disenfranchised grief - wayne state university
TRANSCRIPT
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Disenfranchised Grief:
Professionals Recognizing, Owning
and Working Through Loss
Rita J. DiBiase, ACNP-BC, ACNS-BC, AOCNS, CHPCN(C)
Palliative Care Collaborative:8th Annual Regional Conference
Dearborn, MI
October 10, 2014
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Objectives • Define Disenfranchised Grief, including the five
categories
• Discuss the reasons healthcare providers are at
risk for Disenfranchised Grief
• List at least 3 interventions and/or resources
that healthcare providers can utilize to prevent
and/or deal with grief
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Disclosure
“I have no financial or other conflicts of interest
related to this presentation. Any mention of off-
label use of drugs will clearly be mentioned as
such.”
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The Invitation
By Oriah Mountain Dreamer
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Why Focus on Nurses?
Nurses:
• Care for dying patients and are the survivors of many
losses
• Interact with both the dying and survivors of the dying
more than any other professional group
• Focus on care-related tasks, nurturing, support, ‘maternal’
or ‘paternal’ behaviors
Helping nurses deal with death and the grieving
process guards against compassion fatigue and
burnout.
(Lev, 1989; Furman, 2002; Broche, 2003)
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Why Focus on Healthcare
Professionals?
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Dr. Kenneth J. Doka
• Prof of Gerontology - College of New Rochelle, NY
• Editor - Omega Journal, Journeys Newsletter
• Published over 100 articles and chapters
• Living With Grief: After Sudden Loss
• Living With Grief: When Illness is Prolonged
• Living With Grief: Who We Are, How We Grieve
• Living With Grief: Children, Adolescents, and Loss
• Living with Grief: Loss in Later Life
• Living With Grief: At Work, at School, at Worship
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Dr. Kenneth J. Doka
• AIDS, Fear and Society
• Caregiving and Loss: Family Needs, Professional Responses
• Children Mourning, Mourning Children
• Men Don’t Cry…Women Do: Transcending Gender Stereotypes of Grief
• Death and Spirituality
• Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice
• Disenfranchised Grief: Recognizing Hidden Sorrow
• Disenfranchised Grief: Living With Life-Threatening Illness
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Disenfranchised Grief: A Definition
How would YOU define
Disenfranchised Grief?
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Definitions
Dis·en·fran·chise: ("dis-in-'fran-"chIz): to deprive of a
franchise, of a legal right, or of some privilege or
immunity; especially: to deprive of the right to vote
Grief: is an individual’s reaction or personal response to
a significant loss. Grief has emotional, physical,
behavioral, cognitive, social, cultural and spiritual
dimensions.
Disenfranchised Grief: Grief that persons experience
when they incur a loss that is not or cannot be socially
sanctioned, openly acknowledged or publicly mourned
(Merriam-Webster’s Online Dictionary, 2010; Worden, 1991, Rando, 1984; Doka, 1989)
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Grieving Rules
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Grieving Rules
The concept of disenfranchised grief recognizes
that society has a set of norms that attempt to
specify:
• Who
• When
• Where
• How
• How long
(Doka, 1989)
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Are All Losses Death Related?
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Losses
• Divorce
• Relocation
• Adoption, foster care
• Job loss
• Incarceration
• Property loss, robbery, fire, flood...
• Loss of limb, body part, health
• Life threatening diagnosis
• Others?
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Disenfranchised Grief
Categories
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Relationship is not Recognized
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• Therapist/patient
• Teacher/coach
• Same sex partner
• Lover/partner
• Extramarital affair
• Pets
• Ex-spouse
• Friends
• Neighbors
• Colleagues
• Foster parents
• Step parent/children
• In-laws
• Nursing home roommate
• Celebrities
• Others...
Underlying assumption is that closeness
exists only with spouses and immediate kin
Relationship is not Recognized
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Loss is Not Acknowledged
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Loss is Not Acknowledged
This category considers losses that are NOT socially
defined as significant
• Perinatal deaths
• Abortions
• Pets
• Psychological
• Brain activity / organic brain syndrome
• Mental illness
• Significant personal transformations (addictions, conversion)
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Griever is Excluded
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Griever is Excluded
This category identifies persons not socially defined
as capable of grief
• Persons with developmental disabilities
• Mental illness
• Dementia
• Elderly
• Very young
• Mentally disabled
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Ineffective Coping Strategies
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Helpful Strategies
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How Individuals Grieve Intuitive Griever
• Experiences strong affective reaction
• Expression mirrors inner feelings
• Adaptation involves expression and exploration of feelings
Instrumental Griever
• Experience is primarily cognitive or physical
• Often expressed cognitively or behaviorally
• Adaptation generally involves thinking, doing
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Issues with Disenfranchised Grief
• Intensified feelings
• Ambivalence and
concurrent crisis
• No role in planning of
funeral ritual
• No bereavement leave
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Physicians
• Focus is cure-related
• Society rewards life-saving
and technical achievement
• What education and
support is offered during
formal program?
(Lev, 1989)
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Nurses’ Grief
Response to situations affect by:
• Previous unresolved losses
• Actual or potential losses
• Feelings of guilt
• Inability to provide care
• Difficulty meeting family needs
• Unable to be present at time of death
(Lev, 1989)
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Who Helps the Helper?
