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Palliative Care

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Title: Palliative Care


1
Palliative Care
  • How one might live before they die
  • Melissa Matulis, MD..

2
Cultural Attitudes
  • In the beginning, man did not fear death but
    instead accepted it as a natural process.
  • The Middle Ages brought about a change in
    attitude from death as ordinary and accepted to
    death as something shameful.
  • In the 1930s, historians noted that people were
    no longer dying at home surrounded by friends and
    family, but in hospitals or nursing homes alone
    and isolated.
  • Over the last 40 years, our society has become
    increasingly influenced by new technology that
    has led to a more scientific and less humanistic
    approach to caring for people.
  • The art of medicine has been replaced by the
    science of medicine.

3
History of Palliative Care
  • In the early 1960s and continuing into the 70s,
    the concept of death awareness developed and
    palliative care was born.
  • Palliative care had its origins in the hospice
    movement which began in England in 1967.
  • The interest in the terminally ill in the United
    States was sparked by the book On Death and Dying
    (1969) by Elisabeth Kubler-Ross.

4
Definition of Palliative Care
  • Palliative Care is defined by the World Health
    Organization as the active total care of
    patients whose disease is not responsive to
    curative treatment.
  • This definition encompasses several principles
  • 1. It affirms life and regards dying as a
    normal process.
  • 2. It neither hastens nor postpones death.
  • 3. It provides relief from pain and other
    distressing symptoms.
  • 4. It offers a support system to help patients
    live as actively as
  • possible until death.
  • 5. It integrates the psychological and
    spiritual aspects of patient care.
  • 6. It offers a support system to help the
    family cope during the
  • patients illness and in their own
    bereavement.

5
Influences changing our attitudes
  • 1. Our aging population
  • by 2030, 21 of our population will be age 65 and
    older
  • 8.8 million people will be over the age of 85
  • 2. Emergence of patient autonomy and informed
    consent
  • 3. The Right-to-Die Movement
  • 4. The high cost of dying

6
SUPPORT Trial
  • In JAMA November, 1995, investigators published a
    controlled trial to improve care for seriously
    ill, hospitalized patients entitled The Study to
    Understand Prognosis and Preferences for Outcomes
    and Risks of Treatments (SUPPORT).

7
SUPPORT Trial
  • SUPPORT was a study of symptom experience,
    decision-making, and prognosis in hospitalized
    adults with one or more of 9 high mortality
    diseases.
  • Patients were required to meet defined severity
    criteria to establish a 6-mos mortality rate of
    47.

8
SUPPORT Trial
9
SUPPORT Trial
  • RESULTS
  • Phase I
  • 47 of physicians knew when their patients did
    not want CPR.
  • 46 of DNR orders were written within 2 days of
    death.
  • 38 of patients who died spent at least 10 days
    in an ICU.
  • For 50 of conscience patients who died in the
    hospital, family reported moderate to severe pain
    at least half the time.

10
SUPPORT Trial
  • In Phase 2, authors hypothesized that increased
    communication and understanding of prognosis and
    preferences would result in earlier tx decisions,
    decreased time in undesirable states before
    death, and a decrease in hospital resource use.

11
SUPPORT Trial
  • The intervention physicians received estimates of
    likelihood of 6-mos survival for every day up to
    6-mos, outcomes of CPR, and functional disability
    at 2-mos.
  • A specially trained clinical nurse facilitated
    communication between physician, patient, and
    family using questionnaires.

12
SUPPORT Trial
  • RESULTS
  • Phase 2
  • Patients experienced no improvement in
    patient-physician communication.
  • No improvement in incidence of timing of written
    DNR orders. (AR 1.02, CI 0.90-1.15)
  • No change in physicians knowledge of the
    patients preferences not to be resuscitated. (AR
    1.22, CI 0.99-1.49)

13
SUPPORT Trial
  • RESULTS
  • Phase 2
  • No difference in the number of days spent in the
    ICU, comatose, or receiving mechanical
    ventilation before death. (AR 0.97, CI 0.87-1.07)
  • No change in level of reported pain. (AR 1.15, CI
    1.00-1.33)
  • No reduction in the use of hospital resources.
    (AR 1.05, CI 0.99-1.12)

