Defining a Good Death - Oxford 2.4

Question 1

List 8 features of a “good death”

Answer 1

• Multidimensionality
• Importance of role
• Importance of culture
• IMportance of timing
• Developmental stage
• Importance of diagnosis
• Location of death
• Opportunity for growth

Question 2

Multidimensionality

Answer 2

• Physical experience
  
  • pain and symptom management
  • functional status
• Psychological experience
• social experience
• spiritual or existential experience
  
  • religious, connection to nature, meaning and purpose in life
• Nature of health care
  
  • appropriateness of level of intervention
  • relationship to provider, communication with health care provider
• life closure and death preparation
  
  • many patients now want to know what to expect
  • personal affairs in order
  • prepare families for future
  • life review, resolving conflicts, legacy work, personal reflection, etc
• circumstances of death

Question 3

Importance of role

Answer 3

• patients experience their illness living a variety of roles and inter relationships that need to be sustained as part of whole person care.
• families and patient may rate being at peace and freedom as important as pain control
• mental alertness important.

Question 4

Importance of culture

Answer 4

• much of the empirical work defining “good death” is based on Western English speaking populations
• Social construction of the meaning of death is varied and often in direct opposition to the palliative care’s normative views of grief and loss.

Question 5

Importance of timing

Answer 5

• no consense on what constitutes “end of life”
• Timeframe and preparation varies:
  
  • new diagnosis: preparation may be possible courses of treatment, getting back to work, social roles
  • As illness progresses: preparation may include increasing palliative approaches, hospice, issues of completion
  • As dying is imminent : prepartion may include expectations of care, location of care, education about very end of life.

Question 6

Developmental Stage

Answer 6

• adult vs peds
• peds:
  
  • Same domains as adults plus:
  • importance of addressing total population in need:
  • Children born with expectation of imminent death, acquired illness, trauma / sudden death
  • IMportance of collaborative decision making with families
  • Involving children to extent to which they are developmentally capable and desiring
  • Often peds death seen as untimely–> leads to complex grief.

Question 7

Importance of diagnosis

Answer 7

• early palliative care all cancer
• limited generalizations to broader end of life populations : COPD, CHF, ESRD, Dementia, frailty
• uncertain prognosis and increased possibility of sudden death
  
  • challenges conventional palliative care concepts of open awareness, autonomy, individuality
• cardiologist’s view “living with heart failure” vs palliative care’s “dying with heart failure”

Question 8

Location of death

Answer 8

• majority of care in dying trajectory occurs in community
• must have continuity between community and hospital.
• Advanced cancer patients value supportive services, emergency contacts, case management
• death in long term care settings:
  
  • adequacy of staff, facility environment, bonds with staff, improved communication

Question 9

Opportunity for Growth

Answer 9

• Life Cycle Model vs Medical Model
• Medical model generates a problem list first
  
  • Less like to help patients experience improvement or growth in non physical domains
  • predicts and manages only decline
• Life Cycle Model
  
  • natural end to life course
  • expected developmental tasks at this phase :
  • life review, conflict resolution, forgiveness, acceptance, generativity
  • allows one to conceptualize end of life as holding opportunity for growth rather than only decline
  • Growth in emotion and spiritual domains

Question 10

Clinical implications of the term “Good Death”

Answer 10

• Zeal driving early movement of “good death”
• Risks imposing judgment of the “right way to die”
• “Right way to die” includes free of pain, surrounded by family, free of conflict, acceptance of death, stopping curative treatment, being at peace and at home.
• Unintended paternalism
• So much more nuance and variation to patient preference
• Some “good death” may include medically non-beneficial treatment at end of life
  
  • emotional distress or deeply rooted vitalist traditions
  • May need to respect and honour these preferences
  • ethics consults prn

Question 11

Types of outcomes in QI research?

Answer 11

• outcome measures
• process measures
• balancing measures : unintended consequences

Question 12

Analysis structure for QI goal setting?

Answer 12

• SEPTEE
• Safe
• Effective
• Patient centred
• Timely
• Efficicent
• Equitable

Question 13

Team members of QI project?

Answer 13

• technical expert
• clinical leader
• admin
• IT
• key stakeholders
• patient family representative