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Hospice, Palliative
and Bereavement Care
Medical Sociology – Towson University
November 4, 2015
Robin L. Stocksdale, MSW, LCSW-C, CT
Bereavement Outreach and
Project Coordinator – Tanzania Partnership
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About Your Presenter
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Employee of Gilchrist for 16 years
BA Sociology, The College of Wooster
MSW, Rutgers University
LCSW-C, Certified in Thanatology
Adjunct Professor Rutgers University
Guest presenter UMSSW, Towson, UMBC
About Gilchrist Hospice Care
• Largest hospice in the state of Maryland
• A not-for-profit organization
• Serves over 700 patients on a daily basis, most in
their homes
• Serves clients in Baltimore, Howard, Harford,
Carroll County and Baltimore City
• Four inpatient units
About Gilchrist Hospice Care
• Serve adult and pediatric clients
• Gilchrist Grief Services
• Global Partnership in Tanzania
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Objectives
• Describe and define palliative care and hospice
care
• Describe uncomplicated and complicated grief
• Illustrate how one moves through grief
• Explore sociological issues in hospice and
bereavement care
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Death
Denying
Culture
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Death and Language
• Use of euphemisms
to avoid talking
about death
– “Passed away,
called home, gone
to his reward in
heaven, laid to
rest”
– “Lost a patient”
– “negative medical
outcome”
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Reclaiming Open
Communication about End of Life
• Palliative Care: A sub-specialty of
medicine that focuses on improving the
quality of life for those with chronic,
debilitating, and life-threatening illnesses
• Generally provided within hospitals
• Care provided by a multidisciplinary team
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Goals of Palliative Care
• To alleviate challenging symptoms such
as pain, shortness of breath and other
symptoms related to advanced disease
process
• To facilitate discussions of advance care
planning and goals of care
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Palliative Care
• Common philosophy with Hospice care
• Palliative Care differs from hospice:
– provided independent of a person’s life
expectancy
– can be provided alongside other forms of
treatments
– Generally provided within a hospital
Hospice Care
• A special way of caring for patients and
families at end of life
• Focus of care is the patient and family
• Death as a natural part of life
• Does not hasten or prolong death
• Focus on comfort care, not aggressive
treatment
• Physical, emotional, social, spiritual care
• Goal is peaceful end of life
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A Historical Perspective
• Roots in age-old customs of hospitality “a place
that receives guests”
• St. Christopher’s Hospice in England 1967
founded by Dr. Cicely Saunders (named for the
patron saint of travelers)
• Elisabeth Kubler-Ross influenced by Saunders
• 1974 - first American hospice center opened in
New Haven Connecticut
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NHPCO Facts and Figures: Hospice Care in America 2014 Edition
National Hospice and Palliative Care Organization
Patients Served by Hospice
• Patients with a life limiting illness
• Patients whose life expectancy is measured
in months rather than years
• Patients who no longer desire treatment
• Patients for whom curative treatment is no
longer effective
Location of Hospice Care
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Homes
Nursing homes
Group homes
Continuing care retirement communities
Assisted living facilities
Inpatient units
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The Focus of Care
• Center of care is
patient and
family
• Hospice
coaches, trains,
intermittently
visits
• On-call 24/7
The Hospice Care Team
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Nurses
Social workers
Hospice aides
Chaplains
Bereavement counselors
Volunteers
Physicians
Volunteer-Based Beginnings
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Provide companionship, emotional support
Offer respite to care givers
Reiki, massage, caring touch, music, pets
Bereavement support
End of Life Doula
Who Pays for Hospice Care?
