Responding to Requests for Hastened Death
Gerard S Brungardt MD BeL
1. There are increasing requests for assistance in hastening death.
2. Joiner’s suicide model provides a framework for understanding the situation.
3. Our clinical response is one of active presence to the patient and family, accompanying them in their time of need.
1. Requests for hastened death … Oregon Physician Assisted Suicide as paradigm
(http://intelligencesquaredus.org/debates/upcoming-debates/item/1160-legalize-assisted-suicide)
case
Helen 81 yo lady with breast cancer … requested assisted suicide … primary md and consulting md refused both stating she was clinically depressed … husband called Compassion in Dying whose medical director spoke with Helen … “frustrated and crying because she felt powerless” … daily aerobic exercise until 2 weeks ago … still doing housework … no pain … had experienced the lingering death of her husband … primary concern was anticipated suffering … Compassion in Dying recommended MD … lethal prescription supplied and Helen died soon after.
key dates
1994 legalized in referendum
1994-1997 legal challenges
1997 Oregon Death with Dignity Act implemented
2007 AAHPM adopts “position of studied neutrality”
2015 California passes assisted suicide
key aspects of law
adult (18 yo) resident of Oregon
capable of decision making
terminal illness (< 6mo)
two oral requests (15 days apart)
written request signed by 2 witnesses
prescribing MD and consulting MD confirm dx and prognosis and decision making ability
key clinical aspects
psych referral not mandatory
1998 Oregon 19% psych refer
2009 Oregon 0/59 deaths had psych referral
2009 Washington 3/36 deaths had psych referral
no requirement re pain & suffering
very limited data collection and disclosure
Oregon PAS
-steady increase from 1998 to 2015 in requests (24 -> 218) and suicides (16 -> 132)
– > 50% do not receive palliative rx of any kind (pain control, social work assess, hospice referral, trial of anti-depressant)
-1/2 of the patients for whom any interventions were made changed their minds
-MD’s completely immune to any/all potential criminal, civil or professional liability
-divorced 2X married to commit pas
Patient Concerns: Oregon
Loss of autonomy 89%
Less able to engage in activities making life enjoyable 87%
Loss of dignity 82%
Losing control of bodily functions 58%
Burden on family, friends/caregivers 39%
Inadequate/concern pain control 27%
Financial implications 3%
Oregon Dept Human Services Annual Reports
Patient Concerns – Family Point of View: Oregon
wanting to control circumstances of death
fear of poor qol in future
worry about loss of dignity
worry about loss of independence
poor quality of life
loss of self-care ability
perceived self as burden to others
(physical symptoms rated very low)
Ganzini Why Oregon Patients J Gen Intern Med. Aug 2008; 23(8): 1296
key terms – “desire for hastened death”
Suicide – the act of intentionally killing oneself
Euthanasia– the intentional killing of a person who is suffering in order to eliminate that suffering
Physician Assisted Suicide (PAS) – patient requests lethal dose of medication, physician prescribes, patient takes
Palliative Sedation – the lowering of patient consciousness using medications for the express purpose of limiting patient awareness of suffering that is intractable and intolerable – distinguish proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU)
2. Joiner Suicide Model
Thwarted Belongingness (I am alone) + Perceived Burdensomeness to Others (I am a burden) = Desire for Suicide
+ Capability of Suicide (ability to inflict self-harm) = completed/near-completed suicide
alone = feel real disconnection, thwarted belongingness, the need to belong with or connect to others, ruptured relationships, [this may play bigger role in cultures in which interdependent self-construal is normative]
burden = feel ineffective to the point of feeling themselves a burden on others, perceived burdensomeness, the need to feel effective with or to influence others, assaulted self-image, fractured control, anger related to frustrated dominance, [this may play bigger role in cultures in which autonomous self-construal is normative]
