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Principles of Palliative Care


C. Michael Henderson MD Assistant Professor University of Rochester Palliative Care: Outline of Talk Introduction Determination of terminal illness Designation of ... – PowerPoint PPT presentation

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Title: Principles of Palliative Care

Principles of Palliative Care
  • C. Michael Henderson MD
  • Assistant Professor
  • University of Rochester

Palliative Care Outline of Talk
  • Introduction
  • Determination of terminal illness
  • Designation of goals
  • Hospice benefit
  • Comfort care
  • Another kind of hope

Palliative Care Context
  • Medical and other interventions at the end of
    life terminal illness to preserve comfort and
  • The person with terminal illness or their proxies
    direct care to maximize choice or preferences

Palliative Care Definition
  • Contrast with Curative Care
  • Symptom control
  • Holistic
  • Interdisciplinary
  • Death is acceptable outcome

Palliative Care Definition
  • Contrast with Euthanasia
  • Symptom control may
  • hasten death
  • Symptom control is the goal- not death

Palliative Care History and Research
  • The horrific example of the Nazi doctors
  • The strange encounter of Harriet McBride Johnson
    with Peter Singer
  • The puzzling finding of subjective quality of
    life in adults who have cerebral palsy
  • The important finding of informed health care
    decision-making capability in people who have
    mental retardation

Palliative Care Problems in People with
Developmental Disabilities
  • Communication barriers
  • Mental retardation and cognitive capabilities
  • Autism and communication styles
  • Cerebral palsy and speech and facial expression
  • Individual experiences with self-advocacy to
    speak for oneself

Palliative Care Problems in People with DD
  • A vulnerable population in medical care delivery
  • Best interest beneficence
  • Quality of life
  • Undue burden
  • Medical futility
  • The importance of listening autonomy
  • Substituted judgment

Palliative Care Agendas
  • Failure to listen the case of John
  • Assumption about quality of life the case of
  • A parents anguish the case of Maria

Palliative Care Question
  • Are people with mental retardation and severe
    cognitive disabilities allowed to die?
  • Does history itself pose a barrier?

Palliative Care Prognosis and Sharing the Bad
  • The bad news an illness that will kill in spite
    of curative medical intervention
  • The person and her relationships
  • The safe haven issue
  • The physician
  • Stages of grief to progress or to not progress?

Palliative Care Sharing the Bad News
  • Cognitive/developmental level of person is
  • Setting- where and who
  • Concept of finality of death about six years
    mental age equivalent
  • Minimize jargon
  • Deliver small amounts of information and wait for
    indication of understanding assess emotional

Palliative Care Terminal Illnesses
  • Examples
  • Some forms of cancer
  • Duchenne muscular dystrophy
  • Progressive heart and lung disease
  • Alzheimer disease (end-stage)

Palliative Care Prognosis of Terminal Illness
  • The six month gold-standard
  • Are doctors any good at prognosis?
  • Stages of terminal disease
  • Clinical evidence
  • Functional capability
  • Nutritional status

Palliative Care Tough Cases in Doing the Right
  • Slow-moving and terminal congenital heart
    disease the case of Joe
  • End-stage renal disease and a woman who hates
    doctors the case of Sue
  • Alzheimer disease and the case of Anne

Palliative Care Goal Setting
  • Palliative care in terminal illness- ultimate
    example in person-centered planning
  • More time or better time
  • When to receive hospice services
  • Goals and dreams
  • Where and how to die
  • All of the above can and will likely change over

Palliative Care Hospice Services
  • Hospice services
  • The Medicare hospice benefit
  • Other health insurance
  • Hospice homes

Palliative Care Medicare Hospice Benefit
  • Physician referral- terminal illness with lt six
    months life expectancy
  • Recipient agrees to comfort care
  • Interdisciplinary team nurse, social worker,
    medical director
  • Regular review
  • In-patient services for palliation
  • Spirituality
  • Bereavement

Palliative Care
  • Dying is not easy
  • Course may be unpredictable
  • Symptoms
  • Pain
  • Dyspnea (shortness of breath)
  • Nausea
  • Pruritis
  • Fatigue
  • Confusion

Palliative Care Pain/Discomfort Assessment
  • Gold standard patient report
  • Straight-forward in persons with good verbal
  • Pediatric technology in those with limited verbal
  • Highly personalized in those with minimal or no
    language skills

Palliative Care Pain Assessment
  • Assessment questions
  • Where (anatomic location)
  • When (precipitants or alleviators)
  • What (quality of pain)
  • How bad (intensity)

Palliative Care Pain Assessment
  • Pitfall- minimizing patient symptom because of
    lack of corroboration with vital signs or other
    physical observation
  • Vital signs can be useful indicators of acute
    pain or severe distress
  • Physical exam
  • General observations of a patient compared to her
  • Agitation
  • Self-injury directed to a body area
  • Facial expression

Palliative Care Pain Assessment
  • Pediatric methodology
  • Location body map
  • Quality descriptors based on persons experience
  • Intensity
  • Faces Scale four faces is probably most accurate
  • Poker Chip Tool (Beyer Wells)
  • Color Analogue (McGrath et al)
  • Word Graphic Scale (McGrath et al)

