10/12/2014 End-of-Life Care: Ethical and Existential Issues for Psychiatrists Janeta F. Tansey M.D. Ph.D. Virtue Medicine Studio and Clinics October 17, 2014 Ezekiel Emanuel: “Why I Hope to Die at 75” The Atlantic, September 17, 2014 Are we to embrace the “American immortal” or my “75 and no more” view? I think the rejection of my view is literally natural. After all, evolution has inculcated in us a drive to live as long as possible. We are programmed to struggle to survive. . . We are eternally optimistic Americans who chafe at limits, especially limits imposed on our own lives. We are sure we are exceptional. I also think my view conjures up spiritual and existential reasons for people to scorn and reject it. Many of us have suppressed, actively or passively, thinking about God, heaven and hell, and whether we return to the worms. We are agnostics or atheists, or just don’t think about whether there is a God and why she should care at all about mere mortals. We also avoid constantly thinking about the purpose of our lives and the mark we will leave. Is making money, chasing the dream, all worth it? Indeed, most of us have found a way to live our lives comfortably without acknowledging, much less answering, these big questions on a regular basis. We have gotten into a productive routine that helps us ignore them. “ Despite the omnipresence of death and the vast number of rich opportunities available for exploring it, most therapists will find extraordinarily difficult the tasks . . . Denial confounds the process every step of the way . . . . The patient is not the only source of denial, of course. Frequently the denial of the therapist silently colludes with that of the patient. ” Irvin Yalom, “Death and Psychopathology,” from Existential Psychotherapy (1980). 204. 1 10/12/2014 objectives Grief, Loss and Death  Managing as a core psychiatric competency: differentiating psychopathology from existential suffering, and treating both Authenticity  Supporting and continuity of self: Narrative-collection and Truth-telling as psychiatric procedures  Weighing the limits of Physician Aid-in-Dying, including Palliative Sedation: when Beneficence and Non-maleficence conflict Moral Permissibility CASE 1: Phenomenology of Sorrow  A 48 year old scholar who was until recently robust and active has been diagnosed with Grade IV cancer with CNS involvement. He is hospitalized due to mulltiorgan dysfunction.  When the brand-new intern asked what is bothering him the most, in an effort to discern a chief complaint, he states tearfully, “That I am going to die.” “ . . . The types of clinical picture with which patients present, is so broad that clinicians require some organizing principle that will permit them to cluster symptoms, behaviors, and characterological styles into meaningful categories. To the extent that clinicians can apply some structuring paradigm of psychopathology, they are relieved of the anxiety of facing an inchoate situation. ” Irvin Yalom, “Death and Psychopathology,” from Existential Psychotherapy (1980). 110. 2 10/12/2014 Diagnostic Skills, I Bereavement Major Depression  Self Esteem Intact  Self-loathing  Hope for Future  Despair, hopelessness  “Waves” of sadness, with interspersed lightening  Intractable Sadness and Anhedonia  Malleable experience of sadness, which responds to coping and care  Darkened vision of past, present and future, often with distortions about past joys as wrong/empty  Positive memories of past has been said that grief is a kind “ of“Itmadness. I disagree. There is a sanity to grief… given to all, [grief] is a generative and human thing…it acts to preserve the self.” Kay Jamison, Nothing Was the Same ” Psychologist, Dr. Kay Jamison, in memoir after the death of her husband, differentiating between her history of BPAD depression and her experiences of grief. LEO TOLSTOY Death of Ivan Ilyich  During the last days of the isolation in which he lived, lying on the sofa with his face to the wall, isolation in the midst of a populous city among numerous friends and relatives, an isolation that could not have been greater anywhere, either in the depths of the sea or the bowels of the earth—during the last days of that terrible isolation, Ivan Ilyich lived only with memories of the past. . . . The farther back in time he went, the more life he found. “Just as my torments are getting worse and worse, so my whole life got worse and worse,” he thought. .. Life, a series of increasing sufferings, falls faster and faster toward its end— the most frightful suffering. “I am falling . . .” He shuddered, shifted back and forth, wanted to resist, but by then knew there was no resisting…The doctor said his physical agony was dreadful, and that was true; but even more dreadful was his moral agony, and it was this that tormented him most. What had induced the moral agony was that during the night . . . He suddenly asked himself: “What if my entire life, my entire conscious life, simply was not the real thing?” 