Hostname: page-component-586b7cd67f-dlnhk Total loading time: 0 Render date: 2024-11-27T21:35:59.542Z Has data issue: false hasContentIssue false

Agency, Autonomy and Euthanasia

Published online by Cambridge University Press:  01 January 2021

Abstract

Agency is the human capacity to freely choose one’s thoughts, motivations and actions without undue internal or external influences; it is distinguished from decisional capacity. Four well-known conditions that can deeply affect agency are depression, demoralization, existential distress, and family dysfunction. The study reviews how they may diminish agency in persons whose circumstances may lead them to consider or request euthanasia or assisted suicide. Since agency has been a relatively neglected dimension of autonomous choice at the end of life, it is argued that to respect the autonomy of individuals, it is essential to establish their agency.

Type
Independent Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Wilson, R. J., “Is Respect for Autonomy Defensible?Is Respect for Autonomy Defensible? 33, no. 6 (2007): 353356.Google ScholarPubMed
Thienpont, L. et al., “Euthanasia Requests, Procedures and Outcomes for 100 Belgian Patients Suffering from Psychiatric Disorders: A Retrospective, Descriptive Study,” British Medical Journal Open 5, no. 7 (2015): e007454; S. van Veen et al., “Euthanasia of Dutch Patients with Psychiatric Disorders between 2015 and 2017,” Journal of Ethics in Mental Heath (Open) 10 (2018): 1-15.Google ScholarPubMed
Government of Canada, “Medical Assistance in Dying,” Endof-life care, 2020, available at <https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html#a2> (last visited August 12, 2020)+(last+visited+August+12,+2020)>Google Scholar
Patients Rights Council, “Assisted Suicide Laws in the United States,” 2017, available at <http://www.patientsrightscouncil.org/site/assisted-suicide-state-laws/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
State of Oregon, “Death with Dignity Act,” Chapter 127, Oregon Health 2019, available at <https://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Oregon Death with Dignity Act: 2019 Data Summary, “Year 22 Annual Report,” Table 1, p. 11. (State of Oregon, Oregon Health, 2020).Google Scholar
Supra note 5.Google Scholar
Swiss Academy of Medical Sciences, “Assessment of Capacity in Medical Practice,” in Medical Ethics Guidelines (Gremper AG, Basel, 2019).).Google Scholar
Radoilska, L., “Depression, Decisional Capacity and Personal Autonomy,” in The Oxford Handbook of Philosophy and Psychiatry, Fulford, K. W. M., Davis, M., Graham, G., Sadler, J., Stanghellini, G., and Thornton, T. eds. (Oxford: Oxford University Press, 2013), Chapter 67, doi: 10.1093/oxfor dhb/9780199579563.013.0067.Google Scholar
Bandura, A., “Human Action in Social Cognitive Theory,Human Action in Social Cognitive Theory, 44, no. 9 (1989): 11751189.Google Scholar
Bandura, A., Social Foundations of Thought and Action (Englewood Cliffs, NJ: Prentice-Hall, 1986).Google Scholar
Schlosser, M., “Agency,” Stanford Encyclopedia of Philosophy, 2019, available at <http://plato.stanford.edu/entries/agency/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Bandura, supra note 10.Google Scholar
Roth, A. S., “Shared Agency and Contralateral Commitments,Shared Agency and Contralateral Commitments, 113, no. 3 (2004): 359410; Roth, A. S., “Practical Intersubjectivity and Normative Guidance: Bratman on Shared Agency,” Journal of Social Ontology 1, no. 1 (2015): 39-48.Google Scholar
Pereboom, D., “Determinism al dente,” Nous 29, no. 1 (1995): 2145; Mele, A., Autonomous Agents: From Self-Control to Autonomy (New York: Oxford University Press, 1995); Fischer, J. M. and Ravizza, M., “Responsibility, Freedom and Reason,” Ethics 102, no. 2 (1993): 368–389; Shoemaker, D., “Caring, identification, and agency,” Ethics 114, no. 1 (2003): 88–118.CrossRefGoogle Scholar
