Improving End of Life Care

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Improving End of Life Care

• Pamela Horst
• Associate Professor of Family Medicine
• SUNY Upstate Medical University
• February 1, 2009

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Alzheimers 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
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AD Severe Terminal

• Bedridden
• Mute
• Anorexia
• Dysphagia (choking)
• Recurrent infections

• Resistive behaviors
• Incontinent
• Eating difficulties
• Gait disturbances

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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, dont keep me alive if I wont
  recognize or respond to family
• What are her daughters options for care?

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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,
147-52.
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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 choking

• What about tube feeding?

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Artificial feeding in AD

• Does not
• Prevent aspiration
• Increase survival
• Decrease pressure ulcers
• Decrease infections
• Increase function

Finucane, JAMA 19992821365-1370.
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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

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Am I starving my mother?

• A sign of the terminal phase of AD
• No behavioral signs of discomfort

McCann, JAMA 1994 2721267-1270.
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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

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Is it time for Hospice?

• Mrs. Ns daughter chooses not to place a PEG
• Careful hand feeding is instituted.

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Alzheimers/Dementia

• Stage 7 on FAST scale
• Require assistance to ambulate, dress and bathe
• Incontinence
• Unable to speak meaningfully
• Comorbid conditions
• Difficulty swallowing

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Progression of Dementia
indeinII n
I N D E P E N D E N C E
Time
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Mrs. N

• Admitted to Hospice
• Noted to be agitated

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Pain in AD

• Distress may be hidden but it is never silent!
  Dr. Claud Regnard, St. Oswalds Hospice
• 50 of residential dwelling patients

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Pain measures

• Irritable - keeps to self
• Loud/noisy quiet
• Resists care/aggressive
• Facial grimace
• Crying
• Changes usual pattern

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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)

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Comfort for Behavioral Symptoms

• Drugs arent the answer!
• Know life stories
• Utilize distractors
• Hersheys Kisses with toileting
• Stuffed animals
• Music/Videos
• Picture books
• Sensory stimulation

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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

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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

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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)
• Whats your role?

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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 patients goals of care?

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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

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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 patients goals of care?

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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

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The meeting contd

• Pause
• Address reaction
• Determine patients 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

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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?

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Heart Disease

• Optimal Treatment and Not a Surgical
  Candidate/Refuses
• AND
• NYHA Class IV
• (EF

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Mr. H family meeting

• Wife, daughter and pt
• Purpose
• ACP HCP, MOLST form discussion
• Hospice referral

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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

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Implantable Cardiac Defibrillators

• A small number may depolarize during agonal
  rhythms
• Up to 6 shocks can occur.
• Then alarm goes off signaling low battery

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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

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Mr. H contd

• Magnet delivered to home in case and
  appointment made with company technician to turn
  off ICD.
• What would you prescribe for his dyspnea?

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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

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Anxiety, fear Wakefulness
Cortex Pyrexia
Thalamus Acidosis
Central Profound hypoxia chemoreceptors
Hypercapnia Carotid body hypercapnia
Peripheral Aortic arch hypoxia
chemoreceptors Tracheobronchial
irritant Pulmonary stretch
Peripheral C fibers
mechanoreceptors Chest wall
length-tension Diaphragm
inappropriateness
Respiratory muscles
Respiratory Centers
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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. 200257939-944.
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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.

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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.

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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 pts goals
• Cardiac cachexia supplements, ex., appetite
  stimulants (mirtazpine and megestrol)
• Evaluate psychosocial and spiritual issues
• Methylphenidate no data in HF

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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

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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

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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

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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)

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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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Cicely Saunders, MD

• 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.