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Funded by the Picker Institute/Gold Foundation

Discussing goals of care with family members of patients with dementia.

Jennifer Rhodes-Kropf MD Division of Geriatrics, BIDMC/HSL

Faculty Harvard Medical School

Background

What has brought me here today? Teaching module and medical education

research Umbrella project- The Conversation Project

Session Goals:

To understand the natural history and prognostication for advanced dementia.

To be familiar with the data that supports a palliative care approach for patients with advanced dementia.

To learn the components of discussing goals of care with family members of patients with dementia (role play).

The Natural History of Alzheimer's, a Terminal Diagnosis

Functional Assessment Staging Test (FAST)

Stages Clinical Function Gen Terms

1 No difficulties Normal

2 Subjective forgetfulness Mild Dementia

3 Decreased job functioning and organizational capacity

Moderate Dementia

4 Difficulty with Complex tasks instrumental ADLs

Moderate

5 Requires supervision with ADLs Moderate-Severe

6 Impaired ADLs, with incontinence Severe

7 A-F, Next Slide Severe-terminal

FAST Stage 7, severe-terminal

A. Ability to speak limited to six words B. Ability to speak limited to single word C. Loss of ambulation D. Inability to sit E. Inability to smile F. Inability to hold head up

FAST 7 scale for Prognostication

Commonly accepted that FAST 7c (non ambulatory) is c/w a likely less than 6 month prognosis and eligible for hospice

Further hospice criteria, exhibits one or more dementia related co-morbidities; aspir PNA, infections (ex UTI), pressure ulcers, persistent fevers, wt loss >10% in 6 mos.

Data on Clinical Course of Advanced Dementia (AD) All Types

Mitchell, SL, Teno JM, Kiely Dk, et al. The Clinical Course of Advanced Dementia. N Engl J Med 2009; (361): 1529-1538.

2003-2009 data prospectively gathered from 323 nursing home residents with advanced dementia in 22 facilities

Data on Clinical Course of Advanced Dementia

Over 18 mos 55% of residents died and probability of; A febrile episode 53% (death 6 mos 45%) Pneumonia 41% (death 6 mos 47%) Development of eating problems 86% (death 6 mos

39%) Note: the 6 mo mortality rate was calculated after

adjustment for age, sex and disease duration.

Data on Clinical Course of Advanced Dementia

In the last 3 mos of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, ER visit, IV therapy, or tube feeding).

Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in AD were much less likely to have burdensome interventions in the last 3 mos of life than were residents whose proxies did not have this understanding (adjusted OR, 0.12; 95% CI, .04 to .37)

AD and PNA; do you treat or not treat with antibiotics?

Givens JL, Jones RN, Shaffer ML, et al. Survival and comfort after treatment of pneumonia in AD. Arch Intern Med. 2010 Jul 12;170(13):1107-9.

Evaluated the benefit of antimicrobial agents for PNA on 2 tx goals: survival and comfort for residents given an antimicrobial agent of any formulation vs. no agent.

Same CASCADE data base as Mitchell study, from 2003-2009, prospective, 323 NH residents, 22 facilities

Residents followed for 18 mos or until death Comfort level assessed by the Symptom Management at

End-of-Life in Dementia scale among residents who did not die 90 days post suspected PNA

AD and PNA; do you treat or not treat with antibiotics?

Abxs prescribed 91% of time for episodes of suspected PNA

Survival was improved, as much as 9 mos, after suspected PNA in the tx group.

However, after multivariable adjustment in the residents still living 3 mos post tx, residents receiving abx had lower scores on the Symptom Management at EOL in Dementia scale (worse comfort) compared w/ untx’d residents.

There was rigorous adjustment for clinical characteristics that are associated w/ likelihood of tx.

“Mom is not eating.” Poor Appetite

Presuming you’ve ruled out reversible causes for anorexia, what might help your patient increase her oral intake?

“Mom is not eating.” Poor Appetite

Unrestrict diet, consistency Calorie drinks/puddings, frequent small meals Ethnic food Family present at meal times, hire a companion Pleasant surroundings (group eating, good smells),

minimize distractions Megace, trial mirtazepine Morley JE. Clinics in Geriatrics Medicine. 2002

Dysphasia

Assessment Differential Diagnosis What to do when the swallow evaluation states

“keep NPO, high aspiration risk?”

Dysphasia Assessment; history and bedside Differential Diagnosis: thrush (odynophasia) pharyngitis (odynophasia) CVA Parkinson’s Disease Acute illness/prolonged ICU stay Alzheimer's (final stages/near end of life) What to do with the swallow evaluation? “Time limited trial” of NG tube feeds

Tube feed or not to tube feed: prevention of aspiration pneumonia?

