The Nature of SufferingThe Nature of Suffering

Eric J. CassellEric J. Cassell

September 18, 2006September 18, 2006

Pain and Suffering are Pain and Suffering are Distinct andDistinct and

DifferentDifferent

Pain and Suffering are Pain and Suffering are DistinctDistinct

People will tolerate even very People will tolerate even very severe pain:severe pain:––If they know what it is (its If they know what it is (its significance)significance)

––And if they know it will endAnd if they know it will end

Pain and Suffering are Pain and Suffering are DistinctDistinct

Lesser pain may be poorly Lesser pain may be poorly toleratedtolerated––If it is seen as going on endlesslyIf it is seen as going on endlessly––If it is considered to have dire If it is considered to have dire meaningmeaning

Pain and Suffering are Pain and Suffering are DistinctDistinct

Suffering may stop even if the pain Suffering may stop even if the pain continuescontinuesSuffering may continue even if the Suffering may continue even if the pain stopspain stopsPeople may suffer from pain even People may suffer from pain even when it is not presentwhen it is not present–– Fear of cancer pain recurrenceFear of cancer pain recurrence–– Migraine Migraine –– before it occursbefore it occurs

The same things are The same things are true of other symptoms true of other symptoms

beside painbeside pain

People who have no symptoms People who have no symptoms may suffermay suffer

At the pain of a loved one At the pain of a loved one –– especial when especial when helplesshelplessHelplessness itselfHelplessness itselfPovertyPovertyBetrayalBetrayalThe loss of a lifeThe loss of a life’’s works work

Two constant features of Two constant features of sufferingsuffering

1.1. The importance of the The importance of the futurefuture

2.2. The importance of meaningThe importance of meaning

Bodies may have Bodies may have nociceptionnociception

butbut……Bodies have no sense of the Bodies have no sense of the future future –– only persons doonly persons doBodies do not assign meaning Bodies do not assign meaning –– only persons doonly persons do

Bodies do not suffer,Bodies do not suffer,Only persons suffer!Only persons suffer!

A definition of sufferingA definition of sufferingSuffering is the Suffering is the specificspecific distress that distress that occurs when persons feel their occurs when persons feel their integrity or intactness as persons is integrity or intactness as persons is threatened or disintegrating.threatened or disintegrating.

It continues until the threat is gone or It continues until the threat is gone or intactness or integrity are restoredintactness or integrity are restored

The key term is The key term is personperson

A person is a whole A person is a whole individual human beingindividual human beingA person is not a body A person is not a body –– although a although a person has a bodyperson has a bodyA person is not a mind A person is not a mind –– although a although a person has a mindperson has a mindA person is not a self A person is not a self –– although a although a person has (probably more than one) person has (probably more than one) selfself

Persons are different than Persons are different than other objects of scienceother objects of science

A person is not only this boundaried A person is not only this boundaried object in spaceobject in spaceA person is a trajectory through space and A person is a trajectory through space and timetime““A historic route of the complex and ever A historic route of the complex and ever changing society if its parts.changing society if its parts.”” ((A. N. A. N. Whitehead)Whitehead)

Persons cannot be understood Persons cannot be understood by reducing them to their by reducing them to their

partsparts

Do that and the person Do that and the person disappearsdisappears

A topography of personA topography of person–– PersonalityPersonality–– CharacterCharacter–– A lived pastA lived past–– A familyA family–– The familyThe family’’s pasts past–– A collection of beliefs and meaningsA collection of beliefs and meanings–– Associations with othersAssociations with others–– Society and CultureSociety and Culture–– A BodyA Body–– RolesRoles–– A WorkA Work–– Persons Do ThingsPersons Do Things–– Daily ActivitiesDaily Activities–– A Believed In Future.A Believed In Future.–– A Secret LifeA Secret Life–– A Transcendent or Spiritual Dimension.A Transcendent or Spiritual Dimension.

Persons are of a piecePersons are of a piece

Whatever happens to one Whatever happens to one part happens to the wholepart happens to the wholeWhatever happens to the Whatever happens to the whole, happens to every whole, happens to every partpart

PersonsPersonsTo the classic three, add a fourthTo the classic three, add a fourth––PhysicalPhysical––PsychologicalPsychological––SocialSocial––AND PERSONALAND PERSONAL

All Suffering is Unique and Individual

The identity that the suffering person feels will disintegrate in the future or is doing so now. Existed in the pastAnd is projected into the future.

