EndofLife Care

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End-of-Life Care

• Responding to the Needs of People We Serve and
  Their Families
• Kaleidoscope of Care
• Alzheimer Society Saskatchewan
• Sept 30, 2009
• Jim Walls, MSW,RSW

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End of Life

• A dying man needs to die, as a sleepy man needs
  to sleep,
• and there comes a time when it is wrong, as well
  as useless, to resist.
• Stewart Alsop

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Quality Care

• In 2005 the USA Alzheimer Association began a
  series on care for persons with dementia in
  assisted living and nursing homes.
• The series covered many aspects of care and made
  recommendations in each area.
• www.alz.org

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Quality End of Life Care

• By 2007 the series had published recommendations
  on end of life care practices.
• The research team went to experts in practice and
  service delivery, academics and researchers in
  the field.
• Did they forget anyone?

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Questions Asked ...

• What are the key elements of quality end of life
  care for people with dementia living in assisted
  living and nursing homes?
• What are the key elements for families?
• What are the public policy barriers to quality
  care?
• Tilly Fok (2007)

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Results

• Overwhelmingly, the most important issues for
  the majority of experts are communication and
  decision making about care.
• Tilly Fok (2007)

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Issues Around Modern Death

• All too often contemporary dying is accompanied
  by
• limited patient and family understanding of the
  medical care being provided,
• Poor communication with the medical team
• Unrelieved physical pain, and
• Psychospiritual suffering.
• Bera-Klug et al 2001

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End-of-life Changes in 20th Century

• Death from Chronic Conditions
• In 1900 the leading causes of death were
  pneumonia, tuberculosis and diarrhea.
• Most deaths were associated with acute infectious
  conditions.
• A person was sick for a few days or weeks, and he
  either got better or died.

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End-of-life Changes in 20th Century

• The current leading causes of death are heart
  disease, malignant neoplasms, and cerebrovascular
  accidents.
• They are chronic conditions, often associated
  with aging.
• They account for nearly 2/3 of all deaths.

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End-of-life Changes in 20th Century

• Death Postponed
• In 1900 30 of deaths occurred in children under
  the age of 10.
• Another 30 occurred in adults over the age of 60
• Now, 1 of deaths occurs in children under 10,
  and fully 80 in those over 60, (and 40 of all
  death in those over 80 years)

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End-of-life Changes in 20th Century

• Medical Technology
• In 1900 the role of physicians and the family
  were limited to providing comfort and being
  present.
• Now there are protocols and tools to rescue the
  seriously ill and dying such as CPR,
  ventilators, transplants, dialysis and open-heart
  surgery.

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End-of-life Changes in 20th Century

• Medical Technology
• Many caregivers and families have come to believe
  they are morally obligated to invoke all the
  interventions at their disposal.
• It may be considered better to do something
  than to do nothing even if that something is
  known to have no benefit.
• Bern-Klug et al (2001)

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The Pressure to Act

• Research indicates families are uncomfortable
  with the possibility of being responsible for a
  death because they failed to use available
  medical interventions.
• This may also be true for many care providers.
• When people have clearly reached their own
  personal end-of-life, they may be subjected to
  painful, invasive and futile treatment because
  family and care providers wanted the best for
  them.

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What Matters to the Person?

• Canadian research published February 2006
  indicates
• Trust and confidence in doctors
• Not to be kept alive when there is no hope of
  recovery
• Information about disease be communicated in an
  honest manner
• To complete things and prepare for lifes end

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What Matters to Patients?

• Not to be a physical or emotional burden on
  family
• An adequate plan for care if going home
• Symptom relief (pain, shortness of breath,
  nausea, etc)
• To know which doctor is in charge of their care

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What Matters to Patients?

• That the doctors discuss concerns with family
  members
• To have an opportunity to strengthen and maintain
  relationships
• The doctor is available to discuss their illness
  and answer questions in a way they understand
• (there are 28 in all)
• Heyland et al (2006)

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What Matters to Families?

• To have trust and confidence in doctors
• Not to have family member kept alive on life
  support when there is no hope for meaningful
  recovery
• Information communicated by doctor honestly
• An adequate plan of care if discharged

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What Matters to Families?

