Supporting FW Families as they confront death and dying by zhangyun


									Tina Castañares, MD
Medical Director, Hospice of The Gorge, Hood River & The Dalles, Oregon
Family Physician, La Clínica del Cariño, Hood River & The Dalles, Oregon

   20th Annual Midwest Stream Farmworker Health
              Austin, Texas            November 20, 2010
   Three important TRUTHS

• We will all die.

• Dying is as natural as being born.

• There is such a thing as a Good
  Death, and it is worth planning for.
     Some unfortunate myths

• Death is a failure of the health care system.
• There’s really no good way to predict when a
     person will die, and no reason to try.
• Having a doctor immediately available will
     make it likelier you won’t suffer at the end.
• Discussing death frankly can make it happen
     sooner and is always “bad news.” It’s better
     not to know that you have a fatal illness.
• “Doing every treatment possible” is what we
     owe to our loved ones before we “give up.”
   So let’s remember those three
    important TRUTHS again:

• We will all die.

• Dying is as natural as being born.

• There is such a thing as a Good
  Death, and it is worth planning for.
     Main emphasis today:

•For MSFWS : special challenges around
    death and dying
•What hospice and palliative care can
   offer, and what barriers exist
•Migrant health centers and community
   health workers help bridge the gaps
    Especially for clinicians:
Symptom management and referral
strategies to:
•Prognosticate better (estimate life
    expectancy) and anticipate problems
• Provide comfort
•Prevent or treat suffering
•Avoid unwanted hospitalizations and
    crises at the end of life
   Challenges around death and
    dying for FWs & families:
     Common to most human beings:
•Sickness, fear and suffering
•Mortality and loss

        Special for migrant people:
•Displacement from homeland
•Separation from loved ones
•Cultural dislocation from known rituals and
   Challenges around death and
    dying for FWs & families:

     Accentuated in FW populations:
•Uninsurance, poverty, lack of access, lack of
    health care home, linguistic and
    educational barriers
• delayed detection, diagnosis, & treatment
• disparities, inequities, injustice
    associated with premature disability &
   Challenges around death and
    dying for FWs & families:
     Accentuated in immigrant populations:
•All of the above, plus fear of seeking
     treatment (deportation/legalization fears, etc.)

•Lack of insurance far higher than in non-
    immigrant farmworkers

•Cultural beliefs and practices – assets and
   Challenges around death and
    dying for FWs & families:

Especially accentuated in immigrant ELDERLY
The nation’s uninsured elderly:
    422,000 seniors 65+ y/o were uninsured in 1999
           (=1.3% of the US elderly)
    disproportionately seniors of color (36%)
    >45% were born outside the US
       The national forecast…

   Legal immigrants account for almost 1/2
    net annual increase in US population.
   Most will hit Medicare age just after baby
    boomers, and become eligible 5+ years
    after legal entry.
 (But what if they need our care sooner? And
what about the “non-qualified” who may never
                 be eligible?)
 And more immigrant seniors may
     be uninsured in future:

In California, 2000…trends appearing?
   2% of elderly were uninsured. BUT….
   Rates exceeded 5% in 7 of 80 assembly
    districts and 3 of 26 senate districts.
   Some districts had as high as 8%
    uninsured among their elderly.
 Let’s return to the subject of
questions of cultural assets and
      potential barriers…
  Cultural beliefs and practices,
      assets and obstacles:
       Typical assets and strengths

•Spiritual faith
•Family support & caregiving
•Culture of caring for elders
•Generally positive grief and
    bereavement, perhaps from culture
    of “keeping ancestors alive”
•resignación, fatalism
  Cultural beliefs and practices,
      assets and obstacles:
   Typical obstacles or challenges in USA:

