Suffering CBM and Dignity Oxford and Coping Oxford

Question 1

What is suffering?

Answer 1

• State of severe distress that is personal, individual and subjective.
• Perception that something is actually or potentially threatening the integrity of one’s self and personhood.
• Recognition of one’s mortality
• Expressed as fear, sadness, anguish, abandonment, despair

Question 2

List sources of suffering in palliative care

Answer 2

• physical, social, psychological and existential distress
• associated with loss (self, relationships, control, purpose)
• role identity loss
• out of control when pain ++, source of pain unknown, meaning of pain, chronic pain.
• hopelessness - requests for hastened death
• feeling of being a burden
• spiritual pain

Question 3

What influence do health care providers have on patient and family suffering?

Answer 3

• positive and negative
• affirm sense of dignity and personhood
• negative: insufficicent information, not answering questions, uncaring communication, blunt communication
• suffering must be heard and accepted at face value
• normalizing feelings and responses

Question 4

Suffering in caregivers and families

Answer 4

• new role identities
• physical, financial, psychological dimensions of caregiving
• witnessing a loved one’s suffering
• poor QOL, more regret, high risk of MDD if eol conversations not happening with physicians
• more suffering in caregivers if aggressive interventions used.
• family members suffering proportional to patient’s suffering
  *

Question 5

Approach to alleviate suffering/ preserve dignity

Answer 5

• never assume basis of suffering.
• “Are you suffering?”

Questions to uncover sources of distress

1. “Are you frightened by all this?”
2. “Are there things even worse than this pain?”
3. “Are there things that you wish you could still do that have become difficult?”
4. “What do I need to know about you as a person to provide the best possible care?”

Question 6

Dignity conserving care

Answer 6

• A: Attitude
  
  • ​beliefs, assumptions we hold towards patients
• B: Behaviour
  
  • ​kindness, respect. acknowledge WHO the person is
• C: Compassion
  
  • ​awareness of suffering and desire to relieve it.
  • humanites, literature, art, self reflection on own humanity, vulnerability
  • look, touch, simple comments.
• D: Dialogue
  
  • ​mindful, sensitive communication
  • art of listening to what is said and unsaid.

Question 7

What can be done when suffering seems interminable?

Answer 7

• must be lived through and endured
• acknowledgment and bearing witness
• conveys their worthiness of our attention and respect.
• Psychotherapy:
  
  • life review
  • legacy therapy
  • meaning centred therapy
  • dignity therapy : tangible document from tape recorded sessions with the patient, augments sense of meaning and purpose
• Sedation : last resort and controversial

Question 8

Model of dignity in the terminally ill

Answer 8

• Illness related concerns:
  
  • symptom distress
  • physical and psychological distress
  • level of independence (cognitive and functional)
• Dignity conserving Repertoire
  
  • continuity of self
  • role preservation\
  • generativity
  • legacy
  • maintenance of pride
  • hopefulness
  • autonomy/control
  • resilience
  • living in the moment
  • maintaining normalcy
• Social dignity inventory
  
  • privacy boundaries
  • social support
  • burden to others
  • aftermath concerns

Question 9

Patient Dignity Inventory

Answer 9

• 25 point self report validated
• identify, track and measure dignity distress

Question 10

Dignity therapy with professional

Answer 10

• trained professional
• patient elicits memories, hopes and wishes for family members
• life lessons they want to share
• legacy content they wish to leave behind
• engagement with this process meant to enhance sense of meaning and purpose and self
• Sessions are recorded, transcribed and edited into a readable narrative or generativity document.
• patient can distribute as they like.

Question 11

Definitions of existential and spirituality

Answer 11

• relationship to God or higher power
• something greater than the self
• transcendance or connectedness to a bigger picture
• conviction there is more to life
• communion with
  
  • self
  • others
  • nature
  • higher being

Question 12

Common existential issues for patients with advanced cancer

Answer 12

• hopelessness
• futility
• meaninglessness
• disappointment
• remorse
• death anxiety
• disruption of personal identity

Question 13

Identifying families at risk of spiritual distress

Answer 13

• perceived lack of caregiver social support
• caregiver history of drug and alcohol abuse
• poor caregiver coping skills
• hx mental illness
• patient that is a child
• global family function (high conflict, low cohesiveness)

Question 14

Health care provider distress

Answer 14

• constant exposure to suffering, loss, grief
• high work pressure
• frequent life and death decisions in ambiguous circumstances
• interstaff conflict
• high consumer expectations
• severe emotional distress
• over identification with patients

