improving end of life care pamela horst associate professor of family medicine suny – upstate...
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Improving End of Life Care
Pamela HorstAssociate Professor of Family MedicineSUNY – Upstate Medical UniversityFebruary 1, 2009
Alzheimer’s Disease
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 Terminal
Bedridden Mute Anorexia Dysphagia (choking) Recurrent infections
Resistive behaviors Incontinent Eating difficulties Gait disturbances
Mrs. N
85 year old woman with severe AD– 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?
Infections in AD
Inevitable Pneumonia common
cause of death Treatment based on goals
of care and prognosis To hospitalize or not?
– 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 …
Mother aware of daughter and positive response to visits
Chooses time-limited trial of oral antibiotics Palliative measures
– Oxygen– Morphine for dyspnea
Better but increasing bouts of chokingWhat about tube feeding?
Artificial feeding in AD
Does not …– Prevent aspiration– Increase survival– Decrease pressure
ulcers– Decrease infections– Increase function
Finucane, JAMA 1999;282:1365-1370.
Artificial feeding …
Does have risks…– 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?
A sign of the terminal phase of AD No behavioral signs of discomfort
McCann, JAMA 1994: 272;1267-1270.
Feeding options
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?
Mrs. N’s daughter chooses not to place a PEG
Careful hand feeding is instituted.
Alzheimer’s/Dementia
Stage 7 on FAST scale Require assistance to
ambulate, dress and bathe Incontinence Unable to speak
meaningfully Comorbid conditions Difficulty swallowing
Progression of Dementia
Mild
Impaired memory
Personality changes
Spatial disorientation
Moderate
Confusion
Agitation
Insomnia
Aphasia
Apraxia
Severe
Resistiveness
Incontinence
Eating difficulties
Motor impairment
Terminal
Bedfast
Mute
Intercurrent infections
Dysphagia
Time
indeinII
n
INDEPENDENCE
Pain in AD
Distress may be hidden but it is never silent! Dr. Claud Regnard, St. Oswalds Hospice
50% of residential dwelling patients
Pain measures
Irritable - keeps to self Loud/noisy – quiet Resists care/aggressive Facial grimace Crying Changes usual pattern
Than what …
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!
Know life stories Utilize distractors
– Hershey’s Kisses with toileting– Stuffed animals
Music/Videos Picture books Sensory stimulation
Mrs. N …
Started on acetaminophen 500 mg 3 times per day
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
Heart Failure is a growing problem
~ 5 million patients in US > 550,000 patients diagnosed each year 8.5 million hospital stays each year
– Most common medicare DRG– Most medicare dollars spent on this diagnosis
than any other
2001 – 53,000 deaths
Mr. H
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
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
Emphasize prevention Recognize the progressive nature of LV
dysfunction Complement, do not replace NYHA classes
– 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
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
Set the stage Know your facts/resources Define the purpose
– Share info– Clarify values/goals/options– Decisions
Assess pt/family understanding Clarify medical info./prognosis
The meeting cont’d
Pause Address reaction Determine patient’s values/goals
– 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 …– Check-in
Plan/follow-up
Phrases that help with values -
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 DiseaseHeart Disease
Optimal Treatment and Optimal Treatment and Not a Surgical Not a Surgical
Candidate/RefusesCandidate/Refuses
ANDAND
NYHA Class IVNYHA Class IV
(EF < 20%)(EF < 20%)
Mr. H family meeting
Wife, daughter and pt Purpose
– ACP – HCP, MOLST form discussion– Hospice referral
What is palliative in HF?
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
A small number may depolarize during agonal rhythms
– Up to 6 shocks can occur.
– Then alarm goes off signaling “low battery”
Turning off the ICD
Permanent d/c – Office or home – Technician ( leave pacer function intact) – Patient notices nothing
Temporary d/c – Donut-shaped magnet, placed or taped over the
ICD site – Hospice nurses/family can do
Mr. H cont’d
Magnet delivered to home “in case” and appointment made with company technician to turn off ICD.
What would you prescribe for his dyspnea?
Dyspnea in HF
Diuretics – monitor wt. O2 trial Lower extremity strengthening
– Reduction of vent. Demand (2002) Fan Positioning – rt. lat. decubitus Opioids – min. data in CHF
– Morphine 5 mg po/sl q 1 h prn SOB
Anxiety, fearWakefulness Cortex
Pyrexia Thalamus
Acidosis CentralProfound hypoxia chemoreceptors HypercapniaCarotid body hypercapnia PeripheralAortic arch hypoxia chemoreceptors
Tracheobronchial irritantPulmonary stretch PeripheralC fibers mechanoreceptorsChest wall length-tensionDiaphragm inappropriateness
RespiratoryCenters
Respiratory muscles
How Opioids relieve SOB
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?
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
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)
Fatigue –– 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
Difficulty sleeping– 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 ….
Depression/anxiety – 20 to 30% of HF pts– Associated with increased 1 yr mortality and hospitalization – SSRIs for disorder not for sxs of sadness or loss/grief.
Watch sodium/fluid vol. 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….
Pain – probably comorbid conditions and immobility– 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
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…
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
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