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Palliative Care and End of Life Issues

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Title: Palliative Care and End of Life Issues


1
Palliative Care and End of Life Issues
Christina Price, MPH Delta Region AIDS Education
and Training Center
2
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

3
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

4
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

5
Approaches to Palliative End Stage CarePain
Management
  • PAIN IS ONE OF THE MOST
  • DISTRESSING PREVALENT FEARED
  • SYMPTOMS AT END OF LIFE

6
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

7
Name That Pain
8
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

9
Name That Pain
10
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

11
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)

12
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
13
Name That Pain
14
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.

15
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.

16
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.

17
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.

18
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

19
Name That Pain
20
Approaches to Palliative End Stage
CareCommunication
21
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

22
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

23
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

24
Preparing for a Discussion About End of Life Care
25
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

26
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

27
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

28
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

29
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

30
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

31
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?

32
Approaches to Palliative End Stage
CareCultural/spiritual issues
33
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

34
Cultural differences Survey of 800 patients
Should a patient
Blackhall, JAMA, 1995 274820
35
Harm in Discussing Death?
  • Some people believe discussing death can bring
    death closer
  • African Americans
  • Some Native Americans
  • Immigrants from China, Korea, Mexico

36
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

37
Decision Making
  • Primary Decision Makers
  • Patient
  • Family
  • Physician

38
Treatment Preferences
  • Work to accommodate treatment preferences
  • Complementary Alternative Medicine (CAM)
  • Healing ceremony/prayers
  • Acupuncture
  • Herbs (topical and oral)

39
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

40
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

41
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?

42
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?

43
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

44
Advanced Care Planning
45
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

46
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

47
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?

48
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

49
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

50
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

51
5) Apply
  • Review the Advance Directive
  • Consult with proxy
  • Use ethics committee for disagreements
  • Carry out the treatment plan

52
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

53
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.

54
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

55
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

56
Take Home Point
  • Even When a Cure is Not Possible Care is Still
    Needed

57
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