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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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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
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Prognosis: CASCADE Study
CASCADE advanced dementia study enrolled 323 advanced dementia residents (GDS 7)
25% died in 6 months
− 55% died in 18 months
GDS 7 + fever; pneumonia
− 45% died within 6 months
GDS 7 + persistent feeding problems
− 39% died within 6 months
Mitchell SL, JAGS 2005; Brodaty H, JAGS 2011; Mitchell SL, NEJM 2009
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Dementia and co-morbidity
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
2008, Mittlemen 2008 and 2004, Nobili 2004, Beauchamp 2004, Bourgeios, 2002, Done 2001, Eisdorfer
2003, Hepburn 2005, Maggi 2002, Ten 2005, Wright 2001, Pillener 2002, Livingston 2013; Knapp 2013)
Conclusions on existing evidence and what is needed
Few interventions targeted the demented patients! Most addressed caregivers
Caregiver support interventions tended to have the weakest, variable outcomes and were very
heterogeneous – also hard to replicate, resource and time intensive!
Goals of care and communication interventions the strongest outcomes but there were relatively
few and fewer still that addressed palliative care in the nursing home.
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Implications of existing evidence and what is needed
Not many intervention targeted personal caregiver needs (underscores the value of Raj Mehta’s
work on caregiver maps / other research on life space!)
More research is needed for patients, especially care planning – this is a strength of practice, but
a weakness of research
More consistent caregiver research that is better theorized, measures outcomes more
consistently (so they can be compared and interpreted) is needed! No more business as usual!
Emphasis in practice and in research on meeting needs through the community, not healthcare
resources. 24/7 problems need 24/7 solutions!
Evidence from the VA - “It Takes a Market Basket”
Geriatric Primary Care (PACT / PCMH)
Home Based Primary Care
C-TRAC (transition-driven case management)
Medical Foster Home
Hospital-in-Home
Community-based Resources
Palliative Care
Community Hospice Partnerships
All of these have been shown to be cost saving, although not specific to dementia
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Future care and data continuum
Goal is extending our ability to target intervention into the home and community
Key is access to additional information, but what information will patients / caregivers /
providers:
− Find actionable?
− Willingly share?
− Consider meaningful?
− For what benefits?
Off the shelf components mean health systems can ‘build their own’ on backbone of solid
integrated platforms.
Value may reside in meaningful involvement of informal caregivers, family, friends and
community, and will be highly sensitive to payment model evolution
Clinical Interventions in Dementia
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Comfort issues and care planning
Goals of care communication is the most evidenced area of palliative practice, often what families
need most, and concordant with nurse, social work roles
− 60% of Oregon NH POLSTS are completed by social workers
Patients early in the course of dementia have needs for care planning – their chance for self-
determination is time-limited!
− “Who is the most important person (s) who could speak for you
− “What are your hopes, given this diagnosis?”
− “What are your fears about this diagnosis?”
− “What life experiences have you had that shed light on how to approach what might lie ahead?”
Determining a person’s ability to participate in decision making is key (cardinal attributes –
articulate a choice, weigh future alternatives, judgement based durable goals and values)
Goals of care are an evolving picture that need to be re-visited – admissions, new diagnoses,
dementia progression, feeding difficulty, personality and behavioral change (key conversations
at key moments!)
How do I know I was successful?
If I’m afraid to raise the subject?
− “I never think of death and dying before it has already come to the mind of the patient and family 1,000
times”
The family seems so capable that my help might not be needed?
− Don’t assume because a patient and family are otherwise highly capable people they are not afraid!
Break the ice!
How do I know that I was successful?
− Key processes / indicators of success – surrogate identified and informed? Values and goals clarified?
Relevant treatment preferences? (e.g., feeding tube, others?)
