Family as the “Other Patient” in Transitions of Care Patricia Bach, PsyD, RN & Dan...

Family as the “Other Patient” in Family as the “Other Patient” in Transitions of CareTransitions of Care

Patricia Bach, PsyD, RN & Dan Bluestein, MD, CMD, AGSFVAMDA Annual Conference

September 19, 2015

Drs. Bach and Bluestein have no financial incentives to report.

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Learning Objectives Learning Objectives

• Identify challenges faced by LTC providers, patients and families during transitions of care.

• Identify relevant tools and resources for families and providers available from various transitions of care organizations.

• Discuss effective provider-family communication strategies to maximize outcomes in transitions of care.

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AMDA. Transitions of Care I the Long-Term Care Continuum Clinical Practice Guideline. 2010. 4

“There was an important job to be done and

Everybody was sure that Somebody would do it.

Anybody could have done it, but Nobody did

it….Everybody blamed Somebody when

Nobody did what Anybody could have done.

– Anonymous

https://amda2015.wufoo.com/forms/clinical-practice-guideline-transitions-of-care/

FamiliesFamilies• THE GOOD

– Appreciative & supportive– Bring in food & gifts

• THE (maybe not-so) BAD– Don’t want them as

neighbors– Can work with them

• THE UGLY– the ones you wake up at 4

AM agitating about

Setting the stage-a horror storySetting the stage-a horror story

Weinberg et al. JAMDA 2006; 7(5):315-8Weinberg et al. JAMDA 2006; 7(5):315-8.

• AM, age 87, admitted to Rehab ctr w PD, ataxia, newly diagnosed in acute hosp.

–PMH-AF, CVA, DM–Meds-Sinemet, Glyburide, Coumadin (INR 1.2)

• Notes: orient x3 to occasional “forgetfulness” • had several non-injurious falls• Fell, 3 cm laceration, in ER for stiches,

–Mental status considered baseline per review of facility notes

–INR 2.1–Bactrim for “UTI” thought to “explain” fall

Horror story, continuedHorror story, continued

•Repeat INR done 2 days later (a Friday) 7.2, faxed to attending’s office at 6:30 PM; with no reply, facility presumed no change in orders.

•By shift change, Saturday 7 AM “a bit off”•By 11 AM, vomiting, unresponsive•To ER, CT-large intracranial bleed, mass effect•Family contacted, comfort care•Lawsuit settled out of court (7 digits)

Lots we could talk about but won’tLots we could talk about but won’t

•Risks/benefits Coumadin•Fall prevention•Handling of INRs•Staff knowledge & notification policies & procedures

•The abnormal urine & UTI as whipping boy• (Lack of) Documentation•F-Tag 501 (CMD MIA)

For our purposes today, lets focus For our purposes today, lets focus onon

•A failed transition of care

•How might the family have been engaged?

• Why were they not engaged?

Institute of Medicine 2008Institute of Medicine 2008

… Exactly when and how providers need to incorporate the family into the health care process is not yet well understood, but such

incorporation is relevant across the full spectrum of institutional, ambulatory, and

residential patient-care settings.”

Institute of Medicine. Retooling for an aging America: building the health care workforce. 11

“In a fragmented system, where providers change with unsettling regularity, family caregivers are often the only people who have experienced the entire trajectory of

their family member’s illness.”… Levine

Levine, et al. (2010). Bridging Troubled Waters: Family Caregivers, Transitions & LTC. Health Affairs. 29(1). 116-124. 12

Literature ReviewLiterature Review

• AMDA guideline– Couple of paragraphs– Very general

• “Transitions of Care” AND “Families in JAMDA– 7 refs– 1 somewhat useful

• Miles RW. The Psychophysics of Transition to Long Term Care. JAMDA 2013: 14(2):85-93

– Analogy between air disasters and bad transitions from acute care to LTC

Bad TransitionsBad Transitions

Contributors• Fatigue• Overwork/time pressure• Missing key information• “Bad weather”-Family

affect• Unfamiliarity

– MD new to family– Distrust

Some Solutions

• Elicit level of understanding, provide information

• Empathy• Coordination

Family Caregiver Experiences in Family Caregiver Experiences in Transitions of CareTransitions of Care

• Families ill prepared, leads to flawed transitions• Families dissatisfied with TC process• Current transition models cite import of family

caregivers but little specific guidance on how to support tem

• Lack of interventions to support families• Qualitative study w intervention design in mind

– Rich detail of understanding– Limited generalizability

• N = 32 family caregivers; focus groups in 4 sites (Bellingham, WA & Denver, CO)• Goal: explore facilitators & challenges faced by family

caregivers after loved one’s hospital dischargeColeman & Roman (2015). Family Caregiver Experiences During Transitions Out of the Hospital. Journal of Healthcare Quality. 37(1) pp. 12-21.

