Julia Kasl-Godley, Ph.D. VA Hospice and Palliative Care Center VA Palo Alto Health Care System...
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Palliative Care and Hospice: A Public Health Issue Julia Kasl-Godley, Ph.D. VA Hospice and Palliative Care Center VA Palo Alto Health Care System Stanislav V. Kasl Award and Lecture October 16, 2014
Julia Kasl-Godley, Ph.D. VA Hospice and Palliative Care Center VA Palo Alto Health Care System Stanislav V. Kasl Award and Lecture October 16, 2014
Julia Kasl-Godley, Ph.D. VA Hospice and Palliative Care Center
VA Palo Alto Health Care System Stanislav V. Kasl Award and Lecture
October 16, 2014
Slide 2
Stanislav Kasl, Ph.D. Professor Mentor Colleague
Epidemiologist, Social Psychologist Father/Father-in-law
Grandfather Friend Person who lived with and died from cancer
Slide 3
Objectives Define palliative care and hospice Review findings
re palliative and EOL care in the US* Identify public health
response Highlight initiatives within VA Encourage consideration of
palliative care in professional activities *Palliative Care is a
critical global health issue but beyond scope of this talk
Slide 4
Definition Palliative Care Hospice Provided at any point in
disease trajectory of advanced illness Manages symptoms, enhances
QOL, provides interdisciplinary support to family system Assists
with medical decisions aligned with goals of care Delivered
concurrently with cure- oriented, life-prolonging therapies Occurs
across continuum of care venues, seeks to manage care transitions
through care coordination Type of palliative care that includes
end-of-life care, life-closure tasks, bereavement support Often
linked to Medicare Hospice Benefit Typically forgo disease-
directed therapy, unless for problems other than terminal illness
Can disenroll if stabilize or improve
Slide 5
Context 6 of 10 leading causes of death are chronic diseases
EOL=extended process for which people have time to prepare Yet,
individuals often feel unprepared, leaving disconnect between
preferences & actual care and, a multitude of problems
(Anderson & Horvath, 2004; Anderson 2010; National Center for
Health Statistics, 2011)
Slide 6
Common Problems at EOL Physical sx: pain, fatigue, appetite,
sleep problems; dyspnea, nausea/vomiting, constipation; delirium;
declining functional status Psycho-social-spiritual sx: changes
roles, status, abilities, lifestyle; interpersonal strain;
existential distress; diminished control; diminished sense of
meaning/purpose/dignity; adjustment, grief reactions; poor
communication; unfinished business; Fragmented, high cost care with
limited access to H&PC End-of-life preferences not honored
Economic and caregiving burden Physical, psychological morbidity;
mortality in caregivers Pre-existing, chronic, recurrent or recent
onset mental illness 15-50% hospital 18% nursing home 40% in-home
care Emanuel & Emanuel, 1998; Nelson et al, 2001 ; Feldman et
al., 1987; Van Hemet et al., 1992; Bressi et al., 2003; McCarthy et
al., 2004; Miller et al., 2007
Slide 7
Evidence Base Well Established Palliative care assoc. with
increased pt & family satisfaction with care; reduced symptom
burden, improved bereavement adjustment; sometimes longer lives
than similarly ill patients who do not receive PC PC also
associated with cost savings --achieved through earlier
intervention, reductions in ED visits, ICU stays, hospital
readmissions significant given that 2/3 of Medicare spending covers
the 20% or beneficiaries that have 5+ chronic conditions (Gade et
al., 2008; Mottison et al., 2011; Higginson & Evans, 2010;
Higginson et al., 2003; Casarett et al., 2008; Bell, Somogy-Zalud,
& Masaki, 2010; Temel et al., 2010 )
Slide 8
SOwhy dont people have better EOL experiences given that
Palliative care is effective? Its complicated
Slide 9
IOM report (2014) perverse financial incentives fragmented care
delivery system time pressures that limit communication lack of
service coordination across programs several collateral effects:
frustration among professionals at mismatch between training &
complex needs of pts a high, escalating financial price, which
includes costs for interventions that many people near end of life
do not want perception that the health care system is not designed
to meet individuals most pressing needs and priorities, many of
which involve not medical care but social services (pg. 1-1)
Slide 10
in the face of an ever-increasing population with chronic
conditions, the current system, with its emphasis on acute curative
care, will fail to provide needed long-term chronic care and
palliative and support services (pg. 261) Woops. Wrong report
Slide 11
People suffer at EOL from errors of omission, commission. These
problems are reinforced by care systems that are not structured to
provide the clinical expertise, reliability, continuity and
emotional support needed by people approaching death (pg. 264)
Legal, organizational, economic obstacles Inadequate education,
training of health care professionals to care well for people at
EOL Too limited evidence-base Biomedical, clinical research
emphasizes prevention, detection, cure of disease, prolongation of
life. Limited support for end stages of diseases, physiological
bases of sxs, sx relief Epidemiological, health services research
not contributed a strong base for understanding degree to which
people suffer sxs, experience death alone/others, comprehend
diagnostic, prognostic information; achieve a dying that is
consistent with preferences, community norms, & PC principles
Metrics, outcomes needed other than death; focus on monitoring,
improving quality of care for those approaching death IOM report
(1997)
Slide 12
Are we really in the same place that we were 17 years ago? No,
some things have changed.
