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Assisting Families: Navigating the Shifting Sands of Evolving Illness Terry Altilio LCSW Department of Pain Medicine & Palliative Care Beth Israel Medical.

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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:

1 Assisting Families: Navigating the Shifting Sands of Evolving Illness Terry Altilio LCSW Department of Pain Medicine & Palliative Care Beth Israel Medical Center

2 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

3 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

4 Family  Unit of Care ? –Caregivers  Part of the Team ?  Part of the Solution ?  Part of the Problem ?

5 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

6 Personhood of the Patient  May include family problems that are exacerbated & exposed in setting of illness –Shame –Regret –Protectiveness –Last chance

7 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

8 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

9 Working with families requires an ethic of negotiation & accommodation Levine & Zuckerman 2004

10 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.

11 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

12 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

13 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 ?

14 Adaptation & Loss  Illness itself can create feelings of loss as we adapt to changing realities –Healthy self –Private self –Goals –Illusion of control & certainty

15 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

16 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

17 Language Alerts  Dysfunctional  Entitled, VIP  Abusive  Unrealistic  Crazy  Difficult  In Denial  Demanding  Borderline  Addicts  Non-compliant/ adherent  Overwhelmed

18 Evolving Illness Requires  Continuing communication  Exposure of patients, family & staff  Consciousness about changing needs & ongoing impact  Review & revisions of treatment decisions with special attention to –Symptoms –Changing minds –Distress – patients, family, clinicians

19 Shifting Sands In a Setting of Shifting Sands of Evolving Illness

20 Evolving Illness - What We May Experience A range of responses, physical, emotional & cognitive  Fatigue, sleeplessness  Sadness, anger, denial, disbelief, fear, guilt, turmoil, hopelessness, worry, anxiety, depression  Beliefs, expectations, hopes, poor concentration, worrisome thoughts

21 Changes in the Environment –Actual & Symbolic  Equipment  Home structure  Living arrangements  Etc, etc, etc –Impact on pattern of family’s life

22 Some impacts & demands implicit in the illness experience for “good enough” families

23 Impact of Caregiving  Financial Stability  Physical Wellbeing  Psychological Wellbeing  Relationships - Intimate/Social

24 Family Assessment  Assessment –Coping style –Communication Style –Conflict/Crisis Resolution Skills

25 Family Assessment  Cultural variables  Generational issues  Developmental stage  Family structure  Decision making process  Role changes  Intimacy & sexuality  External supports

26 History: Patient & Family –Illness experience –Loss –Pre-existing stresses –Abuse –Psychiatric disorders –Substance use & abuse

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

28 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

29 Precipitating Stressors  Period of transition (loss of familiar)  Proximity to death & loss  Technology  Media  Strong emotions  On display

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32 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”

33 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

34 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………

35 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  ……………………………..

36 & 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

37 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


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