“the person contemplating suicide … is in a categorically different frame of mind. To say that people who die by suicide are lonely at the time of their deaths is only to begin to approximate the truth, rather like saying that the ocean is wet. Loneliness, alienation, isolation, rejection and ostracism are a better approximation, but still do not capture it fully. In fact, I believe that it is impossible to capture the phenomenon fully in words, because it is so beyond ordinary experience …” Joiner Myths About Suicide p.122
Filiberti and colleagues studied vulnerability factors for suicide in five terminal cancer patients who died by suicide while they were cared for at home by palliative care teams. Of all the various possible factors identified, being a burden on others was judged to be one of the two most important … the other was fear of the loss of general competence … a related but weaker form of perceived burdensomeness. [http://www.ncbi.nlm.nih.gov/pubmed/11516596] from Joiner Why People Die by Suicide (kindle location 1180)
Joiner key references
The interpersonal theory of suicide. Van Orden, Kimberly A.; Witte, Tracy K.; Cukrowicz, Kelly C.; Braithwaite, Scott R.; Selby, Edward A.; Joiner Jr., Thomas E. Psychological Review, Vol 117(2), Apr 2010, 575-600. http://dx.doi.org/10.1037/a0018697 (detailed summary of model)(See also Joiner’s book Why People Die by Suicide)
Newsweek http://www.newsweek.com/2013/05/22/why-suicide-has-become-epidemic-and-what-we-can-do-help-237434.html (popular summary of Joiner’s work)
APA http://www.apa.org/science/about/psa/2009/06/sci-brief.aspx (brief summary)
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Kimberly A. Van Orden et. al., “The Interpersonal Theory of Suicide,” Psych Rev. 117(2) (2010): 575
3. Clinical Response
Clinical Issues – risk factors
depression, anxiety (psych)
hopelessness (spiritual)
-the capacity to find purpose in living
-hope – certainty in the future based on the strength of a present reality
social support (social)
-feeling like a burden to others
-loss of autonomy
pain/symptoms – and how they affect activity (bio)
Clinical presentation … suicide – hastened death
passive wish – fleeting – no active plans (up to 40%)
request for assistance (up to 20%)
active desire – with plan (up to 5%)
completed – < 1%
Clinical Issues – assessment
-validate – normalize these thoughts – feelings
-risk factors?
-ideation?
‘many have passing thoughts of suicide … have you?’
have you found yourself thinking you’d be better off dead?
-plan?
-intent?
‘do you think you would carry out?’
-assessment & exploration of feelings, fears and suffering
Asking patients to describe what they think would happen if they killed themselves may elicit wishes for revenge, power, control, punishment, atonement, sacrifice, restitution, escape, sleep, rescue, rebirth, reunion with the dead, or a new life.
-evaluate & address risk factors
-empathy – active listening – mgmt of realistic expectations – normalize distress
Assessment – interventions …
in those desiring hastened death …
thorough assessment – and talk about it
control physical symptoms
provide supportive presence
encourage life review … recognize … purpose – value – meaning
explore … guilt, remorse, forgiveness, reconciliation
facilitate religious expression
reframe goals
encourage meditative practices
focus on healing (rather than cure)
… in short – an attentive – receptive presence to another person as person
Clinical Issues – intervention (state of the art)
-enhance meaning Breitbart,W., Rosenfeld, B., Gibson, C., et al. (2009). Meaning- centered group psychotherapy for patients with advanced cancer. Psycho-oncology, 19, 21–28.
-conserve dignity Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Dignity conserving therapy. Journal of Clinical Oncology, 23, 5520–5525.
-life completion tasks Steinhauser, K.E., Alexander, S.C., Byock, I.R., et al. (2009). Seriously ill patients’ discussions of preparation and life completion. Palliative and Supportive Care, 7, 393–404.
