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Title: Death is viewed as the final stage of life, during whic


1
Introduction to End of Life Care
  • Joel S. Policzer, MD
  • Barry M. Kinzbrunner, MD

2
Kubla-Ross Stages of Dying
  • Denial
  • Anger
  • Bargaining
  • Despair
  • Acceptance

3
Defining Good Death
  • Deuteronomy 3015
  • ????? ???????? ????????? ???????, ???-?????????
    ?????-???????, ?????-????????, ?????-?????.
  • See, I have set before thee this day LIFE and
    GOOD, and DEATH and EVIL.

4
Defining Good Death
  • If Life Good Death Evil can
    there truly be such a thing as a Good Death?

5
Defining Good Death
  • WordNet 2.0
  • Good Adjective 24 senses
  • Having desirable or positive qualities especially
    those suitable for a specified thing (vs. bad)
  • Morally admirable (vs. evil)
  • Promoting or enhancing well-being (beneficial)
  • Agreeable or pleasing

6
Defining Good Death
  • Good Death
  • A death that has desirable or positive qualities?
  • A death that is morally admirable?
  • A death that promotes or enhances well-being
    (beneficial)?
  • A death that is agreeable or pleasing?
  • Or
  • Making the best of an undesirable situation

7
Defining Good Death
  • R Smith, ed, British Med J 320129-30, 2000.
  • Principles of a Good Death
  • To know when death is coming and to understand
    what can be expected
  • To be able to retain control of what happens
  • To be afforded dignity and privacy
  • To have control over pain relief and other
    symptoms
  • To have choice and control over where death
    occurs
  • To have access to information and expertise of
    whatever kind is necessary

8
Defining Good Death
  • R Smith, ed, British Med J 320129-30, 2000.
  • Principles of a Good Death
  • To have access to spiritual or emotional support
  • To have access to hospice care in any location
  • To have control over who is present and shares
    the end
  • To be able to issue advance directives which
    ensure wishes are respected
  • To have time to say goodbye and control the
    timing
  • To be able to leave when it is time to go, and
    not have life prolonged pointlessly

9
Defining Good Death
  • K Steinhauser, et al, Ann Int Med 132825, 2000.
  • In Search of a Good Death Observations of
    Patients, Families, and Providers
  • 6 Major Components Identified
  • Pain and Symptom Management
  • Clear decision making
  • Preparation for Death
  • Completion
  • Contributing to others
  • Affirmation of the whole person

10
Defining Good Death
  • D Carr, Rutgers University, 2000.
  • A Good Death for Whom?
  • Introduction summarizes literature on good
    death
  • Minimizes pain
  • Matches patient and family preferences
  • Maintaining relationships with loved ones
  • Accepting ones impending death
  • Dying at the end of a long and fulfilling life
  • Not feeling like a burden to loved ones

11
Dying Well
  • Ira Byock, MD
  • Perhaps a better goal than a good death
  • Death is viewed as the final stage of life,
    during which continued growth and development can
    occur.
  • In addition to relief of physical and emotional
    symptoms additional landmarks that one should
    strive to achieve include
  • Asking and accepting forgiveness
  • Expressing love
  • Acknowledging self-worth
  • Saying good-bye

12
  • How can we assist patients who are terminally ill
    in dying well or achieving a good death?

13
Medicare Hospice Benefit
  • Eligibility Requirements (Sec 418.22)
  • The certification must specify that the
    individuals prognosis is for a life expectancy
    of 6 months or less if the terminal illness runs
    its normal course.

14
Medicare Hospice Benefit
  • Benefits Protection and Improvement Act (BIPA)
    2000
  • Certification of terminal illness of an
    individual who elects hospice shall be based on
    the physicians or medical directors clinical
    judgement regarding the normal course of the
    individuals illness.

15
Care of the Terminally Ill
  • At each stage in an illness, the physician must
    ascertain whether a fatal outcome is
    inevitable.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

16
Determining Prognosis
  • Clinical Progression of Disease
  • Multiple Hospitalizations, ED visits, or
    increased use of other health care services
  • Serial physician assessments, laboratory or
    diagnostic studies consistent with disease
    progression
  • Changes in MDS in LTC facilities
  • Progressive deterioration identified by home
    health care
  • Kinzbrunner BM Predicting Prognosis How to
    Decide when End-of-Life Care is Needed. Chapter 1
    in Kinzbrunner BM, Weinreb NJ, Policzer J 20
    Common Problems in End-of-Life Care. New York,
    McGraw Hill, 2001.

17
Determining Prognosis
  • Changes in Functional Status
  • Cancer Patients
  • PPS lt 50 or ECOG gt 3
  • PPS lt 60 or ECOG gt 2 with symptoms
  • Decline in PPS of at least 20 units in 2-3 months
  • Non-Cancer Patients
  • Dependence in at least 3/6 Activities of Daily
    Living
  • PPS lt 50
  • Kinzbrunner BM Predicting Prognosis How to
    Decide when End-of-Life Care is Needed. Chapter 1
    in Kinzbrunner BM, Weinreb NJ, Policzer J 20
    Common Problems in End-of-Life Care. New York,
    McGraw Hill, 2001.

