ACT on Living and Dying: End-of-life, Meaning, and Mechanisms of Longevity

Jennifer A. Gregg, Ph.D.San Jose State University

OverviewOverview

Discuss meaning and possible mechanisms for quality of life and diseaseDiscuss practical issues related to treating people diagnosed with a terminal illnessProvide a forum for exploring our own feelings/concerns about death and dying

What I will try to bring

Perspective of addressing death and dying issues from with in an ACT framework and clinical/research role.Information about what I think an ACT approach adds to a practice with patients at the end of lifeSome experiences related to what this integration is like for therapists, and how it might differ from other approaches

Quality of Life,Quality of Life, Longevity, Longevity, Meaning, and Happiness Meaning, and Happiness

Does that say “happiness”?! At an ACT workshop?

Quality of LifeQuality of Life

Quality of life ◦ In terminal illness, lower QoL is related to

survival time, and in some types of cancer may be a more powerful predictor of survival than disease characteristics (Ganz, Lee, & Siau, 1991)

◦ Obviously important in its own right to us◦ Very hard to define

◦ What does quality of life mean from our model?

What Quality of Life Isn’t

Happiness◦ Note: see disclaimer on future slides

Non-distress◦ Not realistic goal when facing a terminal

illness

Having the most…◦ Can’t buy your way out of this

Only physically-related (walking up stairs)Not physically-related

Quality of Life and Health MechanismsQuality of Life and Health Mechanisms

Cellular level DNA◦ Telomere length (TL) is an indicator of cell

longevity. ◦ TL shortens with (chronological) age ◦ TL predicts risk factors for cardiovascular disease

TL is shortened in people with age-relevant diseases, such as atherosclerosis

◦ Stress appears to influence the rate of telomere shortening (Epel et al, 2004)

Quality of Life Mechanisms

Immune functioning◦ Related to increase in Natural Killer (NK)

immune cellshave been shown to impact tumor growth in vitro decrease in cancer progression.

◦ Have shown increases in CD4 cells in HIV

Quality of Life ModelsQuality of Life Models

Research on benefit-finding◦ Cancer and HIV patients demonstrated

improved immune markers following stress-management intervention

No reduction in distressThought to be related to benefit-finding and positive affect

Quality of Life and HealthQuality of Life and HealthTraditional ModelTraditional Model

Quality of Life and HealthQuality of Life and HealthMore Recent ModelMore Recent Model Happiness

Hedonia vs. EudaimoniaHedonia: well-being is the feeling of happiness – the occurrence of positive affect and the absence of negative affect (Kahneman et al., 1999).

Eudaimonia: well-being is literally defined as “having a good daimon (or spirit),” but is generally defined as well-being, living well, or doing well (Prior, 1991, p. 149)

Eudaimonia

Aspects of eduaimonia appear to change with age and health◦ Purpose in life◦ Personal growth

Not thought to be trait-like but rather very dynamicNot highly correlated to educational attainmentPositively related to minority status in US

EudaimoniaEudaimonia

High self-reported eudaimonia (primarily purpose in life and personal growth) related to many health characteristics (Lindfors & Lindborg, 2002; Ryff et al, 2004):

◦ Lower overall cortisol ◦ Lower pro-inflammatory cytokines

Related to atherosclerosis, insulin resistance, type 2 diabetes and metabolic syndrome

EudaimoniaEudaimonia

Cardiovascularly, high eudaimonia also related to:◦ Lower glycosylated hemoglobin◦ Lower waist : hip ratio ◦ Lower total/HDL cholesterol ratios◦ Lower weight◦ Higher HDL cholesterol

Compared to hedonia, which was related only to higher HDL in Ryff et al study

Quality of Life and HealthQuality of Life and Health

F = 4.109 (11), p =.07F = 8.145 (13), p <.05

Our Data so far: Experiential Our Data so far: Experiential Avoidance, and Avoidance, and Values in Cancer Values in Cancer patientspatients

Our Data so far: Experiential Our Data so far: Experiential Avoidance and Distress in Cancer Avoidance and Distress in Cancer patientspatients

F = 5.134 (13), p <.05

F = 5.134 (13), p <.05

BDI QoL

AAQ

BDI QoL

AAQ

BDI QoL

AAQ

Figure 2. Mediational Effect of Emotional Acceptance (AAQ) on relationship between distress (BDI) and Quality of Life (QoL)

*p < .05, **p<.01

.864**

.766** -.733**.766** -.733**

-. .599*

Our Data so far: Mediation Our Data so far: Mediation of of Avoidance in Relationship between Avoidance in Relationship between distress and distress and QoLQoL in Cancer patientsin Cancer patients

v

Area Under the Curve:Low Avoid: 275.60 (29.69)High Avoid: 360.70 (62.09)

F = 1.53 (23) p =.229

Slope:Low Avoid: 3.16 (1.02)High Avoid: 5.30 (2.20)

F = .779 (23) p = .38

Our Data so far: Experiential Our Data so far: Experiential Avoidance and cortisol in healthy Avoidance and cortisol in healthy subjectssubjects

Quality of Life and HealthQuality of Life and Health ““Moving TowardMoving Toward””

Health is a rather universal value in some form for most people◦ What is it about health that matters?◦ And, more importantly what is it beyond

health that matters?

FlourishingVitalityLiving with meaningProcess rather than outcome

Exercise: WhatExercise: What’’s in Your Jar?s in Your Jar?Practical Aspects ofTreating Patients at the End of Life

PatientsPatients’’ WordsWordsThere is nothing wrong with me.There’s nothing left to be done.

I was fine the last time I was here.If I ignore it, maybe it will go away.

I’m not ready yet.I might fail.