Buss, S., “Personal Autonomy,” Stanford Encyclopedia of Philosophy, 2014, available at <http://plato.stanford.edu/archives/win2014/entries/personal-autonomy/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Nickson, C., “Capacity and Competence,” Life in the Fastlane, 2018, available at <https://lifeinthefastlane.com/ccc/capacity-and-competence/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Charland, L. C., “Decision-Making Capacity,” Stanford Encyclopedia of Philosophy, 2015 available at <http://plato.stanford.edu/archives/win2014/entries/personal-autonomy/> (last visited August 13, 2020), 1-36, 1.+(last+visited+August+13,+2020),+1-36,+1.>Google Scholar
Charland 2015, supra note 18.Google Scholar
Charland 2015, supra note 18.Google Scholar
Supra note 9.Google Scholar
Appelbaum, P. S., “Clinical Practice. Assessment of Patients’ Competence to Consent to Treatment,Clinical Practice. Assessment of Patients’ Competence to Consent to Treatment, 357, no. 18 (2007): 18341840; L. E. Dreer et al., “Cognitive Predictors of Medical Decision-Making Capacity in Traumatic Brain Injury,” Rehabilitation Psychology 53 no. 4 (2008): 486-497; Kim, S. Y. H., “Making Sense of the Variety of Standards,” in Evaluation of Capacity to Consent to Treatment and Research (New York: Oxford University Press, 2010), 26; S. Boettger et al., “Assessment of Decisional Capacity: Prevalence of Medical Illness and Psychiatric Comorbidities,” Palliative Support Care 13, no. 5 (2015): 1275-1281.Google Scholar
Bandura, supra note 11.Google Scholar
Marson, D. C. et al., “Assessing the Competency of Patients with Alzheimer's Disease under Different Legal Standards. A Prototype Instrument,Assessing the Competency of Patients with Alzheimer's Disease under Different Legal Standards. A Prototype Instrument, 52, no. 10 (1995): 949954.Google Scholar
Grisso, T. et al., “The MacCAT-T: A Clinical Tool to Assess Patients’ Capacities to Make Treatment Decisions,The MacCAT-T: A Clinical Tool to Assess Patients’ Capacities to Make Treatment Decisions, 48, no. 11 (1997): 14151419.Google Scholar
Edelstein, B., Hopemont Capacity Assessment Interview Manual and Scoring Guide (Morgantown, WV: West Virginia University, 1999).Google Scholar
Jeste, D. V. et al., “A New Brief Instrument for Assessing Decisional Capacity for Clinical Research,A New Brief Instrument for Assessing Decisional Capacity for Clinical Research, 64, no. 8 (2007): 966974.Google Scholar
Buss, supra note 16.Google Scholar
Karlawish, J., “Assessment of Decision-Making Capacity in Adults,” UpToDate, 2017, available at <https://www.uptodate.com/contents/assessment-of-decision-making-capacityin-adults> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Nickson, supra note 17.Google Scholar
Buss, supra note 16.Google Scholar
Kissane, D. W., Clarke, D. M., and Street, A. F., “Demoralization Syndrome: A Relevant Psychiatric Diagnosis for Palliative Care,Demoralization Syndrome: A Relevant Psychiatric Diagnosis for Palliative Care, 17, no. 1 (2001): 1221.Google Scholar
Robinson, S. et al., “A Systematic Review of the Demoralization Syndrome in Individuals with Progressive Disease and Cancer: A Decade of Research,A Systematic Review of the Demoralization Syndrome in Individuals with Progressive Disease and Cancer: A Decade of Research, 49, no. 3 (2015): 595610.Google Scholar
Id., Kissane, D. W. et al., “The Demoralization Scale: A Report of its Development and Preliminary Validation,” Journal of Palliative Care 20, no. 4, (2004): 269276; S. Robinson et al., “The Relationship Between Poor Quality of Life and Desire to Hasten Death: A Multiple Mediation Model Examining the Contributions of Depression, Demoralization, Loss of Control, and Low Self-Worth,” Journal of Pain Symptom Management 53, no. 2 (2016): 243-249; L. Galiana et al., “The Short Demoraliation Scale (SDS): A New Tool to Appraise Demoralization in Palliative Care,” Palliative Supportive Care 15, no. 5 (2017): 516-523.CrossRefGoogle ScholarPubMed
Sansone, R. A. and Sansone, L. A., “Demoralization in Patients with Medical Illness,” Psychiatry (Edgemont) 7, no. 8 (2010): 4245; G. Rodin et al., “Managing Cancer and Living Meaningfully (CALM): A Randomized Controlled Trial of a Psychological Intervention for Patients with Advanced Cancer,” Journal of Clinical Oncology 36, no. 23 (2018): 2422-2432.Google ScholarPubMed
Grassi, L. and Nanni, M. G., “Demoralization Syndrome: New Insights in Psychosocial Cancer Care,Demoralization Syndrome: New Insights in Psychosocial Cancer Care, 112, no. 14 (2016): 21302133.Google Scholar