•Fear of vs. undue faith in hospitals
•Religious beliefs: suffering as punishment
•Differences from U.S.“mainstream” about
    who makes health care decisions, who
    should even know diagnosis or
    prognosis, or speak openly of dying
•Stoicism about symptoms, expressing pain
•Reluctance to allow strangers in the home
            Social realities
•Most FWs who die from chronic illness die
    in hospitals, in medical crisis, attended
    by specialists, bewildering technologies
    and English-speaking staff.
•Probably most MSFW patients & families
    would prefer a peaceful death at home.
• The hospice and palliative care movements
    have scarcely begun to serve minority
    citizens, and are a long way from serving
    Latino and immigrant MSFWs.
  Some realities = opportunities
•The hospice and palliative care movements
    are growing due to the “graying of
•These movements earnestly wish to become
    more culturally proficient, and diverse.
• Most hospice and palliative care
    organizations don’t yet have
    partnerships or much involvement with
    clinics, M/CHCs, or other community
             CASE STUDY
•María A, 66 y/o retired SFW in rural Idaho,
     uninsured (but actually Medicare-eligible)
•1 year of increasing GI distress, mixed sx
•Positive stool test for blood @ dr’s office
•Charity care colonoscopy obtained, labs,
•Advanced colorectal cancer (Stage IV) with
     distant spread
•Prognosis (estimated life expectancy) 5-6
       One way it could go…
•Husband says not to tell her. “We will come
     back for medicines.” “I will take care of
     her at home.”
• Pain insufficiently treated. Pt suffers at
     home. Family and pt do not discuss
     facts and future. No return to dr’s office.
•Elderly husband overwhelmed when pt
     develops intestinal obstruction.
• E.R., N-G tube, IVs, ICU admission twice).
•On 2nd hospital admission, pt dies in ICU.
   A different way it could go…
•Linguistically/culturally appropriate care at
    M/CHC (pt’s medical home) includes
    education, sx control & case
•Hospice referral made, explained; accepted.
•Spanish-language support facilitated,
    coordinated in partnership of agencies.
•Physical suffering largely prevented.
    Family support, spiritual support….
   A different way it could go…
•… Medication provided for obstruction
     when it develops (no tubes).
•Hospice social worker assists with funeral
     arrangements, Medicare eligibility
     determination, other planning.
•Pt dies quietly with good pain control four
     months after dx, at home, family present,
     priest had visited.
•Hospice personnel assist bereaved husband
     & family for > 1 year.
    What is “palliative care”?

•Comfort care, symptom management,
   supportive services.
•Distinct from curative care, chronic
    disease management, acute care or
    preventive care
•Goals of care are different than in most
   of health care and public health.
      Some common examples of
            palliative care

•Alleviation & prevention of physical pain
    and other sx (nausea, constipation) with
    combinations of potent medicines
•Supplies and equipment for home comfort
•Education of pt and family for energy
    conservation, maximum quality of life
•“respite” time for caregivers
•Spiritual care and support
    Who does “palliative care”?

•A growing movement
•But not yet taught very much in health
    professional training programs
•Strongest group of providers are hospices
•Some RNs, doctors & others now specialize
•Some programs (inc. pre-hospice), though
    funding is not generally available
  What is “hospice” in the USA?

•Mostly home-based service (inc.
   nursing homes, etc.) – few “hospice
   houses” except in large cities
•Serves people with <6 months life
    expectancy, and their caregivers/
•Holistic, palliative care delivered by
 What does a hospice team consist of?

•Nurses, doctors, social workers,
   chaplains, bereavement counselors,
   volunteers, home health aides,
   homemakers, primary care
   providers, pharmacists…and the pt!
•Each patient’s plan of care reviewed by
    the team at least once every 2 weeks
     How are hospices funded?
•Mostly by Medicare
•Other insurance (inc. Medicaid) copies
•Community donations
•Per diem (per day) paid by insurer to hospice
     agency, to cover all services related to the
     terminal diagnosis

•Very regulated (certification, etc) but
no involvement with immigration status!
      The hospice movement and
     diversity/cultural proficiency
•Striving, but still mostly Anglo, Eng-
     speaking workforce serving Eng-
     speaking Anglo pts
•Future of its workforce in West = Latino
•Unaccustomed to uninsurance, immigration
•Often unfamiliar with agencies serving
    special populations
 Why should all this matter to FWs?

•MSFWs unlikely to be acquainted with
   palliative care and hospice
•MSFWs may face access barriers
•MSFWs’ health care homes may not yet
   be partnered with area hospices
•Area hospices may be hard pressed to
   serve uninsured pts (but may not be☺)
      What can we do to help?
•M/CHCs and primary care providers
**   educate pts, families and caregivers
**   help with prognosis, discussions, advance
     directives, durable POA, POLST forms
**   ensure care coordination (don’t let
     specialists take over)
**   work with area hospices & palliative care
     organizations pro-actively
      Partnering pro-actively
•Staff and leaders: meet together
•Community needs assessment
•Community outreach
•Grantseeking for programmatic work
   and “charity care”
•Cultural proficiency expertise
  Community health workers and
  the hospice movement’s future

• A natural fit with America’s
    changing demographic
• A natural fit with health promotion,
    advocacy, care coordination,
    outreach, community needs
    assessment, capacitation of
    agency staff
One hospice agency’s experience:

• 1981-2006: served one Spanish-
  speaking family
• Area approx. 25-30% now, mostly 1st
  generation immigrants and their
  native-born children.
• United Way grant project started in
  Two CHWS hired part-time:

• First stage = capacitation of CHWs
• Second stage = community needs
  assessment (survey, other) by CHWs
• Second stage = preliminary outreach!
• Third stage = development of
  language, approach, materials
• Fourth stage = contractor for analysis,
  recommendations for future
  Outcomes and current activities:

• development of Hispanic Outreach Team
• beginning of development of bilingual
     staff response capability
• Events outreach continuing
• 2006-2010: Fourteen patients and families
     served with hospice care; six with pre-
     hospice or non-hospice palliative care
    Tips & pearls from the palliative
               care field

