Caring for Persons with Dementia in the State of Washington - PowerPoint Presentation

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Caring for Persons with Dementia in the State of Washington

Mimi Pattison, MD, FAAHPM

Regional Medical Director

Franciscan Hospice and Palliative Care

mimipattison@chifranciscan.org

Washington State Hospice & Palliative Care Organization (WSHPCO)

Fall Conference 2016Slide2

Learning Objectives

Learners will:

List 3 reasons

for a comprehensive approach to dementia care over the entire course of the

disease

List 2 ways your organization can improve dementia care in your community with improved access to Palliative Care

Discuss proposed approach for considering palliative sedation in patients with advanced dementia and refractory psychosis Slide3

Dementia:A Recognized Public Health Priority

36 million people in world with diagnosis

Will double in next 15 years

Will triple by 2050 (WHO 2012)Slide4

Washington StateDementia is 3

rd

leading cause of death

150,000 persons living with dementia in our state

That number will triple by 2050

Most expensive disease in America

3x as much as any other diseaseSlide5

Study Supported by National Institute on Aging

Total cost significantly higher in last 5 years of life- Dementia: $287,038 vs Cancer:$175,136

Medicare spending about the same but average out of pocket expenses 81% higher for dementia

Proportion even greater for African American, those with less than high school education, widows or unmarried

Kelly et al. “The Burden of Health Care Costs for Patients with Dementia in the Last 5 years of Life.”

Annals of Internal Medicine

.

Vol

163 No 10 17 Nov. 2015Slide6

Case of Joanie78 yo female died from complications of dementia

Successful business woman, married, 3 adult children and 6 grandchildren

Mother died of Alzheimers at age 92—lived in fear of getting dementia—was generally healthy

Diagnosed 4 years before death—always denied it

Course punctuated with delusions, paranoia, unreasonable spending to point of financial stress. Delusions and paranoia focused on husband and other family—caused estrangement

Had psychotic episode-admitted to Western State then placed in locked facility under court order

Died 11 months later—had refractory psychotic symptoms and required palliative sedation—died on Hospice

Family is suffering to this day Slide7

Different types and causes of dementia

Degenerative

Alzheimer’s disease

Lewy

Body

dementia

Fronto

-temporal dementia

Parkinson Related dementia (PD, CBD, PSP, MSA)

Stroke

Vascular dementia – 15 to 20%

Substance related

Alcohol dementia

Infectious

Syphilis, HIV, Creutzfeldt-Jacob disease (1-1.5 per million)

Genetic

Huntington’s disease (1:10,000) Slide8

Pathology Is Not Destiny

Study at Rush University

only 50% correlation between pathology at autopsy and cellular changes

Kuehn, B. “The Brain Fights Back: New Approaches to Mitigating Cognitive Decline.”

JAMA

15

Dec. 2015 Volume 314, Number 23

. Slide9

A Social SolutionSocial Support increases levels of brain-derived neurotropic factor (BDNF) and reduces risk

Exercise increases vascular endothelial growth factor (VEGF)

Healthy heart living, diet and exerciseSlide10
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Literature Reveals…

Little, if any, palliative medicine involvement through entire course of dementia until the end

General medical community leaves families uneducated, uninformed and ill prepared-

there is often a delay in diagnosis

Medical staff view comfort concerns of end stage dementia with less urgency than end stages of other illness such as cancer or COPD

Behavioral challenges not amenable to treatment not viewed as the same level of distress as pain or other more physical agonies Slide12

Providing Quality Palliative Care in End-stage Alzheimer Disease

Little research that looks at palliative or hospice care for end-stage AD

Palliative care quality and access are inconsistent

Often dealing with little knowledge of patient preferences

Caregivers often have sense of guilt for decisions they have to make and then experience sense of relief after the death

Pain results from the complication related to disease progression

Pain assessment difficult—PAINAD – is specific

tool

Yearman

et al. “Providing Quality Palliative Care in End-Stage Alzheimer Disease.”

American Journal of Hospice and Palliatve Medicine

,30(5)499-502Slide13

Providing Quality Care ..cont’d

Opioids underused and should be used for moderate to severe pain

Tube feeding often an issue—never been shown to prevent aspiration, infections, improve nutrition , or QOL

Use of antibiotics—often given yet literature suggests that there is not substantial evidence that their use prolongs life or improve QOL more than other palliative interventions

Recommend use of EOL in dementia (EOLD) validated scales SM-EOLD, SWC-EOLD and CAD-EOLD

Advance care planning must be done

Yearman

et al. “Providing Quality Palliative Care in End-Stage Alzheimer Disease.”

