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Module 2Anticipatory Grief and

Secondary Losses

Anticipatory Grief

• Begins before death• Actual or fear of potential

losses• Isn’t orderly or predictable• Experienced by both patient

and family

Anticipatory Grief (cont.)

• Lindemann, 1944• Freud, 1916• Weisman, 1972

– Patient has opportunity for ‘good’ death

– Family/friends promote healthy death

• Rando, 2000

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Challenges Anticipatory Grief

• Unfinished business• Dysfunctional coping• Premature detachment• Poor communication• Negative interactions with patient• Lack of appropriate planning

Impaired Body Image

Financial

LossesSexual Activity &Intimacy

Pain

Isolation

Life stylechanges

Changes withFamily & Community

Fatigue

Impaired CommunicationSuffering

DifficultSwallowing

Loss ofAutonomy

independencecontrol

work

From Families:

“My sadness is overwhelming.”

“I feel guilty because I’m angry at him.”

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Group for Families

To enhance opportunities for families to express feelings, concerns, fears

To facilitate mutual support among group members who are facing similar problems

Organizational Steps

• Establishing timeline• Refreshments• Informing professional staff• Notification of family members• Develop attendance log• Develop evaluation tool

Problem: Despite Positive Evaluations…

Poor attendance

Poor attendance

Poor attendance

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Re-Evaluation

• Re-evaluation of groups• Focus of group changed• Caregivers Educational Series• Five major topics identified• Rotating topic each week

Caregivers Educational Series

• Taking care of the caregiver (you)• Stress reduction techniques• Communication skills for coping with

a serious illness• Adjusting to changing roles due to a

serious illness• Resources for coping with a serious

illness

New Group Objectives

• To provide information and resources

• To promote and recognize problem solving strategies

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“It’s not getting any better. It’s so overwhelming. Each day he gets worse and is less and lesslike my husband.”

“I’m so tired. Once a week we go out; we go to the hospital and back. I have to do everything. Everything is an effort. My life hascome down to this.”

“My wife was always so strong and independent. She managed everything in the house: the kids, shopping & cooking, while working full time as a lawyer. Now she can’t sign her name.”

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“I feel so guilty. I’m waiting for him to die. We no longer talk or plan for our future. We can’t even watch television together because he can’t understand the plot. This is too much. . . I wish it were over already. . . Now I feel even more guilty for telling you that.”

Grief Assessment:

• begins at time of diagnosis.• is ongoing.• development of

assessment tools

Understanding the Illness Experience

• Disease related factors–Nature of the disease

• Where & how disease manifests–Predictability of the course

• Less predictable = more difficult

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The Dying TrajectoryGlaser and Strauss, 1968

• Gradual slant• Downward

slant• Peaks &

valleys• Descending

plateaus

• Long, slow decline

• Rapid decline• Alternating

patterns• Decline and re-

stabilization

Understanding the Illness: Age Related Factors

Infancy & early childhood: Bonding & trust

School age:Impaired academic

Understanding the Illness: Age Related Factors (cont.)

Adolescence:

Identity

Independence

Intimacy

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Understanding the Illness Age Related Factors (cont.)

The Young Adult:Establishing family and career

The Middle Aged Adult:Anger at being cheated

“I'm so scared. Why is G_d punishing me? This will go on for a long longtime because my heart is strong. I'm going to suffer. If I were old it would have been over already. I spoke to G_d last night – please don’t let me suffer. ”

“I must have done something wrong. It's not fair. I'm not ready to give up. I can't. Then I think, I had a year. That's a gift. Maybe I would have been better off if G_d took me right away. But I've had a good year. I wouldn't have met you if I went right away.” (smiles at me)

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“You know, that's why G_d never had me marry or have children. He knew it would end like this. I don't think I'm being punished - but I think G_d knew. Could you imagine if I were dying and leaving young children - that would be sadder.” (crying)

“What about my spirit? Do you think I'll go to heaven? I don't. He'll say you cursed on the holidays. You didn't fast on Yom Kippur. You told your father you weren't smoking cigarettes when you were (laughs) No, I don't think I'll go to heaven.”

“I couldn't go to the toilet; couldn't lower myself. [My brother] had to help. I peed all over the floor. Oh G-d it was so terrible. I don't know what's happening to me. I called my friend at five in the morning. She said, “Are you okay? What's wrong?” I told her I just wanted to chat. I never knew it was 5 AM.”

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“My brother is devastated. Doesn't know what to do for me [crying]. He had to wipe the piss off me last night [she sobs; has trouble catching her breath]. Can you imagine? I know I now need 24-hour nurses. I can't be by myself. You know what that means to me? [My brother] had to stay until the home health aide came in this morning. I couldn't be alone.”

Understanding the Illness Age Related Factors

• The Elderly: – Other chronic

illness– Decreased

support– Lack of

appropriate caregivers

“Who is going to be there for me? My children live far away and they have their own families and jobs. I took good care of my husband when he was sick, but no one is there for me now. I’ll have to go into a [nursing] home.”86 year old with breast cancer

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Understanding the Illness Experience

• Social & psychological factors– Social class, income– Intellectual ability, prior experience– Religious, spiritual, philosophical– Personality– Support– Concurrent crisis

Cognitive Responses to Life Threatening Illness:

What are the 3 most common responses to life threatening illness?