3 10/12/2014 Pies, Ronald. The Anatomy of Sorrow. Philos Ethics Humanit Med. 2008 Original Source: Watson G, Batchelor S, Claxton G. The Psychology of Awakening: Buddhism, Science, and Our Day-ToDay Lives. Newburyport, Red Wheel/Weiser. 2000. p. 168.  Another experiential difference between sorrow and depression is brought home in an anecdote concerning the writer James Joyce, and his daughter, Lucia, who was eventually diagnosed with schizophrenia. Although apparently apocryphal, the vignette makes an important existential distinction. Supposedly Joyce had brought Lucia to the eminent psychoanalyst, Dr. Carl Jung. Joyce was perplexed, regarding the difference between his own idiosyncratic thinking, and the convoluted thought processes of his daughter. Jung is said to have replied: "She falls. You leap." Defining “Demoralization”  The human experience of ISOLATION, LOSS OF POWER, and LOSS OF MEANING in the context of distress and suffering, when a person’s well-being, sense of purpose and dignity are threatened. Griffith, JL. Gaby, L. “Brief Psychotherapy at the bedside: Countering demoralization from medical illness.” Psychosomatics (46). 2005 “Demoralization is one of the most common reasons why psychiatrists are consulted for medically ill patients, with a request typically posed as, ‘Please evaluate and treat depression.’ Demoralization refers to ‘the various degrees of hopelessness, helplessness, confusion, and subjective incompetence’ that people feel when sensing that they are failing their own or others’ expectations for coping with life’s adversities. Rather than coping, they struggle to survive. Demoralization occurs so commonly that it can be regarded as a universal human experience. Analogous to bereavement, demoralization can result from a myriad of life’s insults other than medical illness. Slavney has argued that demoralization is properly regarded not as a psychiatric disorder but as a normal human response to overwhelming circumstances. Yet frequently, other physicians ask psychiatrists to intervene.” 4 10/12/2014 “Demoralization” in Psychiatry: A VERY short history… Connor and Walton. Demoralization and Remoralization: A review. Nursing Inquiry. 2010.  1973, 1974 Frank, JD—”demoralization” as phenomenon associated with but distinct from primary psychiatric conditions. Primary interest was in remoralization through therapeutic relationship  1982, 1983, 1993, 2007 deFigueredo identified “subjective incompetence” under duress; interest in how to codify term for psychiatric nomenclature  1988 Kleinman—demoralization is often present when depression is not responding to pharmacotherapy, with functional (non-physiologic) sx, and can be exacerbated by orthodox medical approaches. Advocated taking time to collect patient’s story as mini-ethnography.  1991 Frank JD and Frank JB “constitutional vulnerability” aligned with personality and coping traits can lead to demoralization and need for remoralization  1993 Stewart—”CBT less effective for severely demoralized persons”  2000-pr Kissane, Clarke—exploration of demoralization in palliative care: “diminished dignity and self-worth, leading to diminished sense of competence and resilience” Discussion extended to demoralization in healthcare as a dimension of physician burnout  2005 Griffith, Gaby—positive and negative existential postures (see next slide)  2007 Boscaglia, Clarke— increasing “personal coherence.” Wein— “courage” of being associated “ States with existential crises are … both distinctive experiential states and indicators for physiological dysregulation. ” Griffith, JL. Gaby, L. “Brief Psychotherapy at the bedside: Countering demoralization from medical illness.” Psychosomatics (46). 2005 “Existential Postures” Griffith, JL. Gaby, L. Psychosomatics (46). 2005 Vulnerability ~ Demoralization Confusion Resilience ~ Remoralization Isolation Communion Coherence Despair Hope Helplessness Agency Meaninglessness Purpose Cowardice Courage Resentment Gratitude 5 10/12/2014 Confusion or Coherence Isolation or Community  How do you make sense of what you are going through?  Who really understands your situation?  