LEC 8: The Important Role of Family in End-of-Life Care

Question 1

Palliative Care

Answer 1

• The specialized treatment of people with incurable illnesses.
• Offers support system to help the family cope during the patients illness and in their own bereavement.

Question 2

Hospice Philosophy

Answer 2

• Physical/Emotional/Spiritual care
• Family support can help meet these needs It is total care- understanding patients/families
• Prairie Hospice- hospice without walls
• Sanctum- HIV specific
• Hospice When curing is no longer possible caring still is

Question 3

Defining the Family

Answer 3

• The palliative approach generally refers to the family as a unit of care
• The Canadian Palliative Care Association defines family as “those closest to the patient in knowledge, care, and affection.
• From clinical perspective, the most practical approach is to permit patients and their family members to self-define.

Question 4

Family as a System

Answer 4

• Cultural values, religious practices, and family dynamics all play a role in the EOL experience.
• Understanding the family dynamics gives us greater insight into the family relationship, communication patterns, rules, and norms.
  
  • Families bring with them diverse histories and different approaches to coping.
  • Families of palliative care patients sometimes also have their own health challenges, both during the patient’s illness and in the bereavement period.
  • What is “normal” for one family may be “abnormal” for another
  • Know our own views, values, norms. and biases
• History of the parent/child relationship will impact today and future care
• Care at EOL often blurs familial role/relationships
• Family life cycle norms are disrupted due to EOL
• “Sandwich generation”- those caring for both their children and their parents simultaneously
• Family communication speaks to family functioning (or dtysfunctioning)

Question 5

Caregiving…A Universal Experience

Answer 5

• There are only four kinds of people in this world
  
  • Thos who have been caregivers
  • Thos who currently are caregivers
  • Thos who will be cargivers
  • Thos who will need cargivers

Question 6

Family Caregiving

Answer 6

• Home as putpatient medical care setting
• Caregiving responsibilites at end of life generally intensify
• People are living longer, and in some cases sicker, the role of and need for caregiving is extended
• This emotional support is important in reducing anxiety and depression in the patient
• Family needs are often concealed in the shadows, while the spotlight of concern and support is focused on the patient
  
  • Caregiver is seen as the “lost” person because the medical team is focused on the patient not the caregiver
• Caregiver role will end with the death of their loved one
• Caregiver support in integral to longevity of their role
• Compassionate care benefits: 6 months

Question 7

Caregiver Resilience

Answer 7

• Ability to adapt or to improve one’s own conditions following experiences of adversity
  
  • Families need reassurance
  • Caregiver support are part of that resilience piece
• Involves behaviours. thoughts, and actions
  
  • These can be learned and developed
• Adjust to a “new normal”
• Bringing comfort to comfort care
• Highlight strengths and coping strategies

Question 8

Caregiver Stress

Answer 8

• Family can provide great insight to the healthcare team about their loved ones during EOL
• Lonliness and isolation- lack of supports- can lead to feeling helpless
• Can be seen as the demanding family; the rude family, stressful family; results of stress, grief, denail (emotions and not coping; not sure what to do)
  
  • Why communication is important

Question 9

Communication

Answer 9

• Communicate!
• Patients/families know themselves best- allow them to have their own experience
• Comforting silence
• Filling the void

Question 10

Anticipatory Grief

Answer 10

• A grief reaction that occurs before an impending loss
• More than that, in advance of death we grieve:
  
  • The loss of person’s abilites and independence
  • A loss of hope
  • Loss of future dreams
  • Loss of stability and security
  • Loss of their identity and our own
  • This giref is the many losses that have occured throughout disease trajectory