Assisting Families: Assisting Families: Navigating the Shifting Navigating the Shifting

Sands of Evolving IllnessSands of Evolving Illness

Terry Altilio LCSWTerry Altilio LCSWDepartment of Pain Medicine & Department of Pain Medicine &

Palliative CarePalliative CareBeth Israel Medical CenterBeth Israel Medical Center

Family DefinedFamily Defined

Family - individuals identified by the patient as Family - individuals identified by the patient as their primary supports regardless of blood or their primary supports regardless of blood or legal ties.legal ties.

Family caregivers - unpaid individuals who Family caregivers - unpaid individuals who provide or arrange for essential assistance to provide or arrange for essential assistance to a relative or friend who is ill.a relative or friend who is ill.

Extended family & intergenerational Extended family & intergenerational influencesinfluences

Levine 2004Levine 2004

Family ProcessFamily Process

Cohesive families are resilient; draw on a Cohesive families are resilient; draw on a stable foundation of trust & affectionstable foundation of trust & affection

In families where attachments are disrupted, In families where attachments are disrupted, bonds weak or ambivalent, distance & / or bonds weak or ambivalent, distance & / or conflict prevailconflict prevail

King & Quill 2006King & Quill 2006

FamilyFamily

Unit of Care ? Unit of Care ? – Caregivers Caregivers

Part of the Team ?Part of the Team ? Part of the Solution ?Part of the Solution ? Part of the Problem ?Part of the Problem ?

The Patient’s ContextThe Patient’s Context

Understanding of personhood involves Understanding of personhood involves social network that help define the social network that help define the

core identity of the patientcore identity of the patient

Levine & Zuckerman 2004Levine & Zuckerman 2004

Personhood of the PatientPersonhood of the Patient

May include family problems that are May include family problems that are exacerbated & exposed in setting of exacerbated & exposed in setting of illnessillness– ShameShame– RegretRegret– ProtectivenessProtectiveness– Last chance Last chance

Family & TeamFamily & Team Shared responsibilityShared responsibility

– Health care system cannot exist without Health care system cannot exist without collaboration & cooperation of familycollaboration & cooperation of family

– Cost & care shifting to familyCost & care shifting to family– Decisions often made that involve Decisions often made that involve

participation & burden (fair limit on participation & burden (fair limit on sacrifice)sacrifice)

– Presumptions derive from Western Presumptions derive from Western medicines focus on individual autonomymedicines focus on individual autonomy

Levine & Zuckerman 2004Levine & Zuckerman 2004

A Range of Family RolesA Range of Family Roles

ShareShare CareCare ChallengeChallenge Quality controlQuality control LitigateLitigate AdvocateAdvocate

ObserveObserve Assist pt’s thinkingAssist pt’s thinking Assert valuesAssert values Represent historyRepresent history Link to pt’s prior Link to pt’s prior

identityidentity Prior world of the Prior world of the

familyfamily

Working with families Working with families requires an ethic of requires an ethic of

negotiation & negotiation & accommodationaccommodation

Levine & Zuckerman 2004Levine & Zuckerman 2004

Patient/Family NarrativesPatient/Family NarrativesMr. K, 67 married man dx - head & neck cancer being Mr. K, 67 married man dx - head & neck cancer being treated for radiation induced mucositis. His wife of 40 treated for radiation induced mucositis. His wife of 40 yrs sleeps in his hospital room, 2 children & adult yrs sleeps in his hospital room, 2 children & adult grandchildren are involved advocates & participants in grandchildren are involved advocates & participants in his care. In addition to the emotional impact of having his care. In addition to the emotional impact of having a loved family member in pain, difficulty in swallowing a loved family member in pain, difficulty in swallowing created additional worry about nutritional status. While created additional worry about nutritional status. While mucositis is often expected & time limited, the mucositis is often expected & time limited, the combined effect of pain & diminished oral intake combined effect of pain & diminished oral intake exacerbated family distress. The relationship with exacerbated family distress. The relationship with palliative team was tinged with anger, suspicion & palliative team was tinged with anger, suspicion & dissatisfaction.  As medications were trialed, his pain dissatisfaction.  As medications were trialed, his pain improved somewhat but opioid induced confusion improved somewhat but opioid induced confusion developed & necessitated change in medication.developed & necessitated change in medication.