DenialDenial

Denial

Responses to Life Threatening Illness (cont.)

• Emotional Response– Existential, re-assessment– Hope– Guilt: causation; moral; role

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“When I get nervous and anxious it escalates everything. My breathing gets bad; I get dizzy; my head pounds. I finally said this is crazy. I don't feel like I'm dying yet. So I had this talk with G_d and now I feel better.”

Responses to Life Threatening Illness (cont.)

• Behavioral responses─Hypersensitivity─Disengagement─Mastery & control─Regression ─Dependent behaviors

“It's about control. I have no control anymore. Everyone tells me what to do and what not to do. Nothing is mine anymore. My life is boring. I'm waiting to die.”

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Responses to Life Threatening Illness (cont.)

• Physical response─ Manifestations of stress─ Preoccupation with

health─ Suffering & pain

“Part of me knows the end is near. But I'm scared [cries]; I'm afraid to die. Will I be alone? Will I be in pain? Can I stay at home? There are so many questions and no real answers.”

Adaptational Tasks for Family

• Remaining involved

• Remaining separate

• Role changes

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Involvement

• Levels of Involvement– Influenced by personalities

circumstances

• Preserving Interactions– Social isolation– Detachment

“ My friend hasn't called me since my birthday. She has started backing off. So have other people. It really hurts because I thought they were my good friends. I guess they don't want to deal with me. A lot of them have pushed away. It makes me sad.”

“It's so scary that I'm gonna have to be alone in the end. Everyone is there at the beginning, but then they all leave. It hurts a lot. I tell myself, “Don't be hurt; don't care. What's it gonna get you?" But I can't help it; it hurts. My friends don't come by or even call me. You know, everybody has a life but me. ” 44 year old female, rhabdomyosarcoma

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Tasks - Life Threatening IllnessKen Doka PhD, 1993

• Pre-diagnostic phase• Acute phase• Chronic phase• Recovery• Terminal phase

Four Major Tasks

1. Responding to the physical fact of disease

2. Coping with the reality of disease3. Preserving self-concept and

relationships4. Dealing with the affective and

existential spiritual issues

“I sit all day looking at these 4 walls thinking about my death. How will I die? Will I be lucky and die in my sleep? Will I suffer? How could I just not be? I don't believe in an afterlife.” 63 year old male, pancreatic cancer

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“I’m more hopeful today then last week. Being in limbo is very hard for me. I can’t stand it. If something is being done I’m more in control. Since I’ve started taking palliative radiation I feel better. Oh, I know the effects of radiation won’t be seen for three months, but emotionally I feel better because I know I’m doing something.”

“You know, I have the look. [ I question - the look?] The cancer look. My face doesn't look the same. Everybody looks at me. I see the difference in their faces & I see the difference when I look at myself in the mirror. Before, nobody believed I had cancer. I didn't look it. Now, everyone believes me. I have the look.

Tasks - Life Threatening IllnessKen Doka PhD, 1993

• Terminal Phase– Saying goodbye– Finding meaning in life – Search for meaning of one’s life– To die appropriately– Hope beyond grave

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“I don't know how I'm gonnamanage. I can't take care of myself. Can you imagine? I can't take care of myself. I would never have believed this. I don't know how I will manage when he leaves. I’m scared. I have no control; I’m so tired.”

“It’s too much effort to go out because the streets are too bumpy in the wheel chair. Each day I feel less & less like me. I can’t do things for myself anymore. It’s like death in here. I went from somebody to nobody. And there are so many people coming in & out all the time - my apartment is like Grand Central Station. It’s too much.” 38 year old single nurse with lung cancer

“I get nervous. My brother is trying to run my life, he’s taking over. He wants to make it easier for me but it's hard. I'm not used to having people do things for me. He is taking control over my life; my apartment. 38 year old

single nurse with lung cancer

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He wants to pay my bills. He wants to get things in order for me, my will, finances. It gets to be too much and I know he means well. He is only trying to help me. But I feel like I'm losing control.

To Find Meaning in Life

• Affirm value of life• Intense search for

meaning• Life review

process• Shared

reminiscence

“I’m very spiritual - I believe in a higher power. I call it G-d but I think it’s the G-d within me that connects with the G-d in heaven. I believe in heaven & angels & miracles & that there is a reason that this is happening.”

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“There is a lesson for all of us in my disease. Everything seems to become very clear, relationships, priorities, not putting things off yet continue to plan for the future. I wouldn’t trade this time for anything. Anyone who thinks it’s better to go instantly is really missing out. Harder, yes. Scarier, yes. But, this is oh so worthwhile.” 63 year old male, pancreatic cancer

Viktor Frankl

An individual has the freedom to choose his or her attitude although one may not have the freedom to change the situation causing the suffering.

“I used to wonder why G_d is keeping me alive, but not anymore. He still has work for me to do here, & when that work is completed then I'll move on to the next phase, whatever that is. People tell me that I make it seem so easy to deal with having something as devastating as cancer. But I'm operating on G_d's strength, not mine.” 48 year old female, ovarian cancer

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To Find Hope That Extends Beyond The Grave

• Changes from "hope of cure

• Other desired hopes• Symbolic immortality

End of Module 2