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Communicating Care and Concern: Assisting Family, Patients, and Staff in Grief. Kenneth J. Doka, PhD Professor, The College of New Rochelle Senior Consultant, The Hospice Foundation of America.

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communicating care and concern assisting family patients and staff in grief

Communicating Care and Concern: Assisting Family, Patients, and Staff in Grief

Kenneth J. Doka, PhD

Professor, The College of New Rochelle

Senior Consultant, The Hospice Foundation of America

slide2

Anything that you have, you can lose; anything you are attached to, you can be separated from; anything you love can be taken away from you. Yet, if you really have nothing to lose, you have nothing.

Richard Kalish, 1985

reformulating grief
Reformulating Grief
  • Grief as a reaction to loss
  • Grief is experienced throughout the illness experience by patients, their intimate networks, and staff
anticipatory grief
Anticipatory Grief
  • Lindemann’s suggestion
  • Development of the concept in the 1970’s and 1980’s
criticism of anticipatory grief
Criticism of Anticipatory Grief
  • The misdirection of anticipatory grief
  • The mixed record of research
  • The “hydrostatic” model of anticipatory grief
anticipatory grief1
Anticipatory Grief
  • Initial formulations
  • Criticisms
  • Rando’s redefinition of anticipatory mourning
  • Anticipatory grief as functional and psychosocial loss
  • Past, present, and future
  • Experienced by patient, family, and staff
grief within the illness experience
Grief within the Illness Experience
  • The demise of the stage theory
  • Task and Phase Models
  • Grief at the time of diagnosis – the loss of a projected future, assumptive world and dreams
grief within the illness experience chronic and terminal phases
Grief within the Illness ExperienceChronic and Terminal Phases
  • Intangible losses continue
  • Tangible losses include loss of function, independence, body image, careers, spiritual losses, relationships, activities, etc.
losses of the intimate network
Losses of the Intimate Network
  • These losses are paralleled in the intimate network
  • Caregiver losses
  • Psychosocial loss
loss and caregiving
Loss and Caregiving
  • Loss of independence
  • Loss of assumptive world
  • Loss of friends
  • Financial and lifestyle losses
  • The misnomer of anticipatory grief
caregiver burden
Caregiver Burden
  • Objective
    • Sleep disturbances
    • Incontinence
    • Dementia
    • Non-ambulatory
  • Subjective – Past Relationship
caregiving and older spouses

Caregiving and Older Spouses

The Caregiver Health Effects Study showed that over four years caregivers faced significantly higher health risks than the controls

implication

Implication

The critical need of caregiver assessment

psychosocial loss
Psychosocial Loss
  • Can be defined as experiencing the loss of the persona of the other
  • Examples include:
    • Dementia
    • Mental Illness
    • Accident
    • Substance Abuse/Recovery
    • Religious Conversion
grief within the illness experience recovery phase
Grief within the Illness ExperienceRecovery Phase
  • Even in recovery, patients may experience a loss of an assumptive world, a more vulnerable future, and spiritual losses
  • Intimate networks may experience similar reactions as well as a sense of psychosocial loss
coping with prolonged los possible complications
Coping with Prolonged LosPossible Complications
  • The myth of prolonged loss
  • Heightened ambivalence
  • The complication of ethical decisions
as death nears
As Death Nears

Families may:

  • Need to say goodbye
  • Feel that the death was appropriate
  • Give permission to die
when death occurs
When Death Occurs

Families may

  • Need time alone
  • Wish a ritual
  • Need to close a relationship with caregivers
  • Review decisions
  • Help with affairs
  • Allow grief
disenfranchised grief
Disenfranchised Grief
  • Disenfranchised grief is grief that is not openly acknowledged, publicly mourned, or socially sanctioned
  • Failure to validate – for whatever reasons disenfranchises grief
  • Creating a safe space for expressions of grief is the heart of communicating care and concern
remember

Remember!

Loss = Grief

grief is manifested in many ways
Grief is manifested in many ways
  • Physically
  • Emotionally (including positive emotions)
  • Cognitively
  • Behaviorally
  • Spiritually
amelioration of grief
Amelioration of Grief
  • Over time the intensity of grief reactions lessen
  • Persons function at similar (or sometimes better levels) than prior to the loss
  • Yet, grief still has a developmental aspect
the tasks of grief
The Tasks of Grief
  • Acknowledge the loss
  • Express manifest and latent emotion
  • Adjust to a changed life
  • Relocate the loss
  • Reconstitute faith and philosophical systems challenged by the loss

Worden (Modified)

the stockholm syndrome
The Stockholm Syndrome
  • We bind quickly in times of stress

(Fulton)

caregivers experience multiple losses
Caregivers Experience Multiple Losses
  • Loss of a Patient
  • Loss of a Relationship with Family
  • Perhaps Personal Future or Past Losses
  • Loss of Assumptive World
  • Unmet Goals
  • Death of Self
papadatou s model of caregiver grief
Papadatou’s Model of Caregiver Grief

Simultaneously experiencing and containing grief

principles of self care
Principles of Self-Care
  • Individual
    • Validation
    • Respite and Stress Management
    • Philosophy
      • Role
      • Spirituality
  • Organizational
    • Education
    • Support
    • Ritual
the gift of illumination
The Gift of Illumination
  • Assisting families, patients, staff – the gift of illumination
  • Not any easier – more understandable
  • The journey is still difficult but a light can make it less treacherous