Laura S. Meiki, LMSW, Doctoral Student
LNHA Social Services
Designee / Director Workshop
June 21, 2012
It's strange that they fear death.
Life hurts a lot more than death.
At the point of death,
the pain is over.
-Jim Morrison
OBJECTIVES
 Provide an overview of hospice and palliative care in
the nursing home setting
 Discuss the role of social services with hospice
patients
 Clarify LaPOST and advance directives
 Highlight current trends and issues in hospice/
palliative care
Introduction / terminology
HOSPICE
 Designed to give supportive care to people in the final phase
of a terminal illness.
 Focuses on comfort and quality of life, rather than cure.
 The goal is to enable patients to be comfortable and free of
pain, so that they live each day as fully as possible.
Aggressive methods of pain control may be used.
 Provides holistic care - support for the patient's emotional,
social, and spiritual needs in addition to medical symptoms as
part of treating the whole person. Family and loved ones are
included in care.
PALLIATIVE CARE
To palliate means to make comfortable by treating a person’s
symptoms from an illness.
The World Health Organization (WHO) defines palliative care as
“… an approach that improves the quality of life of
patients and their families facing the problem associated
with life-threatening illness, through the prevention and
relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual”
(World Health Organization [WHO], 2007 ).
Source: http://caringinfo.org
PALLIATIVE CARE/HOSPICE
 Palliative care is not the same as hospice.
 Hospice provides palliative care, but one need not be in
hospice to receive palliative care.
 Palliative care can be provided at any stage of a disease
process. A patient may receive palliative
care at the same time as curative
treatment.
HOSPICE ELIGIBILITY
 Diagnosis by two physicians (usually the
patient’s PCP and the hospice medical director)
of a terminal illness with a life expectancy of six
months or less
 Philosophical shift from curative to palliative care
 Patient and/or family agrees to hospice care
SOURCE: www.sw.org
DIAGNOSES FREQUENTLY REFERRED
TO HOSPICE








Cancer
Heart disease
Pulmonary disease
Dementia
Liver disease
Renal disease
HIV/AIDS
Parkinson’s disease
SOURCE: University of California Academic Geriatric Resource Center
http://www.ucop.edu/agrp/docs/la_hospice.pdf
WHEN IS A PATIENT WITH DEMENTIA
HOSPICE – APPROPRIATE? *
To be enrolled in hospice, ALL of these signs and
symptoms must be present:
 Unable to walk without direct assistance
 Unable to dress themselves
 Need help for bathing and grooming
 Unable to control bowel and bladder
 Might use some language, but are unable to converse
effectively
*NOTE: This diagnosis can only be provided by a physician
SOURCE: http://www.dementiacoalition.org/
WHEN IS A PATIENT WITH DEMENTIA
HOSPICE – APPROPRIATE? *
They must also have experienced at least ONE of the following
in the last year:





Serious lung or kidney infection
Sepsis (sometimes called “blood poisoning”)
Severe open bedsores or pressure ulcers
Persistent fever, even after antibiotics
Consistent inability to take food/fluids, or, lab test results that
indicate profound nutritional impairment
*NOTE: This diagnosis can only be provided by a physician
SOURCE: http://www.dementiacoalition.org/
THE MEDICARE HOSPICE BENEFIT
 Covered under Medicare Part A
 Patient must sign a statement choosing hospice care
instead of routine Medicare covered benefits for their
terminal illness *
 The hospice must be a Medicare-certified hospice
*Medicare will still pay for covered benefits for any health
problems that are not related to the terminal illness
SOURCES: medicare.gov, ucop.edu
THE MEDICARE HOSPICE BENEFIT
 Currently, the benefits run for two periods of 90
days followed by an unlimited number of 60 day
periods.
 At the end of each period, the patient must have
benefits renewed. To be “renewed,” a patient
must still have the terminal illness and must
manifest a functional decline.
SOURCE: medicare.gov
THE MEDICARE HOSPICE BENEFIT –
WHAT IS COVERED?
