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Palliative Care for Palliative Care for

Palliative Care for - PowerPoint Presentation

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Palliative Care for - PPT Presentation

Palliative Care for patients with Intellectual amp Developmental disabilities a call for greater awareness amp enhancement of your practice Heather Mikes DO Palliative Care Physician Legacy Health ID: 773692

care amp disabilities life amp care life disabilities social idd intellectual making goals palliative journal hospice decision person developmental

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Palliative Care for patients with Intellectual & Developmental disabilities:a call for greater awareness & enhancement of your practice Heather Mikes, DOPalliative Care Physician Legacy Health

How is this relevant to you?

“If we could get it right for people with learning disabilities, then we would find talking about death so much easier with other people, too.” - Sheila Hollins

Stumbling blocks for the road aheadStrong hx of social injustice & discrimination Controversy & conflict regarding health & end of life decision makingOur PC/ hospice roles can be perceived as threatening.

ObjectivesAppreciate the IDD’s landscape of adversity and its impact on healthcare delivery & quality of life perspectives for this group.Identify 3 key ways to strengthen our relationships with IDD patients, their caregivers, families, & guardians. Learn 3 ways to promote healthcare decision making and goals of care discussions for IDD patients.Identify 3 shared values between hospice & IDD caregivers that will promote high quality end of life care.

Advocacy & rapport buildingDecision making & goals of careHospice & end of life care

Definitions & TerminologyIntellectual and developmental disabilities (IDD), Developmentally Delayed (DD), or Special NeedsOnset occurs before adulthoodRequires range of delays in both:Learning: reduced ability to learn new skills or understand new or complex information Social skills: Reduced ability to cope independently

Social injustice & discriminationDevaluation: Certain individuals/groups are perceived as having less value than most others in society, low social statusCan be unconscious Has real consequencesDenial of basic human rights Failure to ensure rights are protectedPoor access to education, housing, & employment Devalued social roles Inadequate healthcare

Protection of human rights 1973: Rehabilitation Act 1975: Individuals with Disabilities Education Act1990: Americans with Disabilities Act

The IDD comprise 1-3% of AmericansNumber of adults with IDD increases by 1.1% each year

IDD life expectancy continues to increase. IDD are now diagnosed with more “common” age-related chronic illnesses:Cardiovascular DiseaseDementia Cancer

Access to healthcareDD receive a lower degree of health screenings. Limited communication & passivity  unrecognized or overlooked symptoms Diagnostic overshadowing Delayed diagnosis  advanced illness at time of presentation

Quality of life perceptionsHealthcare assumptions & biases: the value or quality of life for the person with a disability is insufferableoutcomes would be worse if they became more disabledtreatment recommendations are based on disability, not the illness

Quality of life perceptionsFor family, guardians, & caregivers this translates into:Sensitivity to the language of futility Hesitancy to discuss treatment limitations Skepticism & distrust of medical providers

Steven’s story45 yo man with Down’s SyndromeNon-verbal, ambulatory at baseline. Mom died of CA 10 yrs ago Close family friends became legal guardians; they also run a group home. Hospitalized for PNA

Hospital course: Intubated for PNA/ respiratory failure. Full code. Palliative Care consulted: vent withdraw, DNR, & hospice recommended.Extubated on day 15Failed swallow eval numerous times.Medical team reluctant to provide PEG placementPEG placed on day 21. Guardian relieved.Diet advanced to pureed, intake remains poor. Steven now weak & bedbound, lost 25 lbsGuardian declines SNF, Steven discharges home

Steven returns to hospital 2 weeks later:Recurrent aspiration PNA, respiratory failureOn NRB. Full code. Profoundly deconditioned, cachectic. NPO ordered. Guardian angry & refuses to follow dietPalliative Care consulted for goals of care

To build better rapport…

Practice dignity in care: re-frame our AttitudeWhat is leading me to draw those conclusions?Are my assumptions accurate?Am I aware how my attitudes toward the person may be affecting him or her?Could my attitude toward the person be based on something to do with my own experiences, anxieties, or fears?