Clinical Response key references
Hudson, PL et. al. Responding to Desire to Die Statements. doi: 10.1177/0269216306071814 Palliat Med October 2006 vol. 20 no. 7 703-710 (full text) http://pmj.sagepub.com/content/20/7/703.long
Romayne Gallagher MD, CCFP Assessing and Managing a Request for Hastened Death
Conclusions …
“What must be made very clear here, is that patients who are suffering during the dying process, and contemplate PAS because they feel they have lost all meaning, dignity and purpose in life, are asking physicians, “Do you agree that my life is worthless because I am dying? They are searching in our responses for a way to resolve the ambivalence. A response affirming the value of one’s life even during the dying process is as powerful and influential as our agreeing that “yes, your life no longer has value and I agree with your decision to die”. Our participation in PAS as physicians chooses a side of the patients’ ambivalence and moves them towards death, when in fact there are very valid reasons to take the other side of the ambivalence towards death and support the meaning, value and dignity of the patient even during the dying process. To assuage concerns of burden, loss of meaning, hopelessness, worthlessness, and loss of dignity. We need to understand this intense complexity of the request for PAS and not feel content to have it go relatively unexplored and feel satisfied that we have a nice set of guidelines for its performance (guidelines that do not require psychiatric assessment or expert palliative care assessment, but rather suggest them). We are a culture that sees things in black and white rather than shades of grey complexity, and we are pacified by guidelines and algorithms. This is a terrible mistake and an injustice to the very vulnerable population of the dying terminally ill.” (Breitbart doi:10.1017/S1478951509990642)
similarly … “Most suicidally depressed patients are not rational individuals who have weighed the balance sheet of their lives and discovered more red than black ink. They are victims of altered attitudes about themselves and their situation, which cause powerful feelings of hopelessness to abound.” Paul McHugh p. 75 Mind has Mountains
bibliography
American College of Physicians 2017 Position Paper
Death of Ivan Ilyich … Leo Tolstoy
Ikiru … Akira Kurosawa
Red Beard … Akira Kurosawa
Handbook of Psychiatry in Palliative Medicine. Chochinov and Breitbart. Oxford. 2009.
The Case Against Assisted Suicide. Kathleen Foley and Herbert Hendin. Johns Hopkins. 2002.
The Physician Assisted Suicide Debacle in The Mind Has Mountains. Paul McHugh. Johns Hopkins. 2006.
The Future of Assisted Suicide and Euthanasia. Neil M. Gorsuch. Princeton. 2006.
Physician Assisted Suicide Ruling in Montana. Wm Breitbart. Pall Supp Care. 2010. p. 1-6.
Countertransference and Ethics. Kelly BJ etal. Pall Supp Care. 2003. 1:367-375.
Sedation, Alimentation, Hydration and Equivocation. Sulmasy. Annals Int Med. 2002. 136:845-849.
Palliative Sedation. Claessens. J Pain Symptom Mgmt. 2008. 36: 310-333.
Death is That Man Taking Names. Robert A. Burt. U California. 2002.
Death Talk. Margaret Somerville. McGill Queens. 2001.
Jansen & Sulmasy, Theor Med Bioeth 2002; 23:321-337 (on agent-narrative/neuro-cognitive suffering)
related issues …
transference/countertransference & ambivalence
Clinical Issues – (counter)transference
-how do doctors and patients behave toward each other in times of stress & tension?
-patient – sick & dying
-doctor – being confronted with ‘failure’ to cure/fix … being confronted with death
-countertransference = unconscious responses of clinician to patient…
-transference = patient to clinician …
… based upon previous patterns of significant relationships in his/her own life
Clinical Issues – (counter)transference
projective identification – whose emotion is it?
countertransference enactment – whose (emotional) need is it?
-challenges of dying patient …
confrontation with the limits of medicine
persistent suffering – despite MD efforts
stark confrontation with death
-run up against MD attributes …
heightened sense of responsibility
tendency to experience guilt
high self-criticism & perfectionism
need for control
– … can lead to MD failure to explore and assess risk factors – depression – hopelessness … MD falls back on the cultural rhetoric of ‘autonomy’ and ‘right to die’ … “the failure to explore the meaning and basis of the patient’s request for hastened death is the real violation of the rights of a dying patient.” (Muskin. JAMA. 279, 323-8)
[Kelly FJ, Varghese FT and Pelusi D. Countertransference and ethics: A perspective on clinical dilemmas in end-of-life decisions. Palliative and Supportive Care. 2003 (1), 367-375]
Clinical Issues – ambivalence
-do we ignore the ambivalence death provokes … and operate under an illusion of control?
-Burt argues (Death is That Man Taking Names) that in our hearts we perceive death as inherently wrong – a logical and moral error
-we have designed systems-laws to suppress-silence this perception … PAS in Oregon is one example
-suffering patient – MD needs to eval …
-‘in control’ patient – MD can prescribe PAS
-re ‘streamlined’ approach of Oregon … “this compressed format also serves to abet the denial of ambivalence, both by the requesting patient and by any evaluating physician.” (Burt)