Palliative Care and End of Life Issues

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Palliative Care and End of Life Issues
Christina Price, MPH Delta Region AIDS Education
and Training Center
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Objectives

• Define palliative/end stage care
• Discuss approaches to palliative/end stage care
• Discussing end of life care with the patient
• Cultural/spiritual issues
• Pain management
• Understand the process of Advanced Care Planning

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What is Palliative Care?

• Treatment that focuses on reducing the severity
  of disease symptoms rather than providing a cure
• Includes psychosocial and medical care
• Offer throughout the illness
• Including end of life
• Relieve the burden of illness on both patient and
  family
• Recognize your own discomfort

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Why Palliative Care for People with HIV/AIDS?

• Dramatic changes in care for HIV-infected pts
• Shift in the course of dying from HIV/AIDS
• Expanded definition of palliative care
• Pts with HIV infection have palliative care needs
  at each stage of the illness

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Approaches to Palliative End Stage CarePain
Management

• PAIN IS ONE OF THE MOST
• DISTRESSING PREVALENT FEARED
• SYMPTOMS AT END OF LIFE

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Approaches to Palliative End Stage CarePain
Management

• Pain is subjective
• Occurs in 30-60 of HIV/AIDS patients
• Significantly under-treated, especially in women
• HIV-associated peripheral neuropathy
• Typically presents as distal sensory
  polyneuropathy
• May be related to HIV itself or medication
  toxicity
• Assess at every visit

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Name That Pain
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Approaches to Palliative End Stage CarePain
Management

• Pain Assessment
• Determine type of pain
• Nociceptive responds well to opioids
• Neuropathic responsive to tricyclics,
  anticonvulsants
• W-I-L-D-A
• Words to assess pain
• Intensity choose from several pain scales
• Location
• Duration is the pain always there?
• Aggravating or alleviating factors

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Name That Pain
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Approaches to Palliative End Stage CarePain
Management

• Treatment Goal
• Achieve optimal patient comfort with minimal
  medication adverse effects
• Non-pharmacologic interventions
• Relaxation techniques
• Deep Breathing
• Meditation
• Guided imagery
• Massage
• Reflexology
• Acupuncture
• Prayer

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Approaches to End Stage CarePain Management

• Pharmacologic Interventions
• 3-step Analgesic Ladder
• Step 1 Non-opiates for mild pain (scale 1-3)
• Step 2 Mild opiates for moderate pain (scale
  4-6)
• Step 3 Opioid agonist drugs for severe pain
  (scale 7-10)

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Pain Severity Analgesic Choice Examples
Mild Pain (score 1-3) Acetaminophen NSAID Tylenol Ibuprofen Naproxen
Moderate Pain (score 4-6) APAP/opioid combinations Mild opiates w/o APAP Toradol Vicodin Tylox Tylenol with codeine
Severe Pain (score 7-10) Opioid Morphine Fentanyl Hydromorphone
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Name That Pain
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Myths and Misconceptions About Opioids

• Anyone who takes opioids for pain control will
  become addicted.

• Fact Studies repeatedly show that the incidence
  of addiction in people given opioids to relieve
  cancer pain is less than 0.1.

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Myths and Misconceptions About Opioids

• If strong opioids are used too soon, there will
  be nothing left for later.

• Fact There is no ceiling on the amount of
  opioid analgesic that can be given.
• The dose may be adjusted up or down to ANY DOSE
  that effectively relieves the patients pain.

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Myths and Misconceptions About Opioids

• Clock watching is a sign of addiction.

• Fact Clock watching is a sign that the PLAN is
  wrong!
• Either the order is for a medication with a
  duration that is too short for the frequency to
  be given, or the dose ordered is below the
  effective level for that patient.

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Myths and Misconceptions About Opioids

• We must believe what the patient tells us about
  their pain.

• No, we must only ACCEPT what the patient tells us
  about their pain.

