Transcript Asking for money: One person’s view

Hospice and Palliative Care:
The Quality Imperative
Diane E. Meier, MD
Professor, Departments of Geriatrics and Medicine
Gaisman Professor of Medical Ethics
Director, Center to Advance Palliative Care
Mount Sinai School of Medicine
04.26.06
NHPCO and Quality
• Vision: A world where individuals and families
facing serious illness, death, and grief will
experience the best that humankind can offer.
• Mission: To lead and mobilize social change
for improved care at the end of life.
Enabling themes:
• Quality: continuous improvement in the
quality of hospice and palliative care services,
and business practices;
• Access: Increasing use of palliative and hospice
care and integration of end-of-life care into the
health care continuum
National
Consensus
Project
For Quality Palliative Care
Going National: Bringing the National Consensus
Project for Quality Palliative Care into the Mainstream
www.nationalconsensusproject.org
NCP Guidelines for Quality
Palliative Care
In order to achieve a consensus on what we meant
by quality palliative care, a partnership of NHPCO,
AAHPM, HPNA, CAPC conducted a 2-year guideline
development process including a review of over 2000
citations from the literature, 31 consensus documents
and standards, and peer review by a steering
committee of 20 professionals and 200 experts in the
field.
The resulting guidelines, published in 2004, serve as
a framework for research, education, QI projects and
health policy.
NCP Goals
1. Build national consensus concerning
the definition, philosophy and
principles of palliative care through
an open and inclusive process that
includes the array of professionals,
providers and consumers involved
in, and affected by, palliative care.
Completed April 2004
NCP Goals
2. Create voluntary clinical practice
guidelines for palliative care that
describe the highest quality services to
patients and families.
Completed April 2004
3. Broadly disseminate the clinical practice
guidelines to enable existing and future
programs to better define their program
organization, resource requirements and
performance measures.
In Process
NCP Goals
4. Help clinicians provide key elements of
palliative care.
In process
5. Promote recognition, stable
reimbursement structures and
accreditation initiatives through projects
such as the National Quality Forum
(NQF).
In process
Formal Approval and Endorsement
by Major Organizations
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Center to Advance Palliative Care
National Hospice and Palliative Care
Coalition including: American Academy of
Hospice and Palliative Medicine, Hospice
and Palliative Nurses Association, National
Hospice and Palliative Care Organization
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care
Nursing
American Alliance of Cancer Pain Initiatives
American Association of Colleges of Nursing
American Association of Critical Care Nurses
American Association of Neonatal Nurses
American Association of Spinal Cord Injury
Nurses
American Board of Hospice and Palliative
Medicine
American College of Nurse Practitioners
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American Nephrology Nurses' Association
American Pain Society
American Society for Bioethics and
Humanities
American Society for Pain Management
Nursing
American Society of Plastic Surgical Nurses
Association of Nurses in AIDS Care
Association of Pediatric Oncology Nursing
Hospital Corporation of America
International Association for Hospice and
Palliative Care
National Association of Directors of Nursing
Administration for Long-Term Care
Oncology Nursing Society
Sigma Theta Tau (Honorary Nursing
Society)
Society of Critical Care Medicine
List in formation.
The National Quality Forum
Palliative and Hospice Care Framework
• NQF= Voluntary consensus standards-setting
organization – public+private support
• 5-step process: consensus standard development;
widespread review; member voting and council
approval; Board of Directors action; evaluation.
• Characterized by openness, balance, due process,
consensus, and appeals mechanism.
• NQF endorsement has payment and policy
implications.
• NCP Guidelines developed into an NQF
Framework, final vote expected in June
2006.
Implications of NQF
Endorsement
• Legitimacy in the eyes of policy
makers
• Legitimacy and coverage implications
for payers
• Support for development of
actionable measures for QI,
benchmarking, and public reporting
The National Consensus Project
for Quality Palliative Care:
A Good Beginning
• What was needed?
Consensus within our field on what quality means.
• Who were the partners?