14
Barriers to Palliative Care
  • Advance Directives
  • Confusion of the Dying Role and the Sick Role
  • Lack of Physician Education

15
Physician Education
  • Archives of Internal Medicine, 1995
  • only 26 of residency programs offered a course
    on end-of-life care
  • 15 had no formal training at all
  • New England Journal of Medicine, 1997
  • 38 of residents felt comfortable educating
    families about the dying process
  • 32 felt comfortable responding to patients who
    request assistance in dying
  • Academic Medicine, 1991
  • only 11 of medical schools offered full-term
    courses on death education

16
Barriers to Palliative Care
  • Advance Directives
  • Confusion of the Dying Role and the Sick Role
  • Lack of Physician Education
  • The Health Care Delivery System
  • Narcotic Distribution Laws

17
Role of the PCP
  • Comprehensive care of the patient AND the family.
  • Changing the focus of care from cure to
    palliation.
  • Prognostic Guidelines
  • National Hospice Organization
  • Fox et al., JAMA 1999

18
Fox et al.--JAMA 1999
  • Fox et al developed a study to evaluate the
    accuracy of the prognostic criteria in patients
    dying from COPD, CHF, and ESLD by developing a
    validation study.
  • Using the NHO guidelines and the SUPPORT trial
    population, they grouped 7 prognostic criteria
    into 3 different combinations to identify those
    patients with a survival prognosis of 6-mos or
    less.

19
More on Fox et al.
20
Fox et al. (cont)
  • COMBINATION CRITERIA
  • Broad Inclusion 1 of the 7 criteria
  • Intermediate Inclusion 3 of the 7 criteria
  • Narrow Inclusion 5 of the 7 criteria
  • for example, if one had significant weight loss,
    low albumin, and cor pulmonale (3 criteria), then
    he would be included in the broad and
    intermediate groups, but not in the narrow.

21
Fox et al. (cont)
22
SUPPORT Data Prognostic Model
23
Operating Characteristic Comparisons
24
Fox et al., JAMA 1999--Results
  • Each of the combination criteria had a high
    specificity, meaning they excluded those who
    lived over 6 mos.

25
Fox et al., JAMA 1999--Results
  • However, the sensitivities were severely
    inadequate, meaning the criteria failed to
    identify those they intended--the dying pts whose
    prognosis was indeed lt 6 mos.

26
Fox et al., JAMA 1999--Results
  • Actual discharge to hospice was the most powerful
    predictor of death within 6-mos.

27
Role of the PCP
  • Comprehensive care of the patient AND the family.
  • Changing the focus of care from cure to
    palliation.
  • Prognostic Guidelines
  • National Hospice Organization
  • Fox et al., JAMA 1999

28
Breaking the News
  • Patients want
  • Physicians to be truthful.
  • To be told in person with time to ask questions.
  • Assurance they will not be abandoned.
  • A promise of optimal pain control.
  • Access to appropriate resources and counseling.
  • Ongoing communication with their physician.

29
Role of the PCP
  • Comprehensive care of the patient AND the family.
  • Changing the focus of care from cure to
    palliation.
  • Prognostic Guidelines
  • National Hospice Organization
  • Fox et al., JAMA 1999
  • Breaking the news

30
Bereavement
  • Patients and families begin the mourning process
    at the diagnosis of life-threatening disease.
    This is termed Anticipatory grief.
  • Kubler-Ross book On Death and Dying identifies
    5



    stages to describe the experience of
    dying denial,



    anger, bargaining, depression,
    and acceptance.
  • Spousal loss is associated with increased
    morbidity



    and mortality in the survivor,
    therefore bereavement



    counseling should
    continue for 1 year after the death.

31
Role of the PCP
  • Comprehensive care of the patient AND the family.
  • Changing the focus of care from cure to
    palliation.
  • Prognostic Guidelines
  • National Hospice Organization
  • Fox et al., JAMA 1999
  • Breaking the news
  • Bereavement

32
Active Care of the Dying
  • The physicians primary goal is to assist the
    patient in achieving relief of emotional pain and
    to increase physical comfort.
  • To achieve this goal the physician must work with
    the patient and family to achieve a plan of care.