When you are uncertain how to make sense of it, how do you deal with feeling confused?  When you have difficult days, with whom do you talk?  To whom do you turn for help when you feel confused?  [For spiritual] When you feel confused, do you have a sense that God/Higher Power has a way of making sense of it? Do you sense that God sees meaning in your suffering?  In whose presence do you feel a bodily sense of peace?  [For spiritual] Do you feel the presence of God/Higher Power? What does God know about your experience that other people may not understand? Despair or Hope Helplessness or Agency  From what sources do you draw hope?  What is your prioritized list of concerns? What concerns you most? Next most?  On difficult days, what keeps you from giving up?  Who have you known in your life who would not be surprised to see you stay hopeful amid adversity? What did this person know about you that other people may not have known?  What most helps you to stand strong against the challenges of life/illness?  What should I know about you as a person that lies beyond this challenge? Meaninglessness or Purpose Cowardice or Courage  What keeps you going on difficult days?  Have there been moments when you felt tempted to give up, but didn’t? How did you make a decision to persevere?  For whom, or for what, does it matter that you continue to live?  [For terminally ill]: What do you hope to experience or to contribute in the time you have remaining?  [For spiritual]: What does God/Higher Power mean for you to do with your life in the days to come?  When you think of your act of perseverance, does that seem like an act of courage?  Can you imagine seeing yourself as a courageous person?  Can you imagine that others might describe you as a courageous person? 6 10/12/2014 Resentment or Gratitude • For what are you most deeply grateful? • Are there moments when you can still feel joy despite the sorrow that you have been through? • If you could look back on this time from some future time, what would you say that you took from the experience that added to your life? “Proximity to Death” in Schumann-Olivier et al., Palliative Sedation for Existential Distress. Harvard Review. 2008. Pies, Ronald. The Anatomy of Sorrow. Philos Ethics Humanit Med. 2008; 3: 17. 14th century monk, Thomas ΰ Kempis (1380–1471) recognized that sorrow is sometimes appropriate. "Levity of heart and neglect of our faults," he wrote, "make us insensible to the proper sorrows of the soul.“ . . . I believe that an understanding of the phenomenological "lifeworld" of the patient must be incorporated into pluralistic models of depression. In time, we may come to understand how the phenomenology of depression and "proper sorrows" relates to their neurobiological substrates. Indeed, I believe that a full understanding of sorrow and depression will synthesize insights from spiritual, phenomenological and neurobiological perspectives. 7 10/12/2014 objective 2 Supporting AUTHENTICITY at the End of Life: Narrative Collection and Truth-Speaking wish to have a death of one’s “ The own is growing ever rarer. Only a while yet and it will be just as rare to have a death of one’s own as it is already to have a life of one’s own. ” RAINER MARIA RILKE LEO TOLSTOY Death of Ivan Ilyich  His wife came to him and said:  “Jean, dear, do this for me.” (For me?)  “It can’t do you any harm, and it often helps. Really, it’s such a small thing. And even healthy people often . . . “  He opened his eyes wide. “What? Take the sacrament? Why? I don’t want to! And yet . . . “  She began to cry.  “Then you will, dear? I’ll send for our priest, he’s such a nice man.”  “Fine, very good,” he said. . . . [Later] his wife came in to congratulate him on taking the sacrament; she said the things people usually do, and then she added: “You really do feel better, don’t you?”  “Yes,” he said without looking at her. Her clothes, her figure, the expression of her face, the sound of her voice—all these said to him: “Not the real thing. Everything you lived by and still live by is a lie, a deception . . .” And no sooner had he thought this than hatred welled up in him, and with the hatred, excruciating pain, an awareness of inevitable, imminent destruction. 