Robinson, supra note 33.Google Scholar
World Health Organisation, Depression and other Common Mental Disorders, (Geneva: WHO Document Productions Services, 2017 Licence: CC BY-NC-SA 3.0 IGO), 7.Google Scholar
Parekh, R., “What is Depression?” American Psychiatric Association, 2017, available at <https://www.psychiatry.org/patients-families/depression/what-is-depression> (last visited August 13, 2020); Beyond Blue, “Depression Signs and Symptoms,” 2018, available at <https://www.beyondblue.org.au/the-facts/depression/signs-and-symptoms> (last visited August 13, 2020); National Health Service, “Diagnosis of Clinical Depression,” 2016, available at <https://www.nhs.uk/conditions/clinical-depression/diagnosis/> (last visited August 13, 2020).+(last+visited+August+13,+2020);+Beyond+Blue,+“Depression+Signs+and+Symptoms,”+2018,+available+at++(last+visited+August+13,+2020);+National+Health+Service,+“Diagnosis+of+Clinical+Depression,”+2016,+available+at++(last+visited+August+13,+2020).>Google Scholar
Anderson, J. E. et al., “Depression in Primary Care: Tools for Screening, Diagnosis and Measuring Response to Treatment,Depression in Primary Care: Tools for Screening, Diagnosis and Measuring Response to Treatment, 44, no. 8 (2002): 415419.Google Scholar
National Institute of Mental Health, “Depression,” 2018, available at <https://www.nimh.nih.gov/health/topics/depression/index.shtml#part_145399> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Supra note 38.Google Scholar
Supra note 38.Google Scholar
Rosenstein, D. L., “Depression in End-of-Life Care for Patients with Cancer,Depression in End-of-Life Care for Patients with Cancer, 13, no. 1 (2011): 101108.Google Scholar
Haigh, E. A. P. et al., “Depression Among Older Adults: A 20-Year Update on Five Common Myths and Misconceptions,” American Journal of Geriatric Psychiatry 26 (2018): 107122.CrossRefGoogle ScholarPubMed
Kissane, D. W., “The Relief of Existential Suffering,The Relief of Existential Suffering, 172, no. 19 (2012): 15011505.Google Scholar
Ettema, E. et al., “Existenial Loneliness and End-of-Life Care: A Systematic Review,Existenial Loneliness and End-of-Life Care: A Systematic Review, 31, no. 2 (2010): 141169.Google Scholar
Kissane, D. W., “Psychospiritual and Existential Distress: The Challenge for Palliative Care,Psychospiritual and Existential Distress: The Challenge for Palliative Care, 29, no. 11 (2000): 10221025; Bolmsjo, I., “Existential Issues in Palliative Care: Interviews of Patients with Amyotropic Lateral Sclerosis,” Journal of Palliative Medicine 4, no. 4 (2001): 499-505; T. Morita et al., “Existential Concerns of Terminally Ill Cancer Patients Receiving Specialized Palliative Care in Japan,” Support Care Cancer 12, no. 2 (2004): 137-140.Google Scholar
Chochinov, H. M. et al., “Dignity in the Terminally Ill: revisited,” Palliative Medicine 9 (2006): 666672.CrossRefGoogle ScholarPubMed
Henoch, I. and Danielson, E., “Existential Concerns among Patients with Cancer and Interventions to Meet Them: An Integrative Literature Review,Existential Concerns among Patients with Cancer and Interventions to Meet Them: An Integrative Literature Review, 18, no. 3 (2009): 225236.Google Scholar
Lo, C. et al., “Preliminary Psychometrics of the Existential Distress Scale in Patients with Advanced Cancer,” European Journal of Cancer Care 26 (2017): e12597.CrossRefGoogle ScholarPubMed
Kelly, B., McClement, S., and Chochinov, H. M., “Measurement of Psychological Distress in Palliative Care,” Palliative Medicine 20 (2006): 779789.CrossRefGoogle ScholarPubMed
Pelletier, G. et al., “Quality of Life in Brain Tumor Patients: The Relative Contributions of Depression, Fatigue Emotional Distress, and Existential Issues,” Journal of Neurooncology 57, no.1 (2002): 4149; Vehling, S. and Phillip, R., “Existential Distress and Meaning-Focused Interventions in Cancer Survivorship,” Current Opinion in Supportive and Palliative Care 12, no. 1 (2018): 46-51.CrossRefGoogle ScholarPubMed
World Health Organisation, World Report on Ageing and Health (Geneva: WHO Press, 2015), 12.Google Scholar
