Desire for Hastened Death Amongst Veterans Facing Terminal Illness

1. Desire for Hastened Death Amongst Veterans Facing Terminal Illness VA St. Louis Health Care System Anupam Agarwal, MD, MSHA Medical Director, Palliative Care Program Associate Chief of Staff VA St. Louis Health Care System Mark F. Heiland Ph.D. Clinical Psychologist Siteman Cancer Center, Barnes Jewish Hospital Washington University at St. Louis

2. Disclosure: There are no relevant financial relationships to disclose

3. Objectives • Introduction • Definition of Desire for Hastened Death Distinguish DHD from Suicidal Ideation • DHD Literature • DHD Recommendations • Assessment • Clinical management • Documentation • Future studies of DHD recommended

4. Definition: Desire for Hastened Death (DHD) • Wish for death to come sooner rather than later • Consequence of progressive disease • Not imminently suicidal • Not request for assisted suicide • Response to symptoms of suffering (medical and psychological) • Plan/intent of self-harm projected into the future when suffering or debility is unbearable (uncommon) • May occur in context of current suffering

5. Examples of DHD • “I intend to take my life when…” • Medical treatment is no longer helpful. • Cancer recurs. • When pain is constant and unbearable. • When I become debilitated and cannot get out of bed • Cancer treatment is too disfiguring • I just want God to take me away from my suffering • I don’t want to be a burden to my family

6. Categories of DHD(Nissim, Gagliese & Rodin, 2009) • Hypothetical exit plan: To be executed at some future point in disease progression: a sense of control • Expression of despair related to physical symptoms: Transient in nature • Letting go: Related to physical depletion • Disengage from life: Resignation.

7. Risk Factors(Hudson et al., 2006; Olden et al, 2009) • Burden to others • Loss of autonomy (desire for control) • Loss of dignity • Presence of physical symptoms (e.g., pain) • Depression/anxiety • Hopelessness • Existential concerns (e.g., meaninglessness) • Personality traits • Fear of future • Previous experience with death (i.e., care-giver) • Lack of social support • Loss of “self” • Avoid dying process • Fear of medical symptoms (dyspnea) • Poor quality of care • Substance abuse • Loss of physical functioning

8. DHD as Distinguished From Suicidal Ideation (Leeman, 2009) Desire for Hastened Death Suicide Ideation • Physical illness • More rational • Socially understandable • Psychological symptoms secondary to medical symptoms • Medical interventions to reduce physical symptoms • Bereavement less complicated • Psychiatric illness • Less rational • Socially intolerable • Psychological symptoms primary • Psych interventions to reduce mental symptoms • Bereavement more complicated

9. DHD as Distinguished From SIIn Palliative Care Patients Medical Cause A wish for death due to Intent to end life due to medical condition medical condition DHD SI A wish for death due to Intent to end life due to psychiatric condition or psychiatric condition or psychological distress psychological distress Psychiatric Cause

10. Barriers to Assess and Respond to DHD(Hudson et al, 2006) Provider Patient • Fear of diminishing hope • Time consuming • Uncertainty about when to assess • Fear of responding inappropriately • Professional/legal sanctions • Lack of knowledge • Invasion of privacy • Not responsible for DHD • Only 25 % discuss DHD unprompted • Not enough time • Burden health care professional • Professional will not help • DHD is unreasonable • DHD perceived to be failure of coping with illness

11. VA PCCT Assessment(Based on Literature and Peer Recommendations) • Presence of DHD: Do you have a wish for death to come sooner rather than later? • Awareness of contributing factors • Distinguish from SI and PTSD • Explore mitigating factors • Assess depression/hopelessness (Rodin et al., 2008) • Perceived burden to others (McPherson, Wilson & Murray, 2007) • Assess motivation to change treatment approach

12. Palliative Care Clinical Protocol • Referral to Palliative Care Consult Team (PCCT): • First contact by Psychologist: Evaluate DHD • Psychological functioning • DHD factors • Psycho-social interventions • Physician: • Medical symptoms • Evaluate “Total pain” • Education about palliative interventions, S/S, EOL issues • Referral to other services (NP, MSW, MDIV) • Follow-up care • Feedback to referring provider

13. Palliative Care Team Actions • Delivering further bad news to DHD patient: MD jointly with Psychologist • Psychiatric /other consultants evaluation • Need for inpatient palliative care? • Education of patient and caregiver: S/S management, what to expect, treatments available • Educate patient and family in coping with suffering • Maintain accessibility of providers • Meaning and purpose, gain sense of control, hope • Stay engaged, communicate • Re-evaluate, re-evaluate