Dignity in Care: preserve Roles & social valueThe goal of IDD advocacy is to ensure they have access to all services & are integrated into social activities.Gain real knowledge of the person’s social roles:Relationships - RecreationEducation - Culture Residence - Civic identity Occupation

Review patients’ Individual Service Plans (ISP)Completed by DD individuals & their team; updated yearlyCaptures desired outcomes, career development, risk management & their chosen services.- Important Components: Person-centered informationRisk identification tool & plan Dignity in Care: preserve roles & social value

Family members & caregivers of IDD individuals appreciate- Their Innate intelligence- Their Individuality- The reciprocating & contributing role within their relationship- The place they hold within their social circle & daily routine Dignity in Care: validate social support

PC consult with StevenRoles & Social Value:During a typical day he enjoys freely roaming around house. Smiles often. Cherished brother. Attends church every Sunday. ISP: Did not attend school or day programs, never employed. Goal to remain at home.Social support: Guardian knew mom well, feels responsibility to keep him healthy & safeGuardian very in tune with Steve’s preferencesShe feels no meal is the same without him there.Care Tenor: Though non-verbal, be sure not to assume he cannot understandValidate the importance of continued nutrition for themBe sure not to jump to recommendations (& limitations) for his respiratory failure

Advocacy & rapport buildingDecision making & goals of careHospice & end of life care

Healthcare decision making &goals of careHealthcare directives are rare Substitutive judgement can be difficult for guardians to obtainIt is often assumed DD patients can’t participateDD individuals don’t necessarily meet formal criteria for decision making capacity Medical providers usually speak to guardians first

Assumptions can be a slippery slope… Complex decision Assume the DD patient can’t participate or cope well Info not shared No opportunity to learn options or ask questions Unprepared to participate, poor coping exhibited - Johnson, 2010

the Veronica project:END OF LIFE preferences & goals of careThe most important factors they stated are:to be involved the need to be occupiedhaving friends/family aroundthe need to be physically comfortable - Tuffrey-Wijne, 2006

coping with illness Participants are used to life-long adversity, hence are “experienced sufferers” with great resiliency.Participants cope best when allowed to hold onto routines & activities, be around trusted carers.They are skilled at living in the moment.- Serious news about the future is not viewed as threatening if they are unable to conceptualize it - Irene Tuffrey-Wijne, 2010

Tailoring Health discussionsHow does the individual receive and express information? Is extra education needed about body organs or functions? Pt may relate to the context of symptoms rather than etiology. Pt may not understand the connection between illness and symptoms,& instead internalize it as something they did wrong.

Books beyond words:Communication tool for discussing illnesswww.booksbeyondwords.co.uk

When patient participation or substitutive judgment is not PossibleLife Story Reflection upon how emotions are expressed in order to determine valuesUnder what circumstances does the individual express joy, anger, distress, etc.? Best Respect Team reflects on what person has communicated about pleasures, pain, dignities, indignities, & dependenciesDecision made based on what would “best respect” that individual’s elicited values – Stein & Kerwin, 2010.

Back to PC consult on sTevenPromoting Patient involvementTalking directly to him firstConducted an Interdisciplinary team meeting in his roomEliciting goals of careWhat does living well mean for him?Explored Best interestEating goals Formulating a medical plan Gentle introductory discussion on code status preferences Continue tube feeds Work closely with SLP

Advocacy & rapport buildingDecision making & goals of careHospice & end of life care

Hospice enrollment barriers:Timing Delay in diagnosisInaccurate prognostication Ethical dilemmas related to under-treatment Knowledge GapsUsThem

IDD service provider survey says….Services:Hospice care not needed, duplicative servicesMany are not sure what hospice offers Enrollment:Believe residents did not meet hospice criteriaWorry hospice will negatively impact other residentsCare setting:People in need of 24-hour care cannot live in group homesWhen residents are diagnosed as terminally ill, they are either in a hospital or nursing facility - Stein 2008

Our shared goals & values: Person centered careAging in placeCloser monitoring of symptoms  earlier interventionLess trips to hospital  less change in environment Providing grief & bereavement support Maintaining dignity

Wrap up for Steven During additional PC follow-up:Code status updated to DNR/DNIComfort-based approach to oral nutrition reachedCG still not ready to stop TFs nor avoid hospitalizationsAgreed on close monitoring with PCP & out-patient PCCSW to assist with obtaining medical equipment

“Following a history of societal abuse, neglect, and prejudice, it is necessary to ensure that people with disabilities participate in planning their care, services, and supports as well as in societal dialogue about care near the end of life.” – Stein & Kerwin, 2010.