All Suffering is Unique All Suffering is Unique and Individualand Individual

Even if two people suffer because of an Even if two people suffer because of an identical pain, the suffering of each identical pain, the suffering of each

is unique and particularis unique and particular

Why each person suffers, (not why Why each person suffers, (not why each has pain), will be individual; each has pain), will be individual;

related to them as individual personsrelated to them as individual persons

All Suffering is Unique and All Suffering is Unique and IndividualIndividual

It follows that one can It follows that one can probably never know why probably never know why

the person suffersthe person suffers

Suffering always involves Suffering always involves self conflictself conflict

The clue to this strange fact is that The clue to this strange fact is that meaning always enters into sufferingmeaning always enters into sufferingThe threat to the personThe threat to the person’’s intactness or s intactness or integrity lies in the meaning of the pain or integrity lies in the meaning of the pain or beliefs about its consequences; and we beliefs about its consequences; and we are not always of one mind about this are not always of one mind about this

The lesson of JobThe lesson of Job

There is no Job in the absence of his There is no Job in the absence of his belief that God is justbelief that God is justThe The ““friendsfriends”” say he must be wicked say he must be wicked He knows he has not been He knows he has not been On the other hand, he is suffering On the other hand, he is suffering the fate of the wicked.the fate of the wicked.

The lesson of JobThe lesson of JobOn the other hand On the other hand ““Yet does not God himself Yet does not God himself see my ways and count my every step?see my ways and count my every step?”” (31:4) (31:4) On the other hand, he wants to defend himself On the other hand, he wants to defend himself directly to God. directly to God. ““I would plead the whole I would plead the whole record of my life and present it in court as my record of my life and present it in court as my defensedefense”” (31:37) (31:37) If God sees his every step and he IS righteous, If God sees his every step and he IS righteous, why must he why must he ““plead the whole record of my plead the whole record of my life and present it in court as my defenselife and present it in court as my defense””

The lesson of JobThe lesson of Job

The deepest suffering is not the The deepest suffering is not the privation and bodily sickness and privation and bodily sickness and injury. It is the conflict between what injury. It is the conflict between what Job knows of God and what appears Job knows of God and what appears to be Godto be God’’s actions action

Chronic IllnessChronic Illness

Self-Esteem, Approbativeness – the desire to be approved of, emulativeness – the desire to be considered superior and related to the desire to be like those one admires The sick person has these desires but illness may prevent their realization. That does not stop the desire. It adds to the self-conflict

Chronic IllnessChronic IllnessThe chronically person attempts to meet the standards The chronically person attempts to meet the standards of the everyday world but CANNOT.of the everyday world but CANNOT.These standards appear to be external These standards appear to be external –– the demands the demands of society.of society.But these standards are contained within verbal But these standards are contained within verbal categories categories –– Mother, Teacher, Doctor, Success, Pain, Mother, Teacher, Doctor, Success, Pain, Sick, Patient, etc.Sick, Patient, etc.The result is selfThe result is self--conflict. The Cancer patient who conflict. The Cancer patient who despite considerable illness continues the social or despite considerable illness continues the social or work existence.)work existence.)The impaired person The impaired person ““Trying to be like everyone elseTrying to be like everyone else””–– ““Everyone elseEveryone else”” is contained within the person and is contained within the person and the result is selfthe result is self--conflict.conflict.

Chronic IllnessChronic Illness

The conflict of self versus bodyBehaving as though the body is the enemy – an untrustworthy otherA source of humiliation– Bowel and bladder problems– The source of urges that lead to social failure

THUS SUFFERING IS THUS SUFFERING IS ALWAYS PERSONAL, ALWAYS PERSONAL,

INDIVIDUAL AND MARKED INDIVIDUAL AND MARKED BY SELFBY SELF--CONFLICTCONFLICT

All Suffering involves loss All Suffering involves loss of, or profound change in of, or profound change in

central purposecentral purposeThe word purpose went out of style at the end of the 17th Century. Function was used instead -- because of the introduction of the scientific because of the introduction of the scientific ageageBut purpose pervades all:

Every momentA hierarchy of purposes joining together.Culmination in the central purpose – ME!

