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End of Life Issues in Cancer Care Are We Making Progress?


... (she had actually expressed such a preference) ... parallels the ethical principle of respect for autonomy 2) ... that there are limits to patient autonomy, ... – PowerPoint PPT presentation

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Title: End of Life Issues in Cancer Care Are We Making Progress?

End of Life Issues in Cancer Care Are We Making
  • Carol Taylor, RN, PhD
  • Georgetown University
  • Center for Clinical Bioethics

Are We Making Progress?
  • Terri Schiavo, the 41-year-old brain-damaged
    woman who became the centerpiece of a national
    right-to-die battle, died March 31, 2005, after a
    12 year court battle.

Are we making progress?
  • The America I know and love is not one in which
    my parents or my baby with Down Syndrome will
    have to stand in front of Obamas death panel
    so his bureaucrats can decide, based on a
    subjective judgment of their level of
    productivity in society, whether they are worthy
    of health care. Such a system is downright evil.

Are we making progress?
  • In a bulletin last month (July), the Department
    of Veterans Affairs recommended
  • Your life, your choices as a tool to help
    veterans with "advance care planning."
  • On "Fox News Sunday," H. James Towey,, said the
    guide seemed to encourage people to "hurry up and
  • (August 23, 2009)

The following clinical situations were recently
identified as creating the highest degree of
moral distress for critical care nurses
  • 1. Continuing to participate in care for
    hopelessly ill person who is being sustained on a
    ventilator, when no one will make a decision to
    pull the plug
  • 2. Following a familys wishes to continue life
    support even though it is not in the best
    interest of the patient
  • 3. Initiating extensive life-saving actions when
    I think it only prolongs death

  • 4. Following the familys wishes for the
    patients care when I do not agree with them but
    do so because the hospital administration fears a
  • 5. Carrying out the physicians orders for
    unnecessary tests and treatments for terminally
    ill patients Elpern, E.H., Covert, B.
    Cleinpell, R. (November 2005). Moral distress
    of staff nurses in a medical intensive care unit.
    American Journal of Critical Care, 14(6),

  • Letting Go
  • What should medicine do when it cant save your
  • by Atul Gawande
  • The New Yorker, August 2, 2010
  • http//www.newyorker.com/reporting/2010/08/02/1008

The Lady the reaper http//www.youtube.com/watch
Learning objectives
  • Compare and contrast four paradigms for death and
  • Relate how personal, professional, and societal
    beliefs concerning human life, dying and death
    influence the outcomes of health care decision
    making for the seriously ill and dying
  • Describe the recurrent and evolving ethical
    issues related to decision making for the
    seriously ill and dying

Reflection Questions
  • What does it mean to be finite--to be creature?
    Are there ways in which our efforts to control
    and master nature work against our innate dignity
    as humans?
  • 2. What does good care at the end-of-life look
    like? How can family and professional care
    givers respond to the holistic needs of dying
    persons? What does it mean to be a healing
    presence for the dying and their families?
  • pain and symptom management,
  • clear decision making, preparation for death,
    completion, contributing to others, and
  • affirmation of the whole person

  • 3. Do persons have the right to choose the time
    and manner of their dying? If you grant this
    right, are health care professionals and
    institutions obligated to meet all the requests
    patients make, so long as they are requests for
    legal interventions. Does the public (taxpayers)
    have an obligation to fund the services you
  • 4. Is reasonable to assume that once we grant the
    right to die this may evolve into a duty for some
    to die so that the resources they are consuming
    may be better allocated? Should government or
    some other body be granted the authority to
    determine who lives and who dies?
  • 5. In what concrete ways do individual beliefs,
    values and faith commitments influence our
    response to the above questions?

Death and Dying in the U.S. Four Paradigms
  • Death as a natural part of life
  • The "medicalization" of dying
  • 70 of Americans die in a hospital (39) or
    nursing home (31)
  • Hospice/Palliative Care
  • Death on Demand

The broader contexttrends in how where we
die, past present
  • At centurys turn
  • at home a family, communal, religious
    (non-medical) event
  • of accidents, infectious disease
  • By the 1970s
  • of heart disease, cancer, stroke
  • an institutional, professional, technological
    process -- in hospitals, i.e., the medicalization
    of dying

Assumptions Underlying Approaches to Death Dying
  • Life No longer a "mystery" to be contemplated
    but a "problem" to be solved
  • Importance of control/mastery
  • Absolutization of autonomy

State of the ScienceHow People Die in the U.S.
  • Half of conscious patients had moderate to
    severe pain at least ½ of time before death
  • 31 of patients did not wish to have CPR BUT
    physicians of more than half were NOT aware of
    DNR order preference
  • Nearly half of DNR orders were written within 2
    days of patient death
  • 40 of the patients spent at least 10 days in ICU

  • Poor symptom (e.g., pain) management
  • Inconsistent with patient preferences values
  • Problematic communication decision making
  • Life-prolonging, intensive treatments vs.
    palliative/hospice care

  • One in four people who died did not receive
    enough pain medication and sometimes received
    none at all. Inadequate pain management was 1.6
    times more likely to be a concern in a nursing
    home than with home hospice care.
  • One in two patients did not receive enough
    emotional support. This was 1.3 times more
    likely to be the case in an institution.
  • One in four respondents expressed concern over
    physician communication and treatment options.

