Transcript Slide 1

EOL & Hospice Care
EOL & Hospice Care
James A Zachary MD
LSU Health Sciences Center
HIV Outpatient Clinic
December 13, 2004
EOL & Hospice Care
Hospice Care
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Multidisciplinary program devoted to
providing end-of-life care (6 months or less as
defined by Medicare)
Palliative & spiritual care for patient
 Psychological & spiritual support for family & friends
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Usually outpatient
 “Directed” by designated primary care
provider or hospice director
 Requires caretaker (or, assisted-living
situation, eg Belle Reeve, Lazarus House)
 Nursing home: payment problems?
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Hospice Care
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Most common diagnosis
 End
stage lung disease
 Congestive heart failure
 Dementia
 Amyotrophic lateral sclerosis
 Stroke
 Acquired immunodeficiency syndrome
(AIDS)
Hospice Care
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Pre-hospice integration into care model
 Treat to cure
 Overly aggressive and expensive
utilization of healthcare services
 Patients and family express
dissatisfaction with MD’s handling
of dying patient
Hospice Care
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Many physicians are uncomfortable taking care of dying
patients
The fact that there may be no curative interventions is
difficult to accept by some physicians
Patients and families may not be allowed to accept that
their disease is terminal
In the final days of life, many patients receiving
aggressive treatment may be denied the possibility of
preparing for death and suffer physically, emotionally,
and spiritually
Hospice Care
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The Hospice model attempts to bring
affirmation to the patient's life, while treating
the dying patient on an emotional, spiritual,
and physical level
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When a cure is no longer possible, the goal is
to keep the patient comfortable (palliation)
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Health care providers who do not have
adequate training or experience in palliative
care may exhibit inappropriate attitudes
toward the terminally ill, resulting in needless
suffering
Hospice Care
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Patients with poor symptom control not only have
their quality of life adversely affected but often
become socially isolated and withdrawn
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In the final days of life, terminally ill patients with
inadequate symptom control may miss the
opportunity to be surrounded by family and friends
and may not experience a peaceful and tranquil
death
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Hospice care picks up where curative therapy ends
allowing the provider to feel assured that they have
done their best throughout the patient’s life!
Growth of Hospice Care in US
Clinics in Office Practice
Volume 28 • Number 2 • June 2001
Growth of Hospice Care in US
Clinics in Office Practice
Volume 28 • Number 2 • June 2001
History of Hospice
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Saunders founded the first modern hospice
in England in 1967 (St Christopher’s)
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Team concept pioneered there
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Saunders introduced aggressive pain
management
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Saunders demonstrated that hospice care
could be effective administered in patient’s
home
History of Hospice
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Success of St Christopher’s opened up the door for
hospices to open in Europe and Canada
First American hospice was established in New Haven,
Connecticut, funded by the National Cancer Institute as a
national demonstration project for home care of the
terminally ill and their families
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The first hospices in the United States relied mostly
on grants and donations to serve the terminally ill and
at first were staffed entirely by professional and lay
volunteers.
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In 1982, Congress passed the Tax Equity and Fiscal
Responsibility Act, which authorized Medicare to
reimburse hospices for the care of the terminally ill who
met specific criteria.
Hospice Care
Designed for 6 months or less length
of stay per patient originally
 Average length of stay: 6 days
 Barriers to hospice referral

Poor knowledge of end-of-life prognostic
factors in the appropriate disease
process
 Academic institution’s almost exclusive
emphasis on diagnosis and cure
 Evolving medical science: (false?) hope
for cure
 Unwillingness to provide/accept hospice
referral
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Patients: fear of death, fear of pain,
cultural concerns
Family: loss of family member, loss of
monetary support
Hospice Care
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Providers poor referral rate to hospice
 Lack
of time
 Lack of experience, or training in
establishing and/or discussing prognosis
and hospice care
 Hard time “giving up”
 Poor understanding of the hospice concept
 Unfailing trust in the evolution of medical
science
Overcoming Barriers to Hospice
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Poor knowledge of end-of-life prognostic
factors in the appropriate disease process
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Study the relevant literature, or
Call in consultants with the appropriate
prognostic knowledge
Experience!
Academic institution’s emphasis on
diagnosis and cure
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Develop curricula devoted to end-of-life issues
 Psychological and spiritual issues
 Communication issues
 EOL mentoring by terminally-ill patients &
appropriate faculty
Encourage specialized End-of-Life care
programs
Overcoming Barriers to Hospice
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Unwillingness to provide/accept hospice
referral
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Patients: distrust of medical system, fear of death, fear of pain,
“go-stop” phenomena
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Proactive discussion initiated early in provider-patient relationship
Advanced directives
Assurances of aggressive palliative care
Spiritual well-being
Consistent approach to prognosis and care
Family: loss of family member, loss of monetary support
Involvement with provider-patient early on in disease process
 Advanced directives
 Spiritual well-being
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Providers: lack of time, experience, or training in discussing
prognosis and hospice care
Emphasize critical humanistic importance of these issues
 Encourage realistic communications at all times
 Specialized EOL teams to assist with all of the above
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MW
CD4 80
 Stage 4 adenoCa of lung with
mets to brain
 Other
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Cachectic
Odynophagia
N+V
Back pain: cervical & lumbar
Pleuritic chest pain
Hgb 6
Oral candidiasis
Constipation
Meds: fentanyl transdermal, oxycodone
liquid, no ARVs
TB
29 y/o female
 Cryptosporidiosis with probable cholangial
involvement
 End stage liver disease due to chronic hep B (INR
5.6)
 CD4= 3
 Other
 Multiple recent hospitalizations
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N + V, dehydration
Oral candidiasis
Chest pain
Depression
Family unaware of HIV dx (?)