NHPCO, AAHPM, HPNA, CAPC
• What were the outcomes?
www.nationalconsensusproject.org dissemination,
endorsement and an NQF Framework
This work has positioned us to lead rather
than follow in defining and measuring
quality.
But what is quality?
• “I know it when I see it!”
• But if patients and families are to have
reliably high quality care, there has to be
a way to measure it.
• How do we measure quality?
Dr. M, an 89 year old practicing
psychoanalyst
• Admitted to the hospital for scleroderma and
progressive kidney failure.
• Declined hemodialysis. Palliative care consult
called to assess patient’s capacity to refuse
dialysis and to assure that she was not suicidal.
• Discharged home with hospice on day 5 of
hospital stay.
• Did well at home for 4 months, remained in
active clinical practice.
• Said good bye to her patients, her son, and her
friends, then died quietly at home 3 days later.
Dr. M- a typical patient
• She received good hospital palliative care- goals
of care assessment and development of a care plan that
met her goals, symptom management.
• Transitioned effectively to, and received good
care from, hospice at home- Meticulous symptom
management, psychosocial support from hospice RN,
SW, MD to patient and her distressed family and friends.
Assured a peaceful dignified death at home.
Demonstrates how the palliative care quality
continuum works well from the perspective of
the patient and family, the providers, and the
payers.
How Quality is Assessed
Degree to which health services increase the
likelihood of desired health outcomes and are
consistent with current professional standards
of care.
Evaluated on the basis of 3 components:
• Structure: (presence of an IDT)
• Process:
(patient seen by RN, MD,
SW +other members of
the IDT as indicated)
• Outcome: (pain and satisfaction
improve as a result)
The Link Between Structure,
Process, and Outcome
• Structure and process measures are most
useful as quality indicators if changes in
them demonstrably improve patient
outcomes.
• Outcomes are most useful as quality
indicators if they can be linked to specific
process or structural measures that, if
altered, change the outcome.
The Purpose of Measurement
• External Quality Assessment: Payers,
regulators want to selectively pay or accredit
providers based on their quality and cost
effectiveness. Does this palliative care program
assess and treat symptoms in a timely manner?
• Internal Quality Assessment: Is our
hospice effectively identifying and treating
shortness of breath?
Definition of Quality in Healthcare
In healthcare, defined as care that is:
• Patient-centered
• Beneficial
• Timely
• Safe
• Equitable
• Efficient
National Quality Forum www.qualityforum.org
Institute for Healthcare Improvement www.ihi.org
1. Is Palliative Care
Patient and Family-Centered?
To answer this question we need to
know what persons with serious
illness want from our healthcare
system.
Impact of Illness on Family
Caregivers
2004 United States estimates:
26 million caregivers deliver care at
home to a seriously ill relative
Average hours of caregiving per week: 18
Cost equivalent of uncompensated care:
$257 billion (@ $8/hr)
Levine C. Loneliness of the long-term caregiver N Engl J Med 1999;340:158790.
AARP Caregiving in the U.S. 2004 www.caregiving.org
Report to Congress: Medicare Payment Policy Medpac;March 2003
www.medpac.gov
Caregiver Characteristics
900 family caregivers of seriously ill persons at 6
sites across the U.S.
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Women: 61%
Work full time: 60%
Close family member: 96%
Over age 65: 33%
In poor health: 33%
Emanuel et al. N Engl J Med 1999;341:956.
Caregiving in the U.S. 2005 www.caregiving.org
Caregiving Needs Among
Seriously Ill Persons
Interviews with 900 caregivers of seriously
ill persons at 6 U.S. sites:
• need more help: 87% of families
• transportation: 62%
• homemaking: 55%
Emanuel et al. Ann Intern Med 2000;132:451
Caregiving Increases Mortality
Nurses Health Study: prospective study of 54,412 nurses
• Increased risk of MI or cardiac death: RR
1.8 if caregiving >9 hrs/wk for ill spouse
Lee et al. Am J Prev Med 2003;24:113
Population based cohort study 400 in-home caregivers +
400 controls
• Increased risk of death: RR 1.6 among
caregivers reporting emotional strain
Schulz et al. JAMA 1999;282:2215.