• Give aggressive, pro-active pain and symptom
     management without fear.
• Keep it simple: opiates (methadone, morphine
     sulfate) following the WHO pain management
     ladder; benzodiazepines for anxiety/agitation/
     insomnia; prochlorperazine & haloperidol for
     nausea; aggressive bowel regimen
• Be aware of methadone’s superiority, and
     educated/respectful of careful rotation and
• Beware of fentanyl, combination drugs, proprietary
   Tips & pearls from the palliative
         care field, continued
• Skin breakdown may be inevitable.
• Decubitus ulcers may never heal.
• When people don’t eat or drink as they die,
     they’re not thirsty or hungry…don’t
     give IV fluids, etc.
• Before considering more procedures,
     consider the burdens…and compare to
     Rx options.
   Tips & pearls from the palliative
         care field, continued
• Dexamethasone (etc.) has multiple benefits – for
     nausea, well being, appetite stimulation,
     energy, pain management (capsular, bone,
     other). Careful in CHF.
• Octreotide (Sandostatin™) = “medical NG tube”
     in intestinal obstruction.
• Transfusions, thoracentesis, paracentesis…all
     have diminishing returns.
• Palliative radiation, nerve blocks, etc. useful but
     with risks, rebound, time issues…
    Tips & pearls from the palliative
          care field, continued

• Pay attention also to the health status of
     caregivers and survivors.
• TEAMWORK! Much suffering is existential/
     spiritual, not “medical.”
• Prognostication is ethically and intellectually
• Quality of life trumps length for most pts.
• Translate hope… hope for ….???
              Why prognosticate?
• Medical ethics and everyday ethics
• Patient self-determination
• Telling the truth, sharing our knowledge
• Optimizing QUALITY OF LIFE during one’s remaining
• Determination of hospice eligibility (initial/recertification)
• Planning for the future
    Financially (wouldn’t you?) and legally
    Grieving process
    Advance Directives, Health Care Representatives, POLST
                 But we’re not doing it enough.
                         One example:
• 326 cancer pts admitted to Chicago hospices; 311
  desired survival estimate (px); physicians
  calculated px in 300 of them

• Physicians reported that they would not
  communicate any px in 27% of cases, would
  communicate their px in 37%, and would
  communicate a different px 40% of the time (70%
  optimistically discrepant, mostly in young)

• I.E., no estimate + conscious underestimate or
  conscious overestimate = 63% of the time
--Ann Int Med 2001: 134: 1096-1105 Lamont & Christakis
       Why don’t we prognosticate more?
•   Our own discomfort broaching subject of death
•   Fear of erring in either direction
•   Uncertainty about the patient’s wish to know
•   Cultural, linguistic differences
•   Bad experiences in the past (“He told her 10 years ago she
    had 2 months to live.”)
•   Insufficient knowledge or skill at it
•   Not enough time for the conversation
•   We think it’s ambiguous, uncertain, indeterminate – not
         that clear at all
•   “Everybody’s so different; who am I to say?”
•   “It’s not up to me; the specialist needs to tell them”
Why don’t we prognosticate more?

• “I don’t want to take away
  their hope.”

• “I don’t want it to be a
  self-fulfilling prophecy.”

• “I don’t want them to feel
  I’m abandoning them.”
           Regarding hope:
• Hope is relative
• Different kinds of hope:
     *    hope for cure
     *    hope for symptom relief and
     *    hope for reaching benchmarks
     *    hope for improved quality of life
     *    hope for resolution/reconciliation
     *    hope for spiritual growth, peace
We are
by nature
              Units of time

• “Days to weeks,” “weeks to months,” “a
    year or more,” etc.  much better than
     nothing, though often not good enough
• Example: 75 y/o former FW dying in Moses
     Lake, WA of metastatic colon CA.
     Ambulatory but declining. Pain and
     nausea increasing. Son wants to come from
     Mexico, with only 2 weeks he can be here.
     Which 2 weeks will it be?
  How to prognosticate better

• a topic of its own
• many tools for clinicians, free & on-line
• It’s a matter of deciding to sharpen our
      skills (the science and art) to do it.
• Write to me and I’ll share more.
• A clinical topic for next forum?
   If you can read just one elective
professional book this year, consider:

                   And use this resource:

                   from Family Practice
                   “Discussing End-of-Life Care
                   With Your Patients”
                   Posted 08/20/2008
                   Jerry L. Old, MD
         Caregiver health

• http://www.ama-

• 16% overall report worse health
• >50% of Alzheimers caregivers report
    psychological distress
• 40% have new financial burdens
   Three important TRUTHS

• We will all die.

• Dying is as natural as being born.

• There is such a thing as a Good
  Death, and it is worth planning for.
 for participating today.
I welcome your feedback.
   Tina Castañares, MD
     3301 Kollas Road
Hood River, Oregon 97031

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