In summary…It is important to be aware that IDD’s history of social injustice & devaluation impacts their access to healthcare, trust in medical providers, & perspectives on quality of life. We can build rapport & trust by practicing Dignity in Care: reframing our attitudes, affirming patients’ roles, social value, & their social support. Advocate for IDD patients’ involvement & disclosure. Support their decision making through use of adaptive communication skills & tools. Evoke life story/ best respect when patient participation or substitutive judgement is unavailable. Focus on the shared goals & values of Person Centered care such as aging in place, symptom monitoring, & the maintaining dignity in order to promote hospice services and quality end of life care for IDD patients.

Thank you ! hmikes@lhs.org

References Friedman, S.L, Helm, D.T, & A.C. Woodman. 2012. Unique and universal barriers: hospice care for aging adults with intellectual disability. American Journal on Intellectual and developmental disabilities. 117(6) pp 509-532. Johnson, B.B. 2010. Practical guide to health care decision making. In Friedman, S.L, & Helm, D.T. End of life care for children and adults with intellectual & developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.Kingsbury, L.C. 2010. Use of person-centered planning for end-of-life decision making. In Friedman, S.L, & Helm, D.T. End of life care for children and adults with intellectual & developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities. Kirkendall , A.M. & Waldrop, D. 2013. Staff perspectives on the provision of end-of-life care in a community residence for older adults with developmental disabilities. Journal of Palliative Medicine. 16(9) pp 1121-1124. Kirkendall , A.M., Waldrop, D., & R.P Moone . 2012. Caring for people with intellectual disabilities and life-limiting illness: merging person-centered planning and patient-centered, family-focused care. Journal of social work in end-of-life & palliative care. 8: 135-150. Marlow, S. & Martin, M.2008. A voyage of grief and beauty: supporting a dying family member with an intellectual disability. International Journal of Palliative Nursing. 14(7), pp 342-349.

References Matthews, D., Gibson, L,& C. Regnard. 2010. One size fits all: palliative care for people with learning disabilities. British Journal of Hospital Medicine. 71 (1), pp 40- 43Mildred, L.A. 2015. Thinking ahead matters: supporting and improving healthcare and decision making and end of life planning for people with intellectual and developmental disabilities. Retrieved from: http://coalitionccc.org/wp- content/uploads/2015/10/thinking_ahead_matters_final.pdf Stein, Gary L. 2008. Providing palliative care to people with intellectual disabilities: services, staff knowledge, & challenges. Journal of Palliative Medicine. 11(9). Pp 1241-1248. Stein, G.L & Kerwin,J . 2010. Disability perspectives on healthcare planning and decision-making. Journal of Palliative Medicine. 13(9) pp 1059-1064. Tuffrey-Wijne , I. & Davies, J. 2006. This is my story: I’ve got cancer. British Journal of Learning Disabilities. 35, p 7-11. Tuffrey-Wijne , I. & McEnhill L.2008. Communication difficulties and intellectual disability in end-of-life care. International Journal of Palliative Nursing. 14(4), pp 189-194 Tuffrey-Wijne , I., Bernal, J., Butler, G. et al. 2006. Using nominal group technique to investigate the views of people with intellectual disabilities on end-of-life care provision. Journal of Advanced Nursing. 58(1) pp80-89.

Referenced websites http://www.breakingbadnews.orghttp://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat.aspxhttp://www.pcpld.orghttp://www.pcpld.org/wp-content/uploads/when_i_die_2_0.pdf http://www.pcpld.org/wp-content/uploads/What-If-Celebrating-My-Life-Plan-EOL-2013.pdf http://booksbeyondwords.co.uk/#/story-app/