Setting A ContextSetting A Context

Technology & medical advances inviteTechnology & medical advances invite– Choices made from a growing menu of Choices made from a growing menu of

optionsoptions– Evaluation of values & beliefs that inform Evaluation of values & beliefs that inform

decisionsdecisions– Thoughtfulness as responses to illness & Thoughtfulness as responses to illness &

expectations may be less sustainable as expectations may be less sustainable as diseases become chronic, technology & diseases become chronic, technology & media, litigation & legislation change the media, litigation & legislation change the practice world practice world

Setting a ContextSetting a Context

Each family brings their own experiences, Each family brings their own experiences, culture & history to an illnessculture & history to an illness

Within families there are unique relationships Within families there are unique relationships & expectations& expectations

Illness requires reorganization; threat to Illness requires reorganization; threat to homeostasishomeostasis

Authority patterns & family roles shift & Authority patterns & family roles shift & evolveevolve

New normal may be challenged repeatedlyNew normal may be challenged repeatedly

Advanced Illness May RequireAdvanced Illness May Require

Adaptations Adaptations – How we see ourselves ? How we see ourselves ? – How we balance counting on ourselves; How we balance counting on ourselves;

counting on others ?counting on others ?– What values & beliefs inform ourWhat values & beliefs inform our

LifeLife RelationshipsRelationships Decisions ?Decisions ?

Adaptation & LossAdaptation & Loss

Illness itself can create feelings of loss Illness itself can create feelings of loss as we adapt to changing realitiesas we adapt to changing realities– Healthy selfHealthy self– Private self Private self – Goals Goals – Illusion of control & certaintyIllusion of control & certainty

CommunicationCommunication

Whether through words, silence or Whether through words, silence or behaviorsbehaviors– What is saidWhat is said– What is realizedWhat is realized

Involving different languagesInvolving different languages– Evolving processEvolving process– Medicine Medicine – Health & illnessHealth & illness– Private language of the familyPrivate language of the family

Care imitates language; that Care imitates language; that is we tend to relate to people is we tend to relate to people the same way we write & talk the same way we write & talk

about them.about them.

Monroe, et al Monroe, et al 19921992

Language AlertsLanguage Alerts

DysfunctionalDysfunctional Entitled, VIPEntitled, VIP AbusiveAbusive UnrealisticUnrealistic Crazy Crazy DifficultDifficult

In DenialIn Denial DemandingDemanding Borderline Borderline AddictsAddicts Non-compliant/ Non-compliant/

adherentadherent OverwhelmedOverwhelmed

Evolving Illness RequiresEvolving Illness Requires

Continuing communicationContinuing communication Exposure of patients, family & staffExposure of patients, family & staff Consciousness about changing needs Consciousness about changing needs

& ongoing impact& ongoing impact Review & revisions of treatment Review & revisions of treatment

decisions with special attention to decisions with special attention to – Symptoms Symptoms – Changing mindsChanging minds– Distress – patients, family, cliniciansDistress – patients, family, clinicians

Shifting SandsShifting SandsIn a Setting of Shifting Sands In a Setting of Shifting Sands

of Evolving Illnessof Evolving Illness

Evolving Illness - What We Evolving Illness - What We May ExperienceMay Experience

A range of responses, physical, emotional & A range of responses, physical, emotional & cognitivecognitive Fatigue, sleeplessness Fatigue, sleeplessness Sadness, anger, denial, disbelief, fear, guilt, Sadness, anger, denial, disbelief, fear, guilt,

turmoil, hopelessness, worry, anxiety, turmoil, hopelessness, worry, anxiety, depressiondepression

Beliefs, expectations, hopes, poor Beliefs, expectations, hopes, poor concentration, worrisome thoughtsconcentration, worrisome thoughts

Changes in the Changes in the EnvironmentEnvironment

– Actual & SymbolicActual & Symbolic EquipmentEquipment Home structure Home structure Living arrangementsLiving arrangements Etc, etc, etc Etc, etc, etc

– Impact on pattern of family’s lifeImpact on pattern of family’s life

Some impacts & demands Some impacts & demands implicit in the illness experience implicit in the illness experience

for “good enough” familiesfor “good enough” families

Impact of CaregivingImpact of Caregiving

Financial StabilityFinancial Stability Physical WellbeingPhysical Wellbeing Psychological WellbeingPsychological Wellbeing Relationships - Intimate/SocialRelationships - Intimate/Social

