Judy Peres, LCSW-C
Supporting Successful
Transitions
“Societal Perspectives on
Health Care Policies”
Center for Practical Bioethics
April 10, 2013
Kansas City, MO
3
Conflicting societal forces complicate
planning & delivery of care near the end of
life
Goals of Care
 Competing streams of revenue
 Statutory & Regulatory Scramble

• Quality care should not be dependent on luck,
institutional largesse or charismatic leadership.
4
•
•
Brief History on End-of-Life Care &
Advance Care Planning
Perspectives on Challenges
◦ Clinical
◦ Organizational
◦ Public Policy
•
Innovative Efforts
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6
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1900 – life expectancy, 46
years
People died quickly
• Medical therapies focused on caring &
comfort
• People cared for the dying @ home
7
•
Death is unavoidable
2.5 million people die each year
83% are Medicare Beneficiaries
8
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Modern health care system fights
aggressively against illness and death
People survive illness & accidents
Live longer w/ multiple chronic illnesses
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•
Origins of Palliative Care
Hospice Movement,
Dame Cicely Saunders
Elizabeth Kubler-Ross
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RiRight to Die
ght to Die
•
•
•
Karen Ann Quinlin - 1985
Nancy Cruzan - 1990
Terri Schiavo - 2005
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Approaching Death in America:
Improving Care at the End of Life IOM, 1997
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Since 1970s, primary legal tool to
communicate formally wishes regarding endof-life care & enhance likelihood that wishes
are followed by health care professionals
Living will
Health care power of attorney/proxy/agent
POLST Paradigm (Physician Orders for Life
Sustaining Treatment: www.ohsu.edu/polst

“Necessary but not sufficient?”
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Patient Self-Determination Act (PSDA)
1990
• Requires all health care
facilities receiving
Medicare or Medicaid
funding to inform patients
of their right to refuse
medical treatment and to
sign advance directives
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Legal transactional approach vs. communications
approach
IOM, 1997: “Advance care planning is a broader,
less legally focused concept than that of advance
directives. It encompasses not only preparation
of legal documents but also discussions with
family members and physicians about what the
future may hold…, how patients and families
want their beliefs and preferences to guide
decisions…, and what steps could alleviate
concerns…that trouble seriously ill or dying
patients.”
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Competent comprehensive &
compassionate care
Across time, place & provider
In accord with a persons values, preferences
& goals
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Respecting patient goals, preferences and
choices
Comprehensive caring
Utilizing the strengths of interdisciplinary
resources
Acknowledging and addressing caregiver
concerns
Building systems and mechanisms of support
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
Integration of the experience of life’s end:
◦ Attending to suffering in all domains:
 Biological and Physical
 Psychological and Emotional
 Social and Interpersonal
 Spiritual and Religious
 Intellectual and Professional
◦ Reviewing one’s life narrative
◦ Focusing on meaning
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Maintaining hope:
◦ A confident expectation that good will
come to one in the future
Preserving dignity:
◦ Value, esteem, lovability
Healing vs. cure:
◦ It is possible to die healed
◦ Wholeness vs. Eradication of disease
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Palliative Care
• Comprehensive management of physical,
social, spiritual and existential needs of
patients
• Objectives: to relieve symptoms and to
improve the quality of life for patients
[with chronic?] as well as terminal
illnesses
• Interdisciplinary Team Care
• “Overmedicalization”
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Clinical Perspective

Conflicting goals of care

Communication

Clinical services/lack of continuity
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Goals of Care/goal Setting
• Palliative care poorly integrated
• Majority of deaths in hospital
• Curing vs. Caring
• Poor timing of palliative care
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Goals of Care/Care Planning/Advance Care Planning
• Advance care directives
• Importance of ongoing dialogue
• Impact on surrogates
Continuity of Care/Portability
• No coordination across venues  disruption of
care
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Communication
 Doctor–patient relationship
 Family
Training for caregivers
Technical & psychological support for caregivers
 Interdisciplinary practice
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Clinical Services Pain and
Symptom Management
• Impact of regulation and fear of
sanction
• Ignorance regarding pain management
• Pain control as standard of care
• State laws on pain management
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Organizational Perspective
Staffing
Philanthropy
Leadership
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Staffing Issues
•
•
•
•
Interdisciplinary team
Workforce shortage
Lack of bilingual staff
Burnout
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Philanthropy
• Competition for charitable
dollars
• Community support for
hospice
• Sustainability
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Leadership
• Aging population
• Lack of leadership training
• Overcoming institutional resistance
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
Medicare & Medicaid - Coverage and
financing

