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

© National Hospice and Palliative Care Organization, 2014

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.

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.

4


ALS End of Life Data

5

NHPCO National Data Set, 2012



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PALLIATIVE CARE

8

End of Life Care Continuum

9EPEC 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

14


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

19


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

21

Hospice and palliative care

22EPEC 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.

24


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

• Routine Home Care • 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

• Routine Home Care




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.

28



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

http://www.nhpco.org/sites/default/files/public/ANH_Statement_Commentary.pdf


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

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NHPCO members enjoy unlimited access to Regulatory Assistance

Feel free to email questions to [email protected]

mailto:[email protected]


Regulatory and Compliance Team at

NHPCOJennifer Kennedy, MA, BSN, RN

Director, Regulatory and Compliance

Judi Lund Person, MPH

Vice President, Compliance and Regulatory

Leadership

Email us at: [email protected]

44


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

http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf

http://www.alsa.org/als-care/resources/publications-videos/factsheets/reasons-for-living-with-als.html

http://www.breakthroughals.org/breakthroughblog/entry/palliative-care-as-an-option-for-pals

http://www.medscape.com/viewarticle/578915_11

Education

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