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
Slide3: 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
THE THEME OF ERIC CASSELL: THE THEME OF ERIC CASSELL
A UNIQUE LIFE LIVED IS A WORK OF ART
HOW HELP A PERSON REPAIR THE SENSE OF BROKENNESS?: HOW HELP A PERSON REPAIR THE SENSE OF BROKENNESS?
LEARN WHO THIS UNIQUE PERSON IS
EXPERIENCE EMPATHICALLY HER/HIS SENSE OF BEING SHATTERED
EACH PERSON’S UNIQUE LIFE IS DEFINED BY MANY DIMENSIONS: 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
HOPE DEPENDS ON MAINTAINING THE INTEGRITY OF THE WHOLE SELF: 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
SIMMONS ON LIFE’S UNEXPECTED LOSSES: 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
WHAT CHRONICALLY DISABLED, DEMORALIZED PERSONS WANT FROM CAREGIVERS : 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
REHAB OF THE SELF: DEFINING THE PERSON: 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?
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
WHO IS S/HE?--1
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 WHO IS S/HE?--2
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 WHO IS S/HE?--3
CLARIFYING WHO S/HE IS: CLARIFYING WHO 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
TOO BUSY FOR THIS?: 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
POSITIVE GOALS & MAINTENANCE OF MORALE: 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?
POSITIVE GOALS & MAINTENANCE OF MORALE: 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?
FOUR THINGS THE SICK PERSON MUST SAY TO LOVED ONES : 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
FOUR THINGS THE SICK PERSON MUST SAY TO LOVED ONES : 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?
Slide24: 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.
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? MAINTAINING HOPE IN THE CONTEXT OF FATAL ILLNESS: GOD--1
Slide26:
PERSONAL RELATIONSHIP WITH GOD (FAITH)
RELATIONSHIPS WITH COMMUNITY OF BELIEVERS THE SPIRITUAL DIMENSION IN END OF LIFE CARE
EXAMINING PHILOSOPHY OF LIFE : 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?
EXAMINING PHILOSOPHY OF LIFE: 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?
EXAMINING PHILOSOPHY OF LIFE: 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?
EXAMINING PHILOSOPHY OF LIFE: EXAMINING PHILOSOPHY OF LIFE
ANY PHILOSOPHY OR CODE YOU LIVE BY? SPECIAL VALUES?
ANYTHING WORTH DYING FOR?
EXAMINING PHILOSOPHY OF LIFE: 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?
EXAMINING PHILOSOPHY OF LIFE: 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?
POSITIVE GOALS & MAINTENANCE OF MORALE: 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
POSITIVE GOALS & MAINTENANCE OF MORALE: 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.
POSITIVE GOALS & MAINTENANCE OF MORALE: 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
POSITIVE GOALS & MAINTENANCE OF MORALE: 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.
POSITIVE GOALS & MAINTENANCE OF MORALE: 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)
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. OUR GIFT TO EACH PATIENT
Slide39: Diana Golden Boston 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
Slide40: Diana Golden Boston 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)
Slide41: 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 of The Hasidim
The Doctor-Patient Relationship : The Doctor-Patient Relationship A good doctor takes care of the disease
A great doctor takes care of the patient
--Sir William Osler
LITMUS TEST FOR TIME OF CRISIS: 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?”
SIMMONS ON RELATION BETWEEN PATIENTS AND US: 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)
DOCTOR BEREAVEMENT: 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)
Slide46: FROM: TO: CHANGE CARE MODEL-2a CURATIVE PALLIATIVE/BEREAVEMENT CURATIVE PALLIATIVE
“SANDCASTLES” by Aline Gross: “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.
JCAHO REQUIREMENTS 2002--NOW!: 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.
JCAHO REQUIREMENTS 2002--NOW!: 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.
JCAHO REQUIREMENTS 2002--NOW!: 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)