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DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL?

DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL?. Geriatric Course University South Florida March 12, 2006 Ned H. Cassem, SJ MD Consultation Psychiatrist , MGH Professor, Harvard Medical School. MAINTAINING HOPE IN THE CONTEXT OF FATAL ILLNESS. LIVING WITH THE DISABILITY

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DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL?

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  1. DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL? Geriatric Course University South Florida March 12, 2006 Ned H. Cassem, SJ MD Consultation Psychiatrist , MGH Professor, Harvard Medical School Cassem MGH Psychiatry

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  3. MAINTAINING HOPE IN THE CONTEXT OF FATAL ILLNESS • LIVING WITH THE DISABILITY • THE MAINTENANCE OF MORALE • THE SEARCH FOR MEANING • Avery Weisman, The Vulnerable Self Cassem MGH Psychiatry

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  6. THE THEME OFERIC CASSELL • A UNIQUE LIFE LIVED IS A WORK OF ART Cassem MGH Psychiatry

  7. HOW HELP A PERSON REPAIR THE SENSE OF BROKENNESS? • LEARN WHO THIS UNIQUE PERSON IS • EXPERIENCE EMPATHICALLY HER/HIS SENSE OF BEING SHATTERED Cassem MGH Psychiatry

  8. EACH PERSON’S UNIQUE LIFE IS DEFINED BY MANY DIMENSIONS • Family: Primary, Extended, Close Friends • Culture, Mores, Origins, Geography • Ethnicity, Race, Roots • Faith, Religion, Values, Role Models • Education, Cumulative Experience • Socioeconomic status • Occupation(s), Work Cassem MGH Psychiatry

  9. HOPE DEPENDS ON MAINTAINING THE INTEGRITY OF THE WHOLE SELF • DEALING WITH LOSS OF SELF (ESTEEM): DAMAGE REPAIR & RESTORATION • DEALING WITH LOSS OF OTHERS: BEREAVEMENT Cassem MGH Psychiatry

  10. SIMMONS ON LIFE’S UNEXPECTED LOSSES • “We have seen friends fail and bodies wither. With each loss the trap door opens beneath our feet and we fall, feeling the terrible wind, gazing upward at a life now forever out of reach.” (135-6) • P Simmons, Learning to Fall; The Blessings of an Imperfect Life. NH: Homefarm Books. 2000 Cassem MGH Psychiatry

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  12. WHAT CHRONICALLY DISABLED, DEMORALIZED PERSONS WANT FROM CAREGIVERS • Morag Coate, British writer with severe, recurrent psychosis, described the doctor’s role in saving her life: “Because the doctors cared, and because one of them still believed in me when I believed in nothing, I have survived to tell the tale.” --KR Jamison, Night Falls Fast: Understanding Suicide, NY: Knopf, 1999 Cassem MGH Psychiatry

  13. REHAB OF THE SELF: DEFINING THE PERSON • Who is s/he? • Who was s/he at the top of her/his game? S/he is the same person now. • What defines her/him? Is s/he more than “dying… a lung Ca… crippled… unresponsive…”? • Can the Team deliver her/him from anonymity? Cassem MGH Psychiatry

  14. WHO IS S/HE?--1 • PROUDEST OF • Prowess, strengths, skills, mastery • Achievements (Awards, Rank, Recognition, Productions) • Legacy • AMBIVALENT: The “Black Sheep” • DISAPPOINTMENTS, LOSSES, FAILURES • Failed Plans, Shattered Dreams • Losses, Deaths, Grief, Shame Cassem MGH Psychiatry

  15. WHO IS S/HE?--2 • FAMILY, LOVED ONES • CLOSEST, MOST SIMILAR, MOST OPPOSITE • SAVED, WAS SAVED BY • CORE ANECDOTES • LETTERS TO/FROM, OF GRATITUDE, OF PRAISE • ENEMIES Cassem MGH Psychiatry

