A Conversation With Tiffany

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A Conversation With Tiffany
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Edutainment

• Neologism new word coinage
• Similar to infotainment
• Expresses the marriage of education and
  entertainment in a work or presentation
• The science and art of consciously integrating
  educational messages into popular media
  entertainment formats.

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Tiffanys Intention

• Address difficult subject(s) with humor and
  poignancy
• Critical look at suffering
• Illustrates poverty of the spirit
• Multi-purpose/multi-venue/multi-conversation
  application
• Invitation to view life as extraordinary

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A Conversation About Tiffany
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Is Tiffanys End of Life Experience Unique?
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Where do many hospitalized patients die?
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I C U !
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Where do most people say that they want to die?
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Where do you think Tiffany wanted to die?
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How Did Tiffany Suffer?
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• Physical pain
• Symptom burden
• Anonymity
• Loss of choice over destiny
• Loss of dignity
• Loss of consortium
• Separation and lack of connection
• Spiritual
• Financial

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Sources of Pain and Physical Discomfort

• Phantom pain
• Procedure(s) without analgesia
• Clinical condition (sepsis, dialysis,
  post-surgical)
• Uncomfortable bed
• Preexisting condition(s)?

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• The SUPPORT Study
• Controlled trial to improve care of seriously ill
  patients
• Five tertiary care teaching hospitals
• Multi-center study funded by RWJ
• 9000 patients with life threatening illness, 50
  died within 6 months of entry

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Pain data from SUPPORT Study
of 5176 patients reporting moderate to severe
pain between days 8-12 of hospitalization colon
cancer 60 liver failure 60 lung
cancer 57 MOSF cancer 53 MOSF
sepsis 52 COPD 44 CHF 43 Desbien
s Wu. JAGS 200048S183-186.
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Discomfort Ratings For 16 Common Hospital
Procedures For 165 Subjects

• Severe Discomfort
• Nasogastric tube
• Mechanical ventilation
• Mechanical restraints
• Central line placement
• Moderate Discomfort
• Arterial blood gas
• Urethral catheter
• Mild Discomfort
• IV insertion

• Phlebotomy
• IV catheter
• IM/SC injection
• Waiting for procedures
• Movement from bed to chair
• Chest X-ray
• No Discomfort
• Transfer to a procedure
• Vitals signs
• PO medications

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Analgesic Prescribing For 4003 Nursing Home
Patients with Cancer and Daily Pain
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Why Pain?

• Practitioners are not trained in state-of-the art
  pain management
• Myths about addiction, dependence, and tolerance
  abound
• The toll that unrelieved pain takes on the body
  and mind is not understood or acknowledged
• Fear that pain intervention might cause the
  patient to die
• Flawed assessments
• Disconnect
• Failure to look at non-physical sources

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Symptom Burden

• Fatigue
• Nausea
• Depression
• Anxiety
• Drowsiness
• Loss of appetite
• Shortness of breath
• GI problems

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Edmonton Symptom Assessment Scale (ESAS Numerical
Scale) Please circle the number that best
describes No Pain 0 1 2 3 4 5 6 7 8 9 10 Worst
Possible Pain Not Tired 0 1 2 3 4 5 6 7 8 9 10
Worst Possible Tiredness Not Nauseated 0 1 2 3 4
5 6 7 8 9 10 Worst Possible Nausea Not Depressed
0 1 2 3 4 5 6 7 8 9 10 Worst Possible
Depression Not Anxious 0 1 2 3 4 5 6 7 8 9 10
Worst Possible Anxiety Not Drowsy 0 1 2 3 4 5 6 7
8 9 10 Worst Possible Drowsiness Best Appetite 0
1 2 3 4 5 6 7 8 9 10 Worst Possible Appetite Best
Feeling of Well being 0 1 2 3 4 5 6 7 8 9 10
Worst Possible Feeling No Shortness of Breath 0 1
2 3 4 5 6 7 8 9 10 Worst Possible Shortness of
Breath Other Problem 0 1 2 3 4 5 6 7 8 9 10
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Anonymity
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Did Anybody Know Who Tiffany Was? What She
Looked Like? What Her illness Meant to Her? What
She Wanted? Who She Needed? Who Needed Her?
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Loss of control over destiny
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No Clear Picture

• Multiple consultants dont talk to each other
• Patients and families receive information in bits
  and pieces or not at all or conflicting
• Patients wishes/goals not known/elicited
• Advance directives?
• Caregivers not sure of goals/plan
• Lack of interdisciplinary coordination

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Recent Study

• Johns Hopkins Oncology SICU
• Baseline lt10 residents and nurses understood
  daily goals of care
• After implementation of system,gt95 understood
  daily goals of care
• LOS decreased from a mean of 2.2 days to 1.1 days

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Loss of dignity
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Separation and lack of connection
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Loss of consortium
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Spiritual Suffering
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Financial Suffering
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Grief and Bereavement
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FUTILITY
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Multi-System Organ Failure
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CPR Data

• 133/ 209 patients who died in CCU over 18 months
  received CPR
• 133 patients underwent 172 episodes of CPR
• One episode was gt 2 hours 5 were gt 1 hour
  national recommendations are 10-20 minutes
• 16 patients survived no patient who underwent
  CPR gt 1 time survived
• Healthy person who arrests 30 40 chance

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The Cure - Care Model The old system
D E A T H
Life Prolonging Care
Palliative/ Hospice Care
Disease Progression
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Palliative Cares Place in the Course of Illness
Life Prolonging Therapy
Death
Diagnosis of serious illness
Medicare Hospice Benefit
Palliative Care
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Why hospital-based palliative care? The clinical
imperative

• Hospitals are where the sickest people go and
  remain the site of death for many.
• Numerous studies document unnecessary patient
  suffering.
• Patients feel a loss of control and unsafe in
  fragmented medical system.
• Patients want and will demand better care.
• Family caregiver burden
• Hospitals and clinicians struggling to do their
  best, meet JCAHO pain, quality standards

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The Role of Palliative Care

• In-depth and comprehensive assessment
• Pain and symptom management
• Eliciting and establishing goals of care
• Facilitating interdisciplinary communication
• Assisting with difficult conversations and
  breaking bad news
• Assistance with grief, bereavement, and spiritual
  issues and care
• Assistance with psychosocial issues
• Education and mentoring

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Palliative Care/Hospice Partnerships
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There is never nothing more we can do.