JK
47 y/o male
 End stage lung disease/COPD on
home O2
 CD4 = 15
 Chronic inadherence (not seen in clinic x
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8 mos)
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Other
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Malnourished
Still smoking
Very frequent admissions for resp failure
Meds: no ARVs, MDIs, antibiotics
BS
43 y/o female
 Chronic rifampin-resistant TB
meningitis with paraplegia
 Unable to swallow
 Bed-bound
 Large decubitus ulcers with
osteomyelitis
 PEG tube for hydration & feeds
 Other
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HIV/AIDS
 No diverting colostomy
 Husband died of AIDS in last year
 Chronic pain
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Meds: oxycodone liquid, no ARVs,
anti-TB meds, fentanyl transdermal
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RL
39 y/o female
Severe AIDS dementia (unable to care for
herself)
Multiple recent admissions
Mod severe pruritic HIV dermatitis
CD4 12
No ARVs
Other
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Lives at Lazarus House
Spells/syncope/seizures
Small superficial decubitus
Cholestatic hepatitis
Recent S pyogenes bacteremia
EK
42 y/o male
 Malnourished
 Chemically dependent (cocaine/EtOH)
 CD4-depleted (CD4 52 in 5/2000)
 Multiple recent hospitalizations
 Other
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Lytic lumbar spine lesion
Proximal muscle weakness
Oral candidiasis
Homeless (living abandoned car)
Meds: no ARVs
Chronically inadherent
MW
39 y/o male
 Recurrent pneumocystis pneumonia
 Chronic chemical dependence (cocaine/EtOH)
 Chronic mental illness: psychosis vs schizotypal
 Homeless (Salvation Army)
 CD4-depleted (CD4 = 3 as of 3/2001)
 Multiple recent hospitalizations (recent AMA)
 Malnourished
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Other
Oral candidiasis
 Perianal HSV
 Neutropenia, granulocytopenia, anemia
 Hepatitis C
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Meds: suspect chronic inadherence to ARVs & PCP prophylaxis
AW
39 y/o woman with children
 CD4 = 10
 Steady downward course
 Multiple hospitalizations
 Poor functional status
 Chronic inadherence/intolerance to ARVs
 November 2001: TTP, malnutrition
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Z-Factors for AIDS Hospice
Rx
CD4-depletion
Steady trend toward decline: clinical and laboratory
 Multiple recent hospitalizations
 Multiple OIs: DMAC, CNS toxo
 Malnutrition/wasting
 Multiple life-threatening diagnoses
 Multiple symptoms usually including chronic pain
 Chronically poor functional status
 Chronically nonadherent*/intolerant/not on ARVs
 Chronic chemical dependence
 Poor support system?
 CNS lesions?
 Refractory oral/esophageal candidiasis
 Antiretroviral resistance?
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The Hospice Rx
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Plan session and discuss
terminal prognosis with patient
including
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Designated caretaker and as
many family members as possible
Primary Care provider
Social Services
Nursing
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PalCare representative ?
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The Hospice Rx
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Emphasize that Hospice
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is an “aggressive” form of
therapy appropriate with the
phase of life that the
patient has entered
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provides support for the
patient, their family & friends
both in life and in the
bereavement period
caters to the physical, mental
& spiritual sides of the patient
& their family
is a “prescription” appropriate
for this patient like a cast
would be for a broken arm,
antibiotics for a pneumonia,
etc.
The Hospice Rx
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Designate patient “Do Not Resuscitate” in
medical record
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A physician decision made in consultation with
another MD
Ethical responsibility to inform patient and family
Ask Social Services to initiate contact with
Hospice Agency
Designate hospice-care MD for this patient
Order suitable palliative care measures
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Standing orders?
Durable medical equipment: hospital bed, bed side
commode, wheelchair, etc.
Palliative medications: analgesics, anxiolytics,
antidepressants, antiemetics, hypnotics
The Hospice Rx: Problems
Avoid “stop-go”: get all providers on
the same page
 Patient/family refuses hospice
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Hope for the best!
Consider enlisting support of patient’s most trusted
confidantes
 PalCare consult
 Consider moderately aggressive care with Advanced
Directives specifying “DNR” (if patient improves,
collaborate with them on new Advanced Directives)
 As downward course continues, attempt hospice Rx
repeatedly
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Patient goes to hospital while on
hospice
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Discuss & confirm terminal prognosis with
care team
Optimized palliation in house
PalCare
Robert Woods Johnson grantee 1998
 Multidisciplinary
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Harlee Kutzen: PI, guru, palliative care/pain expert
Carole Pindaro: palliative care provider
Peter Drago: general workhorse, coordination,
communication facilitation, mental health provider
Jim Zachary: palliative care provider, hospice coordinator,
interest in addiction/pain control, website techie
Designed to bridge the gap between curative therapy
and hospice
Proven benefits to patients, providers, and system