  16. WHO IS S/HE?--3 • PASSIONS • FAVORITES • MUSIC (FORMAL, EASY, SACRED) • BOOKS, JOURNALS, PAPER, POEMS, MOVIES • AUTHORS, NEWSCASTERS, ACTOR(ESSE}S • SPORTS PERFORMED/SPECTATOR • HOBBIES, CARS, RESTAURANTS • TRAVEL, VACATIONS • GROUPS, CAUSES, CHARITIES • ADDICTIONS • AVERSIONS Cassem MGH Psychiatry

  17. CLARIFYINGWHO S/HE IS • OFTEN BEST DONE TOGETHER WITH LOVED ONES • MANY TIMES, DESPITE THE YEARS, THIS IS NEW GROUND • OF GREAT POTENTIAL WHEN PATIENT NO LONGER ABLE TO SPEAK BUT REMAINS AWARE Cassem MGH Psychiatry

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  19. TOO BUSY FOR THIS? • “I’ve been touched by the smallest gestures--a squeeze of a hand, a gentle touch, a reassuring word. In some ways those quiet acts of humanity have felt more healing than the high-dose radiation and chemotherapy that hold the hope of a cure”-- Kenneth Schwartz Cassem MGH Psychiatry

  20. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE SICK PERSON-I • HOW DO I LEARN TO LIVE ILL, DISABLED, DISFIGURED? • WHAT GIFTS CAN I GIVE? • CAN THIS NEW TYPE OF LIFE BE MY FINEST HOUR? Cassem MGH Psychiatry

  21. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE SICK PERSON-II • HOW DO I CONDUCT MYSELF? • WHAT ARE MY (NEW) GOALS? • DO I HAVE A NEW MISSION? • WHO AM I NOW? HOW CAN I MATTER? • HOW BEST PREPARE MY LOVED ONES TO LIVE WITHOUT ME? Cassem MGH Psychiatry

  22. FOUR THINGS THE SICK PERSON MUST SAY TO LOVED ONES • 1.Forgive Me • For the times I’ve angered, whined about pain, wasn’t there for you, got drunk or high, or just wore you out • 2. I Forgive You • For the times you let me down or wasn’t there for me, got mad or fed up, or said those really mean things • 3. Thank You • For being the best thing that ever happened to me, for teaching me “half way” makes no sense in marriage, for amazing me by your steadfast love. • 4. I Love You Cassem MGH Psychiatry

  23. FOUR THINGS THE SICK PERSON MUST SAY TO LOVED ONES • These four things should be said every day. Why can’t you go home tonight and begin to say them to your spouse, family, and friends? Cassem MGH Psychiatry

  24. TAKING A HISTORY OF SPIRITUALITY:GOD • Faith is a RELATIONSHIP. • Human brains relate only as human. • The relationship to God obeys laws of human psychology. • Every professional can explore how this relationship works for the sick person. Cassem MGH Psychiatry

  25. MAINTAINING HOPE IN THE CONTEXT OF FATAL ILLNESS:GOD--1 • EXAMINATION OF PATIENT’S FAITH • IS FAITH IMPORTANT IN YOUR LIFE? • WHAT SORT OF A PERSON IS GOD? • COMMUNICATION? 1-WAY? 2-WAY? • DOUBT? (THE SHADOW CAST BY FAITH} • EVIL? WHAT IS GOD’S POSITION ON YOUR ILLNESS? • GUILT? PUNISHMENT? • DEATH? ANYTHING AFTER? • COMMUNITY OF BELIEVERS? Cassem MGH Psychiatry

  26. THE SPIRITUAL DIMENSION IN END OF LIFE CARE • PERSONAL RELATIONSHIP WITH GOD (FAITH) • RELATIONSHIPS WITH COMMUNITY OF BELIEVERS Cassem MGH Psychiatry

