Transcript Improving End of Life Care

Improving End of Life Care
Pamela Horst
Associate Professor of Family
Medicine
SUNY – Upstate Medical
University
February 1, 2009
Alzheimer’s Disease
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Progressive, fatal illness
Reduces life expectancy at age of diagnosis by
half (ave. life expectancy 8 – 10 years)
7.1% of deaths in the US
Late stage dementia lasts 1 – 3 years
75% of late stage patients in long term care
settings
Annals of IM, vol 140,#7, p501,
Larson, etal. 2006
AD
Severe
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Resistive behaviors
Incontinent
Eating difficulties
Gait disturbances
Terminal
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Bedridden
Mute
Anorexia
Dysphagia (choking)
Recurrent infections
Mrs. N
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85 year old woman with severe AD
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Requires assistance with all ADLs
Pushes food away, spits and chokes occ.
 Cough, agitation and fever develop
 HCP – daughter, “don’t keep me alive if I
won’t recognize or respond to family”
What are her daughter’s options for care?
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Infections in AD
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Inevitable
Pneumonia common
cause of death
Treatment based on
goals of care and
prognosis
To hospitalize or not?
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No better outcome in
hospital vs. NH
6 mo. Mortality 53%
Morrison and Siu, JAMA July
5, 2000, vol. 284, #1:47-52.
Mrs. N …
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Mother aware of daughter and positive
response to visits
Chooses time-limited trial of oral antibiotics
Palliative measures
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Oxygen
Morphine for dyspnea
Better but increasing bouts of choking
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about tube feeding?
Artificial feeding in AD
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Does not …
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Prevent aspiration
Increase survival
Decrease pressure
ulcers
Decrease infections
Increase function
Finucane, JAMA 1999;282:1365-1370.
Artificial feeding …
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Does have risks…
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May have uncomfortable stomach symptoms
Diarrhea (22%)
Tube occlusion
Local infection and leaking(21%)
Restraints (2%)
Is a burden to place
Does remove pleasure of oral eating
Am I starving my mother?
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A sign of the terminal phase of AD
No behavioral signs of discomfort
McCann, JAMA 1994:
272;1267-1270.
Feeding options
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Treat depression
Favorite foods (sweets)
Intensive spoon feeding
Focus on mealtime –
interactive, not interrupted,
contact by feeder
Thickeners for liquids
Mouth care if no longer
eating
Is it time for Hospice?
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Mrs. N’s daughter chooses not to place a
PEG
Careful hand feeding is instituted.
Alzheimer’s/Dementia
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Stage 7 on FAST scale
Require assistance to
ambulate, dress and bathe
Incontinence
Unable to speak
meaningfully
Comorbid conditions
Difficulty swallowing
Progression of Dementia
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Mild
Moderate
Severe
Terminal
Impaired memory
Confusion
Resistiveness
Bedfast
Personality
changes
Agitation
Incontinence
Mute
Insomnia
Eating difficulties
Intercurrent
infections
Aphasia
Apraxia
Motor impairment
Spatial
disorientation
Dysphagia
Time
Mrs. N …
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Admitted to Hospice
Noted to be “agitated”
Pain in AD
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Distress may be hidden
but it is never silent!
Dr. Claud Regnard, St.
Oswalds Hospice
50% of residential
dwelling patients
Pain measures
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Irritable - keeps to self
Loud/noisy – quiet
Resists care/aggressive
Facial grimace
Crying
Changes usual pattern
Than what …
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Assess for physical causes
Nonpharmacologic interventions – music,
cold/heat, massage/touch
PRN nonnarcotic medicines –
acetaminophen
If helps use on a regular basis
Consider stronger analgesics
Treat depression (15-57% of AD pts)
Comfort for Behavioral Symptoms
Drugs aren’t the answer!
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Know life stories
Utilize distractors
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Hershey’s Kisses with toileting
Stuffed animals
Music/Videos
Picture books
Sensory stimulation
Mrs. N …
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Started on acetaminophen 500 mg 3 times
per day
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Stopped eating totally – fever and increased
respirations a week later
Good mouth care, Morphine SL for her
shortness of breath, acetaminophen rectally
for fever
Died with her daughter at her side
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Heart Failure is a growing problem
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~ 5 million patients in US
> 550,000 patients diagnosed each year
8.5 million hospital stays each year
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Most common medicare DRG
Most medicare dollars spent on this diagnosis
than any other
2001 – 53,000 deaths
Mr. H
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79 yo male with end stage
heart failure, DM, and CAD.
2 yrs prior ICD/biv. pacer
placed after “sudden death”
NYHA class 4 on maximal
meds and Stage D
Frequent hospitalizations (4
x last 3 months)
What’s your role?
Critical questions for clinicians
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Does the patient have advanced heart failure?
What therapeutic interventions would improve
quality of life?
What does this patient understand about their
disease?
What are the patient’s goals of care?
Stages of heart failure
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Emphasize prevention
Recognize the progressive nature of LV
dysfunction
Complement, do not replace NYHA classes
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Patients shift back and forth in classes in
response to RX and/or progression of disease
Progress in one direction due to cardiac
remodeling
Critical questions for clinicians
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Does the patient have advanced heart failure?
What therapeutic interventions would improve
quality of life?
What does this patient understand about their
disease?
What are the patient’s goals of care?
