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Open Access Hospice: America


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Title: Open Access Hospice: America

Open Access Hospice Americas End of Life
  • Carolyn Cassin
  • President CEO
  • Continuum Hospice Care
  • Jacob Perlow Hospice

  • Live as if you were going to die tomorrow. Learn
    as if you were going to live forever.
  • - Mahatma Ghandi

Somebody should tell us right from the start of
our lives that we are dying. Then we might live
life to the limit every minute of every day.
Whatever you want to do, do now. There are only
so many tomorrows. Pope Paul VI
Patients with Life-Threatening Illness Current
  • 90 of Americans die after living with one or
    more life-threatening illnesses
  • Most who die are elderlymedian age of death gt75
    yearsand population is aging
  • Most die in institutions

EOL Care Patient/Family Outcomes
  • Results
  • 67.1 of patients died in an institution
  • Of 519 home deaths
  • 198 (38.2) did not receive nursing services
  • 65 (12.5) had home nursing services
  • 256 (49.3) had home hospice services
  • Teno et al, JAMA, 2004

EOL Care Patient/Family Outcomes
  • About 1/4 described poor physician communication
  • About 1/4 with pain or breathlessness did not
    receive adequate treatment
  • Insufficient emotional support reported by
  • 1/3 of those cared for by a home health agency,
    nursing home, or hospital
  • 1/5 of those receiving home hospice services
  • Teno et al, JAMA,

EOL Care Patient/Family Outcomes
  • Not treated with respect
  • nursing homes 31.8
  • hospitals 20.4
  • Home hospice 3.8
  • Excellent family satisfaction
  • Only 50 of those in institutions
  • 70.7 receiving hospice
  • Teno et al, JAMA, 2004

Best Place to Die
Forbes Magazine 2004
  • States ranked by weighted average of the
  • 2001 CMS data on overall quality of health care
  • 2002 analysis from ABA Commission on Law and
    Aging evaluating overall quality of elder law
  • Cancer deaths in hospitals, in LTC or at home
  • Percentage of non-HMO Medicare patients receiving
    hospice care at end of life, 2000
  • Calculation of after-tax assets for an estate
    valued at 10 million, 2004.

Best Place to Die
Forbes Magazine 2004
  • Health Legal
    Cancer Deaths Hospice
    10 mil
  • Rank State care protection
    Hospital Nursing Home care
  • 1 Utah 5 B- 20
    20 63 25 5.9
  • 2 Oregon 11 B 21
    23 56 31 5.9
  • 3 Delaware 14 A 29
    21 52 24 5.9
  • 30 New York 24 B
    52 20 28 16
  • 49 Ohio 38 C 30
    31 36 27 5.1
  • 50 Illinois 46 A- 41
    24 37 25 5.1

End of Life Care in U.S.
  • Over 3,300 Hospice locations in the U.S.
  • 1.8 Millions persons die of a clinical terminal
    illness annually
  • 37 Patients in the U.S died with Hospice
  • 4 Billion in Hospice Expenditures - 2002
  • SUPPORT Study
  • Dartmouth Atlas Data

End of Life Care in NYC
  • Nearly 47,000 New Yorkers died of a terminal
    illness in 2007
  • Only 17 of them had hospice care.
  • 58 of those who did not have hospice died in
  • 98 of Americans describe their desire to die at
    home, surrounded by friends and family as their
    preference for end of life care.