Slide 13
The Intervening Years Project on Death in America (Open Society
Institute) (1994-2003) Dartmouth Atlas of Health Care Project
(1996-present) VA End of Life Summit (1997), VA Interprofessional
Fellowship program in Palliative Care (2001), VA Hospice and
Palliative Care Program Office (2004) Oregon passes Death with
Dignity act (1997), Washington (2008), Vermont (2013) follow
Curriculum development, train-the-trainer models (e.g. EPEC--1997,
ELNEC--2000, APA EOL modules--2008) PBS series On Our Own Terms:
Moyers on Dying in America (2000) Last Acts Report. Means to a
Better Life: A Report on Dying in America (2002) Palliative Care
Leadership Centers (2004) established by RWJ and CAPC IOM reports
Cancer Care for the Whole Patient (2008), Relieving Pain in America
(2011) VA Comprehensive End of Life Care Initiative (2009-2012)
Clinical Practice Guidelines for Quality Palliative Care by the
National Consensus Project (2004); 2 nd edition (2009); 3 rd
edition (2013); National Quality Forum endorses A National
Framework and Preferred Practices for Palliative and Hospice Care
Quality (2006) Hospice and Palliative medicine recognized as a
medical specialty (2006); ACGME adds hospice and palliative
medicine to its list of accredited programs (2009) Credentialing
programs in hospice and palliative care for (SW--2009, Chaplaincy,
Nursing), advanced practice palliative care fellowships Death
Panels (2009) Adoption of Physicians Orders for Life Sustaining
Treatment (POLST); form first used in Oregon (1995); becomes law in
CA, NY (2009) Joint Commission launches Advanced Certification
Program For Palliative Care (2011) Improving Medicare Post-Acute
Care Transformation Act (IMPACT)passed (2014)
Slide 14
Palliative Care and Hospice Today Significant increase in
number & capacity of palliative care, hospice programs
Slide 15
The prevalence of palliative care in U.S. hospitals with 50
beds or more has nearly tripled since 2000, reaching 61 percent of
all hospitals of this size. PALLIATIVE CARE GROWTH IN THE U.S.
Slide 16
Slide 17
Palliative Care and Hospice Today Palliative care expertise is
growing across multiple venues and establishment of primary and
specialty palliative care services Outpatient ambulatory care
clinics few hospitals offer specialized outpatient PC & when
exists, typically part-time, focused primarily on cancer care (e.g.
Rabow, ORiordan, & Pantilat, 2014), growing evidence that
outpatient PC can improve satisfaction with care, improve symptom
control/QOL, reduce care utilization, lengthen survival (Rabow,
Kvale, Barbour, Cassel, Cohen, Jackson et al., 2013) VA Palliative
Care-Primary Care collaborative pilots Home care programs Home care
often better at addressing physical symptoms than psycho-
social-spiritual needs (Ventura, Burney, Brooker, Fletcher &
Ricciardelli, 2013) New models (Labson, Sacco, Weissman, Gornet,
& Stuart, 2013) Kaiser Permanente In-Home Palliative Care
program Sutter Healths Advanced Illness Management program VA Home
Based Primary Care-Palliative Care pilot (Wharton, Manu, &
Vitale, 2013) Long term care : nearly 1/3 of adults 65+ die in
nursing homes; of those persons with advanced dementia (Ersek &
Carpenter, 2013) Limited use of hospice/palliative care (e.g.
