Desire for Hastened Death Amongst Veterans Facing Terminal Illness

VA St. Louis Health Care System

Anupam Agarwal, MD, MSHAMedical Director, Palliative Care ProgramAssociate Chief of StaffVA St. Louis Health Care System

Mark F. Heiland Ph.D.Clinical PsychologistSiteman Cancer Center, Barnes Jewish HospitalWashington University at St. Louis

Disclosure: There are no relevant financial relationships to disclose

ObjectivesIntroduction Definition of Desire for Hastened Death Distinguish

DHD from Suicidal Ideation DHD LiteratureDHD RecommendationsAssessmentClinical managementDocumentationFuture studies of DHD recommended

Definition: Desire for Hastened Death (DHD)

Wish for death to come sooner rather than laterConsequence of progressive diseaseNot imminently suicidalNot request for assisted suicideResponse 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

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

bedCancer treatment is too disfiguringI just want God to take me away from my sufferingI don’t want to be a burden to my family

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 depletionDisengage from life: Resignation.

Risk Factors(Hudson et al., 2006; Olden et al, 2009)

Burden to othersLoss of autonomy (desire for

control)Loss of dignityPresence of physical symptoms

(e.g., pain)Depression/anxietyHopelessnessExistential concerns (e.g.,

meaninglessness)Personality traits

Fear of futurePrevious experience with death

(i.e., care-giver)Lack of social supportLoss of “self”Avoid dying processFear of medical symptoms

(dyspnea)Poor quality of careSubstance abuseLoss of physical functioning

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

DHD as Distinguished From SIIn Palliative Care Patients

Medical CauseA 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

Barriers to Assess and Respond to DHD(Hudson et al, 2006)

Provider PatientFear of diminishing hopeTime consumingUncertainty about when to

assessFear of responding

inappropriatelyProfessional/legal sanctionsLack of knowledgeInvasion of privacyNot responsible for DHD

Only 25 % discuss DHD unprompted

Not enough timeBurden health care

professionalProfessional will not helpDHD is unreasonableDHD perceived to be failure

of coping with illness

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 factorsDistinguish from SI and PTSD Explore mitigating factorsAssess depression/hopelessness (Rodin et al., 2008)Perceived burden to others (McPherson, Wilson &

Murray, 2007)Assess motivation to change treatment approach

Palliative Care Clinical ProtocolReferral 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 careFeedback to referring provider

Palliative Care Team ActionsDelivering further bad news to DHD patient: MD jointly with

PsychologistPsychiatric /other consultants evaluation Need for inpatient palliative care?Education of patient and caregiver: S/S management, what to

expect, treatments availableEducate patient and family in coping with sufferingMaintain accessibility of providersMeaning and purpose, gain sense of control, hopeStay engaged, communicate Re-evaluate, re-evaluate

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

Clinical Recommendations

Continuity of careEducation re: palliative treatment approachMedical symptom managementCoping with advanced diseaseMeaning-based interventions (Spira, 2000)Interpersonal interventions (McLean & Jones, 2007)Inpatient care at Palliative Care/ Hospice UnitConsultation and support from others

Documentation Recommendations

Provide rational for diagnosisDocument DHD/SI and motivationProvide rationale for level of risk managementDocument changes in goals of careDocument assessment findingsDocument consultation/supervisionF/U and evaluation of resolution of DHD / outcomes:

“good death”

Recommendations for Future Studies of DHD

Develop research protocolExpand study population base Use of DHD protocol by other PCCT providersIncrease validity and reliability:

standardized assessments: DHDstandard protocolanalysis

BibliographyBlackhall, 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.

BibliographyLeeman, 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.

BibliographyRansom, 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.