Response to the Status Quo A National Problem
  • Patient Family want to be assured that
  • comfort will be a priority,
  • values and decisions will be respected,
  • psychosocial and spiritual needs will be
  • practical assistance will be available in the
  • help will be available to enhance coping with
    loss, and
  • the likelihood of closure and growth will be

Palliative Care
  • Should be considered a best practice during
    routine medical care
  • Should be available at a specialist-level for
    patients and families in need

Addressing Deficiencies in Palliative Care
  • Improve generalist-level palliative care
    throughout the health care system
  • Education Continuing
  • Systems change Quality improvement
  • Culture shift Community
  • Increase access to specialist-level palliative
  • Hospice
  • Hospital-based palliative care programs
  • Other models

  • A federal entitlement for gt20 years
  • Administered under Medicare Part A, with
    equivalent benefit under Medicaid
  • Similar benefits provided by most other insurers
  • Nationally
  • 4000 programs
  • gt1 million patients served
  • 12 billion industry

The Hospice Program
  • Not a place
  • A home care program with limited access to
    inpatient beds
  • Highly regulated managed care system with
    capitated reimbursements
  • A very robust set of services for patients and

The Hospice Program What are the Services?
  • Case management by an interdisciplinary team,
    including at least
  • Physician
  • Nurse
  • Social worker
  • Pastoral care provider
  • Access to volunteers
  • Access to home health aides
  • Access to other services (e.g., speech and

The Hospice Program What are the Services?
  • Access to inpatient level of care for acute
    problems, family respite, or to care for the
    imminently dying patient
  • Access to period of continuous nursing care at
  • Bereavement services for 13 months after the
    death at no cost

The Hospice Program What are the Services?
  • All tests and treatments At no
  • All drugs cost
  • Durable medical equipment if
  • Medical supplies related
  • to
  • terminal
  • diagnosis

Open Access
  • A new model of hospice
  • Goal is to mainstream hospice care into current
    systems of care
  • No limits to hospice eligibility except as
    defined by law
  • Certification of prognosis
  • Informed consent and election of the benefit

Open Access Hospice A New Model
  • Hospice supports and pays for disease-modifying
    therapies if they are appropriate and do not
    change eligibility
  • No need to accept death or acknowledge dying
  • No need to be DNR

Open Access Hospice A New Model
  • That allows American to come terms with the
    ambivalence we have about dying

The Benefits of Hospice Not Fully Realized
  • Late referral or no referral because
  • Discomfort about acknowledging advanced disease,
    terminal illness, the reality of foreseeable
  • Lacking the facts Uncertainty about the nature
    of the Hospice as giving up
  • Conflicting incentives abound in the American
    Health Care System
  • Hospices themselves

Hospice Myths
  • This patient is not Hospice appropriatenot
    close to dying
  • Eligibility is a prognosis of six months if the
    disease runs its expected course
  • Physicians usually overestimate prognosis
  • There are published guidelines and hospice staff
    can provide direction

Hospice Myths
  • The family and patient arent ready to hear
    about hospice...
  • Hospice is not about dying its about services
  • Eligibility does not require readiness to die
  • Patient or surrogate must acknowledge only that
    the disease is terminal and that the benefit
    can continue only if a physician certifies that
    the prognosis is limited

Hospice Myths
  • The patient must have a DNR to be eligible for
  • Not True!
  • The patient must have a 24 hour responsible
  • Not True!

Hospice Myths
  • Theres no point to hospice because the patient
    is imminently dying, already in coma
  • The patient cannot benefit, but the family is
    eligible for 13 months of bereavement support at
    no cost

Hospice Myths
  • If I refer my patient to Hospice, I must give up
    providing care for my patient
  • Not true!
  • The patient doesnt want to give up his regular
  • The patient does not have to give up any physician

Hospice Myths
  • Hospice isnt appropriate because
  • ...the patient still wants active treatment.
  • the patient doesnt want just palliative
  • the patient wont give up hope.
  • we can still treat the disease.

Hospice Myths
  • With Open Access Hospice
  • Hospice services are integrated with disease
  • Any treatment may be acceptable if it does not
    change hospice eligibility

A Vision for the Future
  • Humane, dignified and loving care for all
    patients at end of life
  • A peaceful ending to a life well lived

What Can You Do To Help?
  • Get involved in end of life care in your
  • Champion Open Access Hospice

Do not seek death. Death will find you. But
seek the road which makes death a fulfillment. -
Dag Hammarskjöld