What will my friends think?This is going to cost more than I can afford.

I’m afraid to tell my wife.I don’t have the energy this will require.I’m scared I’m going to lose my freedom.

It’s going to hurt.It’s too hard.

It’s going to hurt my professional image.I’m not worth this much trouble.

Application of Acceptance ModelApplication of Acceptance Model

Patients are often very fused with what it means to be dying.◦ Control is in the hands of the medical

community◦ Patient may be identified completely with

being sick – conceptualized selfCan be very difficult to generate change◦ Patient may buy the thought that they’re past

the point of change◦ May feel uncomfortable clinically to attempt

to push for growth or change

Application of Acceptance ModelApplication of Acceptance Model

Physicians address mortalityWe address responses to that mortalityThese responses, unlike mortality, are changeableCan lead to meaningful livingValues, values, values

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What is Terminal Illness?What is Terminal Illness?An active and malignant physical illness which cannot be cured and is expected to lead to death.Cultural definition is enormously importantCommon terminal illnesses that often don’t have decline in cognitive functioning include:◦ Some cancers◦ Emphysema/lung conditions◦ End-stage heart, liver, or kidney disease◦ AIDS

PrognosisPrognosis

Very complicated issue◦ Patients not uniform in preference◦ Confounded with concept of “hope”Physicians not sure what to do either. Lamont & Christakis (2001) found:◦ 40% of physicians surveyed would knowingly give

inaccurate estimates of expected survival time to patients and families. ◦ 23% would not tell patients the prognosis, even if

asked. ◦ When they were willing to give prognosis:

average estimated survival time given was 90 days honest estimate was 75 daysactual survival time was 26 days.

Treatment ConsiderationsTreatment ConsiderationsPalliative Care◦ Treatment designed to decrease discomfort◦ Although palliative can be present all along, step of

ending “active treatment” can be very difficult“cutting the chemo line”

Hospice◦ Hospital-based hospice ◦ In-home hospice

Not the same as hospital based care

◦ Again, very difficult step for some people – “giving up”

Treatment ConsiderationsTreatment ConsiderationsPain Management◦ One of most important issues in end-of-life care◦ Patients are almost always undermedicated for painRole of Psychosocial Treatments◦ Clear impact on quality of life & psychological

functioningAnn Branstetter’s study showed treatment effect for ACT with breast cancer patients with acceptance as a mediator

◦ Mixed data on effects on longevityEarly studies showed group treatment focusing on emotional expression improved mortality rates in breast cancer patientsNo clear replication

“Effects of Counseling for Late Stage Cancer Patients” (Linn, Linn, & Harris, 1982)

A counselor was chosen who empathized with the dying, who knew the field, who was trained in counseling and the hospice movement, and who could tolerate working with the dying.

The counselor received additional training in small group seminars with Dr. Kubler-Ross. Patients were seen several times a week. The objective was to develop a relationship of trust with the patient so that the patient could talk freely. Efforts were made to reduce denial but maintain hope. Feelings of control over part of the environment was stressed. Some patients wished to complete unfinished business, plan for their children, or decide about treatments. Meaningful activities were encouraged for as long as possible. Listening to the patient reminisce, in what Butler calls the “life review”helped to reinforce accomplishments, develop a sense of meaning of one’s life, and provide a basis for increased self-esteem and life satisfaction. Above all else, simply listening, understanding, and sometimes only sitting quietly with the patient were elements of treatment.

Legal/Financial ConsiderationsLegal/Financial Considerations

DNR (do not resuscitate) code ◦ Difficult decision – values exploration◦ Healthcare Power of Attorney

Will/financial documentsEuthanasiaExercise: Way and Place of Death

Spirituality IssuesSpirituality Issues

Alternative support/PrayerIssue of hope◦ “Hope is the voice God uses to talk to our

hearts instead of our heads”

Test of faith◦ Assumption that if one has enough faith and

hope, they will survive

Exercise: After Death

GriefGriefPowerful part of death for everybody involved◦ May be important to include family members in

treatment before, during, and after death occurs

Often not linear process◦ Kubler-Ross’ stages may all occur, but not necessarily

in order or singularlyDenialAngerBargainingDepressionAcceptance

Relationship IssuesRelationship Issues

Telling othersGuilt◦ Leaving loved ones behind◦ Worry that person somehow could have

prevented itSelf-stigma with certain diseases

Primary focus of values work◦ Being in heart with people◦ Process vs. outcome

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Therapist ExperienceTherapist Experience

Mortality AwarenessMortality AwarenessDifferentiates us from other animalsHuge variability in response to this◦ “Neurosis”◦ Celebration◦ Sadness◦ Worry◦ Art/literature/musicResponses strengthened when one is diagnosed with a terminal illness

Death ExperiencesDeath Experiences

Just like any other response set, our willingness to approach issues related to death is influenced by our histories.This is one of the most common problems encountered in doing work with terminally ill patientsExercise: Death Experiences

"I thought I would find out what death actually is. I thought I would learn the proper words to speak. . . . I thought I would leave with answers to my questions about the end of life and how people cope with dying. . . I hoped there would be a protocol to follow when a patient dies that would protect me from the suffering andgrief. My experiences throughout this course have proven to me that to have answers to these questions would make me nonhuman."

— Mauro Zappaterra, Harvard Medical School, Class of 2007

Your Own ValuesYour Own Values

Values as a therapist◦ What do you value being about for somebody

who is dying with you? Is it different than with a patient who is not actively dying?

Touch?Prayer?Tears?Personal information?

Thank youThank you

Want the slides?Email: jennifer.gregg@sjsu.edu

Or obtain them from the www.contextualpsychology.org

website