Does tube feeding prevent aspiration pneumonia?

Tube feed or not to tube feed: prevention of aspiration pneumonia?

Three retrospective cohort studies comparing patients with and without tube feeding demonstrated no advantage.

Swallowing studies, such as video fluoroscopy, lack both sensitivity and specificity in predicting who will develop aspiration pneumonia.

Finucane et al. 1996. Crogahans 1994

Does tube feeding prolong life?

Finucane and colleagues in 1999, in the first systemic review of the evidence, noted that feeding-tube insertion did not prolong survival.

No demonstrable improvement in QOL No prevention aspiration PNA No improvement in healing of pressure sores

Does tube feeding prolong life?

1,545 nursing home patients with swallowing disorders and cognitive impairment

23% received tubes vs control group of 1,192-closely matched in nutrition, cognition, functional status

1 yr mortality 50% in tube fed, 61% control (risk ratio .71; 95% confidence interval)

Rudberg MA, et al. 2000

Tube feed or not to tube feed: the issue of quality of life

“I do not want my dad to starve to death or to die of dehydration.”

Tube feed or not to tube feed: quality of life?

Most actively dying patients do not experience hunger or thirst.

The “flu analogy.” (uncomfortable to eat if you have no appetite) The issue of dehydration. Morbidity associated with having a feeding tube.

“Comfort Feeding”

Tips for encouraging increase PO intake per prior slide

Swallow consult guidance for family feeding the patient

Lots of time spent feeding the patient

Discussing artificial nutrition with families of patients with AD

Introduction/purpose of meeting Assess family person’s understanding of

patient’s condition Describe the natural progression of dementia

and indicators of advanced stage of disease Present the data* in regards to feeding tubes,

make your recommendations, and discuss any concerns

Summarize what was discussed, what decisions were made, and what further decisions remain to be decided

Discussing goals of care – additional points

Decision points; artificial nutrition, IVF, labs, antibiotics, hospitalizations.

Presence of Advance Directives (health care proxy and living will)

“What did dad want?” Palliative care or hospice care Issue of resuscitation (DNR/DNI) and DNH What conversations have you already experienced in the

setting of AD?

Family Meeting Communication Assessment Tool (FAMCAT)

(Kalamazoo Consensus Statement on the Essential Elements of Communication in Medical Encounters. Adapted by J. Irish and colleagues, BIDMC.)

Builds the Relationship Opens the Discussion Gathers Information Understands the Patient’s Perspective Shares Information Reaches Agreement Provides Closure Manages Flow

Role Play of Physician talking to Daughter of Patient with AD

Role play is optional. Facilitator will pair all trainees off and delegate roles.

Setting: outpatient, patient is medically stable at this moment, you have cared for the patient for 1 year.

Role Play of Physician talking to Daughter of Patient with AD

Mrs. Carl has dementia and lives at home with her daughter. She has 12 hrs a day of private paid help. Mrs. Carl has not been able to walk for about 6 months. She was in the hospital 3 times over the last 6 months; once for PNA, once for a UTI, and most recently for dehydration. Mrs. Carl is gradually eating less and less.

Role of Daughter with Dementia

Please work into the conversation these concerns: “Doctor I am really concerned because my Mom is

not eating or drinking very much.” “Doctor I do not want my Mom to die of starvation

or dehydration.” “I want her to live as long as possible.” “I do not want my Mom to suffer.”

Role Play Debriefing

What part of the conversation went the best? What part of the conversation was most

challenging? What might you as the physician do differently

for future conversations? Did your colleagues give you any feedback that

you thought particularly helpful?

Take Away Points

Over 18mos, 55% of AD residents died- AD is a terminal diagnosis

Abxs for PNA increase survival, but decreased QOL

Management of Poor Appetite Dysphasia assessment and differential Tube feeds may or may not increase survival But, tube feeds do not increase QOL

Take Away Points

Comfort Feeding Discussing Goals of Care/artificial nutrition

with families Responding to “I do not want my Dad to starve to death

or die of dehydration.”

Post Self-Evaluation For your learning!

Please be sure you have the same 4 digit number on your post test. jrhodeskropf@hsl.harvard.edu

Module Challenges

Making space in the already packed curriculum Modifying the module format to adapt to

varying group size Getting residents to attend- non “glamorous”

topic

Module II: Trainee Living Will Assignment