Palliative Care for the developmentally delayed: obstacles ...

Palliative Care for the developmentally delayed: obstacles ...

PALLIATIVE CARE FOR PATIENTS WITH INTELLECTUAL & DEVELOPMENTAL DISABILITIES: A CALL FOR GREATER AWARENESS & ENHANCEMENT OF YOUR PRACTICE Heather Mikes, DO Palliative 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 AHEAD Strong hx of social injustice & discrimination Controversy & conflict regarding health & end of life decision making Our PC/ hospice roles can be perceived as threatening. OBJECTIVES 1.

Appreciate the IDDs landscape of adversity and its impact on healthcare delivery & quality of life perspectives for this group. 2. Identify 3 key ways to strengthen our relationships with IDD patients, their caregivers, families, & guardians. 3. Learn 3 ways to promote healthcare decision making and goals of care discussions for IDD patients. 4. Identify 3 shared values between hospice & IDD caregivers that will promote high quality end of life care.

Advocacy & rapport building Decision making & goals of care Hospice & end of life care DEFINITIONS & TERMINOLOGY Intellectual and developmental disabilities (IDD), Developmentally Delayed (DD), or Special Needs

Onset occurs before adulthood Requires 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 & DISCRIMINATION Devaluation: Certain individuals/groups are perceived as having less value than most others in society, low social status

Can be unconscious Has real consequences Denial of basic human rights Failure to ensure rights are protected Poor access to education, housing, & employment

Devalued social roles Inadequate healthcare PROTECTION OF HUMAN RIGHTS 1973: Rehabilitation Act 1975: Individuals with Disabilities Education Act 1990: Americans with Disabilities Act

The IDD comprise 1-3% of Americans Number of adults with IDD increases by 1.1% each year IDD life expectancy continues to increase. IDD are now diagnosed with more common agerelated chronic illnesses: Cardiovascular Disease

Dementia Cancer ACCESS TO HEALTHCARE DD 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 PERCEPTIONS Healthcare assumptions & biases: the value or quality of life for the person with a disability is insufferable outcomes would be worse if they became more disabled

treatment recommendations are based on disability, not the illness QUALITY OF LIFE PERCEPTIONS For family, guardians, & caregivers this translates into: Sensitivity to the language of futility Hesitancy to discuss treatment limitations

Skepticism & distrust of medical providers STEVENS STORY 45 yo man with Downs Syndrome Non-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 15 Failed swallow eval numerous times. Medical team reluctant to provide PEG placement

PEG placed on day 21. Guardian relieved. Diet advanced to pureed, intake remains poor. Steven now weak & bedbound, lost 25 lbs Guardian declines SNF, Steven discharges home Steven returns to hospital 2 weeks later: Recurrent aspiration PNA, respiratory failure

On NRB. Full code. Profoundly deconditioned, cachectic. NPO ordered. Guardian angry & refuses to follow diet Palliative Care consulted for goals of care TO BUILD BETTER RAPPORT PRACTICE DIGNITY IN CARE: RE-FRAME OUR ATTITUDE

What 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 VALUE The goal of IDD advocacy is to ensure they have access to all services & are integrated into social activities. Gain real knowledge of the persons social roles: Relationships Education

Residence - Civic identity Occupation - Recreation - Culture DIGNITY IN CARE: PRESERVE ROLES & SOCIAL VALUE Review patients Individual Service Plans (ISP) Completed by DD individuals & their team;

updated yearly Captures desired outcomes, career development, risk management & their chosen services. - Important Components: Person-centered information Risk identification tool & plan DIGNITY IN CARE: VALIDATE SOCIAL SUPPORT

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 PC CONSULT WITH STEVEN Roles & 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 & safe

Guardian very in tune with Steves preferences She feels no meal is the same without him there. Care Tenor: Though non-verbal, be sure not to assume he cannot understand Validate the importance of continued nutrition for them Be sure not to jump to recommendations (& limitations) for his respiratory failure

Advocacy & rapport building Decision making & goals of care Hospice & end of life care HEALTHCARE DECISION MAKING & GOALS OF CARE Healthcare directives are rare

Substitutive judgement can be difficult for guardians to obtain It is often assumed DD patients cant participate DD individuals dont necessarily meet formal criteria for decision making capacity Medical providers usually speak to guardians first ASSUMPTIONS CAN BE A SLIPPERY SLOPE Assume the DD patient cant participate or

cope well Complex decision 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 CARE

The most important factors they stated are: to be involved the need to be occupied having friends/family around the 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 DISCUSSIONS

How 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 ILLNESS www.booksbeyondwords.co.uk WHEN PATIENT PARTICIPATION OR SUBSTITUTIVE JUDGMENT IS NOT POSSIBLE Life Story Reflection upon how emotions are expressed in order to determine values

Under what circumstances does the individual express joy, anger, distress, etc.? Best Respect Team reflects on what person has communicated about pleasures, pain, dignities, indignities, & dependencies Decision made based on what would best respect that individuals elicited values Stein & Kerwin, 2010. BACK TO PC CONSULT ON STEVEN

Promoting Patient involvement Talking directly to him first Conducted an Interdisciplinary team meeting in his room Eliciting goals of care What does living well mean for him? Explored Best interest

Eating goals Formulating a medical plan Gentle introductory discussion on code status preferences Continue tube feeds Work closely with SLP

Advocacy & rapport building Decision making & goals of care Hospice & end of life care HOSPICE ENROLLMENT BARRIERS: Timing Delay in diagnosis

Inaccurate prognostication Ethical dilemmas related to undertreatment Knowledge Gaps Us Them IDD SERVICE PROVIDER SURVEY SAYS.

Services: Hospice care not needed, duplicative services Many are not sure what hospice offers Enrollment: Believe residents did not meet hospice criteria

Worry hospice will negatively impact other residents Care setting: People in need of 24-hour care cannot live in group homes When residents are diagnosed as terminally ill, they are either in a hospital or nursing facility - Stein 2008 OUR SHARED GOALS & VALUES: Person centered care

Aging in place Closer monitoring of symptoms earlier intervention Less 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/DNI Comfort-based approach to oral nutrition reached CG still not ready to stop TFs nor avoid hospitalizations Agreed on close monitoring with PCP & out-patient PC CSW 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 IDDs 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 [email protected]

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- 43 Mildred, 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/wpcontent/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: Ive 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.org http://www.stoswaldsuk.org/how-we-help/we-educate/resources/d isdat.aspx http://www.pcpld.org http://www.pcpld.org/wp-content/uploads/when_i_die_2_0.pdf http://www.pcpld.org/wp-content/uploads/What-If-Celebrating-MyLife-Plan-EOL-2013.pdf

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