Palliative Care Managing Pain/Discomfort
  • Non-pharmacologic approaches
  • Activity/rest cycling
  • Distraction
  • Relaxation
  • Spirituality
  • Exercise (moderate)
  • Moist or dry heat cold massage
  • TENS unit
  • Acupuncture

Palliative Care Pain/Discomfort Management
  • Pain types respond to different
  • Somatic nociceptive bones, joints, myofascial
    soft tissues
  • Visceral nociceptive internal organs
  • Neuropathic pain nerve damage

Palliative Care Pain/Discomfort Management
  • Acute Pain
  • Sudden
  • Sharp, localized (may radiate)
  • Vitals signs
  • Obvious emotional response agitation
  • Chronic Pain
  • Persistent
  • Dull, ache, diffuse
  • Vitals signs may be normal
  • Affect may be normal or depressed

Palliative Care Pain Management
  • WHO pain management ladder now controversial
  • Step One mild pain- acetaminophen
  • and/or as-needed weak opioids
  • Step Two moderate pain non-opioids plus weak
    opioids (often in combination)
  • Step Three severe pain strong opioids plus
    adjuvant agents

Palliative Care Pain/Discomfort Management
  • Nociceptive pain opioid narcotic analgesia- the
  • Morphine
  • Several forms for different durations of action
  • Multiple delivery systems oral, rectal,
  • Not tolerated by 15 (dysphoria)

Palliative Care Pain/Discomfort Management
  • Opioids
  • Oxycodone
  • Hydrocodone
  • Codeine
  • Methadone
  • Opioid-like tramadol (seizure)

Palliative Care Pain/Discomfort Management
  • Opioid agents to avoid
  • Meperidine- seizure
  • ?Fentanyl- cardiotoxicity
  • Propoxyphene- seizure
  • Opioid antagonistagonist agents such as
    pentazocine buprenorphine

Palliative Care Pain/Discomfort Management
  • Principles of opioid adminstration
  • Around-clock (steady state) and as-needed (bolus)
  • If use one delivery system (i.e. subcutaneous
    pump) have a back-up means of administration
  • Protocols when switching from one opioid agent to

Palliative Care Pain/Discomfort Management
  • Opioids other issues
  • Sedation constipation common
  • Nausea anorexia may occur
  • Addiction is not relevant to terminal illness-
    physical dependence may be highly relevant
  • Controlled substances
  • Safe medications when proper dosing regimens are

Palliative Care Pain/Discomfort Management
  • Boney mets NAIDS, radiation therapy
  • Neuropathic pain
  • Opioids relatively ineffective
  • Tricyclic antidepressants
  • Anti-convulsants- gabapentin
  • Baclofen
  • Nerve blocks

Palliative Care Pain/Discomfort Management
  • Treatment of other forms of discomfort
  • Fatigue dexamethasone
  • Cachexia- megestrol, cyproheptadine, THC
  • Sedation- methylphenidate

Palliative Care Pain/Discomfort Management
  • Dyspnea
  • Fan
  • Oxygen
  • Opioids (nebulized morphine)
  • Bronchodilators
  • Corticosteriods
  • Benzodiazepines

Palliative Care Pain/Discomfort Management
  • Nausea
  • Phenothiazines
  • Metaclopramide
  • Lorazepan
  • Scopolamine
  • Antihistamines
  • Dolasetron (5-HT3 receptor antagonists)

Palliative Care Pain/Discomfort Management
  • Constipation
  • Diet and fluids
  • Stool softener (ducosate)
  • Polyethylene glycol
  • Laxatives
  • Magnesium citrate
  • Senna and other gut stimulants
  • Psyllium and other bulking agents
  • Lactulose and other hyperosmolar
  • agents

Palliative Care Pain/Discomfort Management
  • Depression
  • Can lower pain threshold
  • Compromise quality of life
  • Diagnose through DSM-IV criteria modified for
    verbal capability of person
  • Treatment conventional agents (SSRIs)

Palliative Care Pain/Discomfort Management
  • Comments on pharmacologic management
  • Polypharmacy OK, but watch drug-drug interactions
  • Awareness of drugs that lower seizure threshold
  • If all fails, unconscious sedation

Palliative Care Pain/Discomfort Management
  • Various issues in end-of-life care
  • CPR
  • Hospitalization may be needed to treat illnesses
    that cause discomfort or that might interfere
    with patient goals
  • Hydration
  • Artificial nutrition

Palliative Care Pain/Distress Management
  • The patient who is not drinking
  • Skin moisturizers
  • Artificial tears
  • Glycerol swabs

Palliative Care Pain/Discomfort Management
  • Planning for the end
  • The location of final hours of life
  • With relatives at home
  • Group home
  • Hospital on comfort care guidelines
  • In-patient hospice unit or hospice home
  • On-call back-up

Palliative Care Pain/Discomfort Management
  • The end of life
  • Changes in sensorium
  • Slowed abnormal breathing patterns
  • Bleeding
  • Color changes in extremities
  • Cessation in respiration indicates death

Palliative Care Pain/Discomfort Management
  • Defining another kind of hope
  • To be as symptom free as possible
  • To accomplish (realistic) life goals and dreams
  • To be calmly and reliably supported by others
  • To self-choreograph ones death based on choices
    and preferences
  • To celebrate, with others, ones never-to-be
    repeated uniqueness