Poudel-Tandukar, K. et al., “Differences in Suicide Risk According to Living Arrangements in Japanese Men and Women — The Japan Public Health Center-Based (JPHC) Prospective Study,” Journal of Affective Disorders 131, nos. 1-3 (2011): 113119.CrossRefGoogle ScholarPubMed
Kissane, D. W. et al., “Supportive-Expressive Group Therapy: The Transformation of Existential Ambivalence into Creative Living while Enhancing Adherence to Anti-Cancer Therapies,Supportive-Expressive Group Therapy: The Transformation of Existential Ambivalence into Creative Living while Enhancing Adherence to Anti-Cancer Therapies, 13, no. 11 (2004): 755768; D. Spiegel et al., “Effects of Supportive-Expressive Group Therapy on Survival of Patients with Metastatic Breast Cancer: A Randomized Prospective Trial,” Cancer 110, no. 5 (2007): 1130-1138; May, K. L. and Wilson, G., “Treatment of Existential Distress in Life Threatening Illness: A Review of Manualized Interventions,” Clinical Psychology Review 28 (2008): 472-493.Google Scholar
Rodin, supra note 35; Breitbart, W. et al., “Individual Meaning-Centered Psychotherapy for the Treatment of Psychological and Existential Distress: A Randomized Controlled Trial in Patients with Advanced Cancer,Individual Meaning-Centered Psychotherapy for the Treatment of Psychological and Existential Distress: A Randomized Controlled Trial in Patients with Advanced Cancer, 124, no. 15 (2018): 32313239; H. M. Chochinov et al., “The Effect of Dignity Therapy on Distress and End-of-Life Experience in Terminally Ill Patients: A Randomised Controlled Trial,” Lancet Oncology 12, no. 8 (2011): 753-762.Google Scholar
Vaughan, C. E. and Leff, J. P., “The Influence of Family and Social Factors on the Course of Psychiatric Illness,The Influence of Family and Social Factors on the Course of Psychiatric Illness, 129, no. 1 (1976): 125137; Hooley, J., “Expressed Emotion and Psychiatric Illness: From Empirical Data to Clinical Practice,” Behavior Therapy 29, no. 4 (1998): 631-646.Google Scholar
Steinglass, P. and Schuler, T., “The Family with Mental Illness,” Bereavement Care for Families, Kissane, D. W. and Parnes, F. eds. (New York, NY: Routledge, 2014), 5163; Rolland, J. S., “The Family with Chronic Physical Disorders. An Integrative Model,” Bereavement Care for Families, Kissane, D. W. and Parnes, F. eds., (New York: Routledge, 2014), 30-50.Google Scholar
van Wijngaarden, B., Scheneand, A. H., and Koeter, M. W. J., “Family Caregiving in Depression: Impact on Caregivers’ Daily Life, Distress, and Help Seeking,” Journal of Affective Disorders 81 (2004): 211222; T. Y. G. van der Voort, Goossens, P. J. J., and J. J. van der Bijl, “Burden Coping and Needs for Support of Caregivers of Patients with a Bipolar Disorder: A Systemic Review,” Journal of Psychiatric and Mental Health Nursing 14, no. 7 (2007): 679-687.CrossRefGoogle ScholarPubMed
Kissane, D. W. et al., “Perceptions of Family Functioning and Cancer,Perceptions of Family Functioning and Cancer, 3, no. 1 (1994): 259269.Google Scholar
Bowen, M., Family Therapy in Clinical Practice (New York: Jason Aronson, 1978).Google Scholar
Kim, supra note 22.Google Scholar
Yalom, I. D., The Theory and Practice of Group Psychotherapy, 4th Edition (New York, NY: Basic books, 1995).Google Scholar
Kissane, D. W., “The Contribution of Demoralization to Endof-Life Decision Making,The Contribution of Demoralization to Endof-Life Decision Making, 34, no. 4 (2004): 2131; S. Robinson et al., “A Review of the Construct of Demoralization: History, Definitions, and Future Directions for Palliative Care,” American Journal of Hospice and Palliative Care 33, no. 1 (2016): 93-101.Google Scholar
Kissane, supra note 49; Robinson, S. et al., “Refinement and Revalidation of the Demoralization Scale: The DS-II External Validity,Refinement and Revalidation of the Demoralization Scale: The DS-II External Validity, 122, no. 14 (2016): 22602267.Google Scholar
Robinson, supra note 67; Yalom, I. D., The Yalom Reader: Selections From the Work of a Master Therapist and Storyteller (New York, NY: Basic Books, 1998).Google Scholar
Kissane 2001, supra note 32; Kissane 2004, supra note 66.Google Scholar
