Presentation 202 jennifer kennedy hospice and pallative care for a patient with als_what does it look like

HOSPICE AND PALLIATIVE CARE
FOR A PATIENT WITH ALS: WHAT
DOES IT LOOK LIKE?
Jennifer Kennedy, MA, BSN, CHC
National Hospice and Palliative Care Organization
The ALS Association 2014 Clinical Conference

Session Objectives
• The learner will understand the basics and
benefits of palliative and hospice care as it
applies to patient with ALS.
• The learner will identify the clinical guidelines for
hospice eligibility for a patient with ALS who has
the Medicare Hospice Benefit.
• The learner will be able to locate resources
related to palliative and hospice care for a patient
with ALS.
© National Hospice and Palliative Care Organization, 2014
2

Moments of Life Made Possible by
Hospice
• The “Moments of Life” awareness campaign
features stories from hospices across the United
States of patients and families experiencing
hospice care first hand.
3

ALS Data
• There is no cure.
• A new person is diagnosed with ALS in the US
every 90 minutes ( ALS Therapy Development
Institute).
• The average life expectancy after diagnosis is 2
to 5 years.
• Approximately 10% of all people with ALS live
more than 10 years.
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ALS End of Life Data
5
NHPCO National Data Set, 2012

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PALLIATIVE CARE
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End of Life Care Continuum
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EPEC Project, 1999

Palliative Care
• Palliative care means patient and family-centered
care that optimizes quality of life by anticipating,
preventing, and treating suffering.
• Palliative care throughout the continuum of illness
involves addressing physical, intellectual,
emotional, social, and spiritual needs and to
facilitate patient autonomy, access to information,
and choice.
10

Palliative Care
• The following features characterize palliative
care philosophy and delivery:
• Care is provided and services are coordinated by an
interdisciplinary team;
• Patients, families, palliative and non-palliative health
care providers collaborate and communicate about care
needs;
• Services are available concurrently with or independent
of curative or life-prolonging care;
• Patient and family hopes for peace and dignity are
supported throughout the course of illness, during the
dying process, and after death.
11

Palliative Care as an Option
• Palliative care (PC) focuses on symptom/pain
control versus aggressive curative treatment.
• PC offers medical, spiritual and emotional
services as well as support to meet each patient's
individualized needs.
• PC integrates family input on care issues:
• I.e.: obtaining specialized equipment, securing
appropriate physical and occupational therapy…
12

Palliative Care as an Option
• PC helps the patient and their family better
understand treatment options, allowing them to
have more control over their care.
• The PC team patients and their families address
coping skills, anxiety, use of assistive devices,
necessary support services, and decisions about
end-of-life issues.
13

Where is Palliative Care Provided?
• Inpatient facility
• Hospital
• Long term care???
• Outpatient facility
• Patient’s home
• Private residence
• Assisted living facility
• Wherever the patient calls home
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Palliative Care - Medicare Coverage
• Medicare Part A does not have a dedicated
palliative care benefit like the hospice benefit.
• Hospitals can bill for PC under Part A and B.
• Hospices can bill Part B for physician services.
• Home health care agencies can provide palliative
care and bill Medicare under Part A for services
that could include nursing, social work, and
spiritual care visits.
• Delivery of these services is provider specific.
15

Palliative Care - Medicare Coverage
• Hospices can provide physician services though
Part B.
• Part B may cover some services also covers
equipment and supplies that are considered
medically necessary to treat a disease or
condition.
16

Palliative Care - Medicaid Coverage
• May cover some palliative care treatments and
medications, including visits from doctors.
• Varies state by state
• Medicaid does not use the term palliative, so
coverage is provided by standard Medicaid
benefits.
• There may be copays for the patient.
17

Palliative Care – Private insurance,
HMOs, managed care programs
• Many private health insurance plans provide
some coverage for palliative care as part of their
hospice or chronic care benefits.
• Long-term care policies may also include
palliative care benefits.
18

Private Pay
• Hospice providers offer private pay palliative care
services consisting of:
• Nursing services
• Social work services
• Spiritual care services
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Barriers to Referral
• Physicians and other clinicians don’t know what
hospice care is or its benefit to the patient and
family.
• Clinicians may be reluctant or unskilled in
initiating discussions regarding the initiation of
comfort care approach.
20

HOSPICE CARE
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Hospice and palliative care
22
EPEC Project, 1999

Hospice Care
• Hospice Care is the model of high-quality,
compassionate care that helps patients and families
live as fully as possible.
• Last 6-months of life; terminal illness certified by a physician
• Interdisciplinary team treats the patient and family as the
unit of care
• Provides pain and symptom management for patient and
emotional, psychosocial support to patient and family.
• Focuses on quality of life
• Prepares the patient and family for death and bereavement
23

Hospice versus Palliative Care
• All hospice care is palliative, but not all palliative
care is hospice.
• Palliative care programs address the needs and
expectations of a patient with a life-threatening
illness, at any time during that illness, even if life
expectancy extends to years.
• Palliative care does not preclude aggressive
treatment of an illness, and provides comfort to
patients and their loved ones.
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Hospice Care Coverage – Medicare
Hospice Benefit
Hospice Services Provided in Per
Day Coverage
Coverage
• Routine Home Care
• 24/7 access to physician and nursing
services
• General Inpatient Care
• Continuous Home Care
• Inpatient Respite Care
100% coverage
Patient pays 5% of the Medicare
payment amount
for inpatient respite care
Medications related to terminal illness Patient pays no more than $5 for
pain relief and symptom control
medications
Equipment/ supplies related to terminal
illness
100% coverage
Bereavement services for 1 year after
patient death
Complementary
25