  27. EXAMINING PHILOSOPHY OF LIFE • WHO ARE THE MOST IMPORTANT PERSONS IN YOUR LIFE? • ANYONE WHOSE NEEDS YOU WOULD PUT AHEAD OF YOUR OWN? • ANYONE YOU IDENTIFY WITH? ANY HEROES/HEROINES? • HAVE ANY CAUSES? • SENSE OF SERVING OTHERS? WORLD? Cassem MGH Psychiatry

  28. EXAMINING PHILOSOPHY OF LIFE • HOW WOULD YOU DESCRIBE YOUR DISPOSITION? • WHAT SORT OF PERSON DO YOU HOPE TO BE? • AT YOUR BEST, WHAT ARE YOU LIKE? AT YOUR WORST? • ANYONE SEE YOU ONLY AT YOUR BEST? WORST? Cassem MGH Psychiatry

  29. EXAMINING PHILOSOPHY OF LIFE • LOOKING BACK, WHAT HAVE BEEN THE BEST TIMES? WORST TIMES? • WHAT HELPED YOU THROUGH THE ROUGH TIMES? • ANYTHING YOU ARE ESPECIALLY PROUD OF? Cassem MGH Psychiatry

  30. EXAMINING PHILOSOPHY OF LIFE • ANY PHILOSOPHY OR CODE YOU LIVE BY? SPECIAL VALUES? • ANYTHING WORTH DYING FOR? Cassem MGH Psychiatry

  31. EXAMINING PHILOSOPHY OF LIFE • WHAT IS THE PLACE OF FUN IN YOUR LIFE? • LAUGHTER? EVER A TIME WHEN YOU LAUGHED SO HARD YOU BECAME NEARLY HELPLESS? Cassem MGH Psychiatry

  32. EXAMINING PHILOSOPHY OF LIFE • HOW WOULD YOU DESCRIBE YOURSELF? • WHAT SORT OF A PERSON? • HOW DO YOU LIKE TO BE THOUGHT OF? REMEMBERED? • BY SPOUSE? • BY MOTHER? FATHER? SIBS? FRIENDS? • BY PEERS? EMPLOYEES? Cassem MGH Psychiatry

  33. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE CLINICIAN: • HOW DO I UNDERSTAND? • ABOVE ALL TO LISTEN • TO LEARN UNIQUE INDIVIDUAL WORTH • HOW DO I TOLERATE THE EMPATHIC INSIGHTS ABOUT MYSELF? • FACE TO FACE WITH THEIR NEEDS & MINE • MY HELPLESSNESS & DESPAIR CAN ENDANGER THEM Cassem MGH Psychiatry

  34. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE CLINICIAN: A MISSION OF ACCOMPANIMENT • It is the patient’s journey, not ours • Likely to be a “white knuckle” trip • Failure to feel the fear, frustration, discouragement, and the good times, means we are not on board with the patient. Cassem MGH Psychiatry

  35. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE CLINICIAN (CONT’D): • “MOST PATIENTS, GIVEN SPACE, WILL DRAW ON THEIR OWN STRENGTHS AND RESOURCES AND REACH A RESOLUTION OF THEIR INNER PAIN.” • --Cicely Saunders Cassem MGH Psychiatry

  36. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE CLINICIAN (CONT’D): • In end of life care the patient is the primary teacher of all of us caregivers. Each person with a serious illness holds the only key to the secret of why s/he gets up to face the day. Once they know we care, they may choose to let us know what helps them to do it. Cassem MGH Psychiatry

  37. POSITIVE GOALS & MAINTENANCE OF MORALE • FOR THE CLINICIAN (CONT’D): • COMMITMENT TO NON-ABANDONMENT • BASIC RESPECT AND REVERENCE FOR THE SUFFERER IMPRINTED BY OATH • IF NECESSARY, NAKED PRESENCE (FAITH IN ONESELF AND ONE’ S CALL) Cassem MGH Psychiatry

  38. OUR GIFT TO EACH PATIENT • FOR THE CLINICIAN (CONT’D): • If we can find this truth, we can tell the patient that the manner in which s/he coped with this illness and its treatments is not only admirable but something we will never forget--and we will benefit from her/his example. Cassem MGH Psychiatry