18
Palliative Performance Scale (PPS)
19
Determining Prognosis
  • Unintentional Weight Loss
  • gt 10 of normal body weight
  • Body Mass Index (BMI) lt 22 kg/m2
  • Kinzbrunner BM Predicting Prognosis How to
    Decide when End-of-Life Care is Needed. Chapter 1
    in Kinzbrunner BM, Weinreb NJ, Policzer J 20
    Common Problems in End-of-Life Care. New York,
    McGraw Hill, 2001.

20
Determining Prognosis
  • Intangible Factors
  • Patients personal goals and approach to his or
    her disease
  • Burden of investigation and treatment vs.
    potential gains for the patient
  • Kinzbrunner BM Predicting Prognosis How to
    Decide when End-of-Life Care is Needed. Chapter 1
    in Kinzbrunner BM, Weinreb NJ, Policzer J 20
    Common Problems in End-of-Life Care. New York,
    McGraw Hill, 2001.

21
Determining Prognosis
  • Cancers
  • Non-Malignant Diseases
  • End-stage cardiovascular disease and congestive
    heart failure
  • End-stage chronic obstructive pulmonary disease
  • End-stage Dementia and other end-stage
    neuro-degenerative diseases
  • End-stage cerebrovascular disease
  • Adult Failure to Thrive
  • Kinzbrunner BM Predicting Prognosis How to
    Decide when End-of-Life Care is Needed. Chapter 1
    in Kinzbrunner BM, Weinreb NJ, Policzer J 20
    Common Problems in End-of-Life Care. New York,
    McGraw Hill, 2001.

22
Care of the Terminally Ill
  • Pain should be adequately controlled, human
    dignity maintained, and isolation from family
    avoided. These last two, in particular, tend to
    be overlooked in hospitals where the intrusion of
    life-sustaining apparatus can so easily detract
    from attention to the whole person.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

23
Barriers to Effective Pain Management
  • Professional Barriers
  • Inadequate knowledge base.
  • Fear of potential addiction.
  • Inadequate pain assessment.
  • Excessive state and federal regulations.
  • Fear of respiratory depression with opioids.
  • Pt/Family Barriers
  • Inadequate knowledge base.
  • Fear of potential addiction.
  • Pts reluctance to report pain.
  • Fear that more pain disease progression
  • Fear they will not be believed or will be viewed
    difficult and complainers.
  • Pts reluctance to take opioids.

24
Role of Assessment in Pain Management
Listen Believe
Pain
Pain Management
Involve
Enhance Quality of Life
Cancer pain management slide and lecture program,
Pain service, Department of Neurology Memorial
Sloan-Kettering Cancer Center, 1990.
25
Morphine and Respiratory Depression
  • Reduces respiratory rate, alveolar ventilation,
    response to hypercapnea and hypoxia in normal
    human subjects.
  • Chronic administration results in tolerance to
    respiratory depressant effects
  • Effective in relieving dyspnea in patients with
    advanced COPD
  • Anxiolytic
  • Preload reduction
  • Reduces response to hypoxia in carotid body

26
Morphine and Respiratory Depression
  • Bruera et al Annals of Internal Medicine 1993
  • 10 patients on chronic morphine for pain control
  • Received a 50 increase in morphine dose as a
    bolus to treat dyspnea.
  • Study in double-blind cross-over design with
    placebo for comparison
  • Results
  • Statistically significant improvement in
    subjective dyspnea ( p lt 0.01)
  • No change in O2 saturation or respiratory rate
  • Bruera E, et al Subcutaneous morphine for
    dyspnea in cancer patients. Ann Int Med 119906,
    1993.

27
Morphine and Respiratory Depression
  • Kinzbrunner and Tanis ASCO Proceedings 2004
  • 8680 terminally ill cancer patients admitted to
    hospice
  • Pain level on admission directly correlated with
    survival
  • LOS no pain-39 (20) days mild pain-38 (19)
    days
  • Moderate pain-34 (16) days severe pain-29 (13)
    days
  • Evaluation of survival based on pain reduction
    following 48 hours of treatment
  • Severe pain to lt 5 35 (18) days vs. gt 5 27
    (12) days
  • All other sub-groups with no significant
    difference
  • In no case was survival shorter in the group in
    which pain was treated effectively
  • Aggressive pain management on admission to a
    hospice program shows no evidence of shortening
    life expectancy, and may, at least for patients
    with severe pain, extend life for a short, but
    significant time period.