33
Active Care of the Dying
  • The Plan of Care addresses
  • pain control
  • symptom management
  • spiritual needs
  • social needs
  • wishes for interventions at the time of death
  • a method to meet these goals

34
Active Care of the Dying
  • Pulmonary Symptoms
  • Dyspnea
  • The Death Rattle
  • Cough

35
Active Care of the Dying
  • Pulmonary Symptoms - Dyspnea
  • Is there a reversible condition present?
  • Using low dose narcotics such as morphine to
    reduce air hunger.
  • Is there an anxiety component?
  • The use of corticosteriods
  • What about bedside fans, oxygen,




    mucolytics, or sedation?

36
Active Care of the Dying
  • Pulmonary Symptoms - The Death Rattle
  • Drying agents such as atropine or scopolamine
    desiccate pulmonary secretions and relax the
    smooth muscle of the tracheobronchial tree.
  • Gentle suctioning.

37
Active Care of the Dying
  • Pulmonary Symptoms - Cough
  • Is there an underlying cause?
  • The use of opioids.

38
Active Care of the Dying
  • Gastrointestinal Symptoms
  • Nausea and Vomiting
  • Constipation and Ileus
  • Anorexia
  • Xerostomia

39
Active Care of the Dying
  • GI Symptoms - Nausea and Vomiting
  • The Four Pathways to the vomiting center

The Chemotrigger Zone Peripheral Afferent
Nerves Cortical Structures Vestibular Apparatus
40
Active Care of the Dying
  • GI Symptoms - Nausea and Vomiting
  • The Four Pathways
  • The Chemotrigger Zone (CRZ)
  • activated when offending agents such as opioids,
    NSAIDs, or uremic toxins cross the blood-brain
    barrier.
  • treatment includes removing the noxious agent,
    reversing pathology, or blocking the CRZ
    dopamine, acetylcholine, and/or histamine
    receptors.

41
Active Care of the Dying
  • GI Symptoms - Nausea and Vomiting
  • The Four Pathways
  • Peripheral Afferent Nerves
  • Stimulation of these nerves along the GI tract by
    mucosal irritation, viscous enlargement, or pain
    from irritation of other areas such as liver or
    pelvic organs.
  • Treatments include H2 blockers, laxatives or
    prokinetics, steroids or opioids.

42
Active Care of the Dying
  • GI Symptoms - Nausea and Vomiting
  • The Four Pathways
  • Cortical Structures
  • This pathway is associated with increased
    intracranial pressure as well as anxiety and
    preconditioning.
  • Treatment includes steroids and benzodiazepines

43
Active Care of the Dying
  • GI Symptoms - Nausea and Vomiting
  • The Four Pathways
  • Vestibular Apparatus
  • Associated with movement and vertigo
  • Treatment includes anticholinergic and
    antihistaminic



    agents as well as steroids for
    increased intracranial



    pressure.

44
Active Care of the Dying
  • GI Symptoms - Constipation
  • Constipation is a common and predictable symptom
    secondary to the widespread use of narcotics in
    the dying patient.
  • The physician must prescribe a regular bowel
    regime with the institution of narcotics.
  • Bulk laxatives, stool softeners, as well as gut
    stimulants
  • If possible, adequate fluid intake and high fiber
    diet.

45
Active Care of the Dying
  • GI Symptoms - Constipation
  • Impaction can also present as severe




    constipation or overflow incontinence
    with



    abdominal pain mimicking bowel
    obstruction.
  • Treatment includes a softening and stimulating




    suppository. Occasionally digital




    disimpaction is required.

46
Active Care of the Dying
  • GI Symptoms - Constipation
  • Remember if a patient has significant nausea




    and vomiting with or without concomitant
    constipation, the diagnosis of ileus or bowel
    obstruction should be considered.
  • Patients can be managed using somatostatin
    instead of nasogastric suctioning.