contract with community hospice agencies; internal PC teams); home
grown palliative care (Gonzalo & Miller, 2007)
Slide 18
One mans story2005-2010
http://ecampus.stanford.edu/cooper_legacy/index.html
http://ecampus.stanford.edu/cooper_legacy/index.html
http://www.youtube.com/watch?v=aSgRggu5kH8
Slide 19
But as we have learned, Mr. Coopers experience is not everyones
story. Why not? Remaining challenges
Slide 20
IOM Report (2014): Key Findings Delivery of Person-Centered,
Family-Oriented Care Multiple transitions between health care
settingsincluding high rates of preventable
hospitalizations--creating fragmented, burdensome care Increasing
demands on family caregivers; broader range of tasks (personal
care, household management, medical, nursing) Limited timely
referral to palliative care despite guidelines encouraging
disease-oriented specialists to counsel about palliative care
ClinicianPatient Communication and Advance Care Planning Most
people, particularly younger, poorer, minority, & less-educated
individuals, do not have advance care conversations. Need
conversations about care choices & work to ensure that patient,
family decision making based on adequate information,
understanding. Acute care is default Incentives, quality standards,
& system support needed to promote improved clinician
communication skills and more frequent, productive clinicianpatient
conversations
Slide 21
IOM Report (2014): Key Findings Public Education and Engagement
Most Americans lack knowledge about EOL care choices; health
community, other leaders have not fully utilized strategies to make
knowledge available, meaningful, & relevant across diverse
groups; at societal, community/family, & individual levels
Efforts needed to normalize conversations about death and dying
Professional Education and Development 3 problems: (1) insufficient
attention to palliative care in medical and nursing school
curricula; (2) educational silos that impede development of
interprofessional teams; (3) deficits in equipping physicians with
sufficient communication skills Health professionals are not always
adequately prepared to deliver basic or primary palliative care to
patients who are not currently hospitalized or do not require
specialty palliative care
Slide 22
Examples Insufficient staffing on PC teams remainsaffects
access, LOS (PC registry) August 2014 Dept. Of Veterans Affairs,
Office of Inspector General report where are the psychologists????
Integrated care models not made it to PC outside of VA Increasing
demand for PC will soon outstrip the supply of providers in 2013,
there were approx. 5,000 board certified HPM physicians, more than
half of whom work less than full time (Maddock, 2013) estimated
need of 6,000 to 18,000+ additional physicians to meet current
demands
Slide 23
IOM Report (2014): Key Findings Policies and Payment Systems
Incentives under fee-for-service Medicare result in more use of
services (hospital days, intensive care, emergency care), more
transitions among care settings, & late enrollment in hospice,
all of which jeopardize quality of EOL care & add to its costs
Payment silos contribute to fragmentation of care, hinder
coordination across providers, and encourage inappropriate
utilization. Changes are needed throughout the health care system
to incentivize provision of comprehensive palliative care Programs
that integrate health care & social services may reduce
hospitalizations & health care costs while improving QOL.
Successful models of these programs, including ways to ensure
financial sustainability, need to be implemented broadly Quality
standards and measures are needed to ensure that changes in payment
systems, particularly those occurring under the Patient Protection
and Affordable Care Act, do not adversely affect quality of care
for patients at EOL
Slide 24
IOM Report (2014): bottom line Success and sustainability of
palliative care depends on ability to integrate social and medical
needs Without fundamental changes in health professional training,
no matter how payment and system designs change, clinicians will be
unable to meet the needs of patients facing serious illness Meyer
2014
Slide 25
Is Palliative Care a Public Health Issue?