Purpose vs Meaning

Viktor Viktor FranklFrankl in Manin Man’’s Search for s Search for MeaningMeaning

–– Meaning is used as in Meaning is used as in ““Finding Finding Meaning in LifeMeaning in Life””

–– Where meaning is like purpose, as in Where meaning is like purpose, as in ““Finding purposeFinding purpose””

Here the meaning of something is what is intended, its sense, significance, importance, interpretation

Central purpose is lostCentral purpose is lost

–– Purpose Shifts to the sick part.Purpose Shifts to the sick part.–– Just as attention goes to the sick part, so Just as attention goes to the sick part, so

does purpose.does purpose.–– The focus becomes entirely directed on the The focus becomes entirely directed on the

self. All purpose becomes directed at relief self. All purpose becomes directed at relief of pain, sickness and suffering.of pain, sickness and suffering.

–– The more total and compelling the injury the The more total and compelling the injury the more complete the remore complete the re--direction of purpose.direction of purpose.

–– Suffering because it arises from the injury to Suffering because it arises from the injury to the whole totally redirects purposethe whole totally redirects purpose..

All Suffering is LonelyAll Suffering is LonelyThe Suffering Person is lonely and The Suffering Person is lonely and

for two reasons for two reasons ––The individuality of suffering.The individuality of suffering.The withdrawal of purpose from The withdrawal of purpose from social engagement.social engagement.

All Suffering is LonelyAll Suffering is LonelyHow do we know the suffering of others? Ask! Are you suffering? What does this mean to you? What would you like me to do for you?

Could we know the suffering person so well that we know suffering is present? Doubtful.Most claims to know another person is suffering arise from the error of the claim – “If that happened to me I would suffer”

Knowing the suffering of anotherKnowing the suffering of another

The sights and sounds of suffering Compassion – Suffering with a person –is a reality.Direct transfer of feeling — empathy

– a perception like any other and must be integrated with other perceptions

– know but not really know.

We Can Know Another Is SufferingWe Can Know Another Is Suffering

Through our shared dominion.We correctly read the behavior of the sufferer.We know we might suffer in the same circumstances.We feel the feelings of the sufferer.We become aware of the change in goals and purposes of the suffering person.We feel the absence of the sufferer from the “we-ness” of any expected encounter.Through the mutual re-enforcement of all of these, I can know that you are suffering.

And yet, the dilemma remains, And yet, the dilemma remains, Suffering is ultimately privateSuffering is ultimately private

To be so private in such distress is to be alone –even lonely. And such loneliness rising from the suffering becomes yet another source of suffering.

Thus to lift the burden of suffering somehow we must relieve its loneliness.

While respecting the sufferer as the individual he or she is and thus alone.

The Special Meaning of MeaningThe Special Meaning of Meaning

–– Almost no matter what the disease Almost no matter what the disease –– the the patientpatient’’s experience depends on the s experience depends on the meaningmeaning

The symptom is the symptomThe symptom is the symptomPain is pain, SOB is SOB, nausea, edema, are Pain is pain, SOB is SOB, nausea, edema, are what they arewhat they areHow the symptom is experienced How the symptom is experienced –– what the what the patient believes will be the futurepatient believes will be the futureIs a question of the meaning assigned by the Is a question of the meaning assigned by the patient with or without the physicianpatient with or without the physician’’s s influenceinfluenceAnd meaning, as we all know, can be And meaning, as we all know, can be changed, thus changing the experiencechanged, thus changing the experience

SUFFERING IS ALWAYS SUFFERING IS ALWAYS PERSONAL, INDIVIDUAL, PERSONAL, INDIVIDUAL, AND MARKED BY SELFAND MARKED BY SELF--CONFLICT and LOSS OF CONFLICT and LOSS OF

PURPOSEPURPOSEANDAND

LONELYLONELY

Suffering occurs because the Suffering occurs because the patient believes that his or patient believes that his or her integrity as a person is her integrity as a person is threatened or disintegratingthreatened or disintegrating