Question 15

Formulating care plan for suffering

Answer 15

• medical condition and goals of care
• description of involved family and team
• patient issues : physical, psychological, existential, social
• family issues: same
• professional carer issues : staffing, training, resources, emotional coping
• Coping assessment : patient family staff
• contingency planning

Question 16

Describe a theory of coping

Answer 16

• appraisal of stressful situation
• coping response formulated and then reappraised

Question 17

Improving psychological coping

Answer 17

• Change conditions from threat to challenge (find meaning, goals, personal control)
• Encourage productive behaviour to achieve goals
• Maintain positive background mood

Question 18

Theory of Coping: Symbolic Immortality

Answer 18

• Ongoing process
• Creating new symbols of immortality
  
  • Biological (children)
  • Theological (life after death)
  • Creativity (creative legacy)
  • Feeling part of universe (nature)
  • Transcendance (spiritual connection to higher power)

Question 19

Coping Models: Sense of Coherence

Answer 19

• sense of confidence that things will work out
• conviction that life will continue to be meaningful and predictable
• requires comprehensibility, manageability, meaningfulness

Question 20

Five personality factors that help with coping

Answer 20

• Extraversion
• Neuroticism
• Agreeableness
• Conscientiousness
• Openness

These respond to stressors as challenges, not threats

Neuroticism, low conscientiousness predict higher stress, poorer coping

Question 21

” Courage and a fighting spirit” : Coping strategies

Answer 21

• Courage:
  
  • aware of fear, but facing it anyways
• Fighting spirit
  
  • coping strategy to live as normal a life as possible in the face of adversity

Question 22

Reminiscence : Coping Strategy

Answer 22

• Memories that recall pleasurable events, feelings and thoughts
• Can enable psychological growth
• Pleasurable way to recall life events
• Perspective on one’s life
• allows for re-evaluation of life with past conflicts resolved and integrated

Question 23

Hope : Coping strategy

Answer 23

• multidimensional
• confident but uncertain expectation of a future good
• associated wtih greater psychological and spiritual well being

Question 24

List INTERNAL mechanisms/strategies for COPING

Answer 24

• Hope
• Dignity
• Meaning
• Remininsence
• Courage
• Fighting Spirit
• Resilience

Question 25

List EXTERNAL mechanisms for coping

Answer 25

• CAM
• Magic and alternative therapies
• Psychopharmacology
• psychotherapy
• caregivers
• palliative care
• religion

Question 26

List types of therapy that enhance /enable coping

Answer 26

• Dignity based care
• Meaning based therapy
• CBT
• Psychotherapy
• Art, relaxation, recreation therapy, music therapy

Question 27

Meaning based therapies

Answer 27

• Therapy sessions that focus on responsibility to self and others
• Creativity
• Transcendance
• identifying goals in the face of terminal illness

Question 28

Spiritual Care : Coping

Answer 28

• religious coping to create meaning, purpose and goals and values of life
• chaplain, faith based provider

Question 29

What needs might a family caregiver have to cope effectively?

Answer 29

• information re: prognosis and diagnosis
• physical symptoms
• supporting feeling of guilt, inadequacy, anxiety, grief
• managing personal impact of care

Question 30

Coping in families

Answer 30

• Family understanding of illness, symptoms, treatments
• major concerns re prognosis, diagnosis
• how to contact medical team
• understanding family dynamics
• History of prior loss
• Social issues
• Community resources
• Children in the home
• Spirituality
• Expectations, future concerns
• Bereavement

Question 31

Steps to running a family meeting in Palliative Care

Answer 31

1. Prepare and plan - who to invite, where?
2. Welcome, introductions. Set agenda
3. Check understanding of illness / prognosis of everyone
4. Check for consensus about goals of care
5. Identify family concerns about management
6. Clarify family’s view about future
7. Clarify how family members are coping and feeling emotionally
8. Identify family strengths and affirm their commitment and mutual support
9. Close with final summary of agreed goals and care plan

Question 32

Specific techniques used in family meetings

Answer 32

• Circular questions
  
  • ask each family member in turn
• Reflective questions
  
  • What benefits might come from caring for Dad at home?
• Strategic questions
  
  • What change in Dad’s symptoms would need to occur for you to think admission to hospice was needed?
• Integrative summary
  
  • family’s views and conflicting concerns are reflected back with professional neutrality