Overview
ACT on Living and Dying: y Discuss meaning and possible mechanisms End-of-life, Meaning, and Mechanisms of for quality of life and disease Longevity y Discuss practical issues related to treating people diagnosed with a terminal illness y Provide a forum for exploring our own feelings/concerns about death and dying Jennifer A. Gregg, Ph.D. San Jose State University
What I will try to bring y Perspective of addressing death and dying issues from with in an ACT framework and clinical/research role. Quality of Life, Longevity, y Information about what I think an ACT Meaning, and Happiness approach adds to a practice with patients at the end of life Does that say “happiness”?! y Some experiences related to what this At an ACT workshop? integration is like for therapists, and how it might differ from other approaches
Quality of Life What Quality of Life Isn’t y Quality of life y Happiness ◦ In terminal illness, lower QoL is related to ◦ Note: see disclaimer on future slides survival time, and in some types of cancer y Non-distress may be a more powerful predictor of survival ◦ Not realistic goal when facing a terminal than disease characteristics (Ganz, Lee, & Siau, 1991) illness ◦ Obviously important in its own right to us y Having the most… ◦ Very hard to define ◦ Can’t buy your way out of this y Only physically-related (walking up stairs) ◦ What does quality of life mean from our model? y Not physically-related Quality of Life and Health Mechanisms Quality of Life Mechanisms y Cellular level DNA y Immune functioning ◦ Telomere length (TL) is an indicator of cell ◦ Related to increase in Natural Killer (NK) longevity. immune cells ◦ TL shortens with (chronological) age x have been shown to impact tumor growth in vitro ◦ TL predicts risk factors for cardiovascular disease x decrease in cancer progression. x TL is shortened in people with age-relevant diseases, such as atherosclerosis ◦ Have shown increases in CD4 cells in HIV ◦ Stress appears to influence the rate of telomere shortening (Epel et al, 2004)
Quality of Life and Health Quality of Life Models Quality of Life and Health Quality of Life Models Traditional Model y Research on benefit-finding ◦ Cancer and HIV patients demonstrated improved immune markers following stress- management intervention x No reduction in distress x Thought to be related to benefit-finding and positive affect
Quality of Life and Health Quality of Life and Health Happiness More Recent Model y Hedonia vs. Eudaimonia y Hedonia: well-being is the feeling of happiness – the occurrence of positive affect and the absence of negative affect
(Kahneman et al., 1999). y 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 Eudaimonia y Aspects of eduaimonia appear to change y High self-reported eudaimonia (primarily with age and health purpose in life and personal growth) ◦ Purpose in life related to many health characteristics ◦ Personal growth (Lindfors & Lindborg, 2002; Ryff et al, 2004): ◦ Lower overall cortisol y Not thought to be trait-like but rather very dynamic ◦ Lower pro-inflammatory cytokines x Related to atherosclerosis, insulin resistance, type 2 y Not highly correlated to educational diabetes and metabolic syndrome attainment y Positively related to minority status in US
Eudaimonia Quality of Life and Health y Cardiovascularly, high eudaimonia also related to: ◦ Lower glycosylated hemoglobin ◦ Lower waist : hip ratio ◦ Lower total/HDL cholesterol ratios ◦ Lower weight ◦ Higher HDL cholesterol y Compared to hedonia, which was related only to higher HDL in Ryff et al study
Our Data so far: Experiential Our Data so far: Experiential Avoidance, and Values in Cancer Avoidance and Distress in Cancer patients patients
F = 8.145 (13), p <.05 F = 4.109 (11), p =.07
F = 5.134 (13), p <.05
F = 5.134 (13), p <.05 Our Data so far: Mediation of Our Data so far: Experiential Avoidance in Relationship between Avoidance and cortisol in healthy distress and QoL in Cancer patients subjects
Area Under the Curve: Low Avoid: 275.60 Figure 2. Mediational Effect of Emotional Acceptance (AAQ) on relationship between (29.69) distress (BDI) and Quality of Life (QoL) v High Avoid: 360.70 AAQ (62.09) AAQ AAQ .766** -.733** .766** -.733** F = 1.53 (23) p =.229 BDI QoL BDI QoL BDI QoL Slope: .864** -. Low Avoid: 3.16 (1.02) .599* High Avoid: 5.30 (2.20) *p < .05, **p<.01 F = .779 (23) p = .38
Quality of Life and Health “Moving Toward”
y 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? y Flourishing y Vitality y Living with meaning y Process rather than outcome
Practical Aspects of Exercise: What’s in Your Jar? Treating Patients at the End of Life Patients’ Words Application of Acceptance Model
There is nothing wrong with me. y Patients are often very fused with what it There’s nothing left to be done. I was fine the last time I was here. means to be dying. If I ignore it, maybe it will go away. ◦ I’m not ready yet. Control is in the hands of the medical I might fail. community What will my friends think? ◦ Patient may be identified completely with This is going to cost more than I can afford. I’m afraid to tell my wife. being sick – conceptualized self I don’t have the energy this will require. y I’m scared I’m going to lose my freedom. Can be very difficult to generate change It’s going to hurt. ◦ Patient may buy the thought that they’re past It’s too hard. the point of change It’s going to hurt my professional image. I’m not worth this much trouble. ◦ May feel uncomfortable clinically to attempt to push for growth or change