8 10/12/2014 Principle: Respect for Patient Autonomy Decisional Capacity  Assessment in the Present  Focus on specific decision at hand, in view of agreed-upon goals of care AUTHENTICITY  Assessment of Past, Present, and Possible Futures--Narrative  Focus on person’s sense of identity and meaning  Interest in patient’s ability to express and authorize a choice  Interest in coherence of patient values as giving reasons for action  Judging of choices offered in terms of social norms—i.e. “the reasonable patient standard”  Judging choices in terms of patient’s previous beliefs and judgments—looking for consistency in individual story Charles Taylor. The Ethics of Authenticity (1991) “ . . . Each of us has an original way of being human. . . . I am called upon to live my life in this way, and not in imitation of anyone else’s. But this gives a new importance to being true to myself. If I am not, I miss the point of my life, I miss what being human is for me.” (28-29) Authenticity is not about “specialness,” but about subjective experience of BEING HUMAN. “Specialness” as a primary mode of death transcendence” (Yalom)  Immortality/Invulnerability: “I am special. I am immune.” “Death, decay doesn’t apply to me.”  Compulsive Heroism: The hero who defies danger, with a hidden fear of nothingness. “This hero is not choosing; his actions are driven and fixed.”  Workaholic: Doing as a substitute for being.  Narcissism: Exaggerated entitlement to resources and attention, inflates self to “bigger than” death.  Aggression and Control: domination, exploitation, denial of limits  Rescuer-Need and Masochism: Pathological surrender, waiting to be rescued and emphasizing need for rescue 9 10/12/2014 Cautions re: “autonomy” Perverse Autonomy Aka Narcissistic Individualism “I want to, so I will.” “I want to, so it’s wrong of you to question me.” “If I want it, I’ll take it.” Authenticity  I am in the world, and it not only shapes me, but I shape it and myself in it. Freedom comes at the price of responsibility—for self, and other.  I am mortal; I have only so much time to become, create, and discover what I am.  I have the power to create myself in ways that resist popular norms or expectations.  I have the tendency to complacency and wishful fantasies.  I am entirely unique; I am irreducible to object; My passions and choices matter, even though the world resists predictability. CASE 2: Authenticity, w/o Capacity Narrative-Collection as Procedure  An 87 year old man lives alone with his bird and in-home services has no family, but is an active member of a local faith community. He is hospitalized for failure to thrive in the context of multiple diseases, but is persistently delirious despite good medical and psychiatric care, and unable to make decisions for his treatment. His hospital team is concerned that ongoing care is intrusive and futile, but also unsure what to do in the absence of designated next-of-kin or advance directives. “I can only answer the question of ‘What am I to do?’ if I can answer the prior question ‘Of what story or stories do I find myself a part?’” A. MacIntyre, After Virtue 10 10/12/2014 CASE 3: Authenticity, not (blind) Hope Truth-Speaking as Procedure  A 19 year old presents to PsychoOncology clinic. She has melanoma, with many mets to pelvis, with severe pain and has completed two experimental chemotherapy trials. After the process of introduction and some basic back and forth, she is asked if she has any questions that she particularly wants addressed today. She says: “I want to know if I’m going to die from this disease.” The psychiatrist, taken aback because yes—death is certain for—hedges: “What has your oncologist told you?” “He told me that I shouldn’t give up hope.” “ Hope has sometimes been confused with denial. Hope may be supported by a denial of reality— what has been called false hope, foolish hope or fraudulent hope. But hope does not preclude reality. Indeed genuine hope leads a person to face reality . . . It has sometimes been said that confronting patients with reality (as in “truth telling”) destroys hope, but this need not be so.” ” Clarke, D. Kissane, D. Demoralization: its phenomenology and importance. Australian and New Zealand Journal of Psychiatry. 2002 LEO TOLSTOY Death of Ivan Ilyich  The celebrated doctor took leave of him with a grave but not hopeless air. And when Ivan Ilyich looked up at him, his eyes glistening with hope and fear, and timidly asked whether there was any chance of recovery, he replied that he could not vouch for it but there was a chance. The look of hope Ivan Ilyich gave the doctor as he watched him leave was so pathetic that, seeing it, [his wife] actually burst into tears as she left the study to give the celebrated doctor his fee. The improvement in his morale prompted by the doctor’s encouraging remarks did not last long. Once again the same room, the same pictures, draperies, wallpaper, medicine bottles, and the same aching, suffering body. Ivan Ilyich began to moan. They gave him an injection and he lost consciousness. When he came to, it was twilight; his dinner was brought in. He struggled to get down some broth. Then everything was the same again, and again night was coming on. 11 10/12/2014 objective 3 PHYSICIAN AID-IN-DYING AND PALLIATIVE SEDATION CASE 3: palliative sedation: discerning moral permissibility  54 year old woman with prior psychiatric hospitalization for SI in context of dysphoria about her obesity, with helplessness and anger, Dependent personality disorder. SI and mood respond to support, regular meetings with nutritionist and therapist, SSRI.  