Regulation & Oversight

Affordable Care Act
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Medicare & Medicaid
From a public policy perspective, a tangle of
coverage,
financing and oversight rules govern how
beneficiaries receive “palliative” care
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“Je weniger die Leute daruber wisser,
wie wurste und gesetze gemacht
warden, desto besser schlafen sie
nachts.”
“The less the people know about how
sausage and laws are made, the better
they sleep at night.” Otto Von
Bismarck
32
• Ninety-six percent
of Medicare
expenditures
involve individuals
with multiple
chronic
conditions.
0 Chronic
conditions
1%
5+ Chronic
conditions
79%
1 Chronic
condition
3%
2 Chronic
conditions
6%
3 Chronic
conditions
10%
4 Chronic
conditions
9%
Source: Medicare Standard Analytic File, 2007
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Medicare.
◦ Coverage and payment for palliative care,
complex and poorly understood.
◦ Remains acute care focused.
◦ Medical necessity criteria – recent change
not understood
◦ For palliative care -- goal is not
improvement, but comfort or slowing of
disease progression.
34
Medicaid
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Hidden source of funding for EOL care
through LTC services
10 Million “dual eligibles”
66% of spending for dual eligibles for LTC
services
Hospice
◦ Optional Benefit
◦ Based on Medicare requirements
◦ States pay 95% of NFs “room & board” rate to the
hospice for Medicaid residents
35
Approximately 30% of Medicare
spending is on the last six months
of life
Hospice and other reforms have
done little to reduce spending in
last six months of life
36
Medicare
 Covers palliative care indirectly in most
providers; explicitly through hospice:
◦ Hospitals – Growth in palliative care
programs… not fit Medicare coverage &
payment policies
◦ SNFs – coverage & payment not intended
for chronic, LTC. SNF Part A, not available
once beneficiary elects hospice
◦ Hospice Benefit, TEFRA ‘82
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Medicare Spending on Hospice, 2010 was
$13 billion
Spending for each beneficiary receiving
hospice: $8,405
Total number of Medicare hospice patients:
1.1 million
44% of decedents in 2010
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Public Policy Perspective
Regulation
• Medicare conditions of participation
• Under- and over-regulation
• Impact of compliance on patient care
Oversight
•
Office of inspector general
– Certifications of terminal prognosis
•
Centers for Medicare and Medicaid services
– Hospice/Nursing Facility survey oversight
•
General accounting office
– Delays in using hospice benefit
39
Affordable Care Act – March 2010
Includes numerous changes to Medicare:
 Changes to Medicare plan and provider payments;
benefit
 Improvements; delivery system reforms; new revenues
 Reduces net Medicare spending by $716 billion over 10
years
 (2013‐2022)
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 Welcome
to Medicare – 2003
 Affordable Care Act - 2010
 Wellness Visit - 2011
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I’m going to read you a list of specific elements or parts of the law. For each, please tell
me whether you think it is included in the health reform law, or not.
ELEMENTS THAT ARE NOT INCLUDED IN THE HEALTH REFORM LAW
No
(correct
Yes
answer)
Allow a government panel to make decisions about end-of-life care for
people on Medicare
Total
36%
45%
Democrats
35
54
Independents
36
44
Republicans
41
39
Create a new government run insurance plan to be offered along with
private plans
Total
Democrats
Independents
Republicans
Note: Items asked of separate half samples.
Source: Kaiser Family Foundation Health Tracking Poll Omnibus Supplement (conducted March 1-4, 2012)
52%
43
50
68
30%
38
34
20
Don’t
know
20%
10
20
21
18%
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16
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What we know:
 Population is aging & more diverse;
 We are living longer with greater frailty;
 Providers need to be skilled @ eliciting patient’s
values & preferences;
 Coordinated Care is key to Quality
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“a structured dialogue (communication and
negotiation) with the goal of shaping
clinical care by the patient’s preferences
and goals in life over time”
Targeted
(by age, medical condition, prognosis)
Tailored
(to health status, circumstances,
beliefs/values)
Flexible and Continuous
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Embedded in comprehensive care plan
Iterative Process
Allows people to define the type of EOL
care they desire
Explains extent to which person wants: lifesustaining medical treatments; Preserves
personal autonomy
Identifies Surrogate Decision Maker
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Bill Frist – calls for “a national, high-profile,
civil dialogue, which should begin in the
living rooms of patients and their families
and extend to nurses’ and doctors’ offices,
hospitals, religious institutions, and policy
chambers” that asks the question: How do I
want to die?
“How Doctors Die”
It’s Not Like the Rest of Us, But It Should Be
Ken Murray, MD
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AARP: www.aarp.org/families/end_life/
Aging with Dignity: Five Wishes:
www.agingwithdignity.org/catalog/
American Bar Association: Tool kit for Health Care Advance
Planning:
www.abanet.org/aging/toolkit/
American Hospital Association: Put It In Writing:
www.putitinwriting.org/putitinwriting_app/index.jsp
Caring Connections: Free State Specific ADs & Brochures:
www.caringinfo.org/PlanningAhead/PlanningAheadChecklist.htm
Caring Conversations Workbook:
http://www.practicalbioethics.org/resources/caringconversations.html#
The Conversation Project:
http://theconversationproject.org/
National Health Care Decision Day- April 16th
http://www.nationalhealthcaredecisionsday.org/resources.htm
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Conflicting societal forces complicate
planning & delivery of care near the end of
life
Goals of Care
 Competing streams of revenue
 Statutory & Regulatory Scramble

• Quality care should not be dependent on luck,
institutional largesse or charismatic leadership.
52