Marie-Annette Brown, PhD, RN, FAAN

1. Marie-Annette Brown, PhD, RN, FAAN

2. Introduction • Anticipatory Grief • Families and individuals and how they deal with the multitude of losses from impending death as well as the loss of patient’s contribution to the work of the family. Mrs. Gregory’s daughters experience anticipatory grief.

3. What is Anticipatory Grief? • Anticipatory Grief • Sometimes long: Technological advances prolong life (e.g., slow deterioration/dying process with cancer). • Sometimes brief (e.g., little notice of hours or days, as with heart-failure)

4. The Term “Anticipatory Grief” • Lindeman Definition: • A phenomenon which includes: • Mourning • Coping • Interaction • Planning • Psychosocial reorganization • For Family: The process begins due to the awareness of the impending loss of a loved one and the recognition of associated losses in the past, present, and future. • For Patient: Experience of grief with past, present and future loss and how they deal with realization that their life is limited. (Lindeman, 1944)

5. Anticipatory Grief Myths • Myth: There is a fixed amount of grief to be experienced and the amount experienced in anticipation of the loss will decrease, by a corresponding quantity, the remaining grief that will need to be experienced after the death. • Myth: Experiencing anticipatory grief and working on the emotional processes associated with preparing for the patient’s death mean the family has given up hope.

6. Comparison Between Anticipatory & Conventional Grief • Anticipatory grief: • Is NOT conventional (post-death) grief begun earlier • Is more affected by ambivalence • Is more readily denied • Contains more hope • Has a clear endpoint with the actual death • May not decrease with time but could increase as the moment of loss approaches

7. Metaphor Illustration • The following metaphor illustrates the possibilities that are part of the experience of anticipatory grief: Doorway to Death: Metaphor • What choices do we have as we see impending death come near?

8. Positive Aspects of Anticipatory Grief • Anticipatory grieving: • Absorbing the reality of the loss gradually over time. • Finishing unfinished business. • Making restitution for past transgressions. • Withdrawing, slowly, emotional energy. • Assuming the responsibilities of the dying person. • Redefining the family roles.

9. Case Example: Simmons Family • Diverse stages of anticipatory grieving • Mike is hospitalized with metastatic colon cancer … • 1. Background on Simmons Family. • 5. Withdrawing, slowly, some of the emotional energy invested in the dying person. • 2. Absorbing the reality of the loss gradually over time. • 6. Assuming, gradually, the responsibilities of the dying person among themselves. • 3. Finishing unfinished business with the dying person • 4. Making restitution for past transgressions in the relationship by devoting oneself to good caregiving. • 7. Redefining the family roles in relationship to the dying person

10. Secondary Losses for Families • Grieving concurrently with anticipatory grieving. • It is not only the health of the ill person, which is gone, but multiple other aspects of life. • Losses include: FINALLY, families vicariously experience all the patient’s losses and grief Loss of the role or roles the terminally ill person played in their life Loss of energy from the physical, financial and time demands Loss of energy and vitality from chronic stress Loss of social interactions, entertainment, free time and fun/pleasure Loss of norms and clearly specified expectations and responsibilities Loss of balance in family/friendship structure

11. A high level of physical strain involved in caregiving over prolonged periods. Social isolation occurs in the family. As family stress increases, ordinary dynamics become intensified. Existing weaknesses of the family can be exacerbated (alcoholism, emotional problems, etc.). Financial stress (associated with lost income or cost of health care) restricts people’s activities, options. Fears arise: a fear of the actual death, fears of a crisis, fears of not being able to handle what happens. Difficulty witnessing the progressive debilitation of a loved one. Potential Family Difficulties & the Process of Family Caregiving • Rando examples: (Rando, 1984)

12. Anticipatory Grief & the Tasks and Competing Agendas • Families face many agendas as moments of end-of-life • Psychological tasks you deal with include: • Increasing attachment to the patient during the illness vs. starting to decathect [separate existentially] from the patient in terms of his or her existence in the future. • Remaining involved with the patient vs. separating from the patient. • Planning for life after the death of the patient vs. not wanting to betray the patient by considering life in his or her absence. • Communicating feelings to the patient vs. not wanting to make the patient feel guilty for dying or bound to this world when the patient needs to let go. • Balancing support for the patient’s increased dependency vs. supporting the patient’s continued need for autonomy. • Focusing on the past and recollecting with the patient vs. focusing on the future.

13. The Struggle of Maintaining Hope While Accepting Death • Families on the Tightrope: Maintaining Hope While Facing the Possibility of Death Embracing Hope Facing the Possibility of Death

14. Factors Affecting the Anticipatory Grief Process • Family member’s past experience with loss and grief • Circumstances surrounding the illness • Influences in the present • Implications of differences among family members

15. Husband who’s lost his father 10 years before Wife who has never lost a parent Child losing a sibling Family Member’s Past Experience with Loss & Grief

16. Circumstances Surrounding the Illness • Amount of forewarning • Chronic, slow deteriorating vs. accident death. • Stage of life • Age • Never fully experience life vs.