  • Twenty-one percent complained that the dying
    person was not always treated with respect.
    Compared with a home setting this was 2.6 times
    higher in a nursing home and 3 times higher in a
  • One in three respondents said family members did
    not receive enough emotional support. This was
    about 1.5 times more likely to be the case in a
    nursing home or hospital than at home.

Finally, national standards/guidelines
  • National Consensus Project for Quality Palliative
    Care (2004). Clinical practice guidelines for
    quality palliative care. http
  • Promoting Excellence Seven End-of-Life Care
    Domains (RWJ)
  • National Quality Forum

Systemic Barriers to Appropriate End-of-Life Care
  • Lack of training for physicians, nurses, and
    other health professionals in techniques of
    palliative care, including pain and symptom
    management (EPEC, ELNEC)
  • Antiquated regulations that constrain the
    prescribing of narcotic pain medications
  • Misaligned incentives in health insurance
    benefits at the end-of-life
  • The cultural baggage of a death-denying culture

Critical milestones, ethical legal
  • Hippocrates on the limits of medicine the
    integrity of professional clinical judgment
  • Dame Cicely Saunders founds St. Christophers
    Hospice, 1967, while Luis Kutner proposes
    creation of living wills
  • Elizabeth Kubler-Rosss On Death and Dying What
    the Dying Have to Teach Doctors, Nurses, Clergy,
    and Their Own Families, 1969
  • First hospice in the U.S., 1974

Critical milestones, ethical legal
  • In re Quinlan, 1976
  • AMA policy withdrawal of life support to permit
    death euthanasia murder
  • right to privacy ? health care (Rx) decisions
    States interest in preserving life weakens
    individuals right to privacy grows as medical
    interventions become more invasive prognosis
    for recovery diminishes ... persons right to
    privacy can be asserted by a guardian when the
    person is incompetent
  • 1976 Natural Death Act passed by California
  • First state statute recognizing living wills

Critical milestones, ethical legal
  • Cruzan v. Director, Missouri Dept of Health, 1990
  • 1st Supreme Court decision to recognize right of
    dying patients to refuse treatment states can,
    but need not require clear convincing evidence
    of patients wishes before support can be
  • Also in 1990 Jack Kevorkian assists in death of
    Janet Adkins
  • Patient Self Determination Act, 1991
  • Federally funded health care facilities MUST
    inform patients of right to execute advance

Critical milestones, ethical legal
  • 1994 Oregon becomes the first state to pass
    referendum legalizing physician assisted suicide
    Washington, the next state, doesnt follow until
  • Compassion in Dying v. State of Washington and
    Quill v. Vaco, 1997
  • Supreme Courts unanimous finding no
    constitutional right to assisted suicide morally
    significant distinction between
  • refusing, withholding withdrawing treatment AND
  • assisted suicide
  • left the door open to the states

Decision making in the care of seriously or
terminally ill patients
  • Established practices
  • Voluntary, informed refusal of treatment by
    patients w/ capacity
  • Withholding and withdrawing treatment on behalf
    of incapacitated patients on basis of substituted
    judgment or best interests
  • Palliative and hospice care
  • Controversial issues
  • Voluntarily stopping eating and drinking
  • Palliative sedation (a.k.a. terminal sedation)
  • Assisted suicide and euthanasia
  • Patient/surrogate demands for futile Rx ? The
    troubled concept of futility

Continuum? Logical extension of respect for
autonomy/right to privacy arguments?
Voluntary, informed refusal
Withholding Withdrawing
Palliative Hospice Care
Assisted Suicide
Patient or surrogate demands for futile Rx
Continuum? Application of the clinicians duty of
compassion? Principles of beneficence or
Are there limits to patient autonomy/privacy? Is
there a point beyond which clinicians cannot or
should not go?
Fears Associated with Dying and Death
  • Fear of Losing Control
  • Fear of Not Being Allowed to Die or of Being
    Forced to Die Before One is Ready
  • Fear of Intractable Pain and Human Suffering

Fears Associated with Dying and Death
  • Fear of Becoming Increasingly Dependent
  • Fear of Loss of Human Dignity
  • Fear of an Endless Succession of Meaningless
    Days I have nothing to live for..
  • Economic Fears
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