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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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  • Slide 1
  • Improving End of Life Care Pamela Horst Associate Professor of Family Medicine SUNY Upstate Medical University February 1, 2009
  • Slide 2
  • 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
  • Slide 3
  • AD Severe Terminal Bedridden Mute Anorexia Dysphagia (choking) Recurrent infections Resistive behaviors Incontinent Eating difficulties Gait disturbances
  • Slide 4
  • 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?
  • Slide 5
  • 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.
  • Slide 6
  • 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?
  • Slide 7
  • Artificial feeding in AD Does not Prevent aspiration Increase survival Decrease pressure ulcers Decrease infections Increase function Finucane, JAMA 1999;282:1365-1370.
  • Slide 8
  • 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
  • Slide 9
  • Am I starving my mother? A sign of the terminal phase of AD No behavioral signs of discomfort McCann, JAMA 1994: 272;1267-1270.
  • Slide 10
  • 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
  • Slide 11
  • Is it time for Hospice? Mrs. Ns daughter chooses not to place a PEG Careful hand feeding is instituted.
  • Slide 12
  • Alzheimers/Dementia Stage 7 on FAST scale Require assistance to ambulate, dress and bathe Incontinence Unable to speak meaningfully Comorbid conditions Difficulty swallowing
  • Slide 13
  • 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 indeinIInindeinIIn INDEPENDENCEINDEPENDENCE
  • Slide 14
  • Mrs. N Admitted to Hospice Noted to be agitated
  • Slide 15
  • Pain in AD Distress may be hidden but it is never silent! Dr. Claud Regnard, St. Oswalds Hospice 50% of residential dwelling patients
  • Slide 16
  • Pain measures Irritable - keeps to self Loud/noisy quiet Resists care/aggressive Facial grimace Crying Changes usual pattern
  • Slide 17
  • 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)
  • Slide 18
  • 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
  • Slide 19
  • 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
  • Slide 20
  • 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
  • Slide 21
  • 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?
  • Slide 22
  • 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?
  • Slide 23
  • 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
  • Slide 24
  • Slide 25
  • 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?
  • Slide 26
  • 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
  • Slide 27
  • 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
  • Slide 28
  • 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?
  • Slide 29
  • Heart Disease Optimal Treatment and Not a Surgical Candidate/Refuses AND NYHA Class IV (EF < 20%)
  • Slide 30
  • Mr. H family meeting Wife, daughter and pt Purpose ACP HCP, MOLST form discussion Hospice referral
  • Slide 31
  • 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
  • Slide 32
  • Implantable Cardiac Defibrillators A small number may depolarize during agonal rhythms Up to 6 shocks can occur. Then alarm goes off signaling low battery
  • Slide 33
  • 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
  • Slide 34
  • 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?
  • Slide 35
  • 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
  • Slide 36
  • 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 Centers Respiratory muscles
  • Slide 37
  • 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.
  • Slide 38
  • 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.
  • Slide 39
  • 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.
  • Slide 40
  • 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
  • Slide 41
  • 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
  • Slide 42
  • 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
  • Slide 43
  • 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
  • Slide 44
  • 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)
  • Slide 45
  • 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
  • Slide 46
  • 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.