Tasks of Mourning - Pediatric Palliative Care Coalition

Compassion Fatigue
and the Clinician
Basic Terms of Loss, Grief and Mourning
Bereavement- a state of
sorrow (robbed)
Grief- Emotional response to loss
Mourning- Process of
Four types of grief to consider
• Normal
• Complicated
• Anticipatory
• Disenfranchised
Normal grief is expressed in predictable ways.
Life threatening illness may trigger anticipatory grief.
Anticipated grief begins before loss
When a terminal
diagnosis is
Family support
Back and forth
between support
& daily activities
Family difficulties
Impaired family
coping skills
Anticipatory grief case
• 40 yo father & 39 yo mother, 6 yo daughter one year ago pt
diagnosed with rare bone cancer
• 6 month prognosis
• Three other children 4, 10 & 13 yo
• Husband lost job due to downsizing, mother provides only
income & benefits for family
• Frequent hospitalizations
• Recently, chose hospice care for 6 yo
• Husband primary caregiver at home
• What are some possible signs of anticipatory grief?
• Possible losses facing the family”
• Possible problems?
Complicated grief may look like
Complicating Factors relating to the death itself
Suddenness of death
Untimely death-child, adolescent
Ambiguity-questioning occurrence
A sense of causing death-driver of a car involved
in wreck
Complicating factors relating to survivors psychological
Unresolved losses earlier in life
Predisposed to depression
Need for the approval of others
Unable to form relationships with others
Unable to form new lifestyle apart from lost
Complicating factors relating to relationship with lost
Extreme identification with dead
Ambivalent feelings toward dead
Intensely close relationship with deceased
Continued reliance on life patterns with
Complicating factors relating to inability to express
• Inability of survivor to accept intense feelings
• Lack of ability by family to legitimize feelings
• Lack of access to usual rituals that would help to
manage grief
• Excessive drug use
• Extreme isolation
Complicated grief case
• 35 yo white female, RN mother of two children 8 &
10 yo.
• Now, an inpatient at a drug and alcohol and drug
rehab unit
• Pt’s mother died in 3/9/11 and father died 3/2/12
• Pt consciously represses emotions
• She feels “helpless” in terms of expressing emotions
Complicated Case continued
• Pt admits that her father had “heart trouble” & his death
came suddenly
• Expressed that she felt that she caused his death
• She was aware of illness but never forced him to seek
medical care
• She had time to prepare for mother’s death, but due to
chemical dependency avoided emotions.
What is disenfranchised grief?
• A loss that can not be openly acknowledged,
socially sanctioned, or publicly shared.
Lovers, mistresses,
Mother’s of miscarried babies
Tasks of Mourning
Tasks of Mourning (Worden, 2009& Wolfelt 2006)
• Acknowledging the reality of the loss
• Processing the pain of the grief
• To remember the person who died
• To develop a new self-identity
• To find meaning in the midst of embarking on a new life
Cumulative loss and the clinician.
• Death anxiety- pre-occupation or awareness of
personal loss.
• Defenses and behaviors:
– Evading emotionally sensitive conversations
– Speaking only when spoken to about uncomfortable
– Distancing, avoidance and withdraw
Self awareness is Key.
• The unexamined life is not worth living!
• Personal comfort with death is affected by, personality, culture, social
and spiritual belief systems.
• Explore, experience and express feelings regarding death
• Discuss beliefs systems about death/afterlife with friends, peers,
pastoral care workers
What is cumulative loss?
• Succession of losses
• Pts and residents living with life-threatening disease
Some factors influencing adaptation
• Professional training
• Personal history
• Life Changes
• Support systems
Professional Training helps to
• Express emotions appropriately
• Attend to pts and families with inter-personal and
compassionate care
• Verbalize feelings to begin to process loss and grief
We bring a Personal Death History & Life Changes.
• Our personal experiences with death effect how we deal
with dying pts/residents
• Personal life changes
• Triggers (people or situations)
Strategies to manage negative emotional triggers.
• Things to do:
Prior to encounter
To prepare for interaction
During interaction
If you are experiencing negative emotions during encounter
• Listen rather than speak
• Validate by naming pt’s emotion
• Name your emotions as long as not diverting attention from pt.
• If not sure question
– If you are feeling overwhelmed, it’s ok to excuse yourself
– Afterwards talk through the experience
Cumulative Loss: A case study
Patti, the pediatric care professional, has a twenty year history of
providing care in the acute care setting.
Recently, Patti’s mother died and she sent her son to college.
Normally, Patti has an active social life however, due caring for her
mother during her long illness and sending a child to college, she
has neglected her relationships.
In addition, Patti enjoyed singing folk music with a local group but
dropped out when her personal responsibilities began to encroach
on her life.
Professionally, Patti’s palliative care team has experienced an
increased volume of elderly patients actively dying.
Case Study Continued
Case managers are advocating for discharge and families are
extremely emotional with unexpected “end of life” conversations.
The team has also received consults for several difficult cases
referred to palliative care for end of life discussions. After a family
meeting with the parents of a 10 yo to discuss removing the patient
from life support, Patti found herself crying with a colleague when
discussing the case.
Normally, Patti can hold things together but recently she notices that
she is worrying more and more about patients when at home. She
is unable to sleep and has taken to the liquor cabinet to calm her
Discussion Questions:
• What are some potential issues the team may face?
• What should a team members do to help other members of
the team??
Positive adaptive responses.
• Debrief emotional events
Reach out to colleagues
Seek out or strengthen relationship with mentor
Write about your work for larger audience
Psychosocial rounds with colleagues to explore issues
How can your team provide support?
• Name a difficult case when feeling the emotion.
• Are you able to talk about a difficult case?
• Is there a place to go to talk?
Formal Support systems
• Pre-planned gatherings
• Debriefing sessions
• Memorial services for pt’s/resident’s who have died
Informal support systems to process loss
Pastoral care or spiritual support
Self Care for palliative care clinician
• Clinicians have a right to seek support systems to cope with
death anxiety, loss and grief
Ask for help
Journal writing
Hobbies and play
Indicators of triggers that might need professional help.
• Persistent feelings of exhaustion, anger, worthlessness,
hopelessness or anxiety interfering with work, eating
disorders, acting out and changes in interpersonal
• Self-prescribing sedative medication
• Substance abuse
• Persistent disturbances: nightmares, difficulty staying asleep
• Loss of professional boundaries.
Ed Lewis, M.Div., MPM
Bereavement & Spiritual Support
Palliative and Support Care InstituteUPMC Passavant
[email protected]