Slide 26
Issues to Consider Ideally, people would live long, healthy
lives until an advanced age. Dying & morbidity would be
compressed Increasing gap between actual life expectancy &
healthy life expectancy such that increasing likelihood of longer
period of poor health/disability, despite significantly greater
health care expenditures Yet, in todays world, what types of care
is valued & rewarded? What can we do when we can not cure or
prevent illness, frailty, disability? If we provided both high
quality, effective and efficient cure-oriented and palliative care,
might we free up more resources for more traditional public health
domains that also affect morbidity and mortality? Modified from
Hallenbeck Squaring the Curve, 2013
Slide 27
Public Health Response Assessment: collect, assemble, analyze,
make available info on health Identify etiologic/risk/protective
factors; increase understanding of problems; inform interventions;
prospective cohort studies Conduct research on evidence-based
practices Design metrics that capture benefits of H&PC;
evaluate effectiveness of care, monitor progress towards achieving
better dying/death; meeting needs Policy Development: use of
science in decision making re public health Am. Public Health
Assoc. Policy 20134 (2013) calls for a rebalance of medical &
social services/supports through public health policy that fosters
intersectoral collaboration, innovation and models of
patient-centered palliative care Develop health policy that
recognizes and plans for the inevitability of dying, optimizes cost
effective care; supports sustainable payment models Assurance:
assure services provided through regulation, direct delivery,
community action Disseminate information on palliative care:
community; patient/family, professionals Support development of
trained palliative care workforce ; accreditation standards Engage
community; social marketing of palliative care Improve access to
high quality services through comprehensive systems of care; reduce
barriers and utilization disparities; new delivery and payment
models
Slide 28
One Systems Response: VA Of all Americans who pass away this
year, more than one- quarter will be veterans of our Nations armed
services. Nearly 1,600 veterans die every day, and in this year
alone, more of them will die than did during all four years of the
Second World War Because VA is the largest integrated health care
system in the country, we are well positioned to be a National
leader in this highly specialized area of care. We have called
attention to the need for a coordinated, collaborative approach
that not only addresses, but publicizes the many emerging
developments in end-of-life care among our employees, our customers
and their families, and our many partners in the health care
community former Secretary Anthony J. Principi, 2005 Comprehensive
End of Life Care (CELC) Initiative (2009-2012): provided targeted
funding to promote development and expansion of quality hospice and
palliative care programs across VA
Slide 29
Comprehensive End of Life Care (CELC) Initiative
ImplementationCenter VACO Hospice & Palliative Care Program
Office PROMISECenter VISN Palliative Care Program Managers and
Clinical Champions VA Field Staff and Leadership ResourceCenter
Luhrs & Talamanco, VA Comprehensive End of Life Care
Implementation Center Update 9-14-09
Slide 30
VA: Some Illustrative Examples Delivery of Person-Centered,
Family-Oriented Care Hospice & PC is a covered benefit for all
enrolled veterans. EOL care is free inpt settings (acute, ICU,
dedicated H&PC units, CLC), outpt clinics, in collaboration
with community partners (given less than 4% of all deaths occur in
VA inpt settings) Hospice & PC consult teams and/or inpatient
units at every VA health care facility 2001, only 41% of facilities
had PC team 2012, 68% of all inpt deaths received PC consult (47%
in 2008) Clinician-Pt Communication & Advance Care Planning
Goals of Care template On line tools, e.g. UCSF- SFVA PREPARE
Written material, e.g. shared decision making guide to LTC
Slide 31
VA: Some Illustrative Examples Public education and Engagement
Partnering with Non-VA agencies serving veterans and their families
Hospice-Veteran Partnerships NHPCO We Honor Veterans campaign
1,800+ community hospices made commitment to improve quality,
access and expertise in delivering care to veterans (2009-2012)
Professional education & development Interdisciplinary
Palliative Care Fellowship Program EPEC-VA, ELNEC-VA, HPNA training
4000+ nursing assistants received PC training; 772 VA staff trained
to teach, thousands of staff trained; 151 PC teams and VISN leaders
receiving training and mentoring to build PC programs (2009-2012)
National education, administrative calls, listserves
Slide 32
VA: Some Illustrative Examples Policies and payment systems
Quality improvement interventions identified & disseminated
through evidence-based practices; implementing, monitoring key
metrics Palliative Care Consult template Care Assessment Need (CAN)
