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

Mrs. N …

Admitted to Hospice Noted to be “agitated”

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

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.