Family Caregivers and the
SUPPORT study
Patient needed large amount of family
caregiving:
34%
Lost most family savings:
31%
Lost major source of income:
29%
At least one of the above:
55%
JAMA 1995;272:1839
What Do Family Caregivers Want?
Study of 475 family members 1-2 years after bereavement
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Loved one’s wishes honored
Inclusion in decision processes
Support/assistance at home
Practical help (transportation, medicines, equipment)
Personal care needs (bathing, feeding, toileting)
Honest information
24/7 access
To be listened to
Privacy
To be remembered and contacted after the death
Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics
What do Patients Want?
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Freedom from pain
At peace with God
Presence of family
Mentally aware
Treatment choices followed
Finances in order
Feel life was meaningful
Resolve conflicts
n=340 seriously ill patients
Die at home
Steinhauser et al. JAMA 2000
What Do Patients with Serious
Illness Want?
• Pain and symptom control
• Avoid inappropriate prolongation of
the dying process
• Achieve a sense of control
• Relieve burdens on family
• Strengthen relationships with loved
ones
Singer et al. JAMA 1999;281(2):163-168.
2. Is Palliative Care Beneficial?
To be sure we are delivering
beneficial care, we need to
understand the experience of
serious illness for patients and
their families.
Does hospice and palliative care
demonstrably improve this
experience?
The Nature of Suffering and the
Goals of Medicine
The relief of suffering and the cure of disease
must be seen as twin obligations of a medical
profession that is truly dedicated to the care
of the sick. Physicians’ failure to understand
the nature of suffering can result in medical
intervention that (though technically
adequate) not only fails to relieve suffering
but becomes a source of suffering itself.
Cassell, Eric NEJM 1982;306:639-45.
Discomfort ratings for 16
common hospital procedures
Severe Discomfort
- Nasogastric tube
- Mechanical ventilation
- Mechanical restraints
- Central line placement
Moderate Discomfort
- Arterial blood gas
- Urethral catheter
Mild Discomfort
- IV insertion
- Phlebotomy
- IV catheter
- IM/SC injection
- Waiting for procedures
- Movement from bed to chair
- Chest X-ray
No Discomfort
- Transfer to a procedure
- Vitals signs
- PO medications
Morrison et al, JPSM 1998.
Asking for a physician assisted
suicide: By any measure, a sign of
serious distress
• National representative survey: One in five U.S. physicians
have received at least one request to help a terminally ill
patient die.
• One in twenty have honored one or more requests
• Primary predictors of honoring a
request for suicide:
Severe pain
OR 2.4
Severe discomfort
OR 6.5
Meier et al. N Engl J Med 1998;338:1193. Meier et al. Arch Int Med 2003;163: 1537.
Pain Among Patients With
Serious Illness in the Hospital
% of 5176 patients reporting moderate to
severe pain between days 8-12 of
hospitalization:
colon cancer
liver failure
lung cancer
MOSF + cancer
MOSF + sepsis
COPD
CHF
60%
60%
57%
53%
52%
44%
43%
Desbiens & Wu. JAGS 2000;48:S183-186.
ICU care and interventions rising
prior to death
45%
39.8%
40%
38.0%
Barnato et al HSR April 2004
Trends in inpatient treatment intensity among Medicare
beneficiaries a the end of life
35%
30.3%
30%
1985
1999
25%
20%
17.8%
15%
10%
ICU during last admit
Intensive proc during last admit
But ICU Care Decreases
Satisfaction
• Bereaved family members (n=778) of patients who died in regions
of highest vs. lowest ICU intensity deciles surveyed re quality of eol
care.
• Highest ICU use areas: Patients more likely to die in an ICU, be
transferred in last month, and their families believe that not enough
life sustaining treatment was given.
• Higher ICU care regions associated with family
reports of:
 Inadequate emotional support
 Inadequate shared decision-making
 Inadequate information on what to expect
 Lack of respect
 Lower overall satisfaction
Teno et al. JAGS 2005;53:1905-11.