Application of Acceptance Model video y Physicians address mortality y We address responses to that mortality y These responses, unlike mortality, are changeable y Can lead to meaningful living y Values, values, values
What is Terminal Illness? Prognosis y An active and malignant physical illness which y Very complicated issue cannot be cured and is expected to lead to ◦ Patients not uniform in preference death. ◦ Confounded with concept of “hope” y Physicians not sure what to do either. Lamont y Cultural definition is enormously important & Christakis (2001) found: y Common terminal illnesses that often don’t ◦ 40% of physicians surveyed would knowingly give inaccurate estimates of expected survival time to have decline in cognitive functioning include: patients and families. ◦ 23% would not tell patients the prognosis, even if ◦ Some cancers asked. ◦ Emphysema/lung conditions ◦ When they were willing to give prognosis: ◦ End-stage heart, liver, or kidney disease x average estimated survival time given was 90 days x honest estimate was 75 days ◦ AIDS x actual survival time was 26 days. Treatment Considerations
y Palliative Care ◦ Treatment designed to decrease discomfort ◦ Although palliative can be present all along, step of ending “active treatment” can be very difficult x “cutting the chemo line” y Hospice ◦ Hospital-based hospice ◦ In-home hospice x Not the same as hospital based care ◦ Again, very difficult step for some people – “giving up”
“Effects of Counseling for Late Stage Cancer Treatment Considerations Patients” (Linn, Linn, & Harris, 1982) y Pain Management A counselor was chosen who empathized with the dying, who knew the field, who was trained in counseling and the hospice ◦ One of most important issues in end-of-life care movement, and who could tolerate working with the dying. ◦ Patients are almost always undermedicated for pain The counselor received additional training in small group seminars with Dr. Kubler-Ross. Patients were seen several y Role of Psychosocial Treatments times a week. The objective was to develop a relationship of ◦ Clear impact on quality of life & psychological trust with the patient so that the patient could talk freely. Efforts were made to reduce denial but maintain hope. functioning Feelings of control over part of the environment was stressed. x Ann Branstetter’s study showed treatment effect for ACT Some patients wished to complete unfinished business, plan with breast cancer patients with acceptance as a mediator for their children, or decide about treatments. Meaningful activities were encouraged for as long as possible. Listening ◦ Mixed data on effects on longevity to the patient reminisce, in what Butler calls the “life review” x Early studies showed group treatment focusing on emotional helped to reinforce accomplishments, develop a sense of expression improved mortality rates in breast cancer patients meaning of one’s life, and provide a basis for increased self- esteem and life satisfaction. Above all else, simply listening, x No clear replication understanding, and sometimes only sitting quietly with the patient were elements of treatment.
Legal/Financial Considerations Spirituality Issues y DNR (do not resuscitate) code y Alternative support/Prayer ◦ Difficult decision – values exploration y Issue of hope ◦ Healthcare Power of Attorney ◦ “Hope is the voice God uses to talk to our y Will/financial documents hearts instead of our heads” y Euthanasia y Test of faith y Exercise: Way and Place of Death ◦ Assumption that if one has enough faith and hope, they will survive y Exercise: After Death Grief Relationship Issues y Powerful part of death for everybody involved y Telling others ◦ May be important to include family members in y Guilt treatment before, during, and after death occurs ◦ Leaving loved ones behind y Often not linear process ◦ Kubler-Ross’ stages may all occur, but not necessarily ◦ Worry that person somehow could have in order or singularly prevented it x Denial x Self-stigma with certain diseases x Anger y Primary focus of values work x Bargaining x Depression ◦ Being in heart with people x Acceptance ◦ Process vs. outcome
video
Therapist Experience
Mortality Awareness Death Experiences y Differentiates us from other animals y Just like any other response set, our y Huge variability in response to this willingness to approach issues related to ◦ “Neurosis” death is influenced by our histories. ◦ Celebration y This is one of the most common ◦ Sadness problems encountered in doing work ◦ Worry with terminally ill patients ◦ Art/literature/music y Exercise: Death Experiences y Responses strengthened when one is diagnosed with a terminal illness Your Own Values "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 y Values as a therapist answers to my questions about the end of life and how people cope with dying. . . I hoped there would be a protocol to follow ◦ What do you value being about for somebody when a patient dies that would protect me from the suffering and who is dying with you? Is it different than grief. My experiences throughout this course have proven to me that to have answers to these questions would make me with a patient who is not actively dying? nonhuman." x Touch? x Prayer? — Mauro Zappaterra, Harvard Medical School, Class of 2007 x Tears? x Personal information?
Thank you
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