Beck, A. T. et al., “Hopelessness and Suicidal Behavior,” JAMA 234, no. 11 (1975): 11461149; Wetzel, R. D., “Hopelessness, Depression, and Suicide Intent,” Archives of General Psychiatry 33, no. 9 (1976): 1069.CrossRefGoogle ScholarPubMed
Robinson, supra note 66; Fang, C. K. et al., “A Correlational Study of Suicidal Ideation with Psychological Distress, Depression, and Demoralization in Patients with Cancer,A Correlational Study of Suicidal Ideation with Psychological Distress, Depression, and Demoralization in Patients with Cancer, 22, no. 12 (2014): 31653174; S. Vehling et al., “The Association of Demoralization with Mental Disorders and Suicidal Ideation in Patients with Cancer,” Cancer 123, no. 17 (2017): 3394-3401.Google Scholar
Rudnick, A., “Depression and Competence to Refuse Psychiatric Treatment,” Journal of Medical Ethics 28, no. 3 (2002): 151155.CrossRefGoogle ScholarPubMed
Robinson, supra note 66.Google Scholar
Slaby, J., Paskaleva, A., and Stephan, A., “Enactive Emotion and Impaired Agency in Depression,” Journal of Consciousness Studies 20, no. 7–8 (2013): 3355.Google Scholar
Grisso, supra note 25.Google Scholar
Radoilska, supra note 9.Google Scholar
Stocker, M., “Desiring the Bad: An Essay in Moral Psychology,” Journal of Philosophy 76, no. 12, (1979): 738753.CrossRefGoogle Scholar
Supra note 3.Google Scholar
Supra note 9.Google Scholar
Hobbs, M. and McLaren, S., “The Interrelations of Agency, Depression, and Suicidal Ideation Among Older Adults,” Suicide and Life-Threatening Behavior 39, no. 2 (2009) 161171.CrossRefGoogle ScholarPubMed
Lo, supra note 52; Vehling, S. and Kissane, D. W., “Existential Distress in Cancer: Alleviating Suffering from Fundamental Loss and Change,Existential Distress in Cancer: Alleviating Suffering from Fundamental Loss and Change, 27, no. 11 (2018): 2525–230.Google Scholar
Butow, P. N. et al., “Randomized Trial of ConquerFear: A Novel, Theoretically Based Psychosocial Intervention for Fear of Cancer Recurrence,Randomized Trial of ConquerFear: A Novel, Theoretically Based Psychosocial Intervention for Fear of Cancer Recurrence, 35, no. 36 (2017): 40664077.Google Scholar
Bultz, B. D. et al., “Implementing Screening for Distress, The 6th Vital Sign: A Canadian Strategy for Changing Practice,Implementing Screening for Distress, The 6th Vital Sign: A Canadian Strategy for Changing Practice, 20, no. 5 (2011): 463469; P. N. Butow et al., “Comparison of Implementation Strategies to Influence Adherence to the Clinical Pathway for Screening, Assessment and Management of Anxiety and Depression in Adult Cancer Patients (ADAPT CP): Study Protocol of a Cluster Randomised Controlled Trial,” BMC Cancer 18, no. 1 (2018): 1-12; S. Groff et al., “Examining the Sustainability of Screening for Distress, The Sixth Vital Sign, In Two Outpatient Oncology Clinics: A Mixed-Methods Study,” Psycho-Oncology 27, no. 1 (2018): 141-147.Google Scholar
Pauley, T. et al., “Predictors of Caregiver Distress in the Community Setting Using the Home Care version of the Resident Assessment Instrument,Predictors of Caregiver Distress in the Community Setting Using the Home Care version of the Resident Assessment Instrument, 23, no. 2 (2018): 6069.Google Scholar
Byng-Hall, J., “Scripts and Legends in Families and Family Therapy,” Family Process 27, no. 2 (1988): 167180; J. Byng-Hall, “Loss and Family Scripts,” in Living Beyond Loss: Death in the Family, Walsh, F. and McGoldrick, M. eds., (New York: Norton, 2004).CrossRefGoogle ScholarPubMed
Sudhinaraset, M. et al., “Social and Cultural Contexts of Alcohol Use: Influences in a Social–Ecological Framework,” Alcohol Research 38, no. 1 (2016): 3545.Google Scholar
American Addiction Centers, “Effects of Alcoholism on Families and Close Friends,” 2020, available at <https://www.alcohol.org/faq/problems-associated-with-alcoholism/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
National Organisation for Rare Diseases, “Wernicke-Korsakoff Syndrome,” Rare Diseases Database 2005, available at <https://rarediseases.org/rare-diseases/wernicke-korsakoffsyndrome/> (last visited August 13, 2020).+(last+visited+August+13,+2020).>Google Scholar
Karlawish, supra note 29.Google Scholar
Buss, supra note 16.Google Scholar
Karlawish, supra note 29.Google Scholar
Karlawish, supra note 29.Google Scholar