The Meeting
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Set the stage
Know your facts/resources
Define the purpose
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Share info
Clarify values/goals/options
Decisions
Assess pt/family understanding
Clarify medical info./prognosis
The meeting cont’d
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Pause
Address reaction
Determine patient’s values/goals
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If pt not there bring them in to the room
Options/decisions to be made
Summarize/Make recommendation
Based on what you have told me …
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Plan/follow-up
Phrases that help with values 
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What concerns you
most about your
illness?
How is treatment going
for you/your family?
As you think about your
illness, what is the best
and the worst that
might happen?
Heart Disease
Optimal Treatment and
Not a Surgical
Candidate/Refuses
AND
NYHA Class IV
(EF < 20%)
Mr. H family meeting
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Wife, daughter and pt
Purpose
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ACP – HCP, MOLST form discussion
Hospice referral
What is palliative in HF?
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Inotropes– yes/no
Epogen/transfusions – maybe
Biventricular pacers - yes
ICDs – no
CPAP – yes
Neurohormonal therapies - yes
Advance care planning - yes
Sx mgt - yes
Support with psychosocial issues –
yes
Spiritual support - yes
Implantable Cardiac Defibrillators
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A small number may
depolarize during
agonal rhythms
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Up to 6 shocks can
occur.
Then alarm goes off
signaling “low battery”
Turning off the ICD
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Permanent d/c
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Office or home
Technician ( leave pacer function intact)
Patient notices nothing
Temporary d/c
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Donut-shaped magnet, placed or taped over the
ICD site
Hospice nurses/family can do
Mr. H cont’d
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Magnet delivered to home “in case” and
appointment made with company technician
to turn off ICD.
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What would you prescribe for his dyspnea?
Dyspnea in HF
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Diuretics – monitor wt.
O2 trial
Lower extremity strengthening
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Reduction of vent. Demand (2002)
Fan
Positioning – rt. lat. decubitus
Opioids – min. data in CHF
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Morphine 5 mg po/sl q 1 h prn SOB
Anxiety, fear
Wakefulness
Cortex
Pyrexia
Thalamus
Respiratory
muscles
Respiratory
Centers
Acidosis
Central
Profound hypoxia
chemoreceptors
Hypercapnia
Carotid body hypercapnia
Peripheral
Aortic arch
hypoxia
chemoreceptors
Tracheobronchial irritant
Pulmonary stretch
C fibers
Chest wall
length-tension
Diaphragm inappropriateness
Peripheral
mechanoreceptors
How Opioids relieve SOB
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Brainstem opioid receptors block dyspnea ~80% of people with lung disease
Peripheral mechanisms as well (pulmonary
edema)
Proven to acutely increase exercise
tolerance in a similar number of patients.
Jennings, etal. Thorax. 2002;57:939-944.
How to prescribe opioids?
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Consider trial in lung/cardiac patients already on
usual drugs and oxygen, but are quickly dyspneic
with minimal activity.
Do proper patient/family education.
If real nervous, do trial in your office.
Use short-acting (to date, long-acting opioids have
not been shown to have the same benefits) Doses
generally range from 2.5-10mg MSO4, most
common is 5 mg.
Benzodiazepines
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Act by blunting ventilatory drive and the
perception of breathlessness.
Treats the anxiety of dyspnea.
Significant side effects may limit use.
Some recommend only if oxygen and opioids
are insufficient, but if anxiety a great
component, consider earlier.
Other sx (HF pts ave. 7-8)
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Fatigue –
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Consider sleep disordered breathing and CPAP/ O2 trial
Exercise
Eliminate or decrease drugs that could contribute
Treat pain
Treat anemia if within pt’s goals
Cardiac cachexia – supplements, ex., appetite stimulants
(mirtazpine and megestrol)
Evaluate psychosocial and spiritual issues
Methylphenidate – no data in HF
More symptoms
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Difficulty sleeping
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Sleep-disordered breathing occurs in >50% of HF
pts who are ambulatory
CPAP – improves EF and walk distance but does
not decrease hospitalizations or prolong life
Oxygen – improves functional capacity in severe
HF but does not improve subjective measure of
sleep
CBT works better than meds
More sxs ….
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Depression/anxiety – 20 to 30% of HF pts
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Associated with increased 1 yr mortality and hospitalization
SSRIs for disorder not for sxs of sadness or loss/grief.
Watch sodium/fluid vol.
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Citalopram 10-20 mg or sertraline 25-50 mg
Methylphenidate if need rapid action; 5 mg am and at noon
CBT
Supportive communication - active listening, empathy
More sxs….
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Pain – probably comorbid conditions and
immobility
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Avoid NSAIDs
Joint injections, local therapies (heat/ice/topicals)
Non-acetylated salicylates (no effect on plt fn,
kidney or fluid balance)
APAP
Psychosocial/Spiritual evaluation
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H – sources of hope, strength, comfort,
meaning, love and connection
O – organized religion
P – personal spirituality/practices
E – effects of spirituality on care and EOL
decisions
Are you at peace? (Annals IM 2006)
Mortality considerations…
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Reconciliation with others
Life review – facilitates recognition of meaning and
purpose
Goal reframing
Guilt and forgiveness exploration
How – hospice referral, meaning based
psychotherapy, dignity conserving interventions,
your presence and non abandonment
Cicely Saunders, MD
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You matter because you are, you matter to
the last moment of your life, and we will do all
we can not only to help you die peacefully,
but to live until you die.