessment of suffering
- Assessment and plan must be re-evaluated regularly as patient evolves or at points of major change
- Medical condition and goals of care
- Description of involved family and professional carers
- Patient issues: physical, psychological, existential, social, communiciation, understanding
- Family issues: physical, psychological, existential, social, communiciation, understanding
- Professional carer issues: Staffing, training, resources, resource/need match, emotional coping
- Coping assessment: Patient, family, professional staff
- Contingency planning: Anticipated contigencies, planned interventions
Goals of care
- Ensure coordination between family, patient, and professionals as this is a common source of distress
Domains:
- Prolonging survival
- Optimizing comfort
- Optimizing function
Relative prioritization of goals provides an important context for decision making. Dynamic, and may change over time.