Coleman EA, Roman SP, Hall KA, Min SJ. Enhancing the care transitions intervention protocol to better address the needs of family caregivers. J Healthcare Qual. 2015; 37(1):2-11. 15

Results: Five ThemesResults: Five Themes

• FC roles/contributions to the care of loved one unfold along a spectrum where the readiness, willingness and ability of both parties are often dynamic and unrecognized.– Clinicians rarely assess family’s readiness for caregiver role– Rarely assess family’s perception of readiness for transfer

• FCs have unique & potentially incongruent goals from those of the patient– Inherent conflict & guilt– No one asked family member’s goal

• FCs feel unprepared & sometimes overwhelmed by post D/C med reconciliation & management– Even though this is most concrete & perhaps best document aspect of

TOC– Pharmacist important ally & go-between family & MD re. med changes

Coleman & Roman (2015). Family Caregiver Experiences During Transitions Out of the Hospital. Journal of Healthcare Quality. 37(1) pp. 12-21. 16

Themes, continued

• Family Caregivers Need Encouragement to Assert Their Role and Identity– At times taken for granted or seen as threat

• Family Caregivers Often Assume Responsibility for the Sequencing of Post-hospital Care Plan Tasks and Anticipating Next Steps on Behalf of Their Loved One and the Healthcare Team– Often know more than professionals– Desire as single clinician as “go-to” person

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Conclusions/Implications for Practice

• Family caregivers are often silent and unrecognized partners on the healthcare team.

• Play multiple critical, complex changing roles:• identifying medication errors,• anticipating needs, • sequencing & coordination • Completion of complex tasks

• Need for systematic assessment/reassessment, coaching, & open communication

• Family assessment & support modification to Care Transitions Intervention improved QIs & family satisfaction

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In small groups, discussyour most memorable experiences

with transitions of care (good & bad) …1.) As a Provider

2.) As a Family Member

SMALL

GROUP

ACTIVITY

DiscussionDiscussion

• Best and worst aspects of your experiences?

• How did these experiences vary for you in different roles?

• What could be changed to make the experience better for you as a provider? For you as a family member?

• Examples of materials you use or practice protocols you use that help facilitate TOCs?

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First Person NarrativeFirst Person Narrative

Mom-Mom’s Transitions of Care

The Good, The Bad, The Ugly

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Transitions of Care (TOC):Transitions of Care (TOC):Impact on Family CaregiversImpact on Family Caregivers

Systemic Issues

. .

Psychological IssuesPsychological Issues

• Guilt• Anxiety• Anger• Stress• Fear• Hypervigilance• Hopelessness• Impaired sense of

control

• Loss of Intimacy • Relationship change

w/spouse if pt. • Grief & mourning• Decline in coping skills• Compassion fatigue• “Baggage” remorse• Spiritual challenges• Trust issues w/system

http://www.apa.org/pi/about/publications/caregivers/index.aspx

www.debate.org23

Caregiver DepressionCaregiver Depression• 40 -70% of caregivers show clinically significant

symptoms of depression– 25-50% meet diagnostic criteria for major

depression

• Depression & anxiety DO’s can persist/worsen after pt’s placement in LTC.

• Depressed caregivers predisposed to physical decline, substance abuse or dependence, chronic disease & increased mortality.

https://www.caregiver.org/caregiver-health

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Social & Contextual IssuesSocial & Contextual Issues• Task demands of supporting loved one at home or in LTC • Financial challenges• Isolation… possible declining support• Competing demands of other personal needs• Cultural differences • Family dynamics

– Long distance caregiving– Acrimony re decision-making role– Family secrets revealed

• Providers generally unaware, ascaregiver is not assessed.

25http://www.apa.org/pi/about/publications/caregivers/index.aspx

Caregiver Assessment FocusCaregiver Assessment Focus

• Identify primary caregivers • Improve understanding of caregiver role & abilities

needed to carry out required tasks• Evaluate for unresolved problems & potential risks• Identify services available for caregivers and provide

appropriate & timely referral for services

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Adelman, R. et al. Caregiver Burden: A clinical review. JAMA. 311(10):1052-1060

“Caregiver assessment & intervention should be tailored to circumstances & context.”

Guidelines for Caregiver AssessmentGuidelines for Caregiver Assessment• Caregiver’s

– Perception of pt’s health & functional status

– Values and preferences

– Perception of personal health & well-being

– Confidence in personal abilities

– Perceived challenges and benefits of care giving

– Need for additional support

• Data used to develop individualized care plan & identify resources

Family Caregiver Alliance. (2006).Caregiver assessment: principles, guidelines and strategies for change.

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Family/Caregiver Critical inFamily/Caregiver Critical inTransitions of Care Transitions of Care

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Transitions of Care Are Transitions of Care Are Difficult for All InvolvedDifficult for All Involved

• Patients• Families• Caregivers• Providers

Transition of Care challenges = ubiquitous & pervasiveFriends dealing with TOC issues & bad experiences

Can bring out the worst in everyone!