American Journal of Hospice and

Palliatve

Medicine

,30(5)499-502Slide14

The Experience of Providing End-of-life Care to a Relative with Advanced Dementia

-An Integrative Literature Review

Experience of grief

Guilt and burden with decision making

How symptoms of depression may or may not be resolved with death of the care receiver

How caregivers respond to the end-stage of dementia

Expressed needs of family caregivers

Shelley C. Peacock (2013). The experience of providing end-of-life care to a relative with advanced dementia:

An

integrative literature

review. Palliative

and Supportive Care, 11, pp 155-168. doi:10.1017/S1478951512000831

. Slide15

Survival of people with dementia after unplanned acute hospital admission

18% die during index admission compared to 8% without dementia

Life expectancy is half of those without dementia

Morrison study-53% mortality with admission for pneumonia compared to 13% in those cognitively intact

Medical staff consistently over estimate prognosis –1.1% perceived to have life expectancy of 6 months or less and 71% died

Sampson, et al.

International Journal Geriatric Psychiatry

2013:28:1015-1022Slide16

Pain and hospice care in nursing home residents with dementia and terminal cancer

Prevalence of pain in nursing home estimated to be 45-83% ; Cancer is common cause

Cognitively impaired patients receive little or no pain medications in nursing homes

NH residents with cancer receive fewer hospice services than other adults with cancer (19% vs 65%)

Monroe et al. “Pain and hospice care in nursing home residents with dementia and terminal cancer.”

Geriatrics Gerontology International

2013: 13: 1018-1025Slide17

Outcomes

Residents in hospice more likely to receive an opioid (80% vs 43%) but

less likely to show severe cognitive

impairment

(20% vs 50

%)

Enrollment in hospice associated with an increased likelihood of receiving an opioid after controlling for level of cognitive impairment

40% of NH resident with dementia who died from cancer did not receive any opioid during the time of observation

Monroe et al. “Pain and hospice care in nursing home residents with

dementia

and terminal cancer.”

Geriatrics Gerontology International

2013: 13: 1018-1025 Slide18

Dying with Dementia: The Last Week of Life

Pain is most common symptom (52%)

Followed by agitation (35%) and shortness of breath (35%)

Pain and SOB treated with opioids-agitation with anxiolytics

Pain and agitation associated with lower QOL

Death from respiratory infection most burdensome

Conclusion: Ongoing symptoms despite use of opioids—doses likely suboptimal

Hendriks

et al. “Dying With Dementia: Symptoms, Treatment, and Quality of Life in the Last Week

of

Life.”

Journal

of Pain and Symptom

Management

2013. Slide19

Dementia in the Emergency Department

51 of 304 patients met criteria for dementia

18 (34%) received consult during hospitalization of which only 4 were ED initiated

Conclusion: Pre-existing physician beliefs and attitudes prevented PC consultation on AD patients.

Ouchi

et al, “Initiating Palliative Care Consults for Advanced Dementia Patients in the Emergency Department.”

Journa

l

of Palliative Medicine,

Volume 17, Number 3, 2014Slide20

Intensive Care Utilization

474,829 residents

ICU utilization for 6.1% to 9.5%

Varied from 0.82% in Montana to 22% in District of Columbia

Fulton et al. “Intensive Care Utilization among Nursing Home Residents with

Advanced Cognitive and Severe Functional Impairment.”

Journal of Palliative Medicine

, Volume 17, Number 3, 2014. Slide21

Facts

Dementia

is

a terminal disease

Persons suffer from a wide range of symptoms

Opioids helpful for pain and respiratory distress

Essentially no research for standard of care

Utilization of hospice generally low

Tube feedings often cause sufferingSlide22

Today’s ChallengesPrognostication

Trained workforce-geriatricians, palliative care and

gero

-psychiatrists

Costs of Care to families-economically and psychologicallySlide23

Substitute Senate Bill 6124Signed by Governor Inslee March 2014

Preparing Washington for the impacts of Alzheimer’s Disease and other dementias

Friday, February 12, 2016: Presented to Legislature and Governor InsleeSlide24

AD PLAN

7

G

oals

: Addressing issues from prevention, research, healthy brain living and through end of life care

http://theadplan.com/alzheimersdietblog

/

Each goal has strategies and recommendations

Slide25

Earlier involvement of palliative care and advanced care planningImproved access to Hospice

Public education in partnership with Alzheimer’s Association

Need to act now to improve care-particularly In last hours and days of living

;

we can’t

wait for evidenced based

recommendations

McLaughlin et al.

