3/12/06Cassem MGH Psychiatry1 DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL? Geriatric...

3/12/06 Cassem MGH Psychiatry 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


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 OFERIC CASSELL

•A UNIQUE LIFE LIVED IS A WORK OF ART


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

• 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

• DEALING WITH LOSS OF SELF (ESTEEM): DAMAGE REPAIR & RESTORATION

• DEALING WITH LOSS OF OTHERS: BEREAVEMENT


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

• 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

• 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?


• 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


• 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


• 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


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


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

• 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?



• 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

• 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

• 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?


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.


• 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


• PERSONAL RELATIONSHIP WITH GOD (FAITH)

• RELATIONSHIPS WITH COMMUNITY OF BELIEVERS

THE SPIRITUAL DIMENSION IN END OF LIFE CARE


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?



• 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?



• LOOKING BACK, WHAT HAVE BEEN THE BEST TIMES? WORST TIMES?

• WHAT HELPED YOU THROUGH THE ROUGH TIMES?

• ANYTHING YOU ARE ESPECIALLY PROUD OF?



• ANY PHILOSOPHY OR CODE YOU LIVE BY? SPECIAL VALUES?

• ANYTHING WORTH DYING FOR?



• WHAT IS THE PLACE OF FUN IN YOUR LIFE?

• LAUGHTER? EVER A TIME WHEN YOU LAUGHED SO HARD YOU BECAME NEARLY HELPLESS?



• 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?



• 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



• 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.



• 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



• 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.



• 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)


• 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


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


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)


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

• 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

• 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

• 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

• 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)


FROM:

TO:

CHANGE CARE MODEL-2a

CURATIVE

PALLIATIVE/BEREAVEMENT

CURATIVE

PALLIATIVE


“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!

• 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.



• 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.



• 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)

3/12/06Cassem MGH Psychiatry1 DO YOU CARE WHETHER YOUR PATIENT’S DEATH IS MEANINGFUL? Geriatric...

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