28
Care of the Terminally Ill
  • The physician should provide or arrange for
    emotional, physical, and spiritual support, and
    must be compassionate, unhurried, and open.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

29
TOTAL PAIN
The Portenoy Model
Neuropathic Mechanisms
Psychosocial Influences
Somatic or Visceral Nociceptive
Pain
Total PAIN
Social/Family Functioning
Psychological State Traits
Suffering
Loss of Work
Financial Concerns
Physical Disabilities
Fear of Death
Source Portanoy R., Practical aspects of pain
control in the patient with cancer. CA-A Journal
for Clinicians. 38332, 1998
30
Medicare Hospice Benefit
  • Hospice must provide the following services
  • Levels of care
  • Home, inpatient, continuous, respite
  • Nursing care
  • Medical care
  • in coordination with the primary MD
  • Certified nursing assistant care

31
Medicare Hospice Benefit
  • Hospice must provide the following services
  • Psychosocial care
  • Spiritual care
  • Bereavement counseling
  • All medications related to the terminal illness
  • Medical supplies and DME
  • Any consulting services (physician, PT, OT, etc.)
    as indicated in the plan of care

32
Care of the Terminally Ill
  • Physicians also must be prepared to deal with
    the feelings of guilt that almost invariably
    afflict the members of a family when parent or
    chld or spouse has died. They must be assured
    that everything possible has been done.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

33
Principles of Symptom Management
  • Maintain a problem solving approach Assess
    Reassess
  • Treat all symptoms,including psychosocial and
    spiritual, as prioritized by the patient and
    family
  • Consider invasive procedures for diagnosis or
    treatment when such procedures will have a direct
    positive impact on the symptom being treated.
  • Walsh TD Symptom control in patients with
    advanced cancer. Am J Hospice and Pall Care
    7(6)20, 1990.

34
Principles of Symptom Management
  • Anticipate events avoid symptoms if possible
  • Use pharmacological therapy wisely
  • Choose medications with care
  • Choose routes based on patient need
  • Choose reasonable starting doses and titrate
  • Use appropriate combinations
  • Avoid polypharmacy
  • Walsh TD Symptom control in patients with
    advanced cancer. Am J Hospice and Pall Care
    7(6)20, 1990.

35
Principles of Symptom Management
  • Meet the needs of the patient and family

36
Tube Feeding in Patients with Dementia A Review
of the Evidence
  • Review of published evidence regarding
  • BENEFITS of tube feedings
  • No reduction in aspiration pneumonia risk
  • No effect on clinical markers of nutrition
  • No improvement in patient survival
  • No improvement or prevention of decubitus ulcers
  • No reduction in infection risk
  • No improvement in functional status or slowing of
    decline
  • No improvement in patient comfort
  • Finucane TE, Christmas C, Travis K, JAMA
    2821365, 1999

37
Tube Feeding in Patients with Dementia A Review
of the Evidence
  • Review of published evidence regarding HARMFUL
    effects of tube feedings
  • Mortality
  • Perioperative mortality 6-24
  • 30 day mortality 2-27
  • 1 year mortality gt 50
  • Aspiration 0-66 Local infection 4-16
  • Occlusion 2-34 Leaking 13-20
  • 2/3 of NG tubes require replacement
  • Finucane TE, Christmas C, Travis K, JAMA
    2821365, 1999

38
Care of the Terminally Ill
  • There is no ironclad rule that the patient must
    be told everything, even if he or she is an
    adult and the head of a family. How much the
    patient is told will depend on the patients own
    desire and character, the wishes of the family,
    the state of the patients affairs, and perhaps
    religious convictions.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

39
Breaking Bad News
40
Care of the Terminally Ill
  • No problem is more distressing than that
    presented by the patient with an incurable
    disease, particularly when the death is imminent
    or inevitable.The physician must be prepared to
    deal with the expiatory attitude of the family
    when a member becomes gravely or hopelessly ill.
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.

41
Care of the Terminally Ill
  • Who is distressed?

42
Care of the Terminally Ill
  • Who is distressed?
  • The physician

43
Care of the Terminally Ill
  • Who is distressed?
  • The physician
  • Who thinks the patient is hopelessly ill?

44
Care of the Terminally Ill
  • Who is distressed?
  • The physician
  • Who thinks the patient is hopelessly ill?
  • The physician

45
Care of the Terminally Ill
  • Who is distressed?
  • The physician
  • Who thinks the patient is hopelessly ill?
  • The physician
  • How can the physician provide the patient with
    hope if s/he is distressed and thinks the patient
    is hopelessly ill?

46
Care of the Terminally Ill
  • HOPE Physicians Responsibility
  • End of Life Care
  • Goals of Care Symptom Management
  • Provide HOPE by setting achievable goals with
    patients and families while avoiding unrealistic
    expectations
  • Focus on symptoms and quality of life

47
Care of the Terminally Ill
  • One thing is certain It is not for you to don
    the black cap and, assuming the judicial
    function,take hope away from any patienthope
    that comes to us all.
  • Sir William Osler
  • Isselbacher KJ, Adams RD, Braunwald E, et al The
    Practice of Medicine. In Isselbacher KJ, Adams
    RD, Braunwald E, et al (eds) Harrisons
    Principles and Practice of Medicine, 9th edition.
    New York McGraw Hill, 1980.
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