Hospice Care Coverage – Medicaid
Hospice Benefit
Day Coverage
Coverage
• 24/7 access to physician and nursing
services
100% coverage
Patient pays 5% of the Medicare
payment amount
for inpatient respite care
Medications related to terminal illness Patient pays no more than $5 for
pain relief and symptom control
medications
illness
100% coverage
patient death
Complementary
26

Hospice Care Coverage – Commercial
Insurance
Day Coverage
Coverage
Depends on plan coverage
Medications related to terminal illness Depends on plan coverage
illness
patient death
27

Medicare Criteria for Hospice Referral
• Physician certifies the patient as having a
6-month of less prognosis if the disease runs
its normal course.
• Patient is eligible for Medicare Part A.
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1. Decline in clinical status guidelines
• Progression of disease as documented by worsening
clinical status, symptoms, signs and laboratory results.
• Physiologic impairment of functional status as
demonstrated by Karnofsky Performance Status (KPS)
or Palliative Performance Score (PPS) <70%.
• Increasing emergency room visits, hospitalizations, or
physician’s visits related to hospice primary diagnosis
29

2. Non-disease specific baseline guidelines.
• Two factors are critical in determining prognosis
in end stage ALS:
• Ability to breathe
• Ability to swallow
• The decision to institute either artificial ventilation
or artificial feeding will significantly alter six month
prognosis.
30

2. ALS specific baseline guidelines.
• Critically impaired breathing capacity.
• Vital capacity (VC) less than 30% of normal (if available);
• Dyspnea at rest
• Patient should demonstrate both rapid progression of
ALS and critical nutritional impairment.
• Progression from independent ambulation to wheelchair to bed bound
status.
• Progression from normal to pureed diet.
31

2. ALS specific baseline guidelines.
• Patient should demonstrate both rapid progression of
ALS and life-threatening complications.
• Recurrent aspiration pneumonia (with or without tube feedings);
• Upper urinary tract infection, e.g., pyelonephritis;
• Sepsis;
• Recurrent fever after antibiotic therapy;
• Stage 3 or 4 decubitus ulcer(s).
32

Symptom Management
• Respiratory insufficiency
• Fatigue
• Problems with mobility
• Pain
• Motor speech issues
• Dysphagia
• Problems with secretions
• Involuntary emotion
expression disorder (IEED)
• Contractures
• Depression
• Insomnia
• Constipation
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Focus on symptom management to achieve comfort
and increase quality of life:

Mechanical Ventilation
• Patients with mechanical ventilation can receive
hospice services.
• The hospice provider will work with patient and
family to decide when is the best time in the
disease trajectory for withdrawal of mechanical
ventilation.
• Withdrawal of mechanical ventilation will be
planned with the patient’s and family's in input.
34

Mechanical Ventilation…the Reality
• Not all hospice providers will admit patients with
mechanical ventilation to hospice care.
• Not all hospice providers are skilled with
mechanical ventilation support.
• Not all hospice providers have a mechanical
ventilation withdrawal support policy.
• Patients and families will need to work with their
primary physician to locate an appropriate
hospice provider.
35

Hydration and Artificial Feeds
• NHPCO’s Artificial Nutrition and Hydration
Narrative and Statement (PDF) Revised
statement from NHPCO board issued September
2010.
• Decisions about artificial nutrition and hydration
should be made in the same way as decisions
about other treatments, by considering the clinical
facts of the case, and then patient’s preferences
and the relevant risks and potential benefits.
36

Hydration and Artificial Feeds – the
Reality
• Not all hospice providers will admit patients with
artificial hydration or feed to hospice care.
• Conflict with a provider’s ethical philosophy of hospice
care.
• View these treatments as life prolonging.
• Patients and families will need to work with their
primary physician to locate an appropriate
hospice provider.
37

Barriers to Referral for Hospice
family.
initiating discussions regarding end-of-life care
plan.
• Development of advance care directives.
• Delivery of a terminal prognosis.
• Physicians feel that referral to end of life care is a
medical failure.
38

Barriers to Referral for Hospice
family.
initiating discussions regarding end-of-life care
plan.
• Development of advance care directives.
• Delivery of a terminal prognosis.
• Physicians feel that referral to end of life care is a
medical failure.
39

• Health care provider inadequate coordination of
care.
• Care fragmentation across the patient care continuum.
• Results in a late referral for hospice care.
• Patients and their families are given abundant
information late in the disease process.
40

• Health care provider inadequate coordination of
care.
• Care fragmentation across the patient care continuum.
• Results in a late referral for hospice care.
• Patients and their families are given abundant
information late in the disease process.
41

Benefits of Hospice and Palliative Care
• Hospice is a comprehensive program of
supportive care for persons living with a terminal
disease, such as ALS.
• Hospice care seeks to minimize the symptoms
caused by ALS and to provide an environment of
physical, emotional and spiritual support,
permitting a person to live their life to their fullest
potential.
42

Q&A
NHPCO members enjoy unlimited access to Regulatory Assistance
43
Feel free to email questions to regulatory@nhpco.org

Regulatory and Compliance Team at
NHPCO
Jennifer Kennedy, MA, BSN, RN
Director, Regulatory and Compliance
Judi Lund Person, MPH
Vice President, Compliance and Regulatory
Leadership
Email us at: regulatory@nhpco.org
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Resources and References
• National Hospice and Palliative Care
Organization
• NHPCO's Facts & Figures on Hospice - released
October 2014.
• National Data Set, 2014
• ALS Association - Reasons for Living with ALS
• Palliative Care as an Option for PALS
• Symptom Management of the Patient With
Amyotrophic Lateral Sclerosis: A Guide for
Hospice Nurses
45

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