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Some Common Adjuvant Analgesics

• Any drug that has a primary indication other than
  pain but is analgesic in some painful conditions
• Add-on therapy to an opioid regimen
• Anticonvulsants Muscle relaxants
• gabapentin (Neurontin) diazepam (Valium)
• 
  carisoprodol (Soma)
• Antidepressants Topical agents
• amitriptyline (Elavil) capsaicin
  (Zostrix)
• fluoxetine (Prozac) EMLA cream

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Name That Pain
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Approaches to Palliative End Stage
CareCommunication
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The Important Role of Good Communication

• Clinicians with good communication skills
  identify patients problems more accurately
• We cant predict patients wishes
• Patients and their family members say its
  important
• Patients are more satisfied with care and better
  adjusted psychologically

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Communication Competencies

• Listen to patients
• Encourage questions from the patients
• Talk with patients in an honest and
  straightforward way
• Gives bad news in a sensitive way
• Prepare info, location, setting
• Find out what they already know
• Ask how much they want to know
• Share the information
• Respond to the patients emotion
• Negotiate a concrete follow up step

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Communication Competencies

• Give enough information to understand their
  illness and treatments
• Tell patients how this illness may affect their
  life
• Guide patient and family to helpful resources
• Be willing to talk about dying
• Be sensitive to when patients are ready to talk
  about death
• Talk with patients about what their dying might
  be like

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Preparing for a Discussion About End of Life Care
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Common Misconceptions About Addressing End Stage
Care

• The discussion will be too depressing
• The patient has never thought about the
  seriousness of their condition
• We stimulate suicidal ideation
• This represents abandonment of primary patient
  care

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Communication BarriersClinicians

• Discomfort with the topic
• I have too little time during appointments
• I worry that discussion will take away hope
• My patient isnt ready to talk about EOL
• My patients ideas about care change over time
• My patient has not been very sick yet

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Communication BarriersPatients

• I dont like talking about getting sick
• I have concerns about bringing up assisted
  suicide
• I would rather concentrate on staying alive
• I have not been very sick
• I dont know what kind of care I want if I get
  very sick

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Preparing for a Discussion About End of Life Care

• Advance preparations
• Knowledge of patient/family and disease
• Review goals of discussion
• Plan timing, location, and setting
• As early as possible in course of illness
• Quiet and private room
• Appropriate people present
• Family, friends, staff, interpreter

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Holding a Discussion About End-of-Life Care

• Elicit patient/familys understanding and values
• Use language appropriate to the patient
• Align patient and clinician values
• Use repetition to show you are listening
• Acknowledge emotions, difficulty
• Use reflection to show empathy
• Tolerate silences

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Finishing a discussion about end of life care

• Achieve a common understanding
• Make recommendations
• Dont leave patient/family feeling deserted
• Ask if there are any questions
• Develop a plan for follow up
• When you will meet again
• How to reach you in the meantime

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Questions for Follow Up

• How are you feeling?
• Tell me about your good days.
• How many have you had in the last month?
• Are you having pain or discomfort?
• Are there things you worry about when you have a
  bad day?
• What have you been told about your condition?
• What does that mean to you?
• Have you considered what you would want to happen
  if you were close to dying?

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Approaches to Palliative End Stage
CareCultural/spiritual issues
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Approaches to Palliative End Stage
CareCultural/spiritual issues

• Attitudes differ toward palliative and end of
  life care
• Based on culture and religion
• Discussing EOL care
• Discussing sicknesses and probability of death
• Decision making
• Treatment

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Cultural differences Survey of 800 patients
Should a patient
Blackhall, JAMA, 1995 274820
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Harm in Discussing Death?

• Some people believe discussing death can bring
  death closer
• African Americans
• Some Native Americans
• Immigrants from China, Korea, Mexico

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Case Study

• A physician attempts to discuss advanced
  directives before going into a life-threatening
  surgery
• Traditional Navajo values expect clinicians to
  speak positively
• Advanced care planning viewed as harmful and
  unacceptable

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Decision Making

• Primary Decision Makers
• Patient
• Family
• Physician

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Treatment Preferences

• Work to accommodate treatment preferences
• Complementary Alternative Medicine (CAM)
• Healing ceremony/prayers
• Acupuncture
• Herbs (topical and oral)

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Herbal Supplements of Concern

• Echinacea may cause progression of HIV
• Milk Thistle may increase the levels of other
  drugs by slowing
• down the liver
  enzymes that process them
• St. Johns Wort may reduce HAART levels
  interfere with
• chemotherapy
• Kava may cause liver dysfunction
• Garlic Supplements may lower levels of
  certain PIs

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The Spiritual Dimension

• Challenged to explore answer questions that
  give purpose and meaning to life
• Who am I?
• What is my purpose in this world?
• Do I have meaning?
• End stage illness and the stigma of HIV can bring
  spiritual concerns to the forefront

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Spiritual Assessment Care

• Be present with the patient
• Communication and listening skills
• Questions to stimulate discussion
  (the tell-me-about approach)
• What is important for us to know about your faith
  or spiritual needs?
• How can we support you needs and practices?
• Do you have an image of a higher power?
• Who do you go to for support?

