5/16/2017 1 Palliative Care for Dementia Karl Lorenz, MD MSHS Section Chief of Palliative Care – Stanford University and VA Palo Alto Professor Stanford School of Medicine Objectives Impact, prognosis, palliative care & hospice Evidence for models (including social worker, nurse roles) Major comfort issues, care planning Summary and conclusions Appreciation to friends and colleagues Laura Hanson, MD MPH at UNC (and her kind sharing of slides!) Judy Passaglia RN MS, and Jamie Goldberg MSW – examples of excellence in research, education, and clinical care for dementia
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Palliative Care for Dementia 5 Prognosis: hospice guideline Advanced dementia: requires help to walk, dress, bathe, toilet; speech sparse and not meaningful (FAST 7c) AND Impaired
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5/16/2017
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Palliative Care for Dementia
Karl Lorenz, MD MSHS
Section Chief of Palliative Care – Stanford University and VA Palo Alto
Professor Stanford School of Medicine
Objectives
Impact, prognosis, palliative care & hospice
Evidence for models (including social worker, nurse roles)
Major comfort issues, care planning
Summary and conclusions
Appreciation to friends and colleagues Laura Hanson, MD MPH at UNC (and her kind sharing of
slides!) Judy Passaglia RN MS, and Jamie Goldberg MSW – examples of excellence in research,
education, and clinical care for dementia
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Dementia impact
Societal and family impact
− $150 billion – 250 billion; most cost
are non-medical (residential, informal
and formal caregiving)
Personal impact on the affected
− 2X ambulatory mortality post-diagnosis
− Lifespan of 3-12 years – worse among
older individuals (~4 years if diagnosed after 75)
− most deaths occur in nursing home
Hurd NEJM 2013; Weuve Alz Dem 2014 – Health and Retirement Study Estimates
Medicare Major Chronic Condition and Co-morbidites
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Palliative care? not just about dying…
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Prognosis: hospice guideline
Advanced dementia: requires help to walk, dress, bathe,
toilet; speech sparse and not meaningful (FAST 7c)
AND
Impaired nutritional status – loss >10% TBW and / or low albumin, OR
Recurrent infections (UTI, pneumoni, Sepsis, fever), OR
Advanced stage decubitus ulcers (St 3,4)
Medicare’s eligibility rule is not very predictive – so palliative care is a better solution for earlier comfort
Unique clinical challenges
Prognosis – a prolonged course without a defined “terminal” phase of illness
Assessment and relief of suffering – recognizing and assessing pain challenging; concern for medication use; neuropsychiatric symptom distress
Communication – surrogates make decisions; “ordinary care” decisions; anticipating the right “important decisions”
Sachs GA, JGIM 2004; Birch D, J Clin Nurs 2008
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Models and evidence for practice: dementia palliative care
Frailty fosters invisibility
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Proactive use of healthcare data
Failures include blindness and silence
Existing healthcare data offers a population health strategy
− Forces the issue - whose responsibility is it?
− Not palliative care! 350 new palliative physicians a year (7 per state!)!
− Nurses, social workers, staff, and lay health advocates!!!
Rules + health risk: prognosis, communication, quality of life needs
− New dementia diagnoses
− Sentinel events – new major co-morbidities (e.g., cancer), high use (e.g., re-hospitalizations), specific contexts (e.g., severe dementia with hip fracture, pneumonia; supplemental oxygen with COPD)
− Process gaps in care – e.g., no “goals of care” note title, no surrogate, no preferences documented
Ambulatory Risk: VA CAN Score “Sees” future
Push into clinical care –
PCAS module
Linked to specific clinical
intervention (e.g., LST)
Similar example for
hospitalized patients
Given limited resources,
helps prioritize!
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Palliative care is our responsibility
Effective interventions: roles of nurses, social workers?
Systematic review of 124 highest quality studies of palliative care. 98 described which
provider participated in intervention. Dementia addressed in 25 studies (15/25 were
mostly positive).
Teams involved 32 inventions (17 PC)
Studies involving nurses and social
workers including as sole interventionists
were as effective at improving outcomes
as other studies.
Nurses and social workers fulfilled many roles
In pain and symptoms management, care
coordination, goals of care communication
Singer AE, et.al. J Pall Med, 2016
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Effective interventions
Dementia was excluded from a moderate number of studies
25 interventions included dementia:
− Physicians communication about and enrollment in hospice among NH patients (Casarett, 2005)
− Multidisciplinary team in NH to decrease aggressive behavior (Chapman, 2007)
− Kaiser inpatient palliative consultation and outpatient case management (Gade, 2008)
− Video decision aid for feeding tube insertion, concordance in goals with family caregiver (Volandes,
2009, 2011, Hanson 2011, 2017)
− Dignity narrative reflection therapy for caregivers of patients with dementia (Chochinov, 2008)
− NH based palliative care-care plans in the NHS (Kinley, 2014)
− Highly varied caregiver focused support, OT, peer support, family thereapy, counseling, communication
training, Web curriculum, skills training (Belle, 2006; Fortinsky 2009, Grant 2006, Graff 2007, Haley