Family AssessmentFamily Assessment

AssessmentAssessment– Coping styleCoping style– Communication StyleCommunication Style– Conflict/Crisis Resolution SkillsConflict/Crisis Resolution Skills

Family AssessmentFamily Assessment

Cultural variables Cultural variables Generational Generational

issuesissues Developmental Developmental

stagestage Family structureFamily structure

Decision making Decision making processprocess

Role changesRole changes Intimacy & Intimacy &

sexualitysexuality External supportsExternal supports

History: Patient & FamilyHistory: Patient & Family

– Illness experienceIllness experience– LossLoss– Pre-existing stressesPre-existing stresses– AbuseAbuse– Psychiatric disordersPsychiatric disorders– Substance use & abuseSubstance use & abuse

Interface with systems that Interface with systems that have greater or less stability & have greater or less stability & institutional health & speak a institutional health & speak a unique & confusing languageunique & confusing language

Families Can Be ComplexFamilies Can Be Complex Ingrained patterns of relatingIngrained patterns of relating View as a unit &View as a unit & As individuals in context of As individuals in context of

– Culture, values, emotional & cognitive styleCulture, values, emotional & cognitive style Strengths & challengesStrengths & challenges Speak their languageSpeak their language Patients need family for support, as Patients need family for support, as

allies & in some instances as protectorsallies & in some instances as protectors

Precipitating StressorsPrecipitating Stressors

Period of transition (loss of familiar) Period of transition (loss of familiar) Proximity to death & loss Proximity to death & loss TechnologyTechnology MediaMedia Strong emotionsStrong emotions On displayOn display

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Compounding ComplexityCompounding Complexity

– Psychiatric co- morbiditiesPsychiatric co- morbidities– Substance use or abuse issuesSubstance use or abuse issues– History of sexual or physical abuseHistory of sexual or physical abuse– Psychosocial problemsPsychosocial problems– Adherence issuesAdherence issues– Conflicting staff opinionsConflicting staff opinions– Loss & adaptation– Crisis; “ last chance” Crisis; “ last chance”

Hospice & Palliative CareHospice & Palliative Care With threat of With threat of impending lossimpending loss

– Feelings of vulnerability intensify & Feelings of vulnerability intensify & reactivatereactivate Regression & memories in which person Regression & memories in which person

feltfelt– Helpless Helpless – DeprivedDeprived– DefenselessDefenseless

Emotions flare & behaviors may represent Emotions flare & behaviors may represent childhood survival skills that are unsuccessful childhood survival skills that are unsuccessful in current environment in current environment

Context for StaffContext for Staff

““Walk into a play”Walk into a play” ““Missed the first two acts”Missed the first two acts” ““Foreigners” entering an established Foreigners” entering an established

groupgroup Patients may be less difficult until………Patients may be less difficult until………

Know YourselfKnow Yourself

Just as our patients & families bring theirJust as our patients & families bring theirunique histories so do we – Who challenge unique histories so do we – Who challenge

us ?us ? VIPsVIPs Angry peopleAngry people Helpless & dependentHelpless & dependent Young, oldYoung, old Persons who abuse substancesPersons who abuse substances …………………………………………………………....

& after all is said & & after all is said &

done…..Singular experience done…..Singular experience for patients & family; one of for patients & family; one of

many for us………..many for us……….. Colin Colin

ParkesParkes

ReferencesReferences Groves & Beresin. 1999. Difficult patients, Groves & Beresin. 1999. Difficult patients,

difficult families. New Horizons.difficult families. New Horizons. King & Quill. 2006. Working with Families in King & Quill. 2006. Working with Families in

Palliative Care. Journal of Palliative Medicine.Palliative Care. Journal of Palliative Medicine. Levine. 2000. Always on Call: When Illness Levine. 2000. Always on Call: When Illness

Turns Families into Caregivers. United Turns Families into Caregivers. United Hospital Fund. Hospital Fund.

Snelling. 1990. The role of the family in Snelling. 1990. The role of the family in relation to chronic pain: review of the relation to chronic pain: review of the literature. Journal of Advanced Nursing.literature. Journal of Advanced Nursing.

Vachon, MLS. The Stress of Professional Vachon, MLS. The Stress of Professional Caregivers. Oxford Textbook of Palliative Caregivers. Oxford Textbook of Palliative Medicine. Oxford University Press. 1998.Medicine. Oxford University Press. 1998.