Dealing with PeopleYou Can’t Stand…

How to Bring Out the Best in People

At Their Worst

Brinkman & Kirschner (2002)

““10 Most Unwanted List”10 Most Unwanted List”

Brinkman & Kirschner (2002)31Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand.

The TankThe Tank

Confrontational, pointed & angry ....... The ULTIMATE in aggressive behavior

Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand.

The SniperThe SniperWhether through rude comments,

biting sarcasm, or a well-timed eye roll, …

making you look FOOLISH is the Sniper’s specialty!

Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand. McGraw Hill: New York.

The Know-It-AllThe Know-It-All

…seldom in doubt, low tolerance for correction

and contradiction…

…if something goes wrong, will speak authoritatively to

blame others.

The Grenade

…after a brief period of calm, the Grenade explodes into unfocused ranting and raving about things that have nothing to do with the present circumstances

The “Think” They-Know-It-All…these people can’t fool all of the people all of the time, but

can fool some of the people some of the time….

… all for the sake of getting attention.

The Yes Person

…people pleasers…say “yes’ without thinking things through…forget prior commitments, over commit until no

time for self, then become resentful.

The Maybe Person

…procrastinates in hope that a better choice will present itself. Usually procrastinates until decision makes itself.

The Nothing Person

…no verbal or nonverbal feedback...completely uninvested

The “No” Person

…able to defeat big ideas with a single syllable. Disguised as a mild mannered normal person, the “No” person fights a never ending

battle for futility, hopelessness, and despair.

The Whiner

…feels helpless and overwhelmed by an unfair world. Their standard is perfection, and nothing measures up. Offering solutions makes you

bad company, so the whining escalates.

““Lens of Understanding”Lens of Understanding”

Examines MotivesExplains Behaviors

Facilitates CommunicationMinimizes Conflict

Brinkman & Kirschner (2002). Dealing w/People You Can’t Stand. How to Bring out Best in People at their Worst. McGraw Hill: NY.

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Behavioral Continuum

Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002. 43

Factors influencing behavior: assertiveness & focus

Four Situational Intents

Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002. 44

Get task doneGet task right

Get appreciationfrom people

Get along w/people

Behavior Follows Intent

Behavioral Response to Intent Threat

Brinkman &Kirchner. Dealing with People You Can’t Stand. McGraw Hill 2002. 45

Intent:Get it done

Intent:Get it right

Intent: Get appreciated

Intent: Get along

CONTROLLING

ATTENTION GETTING

APPROVAL SEEKING

PERFECTIONISTIC

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Brinkman &Kirschner

2002

Choices for Dealing with Choices for Dealing with Difficult People in TOCDifficult People in TOC

• Stay and do nothing– Frustration increases, morale is lowered & nothing gets done

• Can walk away– Must recognize some situations cannot be resolved

• Change your attitude/perception re difficult person– Re-evaluate your assessment through modified “lens” of

understanding … behavior may mask emotion/coping challenges re TOC-related issues of family member

• Change your behavior– Use more effective strategies to facilitate efforts of all involved

Standard Communication StrategiesStandard Communication Strategies• Make time … Active Listening … Be congruent in word & action• Attempt to find common ground to increase rapport• Clarify meaning, criteria & positive intent • Summarize & confirm understanding• Give benefit of the doubt• Use “I” framework … “the way I see it ..”• “I appreciate your time and willingness to share your concerns”• Recognize complexity of situation & challenges faced by family• Provide resources that may assist with TOC plans/situation• Consider family meeting & team intervention

Brinkman &Kirschner

2002

Application to Transitions of Care

TANK

GOAL: Command respect

-Self-control & hold your ground-Interrupt the attack-Quickly backtrack to main point- Detail bottom line plan to address concerns

Brinkman &Kirschner

2002

Application to Transitions of Care

KNOW-IT-ALL

GOAL: Encourage accepting new ideas/info

-Be prepared & know your stuff-Backtrack respectfully-Acknowledge their doubts & suggestions-Present solutions as non- dictatorial but more collaborative

Brinkman &Kirschner

2002

Application to Transitions of Care

WHINER

GOAL: Form problem- solving alliance with the Whiner

-Listen for main points -Interrupt & get specific-Shift focus to solutions

TOC ResourcesTOC Resources

For For Providers & Families Providers & Families

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Identifying, acknowledging, training & supporting family caregivers, especially during

transitions in care

http://www.nextstepincare.org/About_Next_Step_in_Care/

http://www.nextstepincare.org/uploads/File/Guides/Care_Coordination/Care_Coordination.pdf 58

http://www.nextstepincare.org/

HOME PAGE

http://www.nextstepincare.org/Caregiver_Home/ 59

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https://www.caregiver.org/ 63

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In SummaryIn Summary

Family/family caregivers are the unsung heroes in transitions of care!

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Thanks for your participation!

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