  39. Diana GoldenBoston Globe 14 Jan 2001 • 1988 Olympic Gold Medal Winner Giant Slalom in disabled category; clocked > 65 mph • 1988 Female Skier of the Year • Won 19 US and 10 world championships • Age 12 lost R leg to bone cancer, kept skiing (began at age 5), jogged, jumped rope • 1995 Dx’d with fatal metastatic breast cancer • August 1997 married Steve Brosnihan, professional cartoonist Cassem MGH Psychiatry

  40. Diana GoldenBoston Globe 14 Jan 2001 • Golden has been through treatments that work for a while, then stop. “With each drug we’ve run through, there’s one less choice, … so now we are getting pretty creative with treatment.” • December brought the first good test results in a while. Still, Golden doesn’t like to say she is ‘battling’ the cancer; that verb gives the disease too much power. “I’ve managed cancer,” she says, “I’m not battling cancer. I’m too busy living life.”(p. A28) Cassem MGH Psychiatry

  41. When a man is singing, And cannot lift his voice, And another comes and sings with him, Another who can lift his voice, Then the first will be able to lift his voice, too. That is the secret of the bond between spirit and spirit. M. Buber Tales ofThe Hasidim Cassem MGH Psychiatry

  42. The Doctor-Patient Relationship • A good doctor takes care of the disease • A great doctor takes care of the patient • --Sir William Osler Cassem MGH Psychiatry

  43. LITMUS TEST FOR TIME OF CRISIS • TO FAMILY AND LOVED ONES (e.g., to patient and spouse): • “If God told the 3 of us “Tonight at midnight you three are out of here!” would you do between now and then?” Cassem MGH Psychiatry

  44. SIMMONS ON RELATION BETWEEN PATIENTS AND US • For doctors, “how easy it is, in the face of a patient’s anguish, to maintain a carefully practiced professional reserve as a defense against empathy.” (102) Cassem MGH Psychiatry

  45. DOCTOR BEREAVEMENT • When a patient dies, the doctor suffers a loss. • The severity is proportional to the intensity of the bond. • Loss must be grieved. How much can a therapist take? Our trainees? Ourselves? • “Failure to integrate loss is the royal road to dementia” (Semrad) Cassem MGH Psychiatry

  46. CHANGE CARE MODEL-2a FROM: CURATIVE PALLIATIVE TO: CURATIVE PALLIATIVE/BEREAVEMENT Cassem MGH Psychiatry

  47. “SANDCASTLES”by Aline Gross • You like to build sandcastles. I gave you my soul -- A finegrained mound Magnificent images took shape, On which to practice Lofty towers, All your arts. Solid walls, Spirals, reaching to the sky For heaven. Then the waters rose and so did you: You dusted your hands And sighed, And striding inland from the shore You left me, at high tide, To drown. Cassem MGH Psychiatry

  48. JCAHO REQUIREMENTS 2002--NOW! • For each out- or in-patient initial note, the MD must record in the medical record: • 1. S/he asked the patient what role faith, spirituality or religion plays in his life. • 2. The answer to this question. • 3. What the MD will do about # 2. • Failure to record this will produce a fine of $10000 -- or $30000 if MD should have known. Cassem MGH Psychiatry

  49. JCAHO REQUIREMENTS 2002--NOW! • For each out- or in-patient initial note, the MD must record in the medical record: • 1. S/he asked the patient what role faith, spirituality or religion plays in his life. • 2. The answer to this question. • 3. What the MD will do about # 2. • Failure to record this will produce a fine of $10000 -- or $30000 if MD should have known. Cassem MGH Psychiatry

  50. JCAHO REQUIREMENTS 2002--NOW! • Hospital Accreditation Standards (CAMH) Chapters: • Patients Rights R.I.1.3.5 and Examples R.I.1.2.4 • Assessment PE 1 and PE7 • Education (especially dying and substance abuse patients) Cassem MGH Psychiatry

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