Family Satisfaction with Hospitals as
the Last Place of Care
2000 Mortality follow-back survey, n=1578 decedents
Not enough contact with MD:
78%
Not enough emotional support (patient): 51%
Not enough emotional support (family): 38%
Not enough help with pain/SOB:
19%
Not enough information about what to expect
with the the dying process:
50%
Teno et al. JAMA 2004;291:88-93.
Are Hospice and Palliative Care
Demonstrably Beneficial?
The Evidence Base:
• Reduction in symptom burden
• Improved patient and family
satisfaction
• Reduced costs
Recent Observational Studies of
Hospice: 2003-2004
National Mortality Follow-Back Survey*
• Overall quality of care reported higher in hospice compared to
hospitals, NH, home health services.
• Improved emotional support for decedents and their families*
Medicare claims data†
• Wives of husbands receiving hospice services prior to death had
lower 18 month mortality rates than bereaved wives of men not
receiving hospice (4.9% vs 5.4%).
Retrospective medical record review‡
• Nursing home residents receiving hospice services significantly
more likely to receive pain assessment and opioid therapy in the
last 48 hours of life.
*Teno et al, JAMA, 2004; †Christakis & Iwashyna, Soc
Sci Med, 2003; ‡Miller et al, JPSM, 2003
Family Perspectives on Quality of
Hospice as the Last Place of Care
As compared to hospital, nursing home, and
home care, hospice care at home superior for
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Pain
Emotional support
Contact with MD
Respect
Family support
Knowing what to expect
Overall quality
Hospice rated excellent by 71% vs. <50% at all
other sites
Teno et al. JAMA 2004;291:88-93.
Family Evaluation of Hospice
Care
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61-item questionnaire
• 352 hospices and 29,292 bereaved family members
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93% white, LOS 1-3m., 50% cancer, 50% 80 or older
• Overall satisfaction 47/50
• Unmet needs: Pain
Dyspnea
Emotional support
Coordination
Family support
What to expect
Meds for symptoms
Confidence
Connor et al. JPSM 2005;30:9-17.
6%
5%
10%
22%
18%
29%
13%
10%
State of the Science:
U.S. Hospice Programs
Results: Higher overall
satisfaction, improved family
support, + impact on pain
management
Does Hospital Palliative Care Improve
Outcomes?
Results from Systematic Reviews
Compared to conventional care, HPCTs were
associated with significant improvements in:
• Pain
• Non-pain symptoms
• Patient/family satisfaction
• Hospital length of stay, in-hospital
deaths
* Jordhay et al Lancet 2000*Higginson et al, JPSM,
2003; †Finlay et al, Ann Oncol 2002; Higginson et al,
JPSM 2002.
Other measures of success
“The capacity to give one's
attention to a sufferer is a very
rare and difficult thing; it is
almost a miracle; it is a miracle.”
Simone Weil
3. Is palliative care timely?
Timing of Referrals to Hospice
and Palliative Care is Late
• Median length of stay in hospice = 22
days
• 35% of hospice patients receive care
for < 1 week before death
• 9.2% 180 days or less
• Median LOS in hospital before
palliative care consultation = 18 days
www.nhpco.org and Mount Sinai Hospital Palliative Care Consult
Service data
Late Referral Decreases Quality
• 237 bereaved family members of hospice
patients asked about timing of the referral
• 13.7% reported referral “too late”
• Compared to family members referred early or
at the right time, these respondents reported
Lower satisfaction
More unmet needs
Lower confidence
More concerns about coordination
Schockett, Teno, Miller, Stuart. JPSM 2005
4. Is Hospice and Palliative Care
Safe?
• No studies of medical error rate
associated with palliative and hospice
care
• Studies do not show any difference in
mortality rate or timing of death
between palliative/hospice care
patients and usual care groups.
• Research needed.
5. Is Hospice and Palliative Care
Equitable?