47
Active Care of the Dying
  • GI Symptoms - Anorexia
  • Anorexia can be very distressing to patients
    family for fear of their loved one starving to
    death.
  • Furthermore, many physicians are
    uncomfortable not providing nutrition and
    hydration to the terminally ill.

48
Active Care of the Dying
  • GI Symptoms - Anorexia
  • Nutrition and hydration remain controversial,
    but recent information supports the conclusion
    that tube feeding or intravenous feeding seldom
    achieves the intended medical goal.
  • Furthermore, rather than prevent suffering,
    they can cause it.

49
Active Care of the Dying
  • GI Symptoms - Anorexia
  • McCann et al. published a study in JAMA 1994
    that found
  • 63 of patients dying of cancer never
    experienced hunger
  • the 34 that did experience hunger only needed
    small amounts of food for alleviation

50
Active Care of the Dying
  • GI Symptoms - Anorexia
  • McCann et al. also that found

- 62 experienced either no thirst or thirst only
initially in their terminal illness and received
relief with sips of water, ice chips, and mouth
care.
51
Active Care of the Dying
  • GI Symptoms - Anorexia
  • McCann et al. concluded that food and fluids
    beyond specific request of the patient may do
    little to improve comfort in the terminally ill.

52
Active Care of the Dying
  • GI Symptoms - Anorexia
  • The data collected over the past decade suggest
    that tube feeding does not reduce aspiration
    risk, prolong life, promote comfort, or reduce
    suffering.

53
Active Care of the Dying
  • GI Symptoms - Anorexia
  • Many authors do not advocate the use of fluids
    without nutrition. Fluids can cause harm by
    prolonging the dying process, by increasing
    pulmonary secretions, and by increasing urine
    production.

54
Active Care of the Dying
  • GI Symptoms - Xerostomia
  • Dry mouth is another common problem in terminally
    ill patients and can be exacerbated by
    malnutrition and anorexia.
  • Treatment includes good oral hygiene, sips of
    water, saliva substitutes, and pilocarpine.
  • Also avoid giving the patient alcohol-containing
    mouthwash and caffeine.

55
Active Care of the Dying
  • Dermatologic Symptoms
  • Cleanliness
  • Pressure ulcers
  • Pruritus

56
Active Care of the Dying
  • Dermatologic Symptoms
  • Cleanliness
  • Adequate skin care improves interaction with
    family and friends, prevents skin breakdown, and
    enhances human dignity.
  • The best management is the use of diapers,
    frequent bathing, and changing of clothing. This
    is more comfortable and dignified than
    instrumentation or medication.

57
Active Care of the Dying
  • Dermatologic Symptoms
  • Pressure ulcers
  • Many factors that predispose the dying patient to
    pressure ulcers are unavoidable.
  • Prevention with frequent turning, good hygiene,
    and an appropriate bed is important.
  • If ulcers do develop treatment includes local
    dressing changes and analgesic medications rather
    than surgical intervention.

58
Active care of the Dying
  • Dermatologic Symptoms
  • Pruritus
  • Pruritus may be caused by many factors such as
    excessive skin washing, drug reactions, or liver
    dysfunction.
  • Treatment includes anesthetics, antihistamines,
    and lotions. If these remedies do not provide
    relief, the PCP can consider treating the
    underlying condition or sedating the patient.

59
Active Care of the Dying
  • Psychological Symptoms
  • Anxiety
  • Depression
  • Delirium
  • Social Needs
  • Spiritual Needs

60
Active Care of the Dying
  • Psychological Symptoms
  • The management of depression and anxiety in the
    terminally ill is of paramount importance to
    improve quality of life.
  • Treatment of anxiety includes drugs from the
    benzodiazepine, antidepressant, antihistimine,
    and opioid classes. Remember to rule out
    withdrawal as a cause of patients anxiety.

61
Active Care of the Dying
  • Psychological Symptoms
  • Depression is best managed by first providing
    optimal pain control. Then, use the patient
    interview to make the diagnosis.
  • Many authors recommend using SSRIs, tricyclic
    antidepressants and/or psychostimulants, as well
    as counseling.