14. Clinical Interventions • Depression and Hopelessness (Rodin et al, 2008; Chochinov et al, 2005; Chochinov et al, 1998) • Social relationships (Schroepfer, 2008; Ransom et al, 2006) • Palliative care (Peteet et al, 2009) • Clinical interview: Responding to emotional cues (Hudson et al, 2006) Counter transference Elicit emotion Contributing factors Specific concerns

15. Clinical Recommendations • Continuity of care • Education re: palliative treatment approach • Medical symptom management • Coping with advanced disease • Meaning-based interventions (Spira, 2000) • Interpersonal interventions (McLean & Jones, 2007) • Inpatient care at Palliative Care/ Hospice Unit • Consultation and support from others

16. Documentation Recommendations • Provide rational for diagnosis • Document DHD/SI and motivation • Provide rationale for level of risk management • Document changes in goals of care • Document assessment findings • Document consultation/supervision • F/U and evaluation of resolution of DHD / outcomes: “good death”

17. Recommendations for Future Studies of DHD • Develop research protocol • Expand study population base • Use of DHD protocol by other PCCT providers • Increase validity and reliability: • standardized assessments: DHD • standard protocol • analysis

18. Bibliography Blackhall, L.J. (2009). Cultural diversity and palliative care. In Chochinov, H.M. & Breitbart, W. (Eds.), Handbook of psychiatry in palliative medicine (2nd ed., pp. 186-201). New York: Oxford University Press, Inc. Chochinov, H.M., Wilson, K.G., Enns, M. & Lander, S. (1998). Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics 39 (4), 366-369. Chochinov, H.M., Hack, T., Hassard, T., Kristjanson, L.J., McClement, S. & Harlos, M. (2005). Understanding the will to life in patients near death. Psychosomatics, 46 (1), 7-10. Hudson, P. L., et al. (2006). Responding to desire to die statements from patients with advanced disease: Recommendations for health professionals. Palliative Medicine, 20, 703-710. Hudson, P.L., et al. (2006). Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review. Palliative Medicine, 20, 693-701. Kissane, D.W., et al. (2004). The demoralization scale: A report of its development and preliminary validation. Journal of Palliative Care, 20 (4), 269-276.

19. Bibliography Leeman, C.P. (2009). Distinguishing among irrational suicide and other forms of hastened death: Implications for clinical practice. Psychosomatics, 50 (3), 185191. McLean, L.M. & Jones, J. M. (2007). A review of distress and its management in couples facing end-of-life cancer. Psycho-Oncology 16, 603-616. McPherson, C. J., Wilson, K.G. & Murray, M. A. (2007) Feeling like a burden to others: a systematic review focusing on the end of life. Palliative Medicine 21, 115-128. Nissam, R., Gagliese, L. & Rodin, G. (2009). The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study. Social Science & Medicine, 69, 165-171. Olden, M., Pessin, H., Lichtenthal, W.G. & Breitbart, W. (2009). Suicide and the desire for hastened death in the terminally ill. In Chochinov, H.M. & Breitbart, W. (Eds.), Handbook of psychiatry in palliative medicine (2nd ed., pp. 101-112). New York: Oxford University Press, Inc. Peteet, J.R., Meyer, F., deLima Thomas, J., Vitagliano, H.L. (2009). Psychiatric indications of admission to an inpatient palliative care unit. Journal of Palliative Medicine, 12 (6), 521-524.

20. Bibliography Ransom, S., Sacco, W.P., Weitzner, M.A., Azzarello, L. M. & McMillan. S.C. (2006). Interpersonal factors predict increased desire for hastened death in late-stage cancer patients. Annals of Behavioral Medicine, 31 (1), 63-74. Rodin, G., Lo, C., Mikulincer, M., Donner, A., Gagliese, L., & Zimmermann, C. (2008). Pathways to distress: The multiple determinants of depression, hopelessness, and desire for hastened death in metastatic cancer patients. Social Science and Medicine, 68, 562-569. Rosenfeld, B., et al. (1999). Measuring desire for death among patient’s with HIV/AIDS: The schedule of attitudes toward hastened death. American Journal of Psychiatry, 156 (1), 94-100. Schroepfer, T. A. (2008). Social Relationships and their role in the consideration to hasten death. The Gerontologist, 48 (5), 612-621. Spira, J. L. (2000). Existential psychotherapy in palliative care. Chochinov, H.M. & Breitbart, W. (Eds.), Handbook of psychiatry in palliative medicine (1st ed., pp197- 214). New York: Oxford University Press.