• Studies suggest that minorities (AfricanAmerican, Hispanic-Latino, Asian) less
likely to receive palliative + hospice care
than whites.
• Hospice data: 78% white (vs. 75% U.S.); 8% AA (vs. 12.3% U.S.); 6% Hispanic (vs. 12.5% U.S.); 2%
Asian (vs.3.6% U.S.); 6.4% multiracial.
• No ethnic-racial data on hospital palliative
care consult services
6. Is Palliative-Hospice Care
Efficient?
Wall Street
Journal
page 1
Sept. 18, 2003
Palliative Care Is Cost-Saving,
supports transitions to more appropriate care settings
• Palliative care lowers costs (for hospitals and
payers) by reducing hospital and ICU length of
stay, and direct (such as pharmacy) costs.
• Palliative care improves continuity between
settings and increases hospice/nursing home
referral by supporting appropriate transition
management.
Lilly et al, Am J Med, 2000; Dowdy et al, Crit Care Med, 1998; Carlson et al, JAMA, 1988;
Campbell et al, Heart Lung, 1991; Campbell et al, Crit Care Med, 1997; Bruera et al, J Pall
Med, 2000; Finn et al, ASCO, 2002; Goldstein et al, Sup Care Cancer, 1996; Advisory Board
2002; Project Safe Conduct 2002, Smeenk et al Pat Educ Couns 2000; Von Gunten JAMA
2002; Schneiderman et al JAMA 2003; Campbell and Guzman, Chest 2003; Smith et al. JPM
2003; Smith, Hillner JCO 2002; www.capc.org; Gilmer et al. Health Affairs 2005. Campbell et
al. Ann Int Med.2004; Health Care Advisory Board. The New Medical Enterprise 2004.
How Palliative Care Reduces Hospital
Length of Stay and Cost
Palliative care:
• Clarifies goals of care with patients and
families
• Helps families to select medical
treatments and care settings that meet
their goals
• Assists with decisions to leave the
hospital, or to withhold or withdraw
death-prolonging treatments that don’t
help to meet their goals
Total Costs Before and After Palliative Care
Consultation at 7 Academic Medical
Centers
Data: Center to Advance Palliative Care, unpublished. 2006
Total Costs ($)
2500
2000
LOS 3-10 days
LOS 3-20 days
LOS 3-32 days
1500
1000
500
0
-5 -4 -3 -2 -1
0
1
2
3
4
5
LOS in Days
Mount Sinai LOS Comparison:
Palliative Care vs. Usual Care 2004
30
29
28
27
26
25
24
23
22
21
20
30
29
26
Pal Care
Usual Care
24
D/C Alive
Died
2000
1500
1000
500
Days Prior to Death
2
4
6
8
10
12
14
16
Median Day of First Palliative Care Consult
0
Direct Costs/Day (U.S.$)
Palliative Care Reduces Direct Costs
per Day Prior to Death
Usual Care
Palliative Care
P<.001 for all comparisons
in multivariate analyses
All adult deaths (>18
years) for calendar years
2002, 2003
LOS 10 - 35 days
30 most frequent DRGs
for palliative care patients
Palliative Care (N=368)
Usual Care (N=1036)
Do Palliative and Hospice Care
Improve Quality?
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Patient-centered?
Beneficial?
Timely?
Safe?
Equitable?
Efficient?
Yes
Yes
No
No data
No
Yes
Palliative and Hospice Care
Improve Quality
• Palliative and hospice care are patient
centered, beneficial, and efficient.
• To assure patient safety, we must
seek and identify errors and reduce
them.
• We must become more timely and
equitable in our service delivery.
State of the Science: Hospice and
Palliative Care Programs
Palliative and hospice care programs do something
“Good”
• Improved pain and other symptoms
• Improved patient and family satisfaction
• Improved resource utilization
But…
External quality measurement is coming.
Are we ready for prime time?
Are we Ready for Prime Time?
External Quality Measures for Hospice +
Palliative Care
We need measures that are:
Valid- The measure correlates with an
important outcome.
Reliable- The measure is consistent from
center to center.