• Concept analysis that clarifies grieving
process for nurses
• Antecedents
• Defining characteristics
• consequences
• Many articles and studies written in
relation to nurses helping patients and/or
families work through grief
• Public perception – we are specially
trained to deal with and teach the
grieving process to lay persons
(Brunelli, 2005)
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Professional Caregivers
• Caring for the professional caregiver
before and after the death
• Compassionate care and ability to
give of oneself without being
destroyed in the process
• Anticipatory grief
• Denial of grief
• Distorted or masked grief
• Chronic grief
(Vachon, 2007)
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Disenfranchised Grief Across the Spectrum
• 14 Greek oncologists, 16 pediatric oncology nurses
• Cultural context – disease is not named
• Physicians didn’t feel emotionally supported by
colleagues
• Nurses found support among colleagues
• Healthcare professionals’ grieving process was
affected by:
• Role perception
• Interventions
• Contributions (Papadatou, D., Papazoglou, I., Bellali, T. & Petraki, D., 2002)
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Determinants of Grief • Personal experience
• Mode of death
• Relationship
• Social, economic, cultural and religious factors
• Social support
• Other life stressors and opportunities
• Closeness of the mourner to the deceased
• Extent to which mourner believes the death may have
been prevented
• Death encountered early in career or as a student
(Lev, 1989; Parkes, 2002)
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Manifestations of Grief Physical Cognitive Emotional Behavioral
• Headaches
• Dizziness
• Exhaustion
• Muscle aches
• Sexual issues
• Loss of appetite
• Insomnia
• Tightness, hollow
• Breathlessness
• Tremors
• Shakes
• Sensitive to noise
• Depersonalization
• Diff concentrating
• Disbelief
• Confusion
• Idealization
• Search meaning
• Dreams
• Preoccupation
• Fleeting
hallucinations
• Anger
• Guilt
• Anxiety
• Helplessness
• Sadness
• Shock
• Yearning
• Numbness
• Self-blame
• Relief
• Impaired performance
• Crying
• Withdrawal
• Avoiding reminders
• Carrying reminders
• Over reactivity
• Relationship changes
(Doka, 1989; Corless in Ferrell, 2006)
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Coping Mechanisms
Coping or so we think...
• Psychic numbing
• Withdrawal
• Isolation
• Restriction of person involvement with patients
Desire to leave current job or healthcare
profession
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Mentoring Professional Caregivers Comfort-Ability Growth & Development Scale in Coping
with Professional Anxieties in Death & Dying
Stage I Intellectualization – 1-3 mths
Stage II Emotional Survival - 3-6 mths
Stage III Depression – 6-9 mths
Stage IV Emotional Arrival – 9-12 mths
Stage V Deep Compassion – 12-24 mths
Stage VI The Doer – 8-10 yrs beyond Stage V
(Harper, 1994)
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Your Profession
• Philosophy
• Passion
• Commitment
• Assessment
• Mentoring
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Strategies/Interventions
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Self Awareness and Self Appraisal
• Dealing with own attitudes
• Unresolved losses
• Personal loss history
• Learning to balance
between identification &
detachment
• Spirituality
(Doka, 2002; Medland et al.,2004; Vachon, 2006; Kearney Weininger, Vachon, Harrison & Mount)
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Self-Care
• Self-care based on self-awareness
• Physical activity
• Art
• Hobbies
• Reflective writing
• Mindfulness Based Meditation – Kabat-Zin
• Any form of enjoyment, rejuvenation
(in Kearney, Weininger, Vachon, Harrison and Mount; Vachon, 2006; Kabat-Zinn, 1990)
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Education and Rejuvenation
• Education regarding the needs of dying
patient & families
• Conferences
• Clinical
• Retreats
(Doka, 2002; Medland, et al., 2004; Vachon, 2006; ELNEC Core)
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Education and Support
P alliative The Karmanos Experience
R resources
E ducation &
S upport
E nriching
N ursing
C are with
E LNEC
(adapted from ELNEC Core with permission)
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The Windsor
Experience
LEAP for Nurses Learning Essential
Approaches to Palliative Care
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Windsor Inter-professional Experience LEAP
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Windsor
Cancer
Program
EPEC-O
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Retreats
• For staff
• Structured programs with themes, outcomes
and next steps
• Medland – Circle of Care
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Bereavement Programs
• Formal structured programs
• Cards
• Phone calls
• Scrapbooks
• Celebrations
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Team Approach
• Frequent informal
discussions with colleagues
• Structured debriefing
sessions
• Case Reviews
• Team Meetings
• Mentoring
• Mindfulness-Based Stress
Reduction for Team
(Kearney, Weininger, Vachon, Harrison and Mount)
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Learn and Play Together
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Rituals
• Highly symbolic acts that confer transcendental
significance
• Meaning
• Provide structure
• Opportunity to contain and express emotions
• Significance is both social and personal
(Doka, 1989)
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Rituals
• Attending a funeral – a question for you and your colleagues
• Funeral ritual
• Alternative rituals
• Continuity
• Transition
• Reconciliation
• Affirmation
(Doka, 1989)
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Staff Ceremony – Alternative Ritual
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"We must never forget
that we may also find meaning in life
even when confronted with a hopeless
situation,
when facing a fate that cannot be
changed…
When we are no longer able to change a
situation,
…we are challenged to change ourselves"
Frankl, 1984