Objectives: Psychosocial-spiritual Interventions at End of Life. Based on whose values? Barriers. Types of Distress 3/22/2012

Transcription

1 Objectives: Psychosocial-spiritual Interventions at End of Life Stephan Rallis, DDS, Hospice Chaplain Charla Rasmussen, LCSW St. Joseph Villa Homecare & Hospice Define different types of distress at end of life Identify the 7 fears of dying Identify interventions for managing distress and fears at end of life What does a good death look like? Based on whose values? Free from physical pain Tasks completed Highly individualized Surrounded by loved ones Peaceful Dignity Appropriate Death (Weisman, 1998) - dying in the best way possible, not only retaining vestiges of what made life important and valuable, but surviving with personal significance and self-esteem, along with minimal distress and few intractable symptoms, as long as possible People die the way they live Barriers Types of Distress Poor symptom control Unfinished business Family dynamics Late hospice referral Physical Psychological Social Spiritual 1

2 Pain Physical Distress Only when physical symptoms are managed can patients and families address the other areas of life closure Bowel problems Dyspnea High Anxiety Terminal Restlessness Uneasy feelings of anxiety or depression that result in temporary or permanent harm Feelings of anxiety, sadness, anger Feeling out of control Difficulty Psychological coping Distress with every day problems Unable to problem-solve Wanting to be alone Psychological distress continued Trouble sleeping Not taking care of self Sadness, crying easily Inappropriate laughter Loss of hope Aches and pains Feeling that heart is racing Thoughts of suicide/hastening death Not wanting to follow advice of hospice team (HPNA Patient Teaching Sheets, 2005) Disruption in one s social life(changes in roles, relationships, sense of belonging, sexual function, and appearance) that causes a suffering of mind or body Feeling lonely or alone Unable to carry out personal roles (spouse, parent, etc.) Unable to do job Feeling like a burden Social Distress Financial concerns Social Distress continued Feeling shame or failure regarding inability or lack of interest in sex Not wanting to have visitors, even close friends or relatives (HPNA Teaching Sheets, 2005) Spiritual Distress Disruption in one s beliefs or value system; affects a person s entire being; shakes basic beliefs of one s life Question the meaning of life Afraid to fall asleep at night or other fears Anger at God/higher power Question own belief system Feel a sense of emptiness; loss of direction 2

3 Spiritual Distress Continued Case Study Feelings of being abandoned by God/higher power Seeking spiritual help Question the meaning of suffering Loss of hope Pain and other physical symptoms can be expressions of spiritual distress as well (HPNA Teaching Sheets, 2005) Boots 70 yrold male Vietnam Vet lost part of his arm and one eye when his tank was hit by a rocket Hospice dx head and neck cancer Married 3 times, no children Dora 54 yrold female History of homelessness, domestic violence, drug abuse Hospice dx COPD Estranged from her entire family Seven Fears Faced by the Dying, Dr. Thomas Leicht, Fear of the Process of Dying Will death be painful? Will it be frightening? What will happen to my body? 2. Loss of Control 3. Fear for their Loved Ones 4. The Aloneness of Dying 5. Reflected Fear 6. Life will have been Meaningless 7. The Unknown Foster Hope Provide comfort and control physical symptoms Develop caring relationships Set attainable goals and involve patients in decision making Support spirituality Reminisce about life and emphasize uplifting memories (Holmes, H.; Stein, R.; Knight, C. Alleviating Psychological and Spiritual Pain in Patients with Life-Limiting Illness. 2008) Redefine hope: hope for well-being of others, sense of being rather than doing or having that hopes for things such as serenity, inner peace, eternal rest Recognize small joys of the present Support use of religious rituals and rites Identify valued personal attributes and affirm patient s worth Look at photo albums, reminisce about major events in patient s life Address forgiveness issues Always pray for healing 3

4 Spiritual Advance Directives Taking Care of Forgiveness Issues Satisfying Legacy Needs Letting go of Family Releasing Fear Honoring Final Wishes Acknowledging it is finished Conscious Surrender of this Life Presence Simply being with someone Bearing witness Providing a holding space for feelings and emotions Life review Future gifts Ethical Will Dignity Therapy Leaving a Legacy Dignity Therapy Canadian research study, 2005 Intervention designed to address psychosocial and existential distress among terminally ill patients Invites patients to discuss issues that matter most or that they would most want remembered (video or tape recording) Sessions are transcribed, edited, and returned to patient Dignity Therapy Questions 1. Tell me a little about your life history: particularly the parts that you either remember most or think are the most important. 2. Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember? 3. What are the most important roles you have played in life? Why are they so important to you, and what do you think you accomplished in those roles? 4. What are your most important accomplishments, and what do you feel most proud of? 5. Are there particular things that you feel still need to be said to your loved ones or things that you would want to take the time to say once again? 6. What are your hopes and dreams for your loved ones? 7. What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your loved one? 8. Are there words or perhaps even instructions that you would like to offer your family to help prepare them for the future? 9. In creating this permanent record, are there other things you would like included? (From ChochinovHM, Hack T, McClementS, KristjansonLJ, HarlosM. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J ClinOncol. 2005;23(24):

5 Case Study Conclusion Discussion Boots Bearing Witness Including Family Forgiveness Addressing Social Needs Dora Validation of Life Dignity and Control Presence Legacy Addressing her Fears References 1. Arnold, J. C. (2002). Be Not Afraid; Overcoming the Fear of Death. Farmington, PA: The Plough Publishing House of The BruderhofFoundation. 2. Chochinov, H. M.; Hack, T.; Hassard, T.; Kristjanson, L.J.; McClement, S.; Harlos, M. (2005). Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life. Journal of Clinical Oncology, 23(24), doi: /JCO Becker, E. (1973). The Denial of Death. New York, NY: The Free Press. 4. Flashman, Robert, M.; Flashman, M.; Noble, L.; Quick, S. Ethical Wills: Passing on Treasures of the Heart. The Forum for Family and Consumer Issues 3.3 (1998): 33 pars. 29 December Hilliard, R. E. ( 2005). Hospice and Palliative Care Music Therapy: A Guide to Program Development and Clinical Care.Cherry Hill: NJ: Jeffrey Books. 6. Holmes, H.M.; Stein, R.; Knight, C. F. (2008). Alleviating Psychological and Spiritual Pain in Patients with Life-Limiting Illness. (3 rd ed.). Glenview, IL: American Academy of Hospice and Palliative Medicine. 7. Nelson, J. B. (1973). Human Medicine: Ethical Perspectives on New Medical Issues. Minneapolis, MN: Augsburg Publishing House. 8. Nouwen, H.J.M. (1972). The Wounded Healer; Ministry in Contemporary Society. New York, NY: Doubleday. 9. Nuland. S. (1993). How We Die, Reflections on Life s Final Chapter. New York: Vintage Books. 5