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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

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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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Use comic