End of Life Pain: Working with Patients and Families in Transition

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End of Life PainWorking with Patients and
Families in Transition

• Jean Gordon RN, BSN, CHPN
• Director of Education, QA/PI
• Hospice of East Texas

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Objectives

• Describe communication goals and barriers related
  to effective pain management at end of life.

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Pain

• International Association for the Study of Pain
  (IASP)
• "an unpleasant sensory and emotional experience
  associated with actual or potential
  tissue damage
• -Margo McCaffery RN, MS, FAAN
• whatever the experiencing person says it is,
  existing whenever he/she says it does

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Making the Transition from Curative to Palliative
Care

• What patients/families want
• Information about why a certain treatment is
  being discontinued
• Assurance of not being alone
• Permission to have and express emotions
• Treatment of pain and other uncomfortable
  symptoms

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Etiology of End-of-Life Pain

• Mixed syndromes
• Cancer (direct tumor involvement, bone
  metastasis, nerve involvement)
• Treatment/therapy (surgery, chemo, radiation,
  medications)
• Incident pain (arthritis, headaches, low back
  pain, osteoporosis, fibromyalgia, etc.)
• Co-morbidities (shingles, neuralgias,
  neuropathies, abscesses, wounds, infection,
  pneumonias, etc.)
• Complications (Scarring, stomatitis, stiffness,
  wounds, fractures, obstructions, pressure, etc.)

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Differentiation

• Acute pain
• sudden onset lasts less than 3 months will have
  a resolution (or becomes chronic pain) patients
  usually have pain believed

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Chronic pain

• Continuous or intermittent episodes of acute
  breakthrough pain often worsens usually affects
  all aspects of life resolution is often death
  (with end of life pain)

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Chronic Pain

• Pain that lasts 3 months or longer
• Pain has effects on patient status
• Behavioral (decreased activity)
• Physical (limited mobility)
• Mental (depression)
• Social (decreased participation)
• Functional (appetite)

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Meaning of Pain

• The reason for pain can influence the experience
  for patient and family -
• Happy event like childbirth?
• Injury that will heal, like a broken leg?
• Age or disease associated injuries? (arthritis,
  diabetic neuropathy, bursitis)
• Progressive or terminal events? (cardiomyopathy,
  cancer, stroke)

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Communication with Patient/Family

• How much do you know?
• How much do you want to know?
• How much do you want to be involved?
• What are your expectations?

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Elements of a Pain Assessment

• Location
• Description
• Onset and pattern
• Aggravating and relieving factors
• Previous treatment(s) drug, non-drug
• Current treatment(s) drug, non-drug
• Amount of breakthrough pain medication needed
  each day

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Elements of a Pain Assessment

• Response to treatment
• Effectiveness side effects
• Impact of pain function quality of life
• Pain intensity (scale)
• Patient family goal numeric and/or functional
• Physical examination
• Document the initial and all ongoing assessments.

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Impact of pain function quality of life

• When you have pain, what does it keep you from
  doing?
• Shopping
• Cooking
• Gardening
• Walking
• Sleeping
• Eating
• Dressing

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Numeric Pain Scale
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Pain Words

• Pain may not be the word of choice
  for various age groups and cultures
• Find the word that the patient/family use
• Spasm, stiffness, sore, burning,
  ache, knife, tingles, upset,
  dull, grabbing, pinching, wearing,
  tired

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Facial Pain Scales
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Non-responsive patient 0-2 resting quietly 3-4
restlessness 5-6 grimacing on movement 7-8
moaning on movement 9-10 thrashing and moaning If
using for a sleeping patient, document. Intended
for non-communicative patient.
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Assessment

• Physical examination
• Patients with chronic pain will not
  always have changes in vital signs or
  facial expression
• and yet their pain is real.

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Chronic End-of-Life Pain

• Principles of Management
• Believe the patient
• Clarify goals (patient family)
• Keep expectations reasonable
• Empower patient family regarding treatment
  choices
• Promote optimal quality of life

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Individualize Treatment

• v allergies
• History of drug use
• Rx and recreational
• Personal and household
• Ability of caregivers
• Stability of pain
• Physical status

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Morphine Drug of Choice(for many)

• Immediate Release (1 hour)
• Short Acting (3-4 hours)
• Sustained Release (12 or 24 hours)
• Pills, Liquid, Syrup, Injectable,
  Suppository, Time-Release Granules
• PO, S/L, SQ, IM, IV, Intrathecal, Rectal,
  vaginal, Stoma, Nebulizer

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WHO 3-Step Ladder WORLD HEALTH ORGANIZATION
Step 2, Moderate Pain
Step 3, Severe Pain
Acet or ASA Codeine Hydrocodone Oxycodone
Adjuvants
Morphine Hydromorphone Methadone Fentanyl Oxycodon
e Nonopioid analgesics Adjuvants
Step 1, Mild Pain
Aspirin (ASA) Acetaminophen (Acet) Nonsteroidal
anti-inflammatory drugs (NSAIDs) Adjuvants
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Side Effects of all Narcotics

• Nausea and Vomiting
• Respiratory Depression
• Sedation
• Constipation
• Urticaria, dizziness
• Tolerance develops rapidly to which
  effects?????