Suffering is not pathology it Suffering is not pathology it is a human stateis a human state that begs that begs for help and relieffor help and relief

Two Recent Conceptualizations Two Recent Conceptualizations of Sufferingof Suffering

Harvey Harvey ChochinovChochinov and the Dignity Modeland the Dignity Model–– J J ClinClin OncolOncol 23:552023:5520--5525 20055525 2005–– J J ClinClin OncolOncol 22:133622:1336--1340 20041340 2004

David David KissaneKissane and the Demoralization and the Demoralization SyndromeSyndrome–– Hastings Center Rep 34:21Hastings Center Rep 34:21--31 200431 2004–– KissaneKissane and Clark Jour Pall Care 17:12and Clark Jour Pall Care 17:12--21 21

20012001

The Dignity Model The Dignity Model ---- ChochinovChochinov–– GenerativityGenerativity –– the notion that onethe notion that one’’s life has stood for s life has stood for

something or has some influence transcending deathsomething or has some influence transcending death–– Continuity of self Continuity of self –– being able to maintain a feeling being able to maintain a feeling

that onethat one’’s essence is intact despite advancing illnesss essence is intact despite advancing illness–– Maintenance of pride Maintenance of pride –– an ability to sustain a sense of an ability to sustain a sense of

positive selfpositive self--regardregard–– Hopefulness Hopefulness –– relates to the ability to maintain a relates to the ability to maintain a

sense of purposesense of purpose–– Aftermath concerns Aftermath concerns –– worries or fears concerning the worries or fears concerning the

burden of oneburden of one’’s death on otherss death on others–– Care tenor Care tenor –– relating to the way others interact with relating to the way others interact with

the patient that may enhance or degrade dignitythe patient that may enhance or degrade dignity

Demoralization Syndrome Demoralization Syndrome –– Kissane Kissane

Demoralization ranges from a normal response to “perceived helplessness” to a morbid form of existential distressFeelings of impotence, isolation, and despairSelf-esteem is damaged and the person feels alienated and rejected by othersMeaningless and hopelessness are prominent

Demoralization Syndrome Demoralization Syndrome –– KissaneKissane

Assessment of the degree of demoralization requires examining the patient’s assumptions about the worldThe patient’s understanding of the world -- the disease, its depredations, available treatment, and prognosis (including the rate of deterioration) should square with what others (doctors and knowledgeable others) know of the patient’s worldAt a certain point the patient’s demoralization becomes a pathological mental state

The relief of sufferingThe relief of suffering

In medical and surgical wards suffering is quite common

Suffering that starts as a result of treatment is also commonIt is not rare for patients with severe and life threatening illness to perceive the behavior of caregivers as abusive and to start to suffer as a result Communications that leave the patients’frightened, increase their uncertainty, and destroy trust leads to suffering

The Relief of SufferingThe Relief of Suffering

Failures to relieve pain or other distress – or actions that actively increase distress are commonLack of attention to patients’ fears, isolation, losses of hope also contributeFailure to be aware of the social and familial dimensions of sickness are commonLack of awareness of these problems may be found in the best cancer centers

The Relief of SufferingThe Relief of Suffering

Prominent symptoms should be relievedPain MUST be relievedSymptoms should be prevented from recurrence where possible

BUT…SUFFERING CAN BE RELIEVED EVEN WHEN SYMPTOMS CANNOT

Relief of SufferingRelief of SufferingTo be relieved suffering must be recognizedTo be recognized suffering should be suspected and looked forSuffering should not be confused with depression

Depression is common in the physically illIt also occurs in the sufferingIn sick patients who do not respond to antidepressants, suspect suffering

Suffering responds to personal attempts to relieve it Suffering responds to attempts to re-establish an intact person Suffering is ineluctably personal and individualThe universal symptom of suffering is loneliness

The Relief of SufferingThe Relief of Suffering

Loss of purpose, selfLoss of purpose, self--conflict, and problems of conflict, and problems of meaning can be addressed meaning can be addressed and usually improvedand usually improved

Remember also that Suffering is not

pathology it is a human state that begs for help and relief

The Relief of Suffering is The Relief of Suffering is the Fundamental Goal of the Fundamental Goal of

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