17. Influences in the Present • Characteristics of the Family Member: • Age, stage of life • Personality, present stability of mental health and coping behavior • Family conditioning • Role expectations • Relationship with the Patient • Closeness to patient • Source of Strength

18. Implications of Differences Among Family Members • Thanatos - a summary Photo albums and other ideas • What different tools can individuals within family unit use to help others?

19. Family Assessment Tool • Family assessment tool. Assess the following: • Support system • Loss history • Finances • Emotional status • Physical status • Lifestyle changes • Children • Family functioning • Concurrent life stress (Rando, 1984)

20. Assessment of Support System • Questions • Q: Who are some of the people who have been helpful/supportive to you? • Q: Is there someone who you feel you can talk to about most things - who? • Q: Are you comfortable asking for/eliciting support from this person/persons? • Q: Are you comfortable receiving support? • Responses • "Grieving is hard work” • "You should be not expected, nor should you try to, go through it alone." • "You need support, empathy & compassion from people who care about you.

21. Assessment of Loss History • Questions • Q: What other important people in your life have died? • Q: What other kinds of losses have you experience? (Divorce/Separation) • Q: How was that for you? • Responses • The primary effort would be educating about the potential for unresolved losses to surface. • If it was a negative experience, encourage the family member to talk about it. • If there are fears: “What about it was difficult for you”? • Empathize with emotional turmoil and validate present situation as understandable. • Emphasize the point that they do not need to go through this alone. Maybe one-on-one counseling or a support group would be useful. • Ensure that the family member has a comprehensive bereavement follow-up after the loss actually occurs.

22. Assessment of Finances • Questions • Q: Do you have concerns/worries about present/future financial situation? • Q: Have you had an opportunity to think about the practical aspects of how you will manage after death? • Responses • Refer to reading material, pamphlets, organizations, legal help. • Sometimes people are hesitant to “burden” others in family who could assist. Encourage “BURDENING."

23. Assessment of Emotional Status • Question (Guilt) • Q: Guilt: (PREVENTABILITY) "I’m getting a sense that you might be questioning whether you have done all that you could?” • Responses (Guilt) • Reality testing to see if the reason for the guilt matches with the actual circumstances. • If there are very real reasons for guilt, encourage forgiving oneself. • Response (Anger) • "Is there anything specific that your anger and frustration stems from?"

24. Assessment of Physical Status • Questions • Q: What do you do to care for yourself? (Ask about sleeping, eating, and use of drugs/alcohol.) • Responses • Emphasize concern and caring for them as individuals. • Educate about needing their resources for grieving. • Educate/problem solve about ways to get more of what they need. “How can we help you to get what you need”?

25. Assessment of Physical Status • Questions • Q: Are things in your family ‘falling through the cracks’ like bills, etc. during your family member’s illness? • Q: Tell me about your years together. You seem so close. • Q: You seem to have a pretty busy life. How is it going to be for you when (refer to the upcoming changes)? • Q: Your mom seemed like the kind of person who took care of everybody’s needs. How do you think your family will manage after she has died? • Responses • Reinforce the family member for their willingness to discuss the issues and encourage them to take leadership in the family about this. • You may need to help problem solve/give referrals for community support.

26. Assessment of Children • Questions (to children) • Q: Have you had an opportunity to talk with (parent/caregiver) about how ill your mother is? • Responses • Talk on the child’s level. • Be open and honest. • Give resources. (Books, Support groups) • Involve the child with dying person. • Questions (to parent/caregiver) • Q: What do you believe his/her understanding to be? • Q: Would you like some help in how to talk further with him/her?

27. Assessment of Family Functioning • Questions • Q: How do things work in your family? • Q: Do people do much talking about how they feel? Do they talk about what’s going on in their lives? • Q: Is one person mainly the one in control, or do decisions get shared? • Q: Are you clear with each other about expectations and needs? Are there a lot of things that go undiscussed, or a lot of assumptions that get made? • Responses • “Do you think, with some help from me, that you might be willing to share some of your feelings with him/her”? • Assess roles. Who is decision-maker? Do decisions get made? • Assess the ‘Rules’ regarding sharing feelings and open expressions. • Is there marital discord or conflict within family? • What are usually the communication problems?

28. Assessment of Concurrent Life Stress • Questions • Q: It seems like there is more happening in your life than just your (parent/friend/relative's) illness? • Responses • Legitimize the other stressors and remind them the rest of life does not stand still when a family member is very ill. They may be feeling guilty about distraction or lack of focus on the dying family member. • Offer assistance. “What can we do to lessen your load?” There may be nothing. However, simply providing an additional opportunity to develop insight into one's own needs is an important intervention and should not be underestimated. And perhaps, in some small way, one can be helpful even if it is a referral for other resources.

29. Recommendations for Working with Families of Dying Patients • Rando’s outlines of the recommendations for providers • Nursing interventions with families

30. Nursing Interventions with Families • The conversation about death is difficult to initiate, but it is one of the most important nursing interventions at the end of life. • Dealing With Death: Lifting the Burden of Silence