• Relief of family members physical symptoms
• Opportunity to strengthen and maintain
  relationship with the person
• Information needed will be readily available to
  those treating him or her
• To complete things, resolve conflicts, and say
  good bye

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What Matters to Families?

• To receive adequate information, (risks and
  benefits of treatment)
• Trust and confidence in nurses
• Doctor available to discuss in a way that can be
  understood
• To know which doctor is mainly in charge of care
• Heyland et al (2006)

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What Matters to Caregivers?

• Our Codes of Ethics, generally drawn from the
  Hippocratic Oath, say care providers will
• Do Good (Beneficence)
• Do No Harm (Nonmalificence)

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What Matters to Caregivers?

• In addition, care providers will
• Respect Individuals Right to Autonomy, and
• Treat people Fairly and with Equity.

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What Matters to Caregivers?

• Generally speaking, care providers are more
  comfortable doing something.
• Their training, and the expectation of others
  (individuals and institutions), directs them
  toward activity.
• They may be guided by policies and protocols that
  may be institution centered rather than person
  centered.

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Barriers to Quality Care

• A poor understanding of the importance of end of
  life care
• May lead to instituting end of life care too late
  to be most effective
• There may be funding barriers, BUT they should
  not be an excuse not to think and act creatively
  to improve care

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Barriers to Quality Care

• Pain control has been hampered by the mistaken
  fear of addition to medication and to exaggerated
  adverse effects of treatments
• A balance between symptom relief and ability to
  function needs to be found. Many analgesics can
  cause drowsiness or confusion.

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Barriers to Quality Care

• For persons with dementia, the ability to
  communicate effectively with the person can be a
  barrier
• We may focus on what has been lost, rather than
  what remains
• The challenge is ours to understand language and
  behaviour which may be symbolic

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Implications for Care

• Finding a way around truth-telling
• Avoidance of patients and families
• Less, and incomplete communication
• Confusion (anxiety) for the person
• Uncertainty for care providers
• Not enough support for care givers

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Check Out What We Think

• How do we view death?
• What are our values what do we believe?
• What is our personal experience? Does it have
  something to do with this?
• Do we have a bias? Does it affect how we act?

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What Can We Do?

• Explore our own values and examine how they
  impact our behavior
• Learn more about what people in care want
• Understand the dynamics of loss
• Remember that everyone is different, and
  individuals, even among families, may react in a
  different way

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What Can We Do?

• Learn about different cultural responses to death
  and dying
• Recognize roadblocks to effective communication
• Build effective teams, and include whoever you
  can. (Teams require work)
• Establish and nurture relationships of trust and
  support

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Goals for Quality End of Life Care

• care that allows persons to die with
  dignity, free of pain, surrounded by their loved
  ones, in a setting of their choice. Stone
  (2001)
• We have the means to reduce physical pain and
  suffering.
• We also have the means to reduce psychosocial
  pain and suffering.

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One of Our Goals

• In 1900, the central role of care providers and
  supporters was to provide comfort and be present.
• In 2009, we should still do both.

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References

• Bern-Klug, M., Gessert, C., Forbes, S., (2001)
  The need to revise assumptions about end of life
  implications for social work. Health and Social
  Work 26, 38-47.
• Heyland, D.K. et al (2006) What matters most in
  end-of-life care perceptions of seriously ill
  patients and their family members. Canadian
  Medical Association Journal. 174(5)

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References

• ________ (1999) Gaps in end of life care.
  Education for Physicians on End of Life Care.
  Robert Wood Foundation
• Stone, M.J., (2001) Goals of care at the end of
  life. CME Course Baylor University Medical
  Centre

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References

• Tilly, J Fok, A. (2007) Quality end of life
  care for individuals with dementia in assisted
  living and nursing homes and public policy
  barriers to delivering this care. Alzheimer
  Association, (USA) www.alz.org

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Contact Information

• Jim Walls, MSW,RSW
• Director of Social Work
• Prairie North Health Region
• Box 69
• Battleford, SK
• S9A 0R1
• jim.walls_at_pnrha.ca