62
Active Care of the Dying
  • Psychological Symptoms
  • Delirium is a common symptom experienced by the
    dying patient and is often multifactorial and
    difficult to correct.
  • Haloperidol is the most often recommended
    treatment.
  • Some patients suffer from terminal delirium
    which is treated with sedation using
    methotrimepazine or midazolam.

63
Active Care of the Dying
  • Psychological Symptoms
  • It is important to address patients social needs
    by providing contact with social services that
    can aid the family with hospital equipment and
    home health services.
  • Many will also benefit from contact with clergy
    or counselors to aid them as they cope with death
    and dying and work to resolve issues with family
    and friends. (The Psychological Process of Dying)

64
Active Care of the Dying
  • Pain Control
  • One of the most vital goals of the physician is
    optimal pain prevention for the terminally ill.
  • Singer et al. asked patients dying of ESRD and
    AIDS as well as residents of a long-term care
    facility to describe quality end of life care,
    five domains were identified. The first of these
    five domains was to receive adequate pain and
    symptom management.

65
Active Care of the Dying
  • Barriers to Adequate Pain Control
  • The patients fear of sedation with adequate pain
    control.
  • Excessive fear of addiction to narcotics.
  • Some physicians feel the patient is a poor judge
    of his own pain.

66
Active Care of the Dying
  • Barriers to Adequate Pain Control
  • Scrutiny by drug regulators.
  • Physicians fear that adequate pain control will
    inadvertently hastens the patients death. They
    are unaware of the principle of double effect.
  • The concept of total pain.

67
Active Care of the Dying
  • The concept of total pain
  • Desbiens et al. performed a prospective, cohort
    study using the pain data collected in the
    SUPPORT trial.
  • They found that patients with more dependencies
    in activities of daily living, more depression,
    more anxiety, and poor quality of life reported
    more pain.

68
Active Care of the Dying
  • The concept of total pain
  • Desbiens et al also found that patients with
    more severe pain, greater anxiety and/or
    depression, altered mental status, and lower
    income reported a dissatisfaction with their
    pain control.
  • This study supports the need to treat all
    aspects of pain.

69
Active Care of the Dying
  • The Types of Pain
  • Visceral pain
  • Somatic pain
  • Neuropathic pain

70
Active Care of the Dying
  • The Assessment of Pain
  • Numeric scales, visual analog scales, descriptive
    pain intensity scales, and physical signs in the
    nonverbal patient are all effective means to
    assess pain.
  • Ratings will need to be made several times a day
    over many days to establish a patients initial
    needs. This must be followed by periodic
    assessment for changing needs.

71
Active Care of the Dying
  • Pain Control
  • Orders for managing chronic pain in dying
    patients should include
  • an approach to preventing recurrence
  • a plan for breakthrough pain
  • attention to side effects
  • schedule for reassessment

72
Active Care of the Dying
  • Pain Control - the Cancer Pain Ladder
  • The original ladder had three rungs but recently
    the second rung has been eliminated.
  • The bottom rung represents first line therapy
    with NSAIDs and aspirin.
  • The second rung previously represented the
    combination analgesics.
  • The top rung deals with moderate to severe pain
    using opioid analgesics.

73
Active Care of the Dying
  • Pain Control - the Cancer Pain Ladder
  • The proper dose of opioid analgesic is that
    which provides relief of pain without causing
    unacceptable side effects.
  • Morphine is the gold standard.
  • Other choices are oxycodone and transdermal or
    the lozenge form of fentanyl.

74
Active Care of the Dying
  • Pain Control - the Cancer Pain Ladder
  • Proper dosing includes a long-acting agent with
    twice daily dosing along with one-third of the
    24 hour dose to be given every 2-4 hours as
    needed.
  • If over the next 24 hours, the patient requires
    more than three rescue doses, the baseline
    should be increased and the rescue dose
    readjusted.

