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

1. 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

2. 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

3. Reformulating Grief • Grief as a reaction to loss • Grief is experienced throughout the illness experience by patients, their intimate networks, and staff

4. Anticipatory Grief • Lindemann’s suggestion • Development of the concept in the 1970’s and 1980’s

5. Criticism of Anticipatory Grief • The misdirection of anticipatory grief • The mixed record of research • The “hydrostatic” model of anticipatory grief

6. 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

7. 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

8. 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.

9. Losses of the Intimate Network • These losses are paralleled in the intimate network • Caregiver losses • Psychosocial loss

10. Loss and Caregiving • Loss of independence • Loss of assumptive world • Loss of friends • Financial and lifestyle losses • The misnomer of anticipatory grief

11. Caregiver Burden • Objective • Sleep disturbances • Incontinence • Dementia • Non-ambulatory • Subjective – Past Relationship

12. Caregiving and Older Spouses The Caregiver Health Effects Study showed that over four years caregivers faced significantly higher health risks than the controls

13. Implication The critical need of caregiver assessment

14. 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

15. 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

16. Helping Patients and Families Cope with Loss

17. Coping with Prolonged LosPossible Complications • The myth of prolonged loss • Heightened ambivalence • The complication of ethical decisions

18. As Death Nears Families may: • Need to say goodbye • Feel that the death was appropriate • Give permission to die

19. 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

20. Sensitivity to Loss

21. Sensitivity to Middle Knowledge

22. Validation

23. 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

24. Remember! Loss = Grief

25. Grief is manifested in many ways • Physically • Emotionally (including positive emotions) • Cognitively • Behaviorally • Spiritually

26. The Grief ProcessA Roller Coaster of Reactions

27. Grief is not a time bound process that ends in detachment

28. 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

29. 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)

31. The Stockholm Syndrome • We bind quickly in times of stress (Fulton)

32. 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

33. Papadatou’s Model of Caregiver Grief Simultaneously experiencing and containing grief

34. Principles of Self-Care • Individual • Validation • Respite and Stress Management • Philosophy • Role • Spirituality • Organizational • Education • Support • Ritual

36. 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