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Religion and Spirituality

• What has been most important in your life?
• What are you thankful for?
• What has made you happy?
• What is your source of strength now?
• Is there anything that feels unfinished?

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Exploring Cultural Beliefs

• What do you think might be going on?
• If we needed to discuss a serious medical issue
  how would you and your family want to handle it?
• Would you want to handle the information and
  decision-making or should that be done by someone
  else in the family?
• Avoid using family members as translators

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Advanced Care Planning
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Advance Care Planning

• A communication process rather than a legal
  process
• A way of planning for future medical care
• A mechanism of ensuring that care received
  matches patients values and goals
• Two main products
• Living Will
• 
  Advance Directive
• Health care agent or proxy

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5 Steps for Successful Advance Care Planning

1. Introduce topic
2. Structure the discussion
3. Document patient preferences
4. Review and update when clinical course changes
5. Apply directives when need arises

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1) Introduce Topic

• What have you been thinking about a living will?
• Explain the process
• Determine the patients comfort level
• Do you feel ready to talk more about this today?

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2) Structure the Discussion

• Who do you want to make health care decisions for
  you when you cant make them?
• What kind of medical treatment do you want/dont
  want?
• Life support, coma, brain damage
• How comfortable do you want to be?
• Pain, cleanliness, spiritual readings, music,
  personal care
• How do you want people to treat you?
• Company, prayers, hand holding, pictures, home
  death
• What do you want your loved ones to know?
• Forgiveness, fear, respect for wishes,
  counseling, remains

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3) Document Patient Preferences

• Topics to Consider
• Pain management
• Artificial nutrition and hydration
• Mechanical ventilation
• Dialysis
• Blood transfusion
• Sign the documentation place in chart
• Encourage patient to keep copies

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4) Review and Update

• Occurs after a clinical event as a result of
  disease progression
• As disease progresses allow for evolution in
• Patient understanding
• Patient preferences
• Document changes

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5) Apply

• Review the Advance Directive
• Consult with proxy
• Use ethics committee for disagreements
• Carry out the treatment plan

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Natural Signs Symptoms of Approaching Death

• Changes in patterns of elimination
• incontinence, darker urine, decreased urine
  output, constipation
• Reduced strength and mobility
• Needs more assistance with ADLs, increasingly
  confined to a smaller space in the home, frequent
  napping, dozing
• Decreased interest and involvement in activities
• Level of consciousness changes
• Re-prioritizing interests and energy
• Concrete thinking
• Less planning and interest in the future
• Fluid and food reductions
• Patients decreased interest in food/need for
  small frequent amounts of food
• Softer pudding like consistency in food

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Natural Signs Symptoms of Approaching Death

• Commonly described supernatural experiences
• Visitations from people who have died
• References to a mode of transportation
• Less fear and death anxiety after these
  experiences
• Attempt at completion of personal tasks of the
  dying
• Im sorry. Please forgive me. I
  forgive you.
• I love you. Goodbye.

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Natural Signs Symptoms of Approaching Death

• Energy surge
• Quick transition from coma-like rest to agitated
  movement talking desire to eat
• Often with acute mental clarity
• Very time limited
• Issues of personal safety
• Circulation changes
• Hands and feet increasingly cooler to the touch
• Nail beds begin to darken
• Skin mottling
• Respiratory changes--apnea, Cheyne-Stokes

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Elements of Good Death

• Comprehensive symptom management
• Completion of unfinished business
• Balancing the needs/goals of patients and their
  loved ones
• Death with Dignity
• Without focus on inappropriate use of technology
  
• Without unrelenting pain
• In surroundings that are familiar and comfortable
• In the presence of people who can relate as
  compassionate human beings

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Take Home Point

• Even When a Cure is Not Possible Care is Still
  Needed

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