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Principles Prevent and
Treat Side Effects

• Anticipate
• Prevent
• Treat Aggressively
• Monitor

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Transition

• Goals change from cure to prolonging life to
  comfort
• Communication and education is a process not a
  one-time event
• Language such as, theres nothing more we can
  do suggests giving up or abandonment
• There is always something that can be offered
  or done

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Communication with Patient/Family

• Assessment-based
• Mr. Smiths pain is due to the scarring in his
  lungs and his enlarged heart.
• Clear
• It seems that when he is anxious or increases
  his activities, he has trouble breathing and his
  pain gets worse.
• Patient/Family Goals
• What would you be comfortable with as we work
  together to manage his (your) pain?
• If he (you) were able to get out of bed after
  taking pain medication, would that be your goal?

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Transition

• Setting realistic expectations for pain
  management
• Be mindful of where the patient is in the disease
  trajectory as treatment may be determined by
  prognosis.

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• I wish you would put the pain patch on Dad,
  instead of using an IV morphine infusion. It will
  be very hard for him to walk, pushing the IV pole
  around.
• How would you respond????

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Barriers to Effective Pain Management

• Beliefs that
• pain is inevitable or expected
• the nurse/doctor will know what I need
• addiction will occur
• Fear of reporting increased pain
• Patient (signifies decline?? Side effects)
• Family (want things as they were? Fear of
  sedation?)

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Barriers to Effective Pain Management

• Fear that if you use the really strong medicine
  now, it wont be effective when the patient
  really needs it.
• Myth Morphine should only be used when dying
  Morphine can kill you
• Lack of knowledge on equianalgesic dosing
  conversions to different routes or drugs
  duration of action side effects

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Addiction is

• A psychological dependence on a controlled
  substance medication, which is rare.
• Tolerance is the need to increase the dose of the
  medication to achieve the desired effect
• Physical dependence will occur if on the
  medication for several weeks may be withdrawal
  symptoms if the drug is stopped abruptly.
• Steroids and caffeine
  are also in this category

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Addiction

• Causes dysfunction in the persons life
• The person chooses to continue to use the drug
  compulsively despite the dysfunction
• The addiction becomes out of control and causes
  harm (the person using or others)

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Fears About OpiatesAddiction

• Controlled substance medications have a high
  potential for misuse and are therefore closely
  controlled by federal, state, and local
  government.
• They are intended to relieve pain and to improve
  functional ability, not simply to feel good.

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Fears About OpiatesRespiratory Depression

• Clinically significant respiratory depression is
  extremely rare when
• patients in severe pain receive opioids
• doses are titrated appropriately
• May occur in opiate naïve patients
• Respiratory rate alone is not indicative of
  depression, tissue perfusion is better indicator
  (lab tests, level of sedation, color of nail
  beds)

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Fears About OpiatesDeath

• Death is caused by a terminal illness
• Death is not caused by administration of an
  opiate which has been ordered appropriately and
  adequately titrated.

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Hospice Care at Home

• Medication management
• Ideally medications that have multiple benefits
  are ordered so fewer are required
• Only essential medications are given
• If patient is unable to swallow, how will
  medications be managed in the home?
• Oral medications may often be administered
• sub-lingually or rectally

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Hospice Care at Home

• Anticipate disease progression and symptom
  management needs
• Emergency drug kit in the home
• 24 hour availability of RN via telephone
• What will you do, or who will you call in the
  middle of the night with a pain crisis?
• Is there a pharmacy near-by with 24 hour
  availability? Can you reach your physician?

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Family Requests for Meaningful Interventions

• I want to see the plan or map of care and know
  what lies ahead.
• I need to know there are support people I can
  call day or night if my loved one is hurting.

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Family Requests for Meaningful Interventions

• I need to be presented with not just the
  treatment options, but also what can happen if we
  follow them and if we dont
• I want help understanding the differences
  between treatments of pain and recreational drug
  use.
• Listen to my concerns, even if they sound
  irrational.

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Family Requests for Meaningful Interventions

• Give me your full attention, empathy, and
  understanding and let me know youre going to do
  your very best.
• Empower me by acknowledging that I am the most
  reliable source of my loved ones pain because I
  know him/her the best.
• I need to know that you will be monitoring my
  loved one regularly and looking to me for
  guidance and assistance.

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Family Requests for Meaningful Interventions

• You are professionally and morally obligated to
  give me a list of options, ask me how I and my
  loved one want to spend the last months, and help
  us come up with an end-of-life plan of care.
• My final wish is that the cushion of care that
  surrounded me will not immediately be ripped away
  once my loved one has died.
• A Mothers Wish Meaningful Interventions for
  Pain Management. Lisa Buell. Childrens Project
  on Palliative/Hospice Services, National Hospice
  and Palliative Care Organization. February, 2009.