Dementia in palliative care: a new era for the hospice.

International Journal of Palliative Nursing

, 21(8), pp. 369–370

New EraSlide26

Hospice

Bereavement

AGGRESSIVE MEDICAL CARE

Cholinesterase inhibitors

Memantine

Treating comorbidities

Palliative Care

Dignity

Comfort

Maintenance of function

Meaningful activities

Caregiver supportSlide27

Our Challenge TodayThe State of Washington has a comprehensive and educational plan in place

The plan represents a

CHALLENGE

to each and every one of you to

do your partSlide28

Otis

76 year old man with diagnosis of

Alzheimer’s disease

Admitted to hospital 7/2015 from SNF

with syncope episode, acute……

Medical comorbidities

: AKI,

Hep

C, recent ESBL E. Coli UTI, HTN, HLD, DM, rheumatoid arthritis, h/o pelvic fractures after fall (jump?) from window

Additional psychiatric diagnosis

: depression

with syncope episode, acute encephalopathy, suspected endocarditis

Meds at time of admission

: metformin,

metoprolol

, HCTZ, statinSlide29

Hospital Course

Presumed endocarditis and ESBL UTI – treated

Despite treatment continued to be increasingly agitated, pulling out PICC line/catheters, impulsive, getting out of bed (at least 2 falls), occasionally combative with staff (multiple code greys due to biting, spitting, kicking, other disruptive behavior)

>60% of the time refusing meds, cares and other interventions

Trial of anti-psychotics

Placement unsuccessful

Consulted with Palliative Medicine & followed by Psychiatry Slide30

Palliative Medicine follow-up 3/2016

Pt grows increasingly weak, confused, somnolent, nonverbal, continues to refuse meds, behaviors no longer as frequent or severe

Held another GOC discussion with son, who stated his father’s wishes would be for comfort and dignity

Agreed with plans to allow natural dying without escalation of care

Agreed with IV palliative sedation if needed for patient/staff safety and comfort

D/C

L

ovenox

(for DVT prophylaxis), SCD’s, vital signs, and all other distress causing interventions

Transferred to FHH on 3/21 after >8 months inpatient

hospitalSlide31

Gero-psychiatry Consultation: 3/2016

Recommendation: Medication adjustments include IM Risperdal

Further improvement in symptoms; now not entirely dependent on patient willingness to take oral medsSlide32

Hospice House Course

Admission: patient calm, largely nonverbal, answers yes/no, bedbound, fully ADL dependent, likely FAST 7A

Medications: continued regimen started in hospital (Risperdal

Consta

,

R

isperdone

PO, Carbamazepine,

Trazodone

for sleep)

Placed in room near nursing station, fall precautions, maintained quiet/calm environment, day/night cues

Started scheduled oxycodone 5mg-Q8 hours for presumed pain due to known history of RA and pelvic fractures

D/C most other medicationsSlide33

Hospice House Course- continuedRapidly declined over next week with decreasing responsiveness, loss of ability to swallow (and continued frequent refusal of meds)

Increasing nonverbal signs of pain (grimacing, agitation with cares)

Cooling extremities,

prolonged apnea

D/C oral meds, started scheduled and PRN fentanyl & Haldol, continued Risperdal concerta

Died peacefully 3/28/2016Slide34

Douglas Wornell, M.D.Geriatric Psychiatry

Tacoma, WashingtonSlide35

Proposal for Consideration of Palliative Sedation of End Stage Dementia Patients

Must have formal diagnosis of dementia for one year

Must have one month of behaviors posing a risk to self or others refractory to at least 6 psychotropic medications

Must have documented 2 weeks of daily access to attending care provider (either medical or psychiatric or palliative care) with biweekly consultation from each of other two specialties Slide36

Continued

Must have 3 consecutive MMSE, SLUMS or MOCA scores below 10 over 2 week period

Pain must be eliminated as a cause of behaviors

Delirium may be included as a cause or partial cause of the behaviors however sufficient diagnostic work up to determine the cause and reasonable treatment must be attempted

Family must be counselled by all three specialists and in agreement with the above procedure and made aware of the risks and benefits

Sedation

is always a secondary effect, management of behaviors to relieve suffering is primarySlide37

Goal of CareRelief of suffering through control of behaviors

Sedation is always a secondary effectSlide38
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Questions