Score in primary care estimated probability of admission or death
within a specified time Pts in highest percentile of risk have 62%
probability of admission, 30% probability of death, & 72%
probability of either event I CARE and Serious Illness Initiative
Bereaved Family Survey: 59% of families rated EOL care as
excellent; 24% as very good (2012); 63% in 2013 Expansion of access
in high priority areas: rural health, homelessness, Indian Health
Service
Slide 33
Few Patients with CAN Scores 95 Referred to Home based or
H&PC programs 1,353/241,917 pts (0.6%) referred to PC
569/241,917 pts (0.2%) referred to Hospice Fihn, Care Assessment
Need (CAN) Score and the Patient Care, June 27, 2013
Slide 34
Adding Care to Add Value Step #1 Clinician Judgment plus CAN
>95 (or >99) Step #2 National Roll out of PACT Goals of Care
Discussions Training Step #3 Identify and Align Supportive Services
to Veterans Needs Putting this into action Luhrs &
Magner-Perlin, Sept 2014, Integrating Palliative Care and Other
Supportive Services into PACT
Slide 35
Mr. P 61, married, Protestant, Caucasian, combat Vietnam Vet,
former mortgage broker, realtor Renal cell ca initially dx five
years prior to hospice admission, now with mets to brain, lung
Married 40 years; wife breast cancer survivor; 2 adult children,
one with Bipolar Sexually molested by family member as child, in
turn molested sister; remote history of substance abuse; recurrent
nightmares, flashbacks, anger; recent depression diagnosis and
suicidal ideation Recently told that he is no longer eligible for
additional treatment; Palliative Care Consult team got involved at
this point.
Slide 36
We are a perk--Not: My Hopes for Mental health Care and
Palliative care Attain increased visibility and integration
(integrated care) within and outside of VA Achieve consensus on
competencies developed for psychologists, develop resultant
self-assessment tool similar to Pikes Peak tool for Geropsychology
Develop widely available curriculum, training opportunities across
all levels of graduate education and post-liscensure Encourage
increased involvement and presence in national organizations,
conferences Incorporate knowledge of evidence based psychological
treatment into PC practice guidelines Oversight and coordination at
VA Central office level
Slide 37
Slide 38
A Privilege Palliative care and hospice offers unique
opportunities to change lives for the better, including our own By
helping seriously ill patients and their families find connection
and healing in the midst of medical suffering, we ourselves are
privileged to find deeper meaning in our own lives, personally
& professionally In the words of a recent psychology intern
engaged in palliative care "It reinforces my identity as a clinical
psychologist and reminds me of the privileges of this career" (Lee,
personal communication)
Slide 39
and Responsibility We need to recognize the importance of
establishing our core competences in basic palliative care with the
understanding that knowledge and skills are not enough We must ask
ourselves, in what ways can we be part of the change that we want
to see happen?
Slide 40
A Privileged Responsibility We need: To be a powerful voice for
individuals living with advanced, terminal illness To hold
ourselves accountable in creating a transformation in the delivery
of care such that all individuals can reliably access quality
palliative care by competent & compassionate professionals
capable of addressing complex bio-psycho-social-spiritual needs To
recognize our hesitancies and struggles as well as our passion and
potential. If not you, who? If not now, when? To increase our
credibility, cultivate competence as clinicians, researchers,
educators, policy advocates Adapted from The ACE Project
Slide 41
What Will our EOL Story be? What can we do, in our respective
disciplines, as researchers, educators, clinicians and policy
advocates to shape this nations stories? Our EOL story? new
research questions additional course materials partnerships with
stakeholders, community organizations interdisciplinary
collaboration
Slide 42
VA Palo Alto Health Care System: At a Crossroads Quality,
Effective, Accessible Palliative Care? Our future: H&PC program
cut by 2/3rds; move to another campus away from acute care
hospital; Effectively no PC consult service and building not
designed to accommodate high acuity, complexity. Replaced by
podiatry, research on patients receiving transcatheter aortic value
replacement
Slide 43
The Best Possible Day Medicine has forgotten how vital such
matters are to people as they approach lifes end. People want to
share memories, pass on wisdoms and keepsakes, connect with loved
ones, and to make some last contributions to the world. These
moments are among lifes most important, for both the dying and
those left behind. And the way we in medicine deny people these
moments, out of obtuseness and neglect, should be cause for our
unending shame. --Atul Gawande, NY Times, Oct 5 2014