Goals of care are an evolving picture that need to be re-visited – admissions, new diagnoses,
dementia progression, feeding difficulty, personality and behavioral change
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Goals of Care Study
Goals of Care: A Nursing Home Trial of Decision
Support for Advanced Dementia (NIA)
Video decision aid + structured discussion with NH staff
Goals of care (survival vs function vs comfort)
Cluster RCT
22 nursing home sites
N=302 dyads of residents 65+ with advanced
dementia (GDS 5-7) and their family decision-makers
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Primary goal comfort
65% at enrollment
79% at 9 months or death
Outcomes
Better quality of communication
Improved concordance on goals
Increased palliative care in treatment plans
Doubled use of MOST / POLST
Reduced hospital transfers by half
https://www.med.unc.edu/pcare/resources/goals-of-care
https://vimeo.com/185866577 Hanson LC, JAMA Internal Medicine 2017
Goals of Care Study
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Dementia: 9 controlled observational studies of NH residents OR patients with dementia
− 8 studies TF same or increased mortality
− 1 study TF decreased mortality
Functional benefit in persistent dysphagia after stroke, ENT cancer
Likely survival benefit in PVS
One’s own saliva represents the biggest threat of aspiration
Nearly 2/3rds of patients being tube fed are also restrained
Denies patients the pleasure of food and families the pleasure of nurture
Hanson ALTC 2012; Callahan, 2000; Carey, 2005; Naik, 2005; FOOD, 2005, AGS position statement JAGS 2014
Tube feeding outcomes
AGS, AMDA and AAHPM: Choosing Wisely
Don’t recommend percutaneous feeding tubes in patients with advanced dementia; instead offer
oral assisted feeding.
In advanced dementia, studies have found feeding tubes do not result in improved survival, prevention of
aspiration pneumonia, or improved healing of pressure ulcers. Feeding tube use in such patients has
actually been associated with pressure ulcer development, use of physical and pharmacological restraints,
and patient distress about the tube itself. Assistance with oral feeding is an evidence-based approach to
provide nutrition for patients with advanced dementia and feeding problems; in the final phase of this
disease, assisted feeding may focus on comfort and human interaction more than nutritional goals.
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Improving feeding decisions
RCT decision aid on feeding options in dementia
Outcomes: Improved knowledge, conflict
Increased frequency of communication
Increased use modified diets
Less weight loss, no difference in mortality
Very few TF
Dr. Hanson’s decision aid – http://decisionaid.ohri.ca/
Angelo Volanades decision aids – https://acpdecisions.org
(requires licensing)
Monteleoni C, BMJ 2004; Hanson LC, JAGS 2011
Other clinical challenges of advanced dementia
Infections
− Most common sources are urinary and pneumonia – inevitably related to feeding difficulty.
− Tests are helpful at ruling out, but not ruling in urinary infections.
− In both cases, judicious treatment in place is a key protocol to implement for patients with comfort goals.
− There is some evidence supporting that treatment prolongs life, but that patients who are treated over
time become more uncomfortable (CASCADE)
Goals of care
− Because of the frequency of hospitalization and emergency department visits due to infections, a crucial
element of care planning involves decisions to provide care in place. (no ICU? No hospitalization? No
ED visits?)
Pain – most pain is observed (e.g., the PAINAD), physical exam is therefore crucial
− One of the most important sources of pain that is preventable involves wound care – bandage removal,
debridement or other tactile management of the wound
− Can be handled with pre-wound prn analgesics, but those orders are very hard to implement
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Man is more than a tiny vagary of swirling electrons or a wisp of
smoke from a limitless smoldering. Man is a child of God, made in
His image...
Summary
Palliative care isn’t only about dying
Severe dementia (GDS 6,7), diagnosed at older age, co-morbid conditions = greater prognostic
risk
Early dementia requires communication about surrogates, prognosis, and preferences (e.g., tube
feeding), and care plans have to be regularly re-visited!
Special clinical concerns in late stage (GDS 6,7) include management of infections, limiting use
of inappropriate hospitalization when comfort is the goal, and management of pain associated
with complications, and hospice referral
Nurses and social workers have a key evidence-based role to play in extant and emerging
effective care models
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The End!
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