Presentation on theme: "Assisting Families: Navigating the Shifting Sands of Evolving Illness Terry Altilio LCSW Department of Pain Medicine & Palliative Care Beth Israel Medical."— Presentation transcript:
Assisting Families: Navigating the Shifting Sands of Evolving Illness Terry Altilio LCSW Department of Pain Medicine & Palliative Care Beth Israel Medical Center
Family Defined Family - individuals identified by the patient as their primary supports regardless of blood or legal ties. Family caregivers - unpaid individuals who provide or arrange for essential assistance to a relative or friend who is ill. Extended family & intergenerational influences Levine 2004 Levine 2004
Family Process Cohesive families are resilient; draw on a stable foundation of trust & affection In families where attachments are disrupted, bonds weak or ambivalent, distance & / or conflict prevail King & Quill 2006 King & Quill 2006
Family Unit of Care ? –Caregivers Part of the Team ? Part of the Solution ? Part of the Problem ?
The Patient’s Context Understanding of personhood involves social network that help define the core identity of the patient Levine & Zuckerman 2004 Levine & Zuckerman 2004
Personhood of the Patient May include family problems that are exacerbated & exposed in setting of illness –Shame –Regret –Protectiveness –Last chance
Family & Team Shared responsibility –Health care system cannot exist without collaboration & cooperation of family –Cost & care shifting to family –Decisions often made that involve participation & burden (fair limit on sacrifice) –Presumptions derive from Western medicines focus on individual autonomy Levine & Zuckerman 2004 Levine & Zuckerman 2004
A Range of Family Roles Share Care Challenge Quality control Litigate Advocate Observe Assist pt’s thinking Assert values Represent history Link to pt’s prior identity Prior world of the family
Working with families requires an ethic of negotiation & accommodation Levine & Zuckerman 2004
Patient/Family Narratives Mr. K, 67 married man dx - head & neck cancer being treated for radiation induced mucositis. His wife of 40 yrs sleeps in his hospital room, 2 children & adult grandchildren are involved advocates & participants in his care. In addition to the emotional impact of having a loved family member in pain, difficulty in swallowing created additional worry about nutritional status. While mucositis is often expected & time limited, the combined effect of pain & diminished oral intake exacerbated family distress. The relationship with palliative team was tinged with anger, suspicion & dissatisfaction. As medications were trialed, his pain improved somewhat but opioid induced confusion developed & necessitated change in medication.
Setting A Context Technology & medical advances invite –Choices made from a growing menu of options –Evaluation of values & beliefs that inform decisions –Thoughtfulness as responses to illness & expectations may be less sustainable as diseases become chronic, technology & media, litigation & legislation change the practice world
Setting a Context Each family brings their own experiences, culture & history to an illness Within families there are unique relationships & expectations Illness requires reorganization; threat to homeostasis Authority patterns & family roles shift & evolve New normal may be challenged repeatedly
Advanced Illness May Require Advanced Illness May Require Adaptations –How we see ourselves ? –How we balance counting on ourselves; counting on others ? –What values & beliefs inform our Life Relationships Decisions ?
Adaptation & Loss Illness itself can create feelings of loss as we adapt to changing realities –Healthy self –Private self –Goals –Illusion of control & certainty
Communication Whether through words, silence or behaviors –What is said –What is realized Involving different languages –Evolving process –Medicine –Health & illness –Private language of the family
Care imitates language; that is we tend to relate to people the same way we write & talk about them. Monroe, et al 1992 Care imitates language; that is we tend to relate to people the same way we write & talk about them. Monroe, et al 1992
Family Assessment Cultural variables Generational issues Developmental stage Family structure Decision making process Role changes Intimacy & sexuality External supports
History: Patient & Family –Illness experience –Loss –Pre-existing stresses –Abuse –Psychiatric disorders –Substance use & abuse
Interface with systems that have greater or less stability & institutional health & speak a unique & confusing language
Families Can Be Complex Ingrained patterns of relating View as a unit & As individuals in context of –Culture, values, emotional & cognitive style Strengths & challenges Speak their language Patients need family for support, as allies & in some instances as protectors
Precipitating Stressors Period of transition (loss of familiar) Proximity to death & loss Technology Media Strong emotions On display
Compounding Complexity –Psychiatric co- morbidities –Substance use or abuse issues –History of sexual or physical abuse –Psychosocial problems –Adherence issues –Conflicting staff opinions – –Loss & adaptation –Crisis; “ last chance”
Hospice & Palliative Care With threat of impending loss –Feelings of vulnerability intensify & reactivate Regression & memories in which person felt –Helpless –Deprived –Defenseless Emotions flare & behaviors may represent childhood survival skills that are unsuccessful in current environment
Context for Staff Context for Staff “Walk into a play” “Missed the first two acts” “Foreigners” entering an established group Patients may be less difficult until………
Know Yourself Just as our patients & families bring their unique histories so do we – Who challenge us ? VIPs Angry people Helpless & dependent Young, old Persons who abuse substances ……………………………..
& after all is said & done…..Singular experience for patients & family; one of many for us……….. Colin Parkes & after all is said & done…..Singular experience for patients & family; one of many for us……….. Colin Parkes
References Groves & Beresin Difficult patients, difficult families. New Horizons. King & Quill Working with Families in Palliative Care. Journal of Palliative Medicine. Levine Always on Call: When Illness Turns Families into Caregivers. United Hospital Fund. Snelling The role of the family in relation to chronic pain: review of the literature. Journal of Advanced Nursing. Vachon, MLS. The Stress of Professional Caregivers. Oxford Textbook of Palliative Medicine. Oxford University Press