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Medicare Hospice Benefit
Medical Assistance
Private insurance companies
Private pay
Gilchrist Hospice Care provides care to all eligible
patients regardless of their ability to pay
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Covered by Medicare Hospice Benefit
• Visits from the hospice staff and volunteers
• Medical equipment and supplies related to the
terminal illness
• Medication related to the terminal illness
• Respite care
• Inpatient care when needed
• Bereavement services
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• Bill Moyers video
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Issues in Hospice Care
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Underutilization by African Americans
NHPCO Caring Connections focus groups 2006
• Discussed feelings regarding end-of-life thinking,
talking and planning
• Some at ease with the topic of death and dying
• Others felt it was culturally taboo to discuss it
• Conflict between wanting to be informed medically,
but being culturally bound to privacy
• Wanting to rely on faith first and foremost
“African American Outreach Guide,” Caring Connections, a Program of the
National Hospice and Palliative Care Organization, 2014
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Underutilization by African Americans
• Distrust that even if preferences are specified in
writing, they would not be honored by medical
professionals
• Many said they would not want to be kept alive on
life support indefinitely because of a fear of being a
burden on their loved ones, but would want a chance
at recovery
“African American Outreach Guide,” Caring Connections, a Program of the
National Hospice and Palliative Care Organization, 2014
Underutilization by African Americans
• About half had heard of hospice care, although there
was confusion over what hospice is
• Perception that hospice is for when “they run out of
things to do; they can’t do anything to cure you.”
• Perception of it as a place someone is “sent away to”
when their family has “abandoned” them
• Disbelief that Medicaid, Medicare and most private
insurance companies cover hospice expenses.
“African American Outreach Guide, Caring Connections,” a Program of the
National Hospice and Palliative Care Organization, 2014
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Attempts to Lessen Disparity
• Joseph Richey
• Faith-based outreach
• Community Outreach
Barriers to Hospice Care:
Death Avoidance
• Death anxiety
• Death viewed as a failure of medical care
• Reluctance to have conversations about end
of life with medical care providers
• Reluctance of medical care providers to have
conversations with patients about end of
life
• Reluctance to talk about death within our
families
Stigma and Fear – the “H” word
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Misperceptions About Hospice
• “It’s a way of the medical community to save
money and deny me care”
• “Hospice denies God’s power and will.”
• “Hospice will take over and tell me what to do”
• “Once a patient goes on Hospice care, he or she
will die quickly.”
• “Hospice means leaving our home.”
• “Hospice means giving up hope.”
Benefits of Hospice Care
• Earlier hospice enrollment reduces the risk of
depression in family caregivers.
– Bradley et al. American Journal of
Psychiatry 2004; 161:2257-2262.
• Survival is on average 29 days longer for enrolled pts
compared with matched peers.
– Connor et al. Journal of Pain and Symptom
Management. 2007;33(3):238-46.
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Another Benefit: Cost Saving
“In 2007, hospice use reduced Medicare
expenditures during the last year of life
by an average of $2309 per hospice
user.”
Taylor, Donald et al. “What Length of Hospice Use Maximizes
Reduction in Medical Expenditures Near Death in the US
Medicare Program.” Social Science & Medicine, June 2007
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How We Conceptualize Dying Experience
• Stages – Kubler Ross
• Tasks – Corr, 1992
– physical
– psychological
• Autonomy, dignity, quality of life
– social, spiritual
• Interpersonal attachments
• Meaningfulness, connectedness, transcendence
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Compartmentalization of Death and Dying
• Elisabeth Kubler Ross (On Death and Dying, 1969)
– Denial, anger, bargaining, depression and acceptance
• Criticism
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Not been supported by research
Doesn’t account for individual or cultural differences
Pejorative labeling – “he’s in denial” – she is “stuck”
Prescriptive, not descriptive
Too linear
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The Business of Hospice
• Medicare Conditions of Participation
• Certificate of Need
• Competition
– Non-profit
– For-profit
• Collaboration – “gentleman’s agreement”
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Oversight
• Medicare – grants regulatory authority to survey
agencies to determine if they meet the Medicare
Conditions of Participation and CMS Quality
Standards
– Joint Commission
– CHAP (Community Health Accreditation Partner)
• National Hospice and Palliative Care Organization
(NHPCO) quality standards
Example of Medicare COPS
• 5% of all employee hours must be provided
by volunteers (only direct care of patients
and bereaved count – not fundraising,
marketing, clerical, etc.)
• Specific criteria for eligibility in general
• Even stricter criteria for admission to
inpatient care
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Medicare Criteria
• Criteria for hospice care:
– Example - dementia
– CMS (Center for Medicare and Medicaid)
has adjusted the criteria for the dementia
diagnosis
– More stringent
When Does a Person with Dementia
Qualify for Hospice Care?