 Physician visits
 Nurse visits
 Medical equipment
 Medical supplies
 Drugs for symptom control or pain relief (patient may need to pay a
small copayment)
 Hospice aide and homemaker services
 Physical and occupational therapy
 Speech-language pathology services
SOURCE: medicare.gov
THE MEDICARE HOSPICE BENEFIT –
WHAT IS COVERED?
 Social worker services
 Dietary counseling
 Grief counseling for the patient and family
 Short-term inpatient care (for pain and symptom management)
 Short-term respite care (may need to pay a small copayment)
 Any other Medicare-covered services needed to manage pain
and other symptoms related to the patient’s terminal illness, as
recommended by the hospice team
SOURCE: medicare.gov
THE MEDICARE HOSPICE BENEFIT –
WHAT IS NOT COVERED?
 Treatment intended to cure the patient’s terminal illness
 Prescription drugs intended to cure the terminal illness (rather than
for symptom control or pain relief)
 Care from any hospice provider that wasn’t set up by the hospice
medical team
 Room and board
 Care in an emergency room, inpatient facility care, or ambulance
transportation, unless it’s either arranged by the hospice team or is
unrelated to the patient’s terminal illness
SOURCE: medicare.gov
HOSPICE CARE SHOULD BE AVAILABLE
TO ANYONE WHO NEEDS IT!!!
 Hospice care is available to anyone who meets
the admission qualifications regardless of the
patient’s ability to pay.
 Most hospices* accept:
 Medicare Part A
 Private insurance
 Medicaid
 Patients without funding
*non-profit hospices
THE HOSPICE TEAM
 Medical director
 Attending physician
 Social worker
 Registered nurses
 Home health aides
 Chaplain
 Volunteers
 Other modalities as needed (PT, OT, etc.)
THE HOSPICE TEAM –
SOCIAL WORK ROLE
 Assess patient/family emotional, social, spiritual and
financial needs and develop plan of care to meet
identified needs
 Provide direct counseling and bereavement support to
patients and their families
 The philosophies of social work and palliative care
complement one another – each taking into account the
dying individual in the full context of their life (Bosma et
al., 2010) – quality of life should include quality of death
(Roff, 2001).
THE HOSPICE TEAM –
SOCIAL WORK ROLE
 Using the biopsychosocial perspective to assess
patients, social workers view patients holistically,
providing patients and families assistance with emotional
reactions, therefore aiding them in later making difficult
medical decisions (Snow et al., 2008).
FACILITATING MEANINGFUL AND ENJOYABLE
VISITS WITH HOSPICE PATIENTS
Activities visitors may enjoy doing with their loved one:
 Massaging hands or feet with lotion
 Brushing his or her hair
 Singing familiar songs
 Looking at a colorful book or pictures
 Saying favorite prayers or poems
 Introducing favorite smells: cinnamon, fresh grass, cologne, perfume,
fresh baked cookies, and flowers
 Holding a cuddly pet like a cat or dog
 Holding hands and just being together
 Going outside to enjoy the air, the sunshine and the rest of nature
SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and
Deirdre Downes, LCSW Director Social Work, Jewish Home Lifecare
AS DEATH APPROACHES…
THE PROCESS OF “ACTIVELY” DYING
 Loss of appetite and ability to swallow
 Decreased urine output
 Less responsive and sleeps most of the time. Increasing weakness
 Loss of ability to close eyes
 Pain may be evident
 Breathing changes – can fluctuate between slow and labored, quick
and shallow
 Skin becomes cooler and blotchy in the feet and hands
SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and
Deirdre Downes, LCSW Director Social Work, Jewish Home Lifecare
AT THIS SPECIAL TIME…
 Provide the patient and family privacy, if possible.
 Place chairs near the bed for visitors.
 Put pictures, flowers, or religious objects on the bedside table.
 Place a sign on the door to indicate the significance of this time and to make
known the need for privacy and quiet.
 Face the bed toward the window if it is not too bright. Reduce bright lights. If
the weather is nice, open a window if possible.
 Spray the pillow or room with the person’s favorite scent.
SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and Deirdre
Downes, LCSW Director Social Work, Jewish Home Lifecare
AT THIS SPECIAL TIME…
 Remind visitors that the sense of hearing is often the
last sense to go – encourage visitors to
communicate with the patient and NOT to talk about
them as if they were not present
 Don’t forget that staff members are family too and
allow them special time to say goodbye
 Make sure staff know hospice protocols for when
death occurs – they may be different from facility
protocols
Thinking and talking about death need not be
morbid; they may be quite the opposite.
Ignorance and fear of death overshadow life,
while knowing and accepting death erases this
shadow.
-Lily Pincus
LAPOST
The mission of the Louisiana Physician Order for Scope
of Treatment -- LaPOST -- is to improve end-of-life care in
Louisiana by honoring the health care wishes and goals of
care of those with life-limiting illnesses.
“Our goal is to empower consumers and
health care professionals with easy-to-access,
simple-to-understand information and resources to
make educated decisions about end-of-life care.”
SOURCE: http://lhcqf.org/
LAPOST
 The LaPOST document and model of care were
created to effectively communicate the wishes of
seriously ill patients to have or to limit medical
treatment as they move from one care setting to
another (e.g., hospital to home/nursing
home/assisted living/home health/hospice and vice
versa).
SOURCE: http://lhcqf.org/
LAPOST – QUICK FACTS
 Standardized document available to all physicians and
patients in Louisiana
 Recommended for patients with a life-limiting illness and
irreversible condition
 Voluntary and neither for nor against specific treatment
 Created to transfer with patients through health care settings
SOURCE: http://lhcqf.org/
LAPOST – QUICK FACTS
 Requires the input of either the patient or the patient’s
personal health care representative
 Must be completed and signed by a physician
 Becomes a binding medical order once completed
 Can be changed or revoked at any time by the patient or
based on new knowledge by the patient’s personal health care
representative
SOURCE: http://lhcqf.org/
END-OF-LIFE DOCUMENTS
End-of-life care preparation usually involves one or a
combination of three documents:
 LaPOST
 Advance directive (also referred to as a living will)
 Health care power of attorney
While similar, each document requires specific planning.
SOURCE: http://lhcqf.org/
END OF LIFE DOCUMENTS
LaPOST becomes effective if a patient is unable to
communicate. It is standardized and available to
all physicians and patients in Louisiana, increasing
the likelihood that a patients’ treatment
preferences will be fulfilled.
SOURCE: http://lhcqf.org/
END OF LIFE DOCUMENTS
An advance directive, also referred to as a living
will, is a legal document stipulating treatment if an
individual becomes terminally ill and incapable of
making decisions. This document must be
notarized.
SOURCE: http://lhcqf.org/
END OF LIFE DOCUMENTS
A health care power of attorney is a document
that allows an individual to designate a proxy to
oversee end-of-life treatment once a patient is
incapable of making decisions.
NOTE: If multiple end-of-life documents are completed,
treatment preferences outlined in the most recent
document are followed.
SOURCE: http://lhcqf.org/
CURRENT TRENDS & ISSUES
 In 2009, 83% of hospice patients were adults over age
65. (National Hospice and Palliative Care Organization
2010).
 Approximately 84% of hospice care in the United States
is funded by the Medicare Hospice Benefit, making it the
primary insurer for hospice services (Remington &
Wakim, 2010).
 In 2009, the median length of service for hospice patients
was three weeks (NHPCO, 2010).
CURRENT TRENDS & ISSUES
 Today, there are about 5,000 hospices operating in the
United States (NHPCO, 2010).
 There are 126 hospices in Louisiana
(http://www.statehealthfacts.org/)
 Nonprofit versus for profit hospices
RESOURCES
Social Work Hospice and Palliative Care Network
http://www.swhpn.org/ - membership includes
subscription to Journal of Social Work in End-of-Life and
Palliative Care, newsletters, policy updates
National Council of Hospice and Palliative
Professionals (NCHPP)
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3628 –
professional membership associated with NHPCO National Hospice and Palliative Care Organization
RESOURCES
Louisiana-Mississippi Hospice and Palliative Care
Organization http://www.lmhpco.org/
Hospice Eligibility
http://www.ucop.edu/agrp/docs/la_hospice.pdf
Medicare Hospice Benefit
http://www.medicare.gov/publications/pubs/pdf/02154.pdf
LaPOST - http://www.la-post.org/