One year later, diagnosed with ovarian cancer. Chronic pain with functional component and repeated hospitalizations on Gyn-Onc. In my office, collapses on the floor, and states that she cannot bear living like this until she dies. Begs for something to make her sleep as much as possible, even if it hastens her death. Definitions  Respite Sedation: Deep sedation for set time (24-48 hrs), and then reawakened to assess symptom improvement and ongoing needs. Risks- delirium, disinhibition, protracted mechanical ventilation, etc.  Palliative Sedation (also known as continuous, controlled, or deep-sleep sedation) is the intentional sedation of a patient suffering uncontrollable refractory symptoms in the last days of life, to the point of almost or complete unconsciousness, and maintaining sedation until death.  Physician Assisted Suicide: The physician provides the patient, at his/her request with a lethal dose of medication, which the patient selfadministers.  Of note: Two Supreme Court rulings in 1997, Vacco v. Quill and Washington v. Glucksberg, in which the question included whether the Constitution incorporated a right to PAS, made use of the argument that PAS is unnecessary because of the option of palliative/continuous sedation.  Justice O’Connor: “I see no reason to reach that question [of whether PAS should be legalized] . . . A patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate that suffering even to the point of causing unconsciousness and hastening death.” -see Raus et al. AJoBioethics. 11(6). 2011 12 10/12/2014 Putman, M. et al. Intentional Sedation to Unconsciousness at the End of Life: Findings from a National Physician Survey. Journal of Pain and Symptom Management. 46(3). 9/2013. In 2010, a survey was mailed to 2016 practicing U.S. physicians. Of the 1880 eligible physicians, 1156 responded to the survey (62%). Criterion measures included self-reported practice of 1. palliative sedation to unconsciousness until death, and 2. physician endorsement of such sedation for a hypothetical patient with existential suffering at the end of life. One in ten (141/1156) physicians had sedated a patient in the previous 12 months with the specific intention of making the patient unconscious until death. * Two out of three physicians opposed sedation to unconsciousness for existential suffering, both in principle (68%, n = 773) and in the case of a hypothetical dying patient (72%, n = 831). * Eighty-five percent (n = 973) of physicians agreed that unconsciousness is an acceptable side effect of palliative sedation but should not be directly intended. Some Ethical Considerations—responses in American Journal of Bioethics (2011) on Palliative Sedation (PS)  Autonomy ~ Authenticity: Is there value in suffering? Who decides?  Efficacy? How confident are we that sedation is 100% effective at alleviating suffering? “A non-trivial number of patients—0.1-0.7% undergoing general anesthesia experience pain, dysphoria or otherwise suffer while appearing to be fully anesthetized.” (Alexander Kon)  Reversibility: Does the fact that continuous sedation can be modified or stopped make it categorically different than PAS. Does the intention NOT to reverse it make this difference irrelevant at the bedside?  What is the Proximity to Death? AMA suggests that PS is last resort in the last days, for refractory symptoms. Note: Existential suffering may be far from physiological death. Patient requests may be far upstream from imminent death.  Manner of Death when using PS: From the disease while unconscious, or from dehydration/malnutrition from PS? Allowing one to die, or killing?  Slippery Slope: In practice, can boundaries between appropriate/ inappropriate PS be identified and maintained (particular fear of euthanasia)  Erosion of Social Contract--Physician Role as Healer  Physicians/Society using PS due to their own agendas or discomfort “ The point of PS is not to reach a certain level of consciousness (e.g. coma); its point is finding a solution for a refractory symptom and therefore lowering the level of consciousness only as much as needed. . . . Dynamic and proportional. Bert Broekaert, AJOB, June 2011 ” Proportionality is an essential ingredient of palliative sedation. 