Medicare Criteria
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Unable to walk without assistance
Unable to dress without assistance
Unable to bathe without assistance
Incontinent
Unable to communicate in a meaningful way
Medical complications within the past 12
months
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Functional Assessment Staging Scale
and Medicare Criteria
Medicare states a person with dementia must be at a
stage seven to qualify for hospice care
Stage One:
Stage Two:
Stage Three:
Stage Four:
Stage Five:
No difficulty
Losing things
Trouble working or getting to new places
Difficulty with complex tasks
Needs help choosing clothing
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Functional Assessment Staging Scale
Stage Six
A) trouble putting on clothes
B) difficulty bathing properly
C) trouble handling the mechanics of toileting
D) Occasional urinary incontinence
E) Occasional fecal incontinence
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Functional Assessment Staging Scale
Stage Seven
A & B) Ability to speak severely limited to approximately a
half dozen intelligible different words or fewer
C) cannot walk without personal assistance
D) Cannot sit up without assistance.
E) Loss of ability to smile.
F) Loss of ability to hold head up independently
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Other Constraints and Considerations
• Per diem reimbursement - the U shape
• Budgeting - PT & OT? How high tech?
• Addressing financial concerns:
– Continuum
– Creative programs like Gilchrist Transitions
– Moving upstream
– Use of volunteers
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Marketing Hospice
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Advertising
1-800-hospice
Print and social media
Market differentiators
– Global Partnership
– Bereavement Services
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Marketing Hospice Care
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Hospital partnerships
Preferred providers nursing homes
Business development managers
Seizing opportunities – Maryland
Health Care for All
• Interfaith breakfasts
An International Perspective
Sub-Saharan Africa
• Tanzania
– In 2013, 72,000 people were newly infected
with HIV, and 78,000 people died from an
AIDS-related illness.
– Life expectancy 60 years
– Per capita income $600 US
– No health insurance
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A Study in Contrasts
• Shortage of doctors and nurses
• Inability to pay staff unless employed by
government
• Nkoaranga Lutheran Hospital’s Palliative Care
Program:
– 900 patients, 5 staff members, 40 volunteers
• Gilchrist Hospice Care
– 750 patients, 450+ staff members, 475+
volunteers
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• Okuyamba
References and Readings
• National Hospice and Palliative Care Association. NHPCO Facts
and Figures: Hospice Care in America, 2014
• www.gilchristservices.org Gilchrist Hospice Care
• www.nhpco.org
• Prigerson, Holly G. et al. “Prolonged Grief Disorder:
Psychometric Validation of Criteria Proposed for DSM-V and
ICD-11.” www.plosmedicine.org August 2009, Vol 6, Issue 8
• Shear, M. Katherine MD et al. “Complicated Grief And Related
Bereavement Issues For DSM-5.” Depression And Anxiety, 28 :
103–117 (2011)
• DeSpelder, Lynne Ann and Albert Lee Strickland. The Last
Dance. New York: McGraw-Hill, 2009.
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References
• Balk, David, editor. Handbook of Thanatology: The essential
body of knowledge for the study of death, dying, and
bereavement. Routledge, 2007
• Corr, Charles A. et al. Death & Dying, Life & Living. 6th edition.
Wadsworth 2009
• Taylor, Donald et al. “What Length of Hospice Use Maximizes
Reduction in Medical Expenditures Near Death in the US
Medicare Program.” Social Science & Medicine, June 2007
• www.globalpartnersincare.org
• African American Outreach Guide, Caring Connections, a
Program of the National Hospice and Palliative Care
Organization, 2014
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References
• Holley & Mast, “The Impact of Anticipatory Grief on Caregiver
Burden in Dementia Caregivers.” The Gerontologist, 49:3, 2009.
• Frank, Jacquelyn B. “Evidence for Grief as the Major Barrier
Faced by Alzheimer Caregivers” American Journal of Alzheimer’s
Disease & Other Dementias, 22:6, January 2008
• Hebert et al, “Preparedness for the Death of a Loved One and
Mental Health in Bereaved Caregivers of Patients with
Dementia: Findings from the REACH Study.” Journal of Palliative
Medicine, Vol 9 # 3, 2006
• Schulz et al “Predictors of Complicated Grief Among Dementia
Caregivers: A Prospective Study of Bereavement” American
Journal of Geriatric Psychiatry, 14:8, August 2006