Feasible- The burden of measurement is
acceptable.
Actionable- We can do something about it.
Unintended Consequences of
Measurement
• Burden and expense of measuring outcomes
that we may not be able to tell someone how to
alter
• Results of a poor measure may look as
authentic as the results of a good measure
• The tyranny of the measurable: Risk of diverting
resources to problems being assessed to the
detriment of equally or more important
problems not being assessed (e.g. measuring #
of advance directives instead of occurrence of
care consistent with patient goals)
• “There are lies, damned lies, and statistics.”
Mark Twain
External quality measures and end of
life care - Are we ready for prime time?
We providers should not measure nor
be held accountable for:
a) outcomes that have not been shown
to be alterable by processes under our
control
b) processes that have not been shown
to improve outcomes.
External Quality Measures
A Good Example- Restraint Use
• Studies demonstrate that restraints
do not prevent falls.
• Use of restraints associated with
incontinence, injury, depression,
discomfort, pain, and death.
• Restraint use and falls selected as
quality indicator for minimum data
set (MDS)
External Quality Measures Restraints
• Reduction in restraint use in
nursing homes.
• No resulting increase in falls or
injuries.
External Quality Measure
A Bad Example- Weight Loss
• Malnutrition and weight loss result in
increased morbidity and mortality in
the elderly
• Nursing home residents are at
increased risk for malnutrition and
dehydration
• Weight loss selected as quality
indicator for minimum data set (MDS)
Unintended Consequences Weight Loss in the Nursing Home
• Dying patients lose weight.
• Broad application of wt. loss as a
quality indicator caused:
Increased use of feeding tubes
Increased transfers to hospital
• Poorly selected measure results in
worsened quality of care.
Pressures to Develop External
Quality Measures:
Problem is no Longer Hypothetical
 CMS and Medicare: Pay for Performance P4P
 Aetna: Compassionate Care Program
-12 months of hospice, no requirement to give up life prolonging care
 United Healthcare: Specialized Networks
Enhancing Care for Patients with Serious Illness “Patients suffering from serious
or long-term illnesses have complex health care needs that can be overwhelming and
difficult to manage. Through our affiliate company United Resource Networks,
UnitedHealthcare offers programs that provide these patients with specialized
services and access to highly renowned facilities.”
”Can you assist us in
identifying hospice and palliative care
centers of excellence?”
All these payers are asking:
Steps Forward and Challenges
How should we respond to pressures
of regulatory bodies and payers for
measures given the current state
of our field?
Palliative and Hospice Care
Quality
Collectively our field must develop and test
measures that are feasible, reliable,
actionable, and demonstrably linked to
improved quality, or have them imposed
upon us.
Achieving Quality of Care
• Patients and families want palliative and
hospice care.
• We know that palliative and hospice care
improves quality.
• Payers want to purchase quality palliative
and hospice care for their beneficiaries.
• We have to prove our quality through
internal and external measurement and
reporting.
• The time to do that is now.
The Importance of Partnership
From the Care of Dr. M to Assuring Access to
Quality Palliative Care for All Americans
• The commitment of NHPCO and the achievement of
consensus for both the NCP and NQF processes was
crucial to their success.
• Collaborations between hospice and other palliative
care providers and organizations will not only
improve patient care but also define and test quality
indicators.
• Our partnership experience with both the NCP and
NQF processes of consensus development is good
preparation for the next stage of measure
development and testing.
Dr. M’s Care- the Result of Hospice
and Palliative Care Partnership
As a result of an effective partnership between a hospital
palliative care program and a community hospice provider, Dr.
M. received care that was:
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Patient centered- goals were defined and met
Beneficial- symptoms managed, family supported
Safe- no complications, injuries, errors
Timely- palliative care from time of diagnosis of
end stage renal disease til death and
bereavement
Efficient- avoided unwanted dialysis,
hospitalizations, surgical procedures, imaging,
transport and $$$cost.
Although the world is full of
suffering, it is also full of
the overcoming of it.
Helen Keller
Optimism
1903