75
Active Care of the Dying
  • Pain Control - the Cancer Pain Ladder
  • Intravenous morphine for the first 24 hours is
    another option to determine a patients need.
  • The use of conversion tables will aid in the
    task of converting to an oral long-acting
    agent. (see handout)

76
Active Care of the Dying
  • Pain Control - Adjuvant Measures
  • Pharmacologic examples include anxiolytics,
    anticonvulsants, and antidepressants.
  • Nonpharmacologic examples are neurostimulation,
    acupuncture, massage, and behavior therapy using
    imagery, aromatherapy, biofeedback, and support
    groups.
  • Last resort measures include nerve block,
    surgical destruction, or radiation therapy.

77
Active Care of the Dying
  • Pain Control - Neuropathic pain
  • Treatment agents are prescribed in an attempt to
    normalize conduction within the nerve and thereby
    decrease the pain.
  • Suggested pharmacologic measures include
    antidepressants, anticonvulsants, local
    anesthetics, and steroids. Some patients will
    need the addition of opioids.

78
Active Care of the Dying
  • Pain Control
  • Remember to treat the side effects of




    NSAIDs and opioid analgesics.
  • Addiction is rare. Dying patients rarely
    exhibit true drug-seeking behavior, but
    unfortunately, they often demonstrate
    pain- relief seeking behavior.

79
Palliative Care
  • The Hospice Movement
  • The history
  • England, 1967 - St. Christophers Hospice founded
    by Dr. Cicely Saunders.
  • America, 1974 - first hospice funded by the NCI
    opened in New Haven, Connecticut.
  • The National Hospice Organization established in
    1977.

80
Palliative Care
  • The Hospice Philosophy
  • Death is a natural part of the life cycle and
    when it is inevitable, hospice will neither seek
    to hasten nor postpone it.
  • Pain relief and symptom management are clinical
    goals.
  • Psychological and spiritual pain, as well as
    physical pain are addressed by an
    interdisciplinary team.

81
Palliative Care
  • The Hospice Philosophy
  • Patients, family and loved ones are the unit of
    care.
  • Bereavement care is critical to supporting
    surviving family and friends.
  • Care is provided 24 hours a day, seven days a
    week, regardless of the ability to pay.

82
Palliative Care
  • The Hospice Philosophy
  • Evidence to support the hospice philosophy is
    mixed.
  • The National Hospice Study
  • A secondary analysis of the National Hospice
    Study
  • Kane et al.
  • These studies demonstrate that caregiver and
    patient satisfaction is at least as good, and
    often superior to that of conventional care.

83
Palliative Care
  • The Cost-Effectiveness of Hospice Care
  • Studies to demonstrate the monetary advantages of
    hospice care are also mixed.
  • The National Hospice Study
  • Kane et al.
  • Current research supports hospice care as
    cost-saving in the last month of life but overall
    the effect on cost appears to be weakly positive.
  • There is no evidence that hospice adds to costs.

84
Palliative Care
  • The TEFRA Legislation (1982)
  • Patient eligibility requirement of
    physician-certified prognosis of six months or
    less.
  • Capitated reimbursement.
  • A limitation of 210 days coverage-no more than
    20 spent in inpatient setting.
  • Hospices must provide home nursing and inpatient
    services.

85
Palliative Care
  • The TEFRA Legislation
  • The hospice interdisciplinary team must maintain
    financial and clinical control of all patient
    care in both home and inpatient settings.
  • Ministerial, bereavement, and volunteer services
    are not directly reimbursable.
  • HCFA has established four levels of care that
    determine the rate of reimbursement.

86
Palliative Care
  • The Barriers to Hospice Referral
  • The certification of terminal illness-prognosis
    of six months or less.
  • Studies show that the overall survival after
    hospice referral is short which may suggest that
    they have received unnecessary aggressive care or
    inadequate use of a desired type of terminal care
    for a long period of time prior to referral.
  • The capitated form of Medicare payment.
  • Influences enrollment and services offered.

87
Palliative Care
  • The Barriers to Hospice Referral

It is important to remember when trying to
determine the cost/benefit/limits on hospice
care, that we all will eventually be part of the
dying and want dignity and comfort despite the
cost.
88
Palliative Care
  • In conclusion
  • Dr. Cicely Saunders summed the needs of the dying
    with the words Watch with me. This comment
    does not mean take away or understand but
    instructs the physician to Be there.
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