13 10/12/2014 Schumann-Olivier, et al. The Use of Palliative Sedation for Existential Distress: A Psychiatric Perspective. Harvard Review. Nov-Dec 2008.  “In order to meet the definition of existential distress, a patient must have a medically validated suggesting impending death.” (p. 342) Foundational Ethical Considerations for PS (using Principle of Double Effect) 1. Intended effect must be a good one. The good effect is intended. The bad effect is foreseen, tolerated, and accepted. 2. The action itself is not morally wrong. Despite its consequences, the action itself cannot be a bad action. Sedation is not intrinsically a morally reprehensible act. 3. The bad effect is not the means. Death is not required to alleviate suffering. Sedation, which is morally indifferent is merely the means to relieve suffering. 4. Proportionality. The importance or necessity of providing the intended good effect (the alleviation of suffering in a terminal patient) outweighs or is at least proportional to the unintended bad consequences (death). 5. No less harmful option. The act must be the action of last resort, and obtain the desired effect with the smallest harm. Rousseau P. Palliative sedation in terminally ill patients. In: Machado C, Shewmon DA, eds. Brain death and disorders of consciousness. New York: Kluwer Academic/Plenum, 2004: 263–7 GUIDELINES FOR PALLIATIVE SEDATION FOR EXISTENTIAL SUFFERING 1. Patient should have a terminal disease and be in the advanced stages. 2. A DNR Order must be in effect. 3. All palliative treatments must be exhausted, including treatments for depression, delirium, anxiety and other contributing maladies. 4. A psychological assessment by a skilled clinician should be considered. 5. A spiritual assessment by a skilled clinician or chaplain should be considered. 6. If nutritional support or hydration is present, discussion should be initiated regarding the futility, benefit, and burdens of such therapy in light of impending PS. 7. Informed consent must be obtained from patient or surrogate. 8. Respite sedation should be considered. 9. A scale for monitoring depth of sedation should be considered. Schumann-Olivier, et al. The Use of Palliative Sedation for Existential Distress: A Psychiatric Perspective. Harvard Review. Nov-Dec 2008. “As experts in addressing existential suffering as well as in diagnosing and treating psychiatric symptoms, psychiatrists play an important role . . . . Psychiatrists may also be expected to counsel neuropsychiatric patients on palliative sedation for existential distress when discussing advance directives, conduct a basic spiritual assessment, and advocate for further spiritual care if necessary, and serve as guides at the crossroads of mental illness, ethical conflicts, and end-of-life decision making.” 14 10/12/2014 Summary Thoughts A Prescription for AUTHENTIC Clinical Practice with End-of Life Issues “ We all know that in the basic boundaries of existence we are no different from others. . . Yet deep, deep down each of us believes, as does Ivan Ilyich, that the rule of mortality applies to others but certainly not to ourselves. ” Irvin Yalom, “Death and Psychopathology,” from Existential Psychotherapy (1980) For Physicians: A Prescription for Authenticity  Utilizing SKEPTICISM, IRONY, and HUMOR helps us think about and see more clearly what is true about our existential experience as humans, without despair.  Resisting a childish desire for predictability, cultivate a conscious, CHEERFUL RESILIENCY while living in this world with its absurdities.  Creative Power is the hallmark of human nobility: be POWERFULLY CREATIVE in your life, NOT A SLAVE to what seems to be the given limits.  Acknowledge that Time and Mortality are part of Being in the World. You are MORTAL and frail; make use of the time and existential anxiety you experience.  You are an agent in a world full of other people. Act in GOOD FAITH towards your neighbors.  You can harm others and in so doing, harm yourself. Practice discretion as a moral duty—Do not use your neighbor as a means to your end. DO NOT HARM. 15 10/12/2014 Contact Information: Janeta F. Tansey, MD PhD Virtue Medicine Mind-Body Health & Contemplative Arts 221 E College St, Suite 212 Iowa City, IA 52240 www.virtuemedicine.com [email protected] 16