Hospice and Palliative Care The Quality Imperative by oia19845


									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
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

         For Quality Palliative Care
  Going National: Bringing the National Consensus
Project for Quality Palliative Care into the Mainstream
      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
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
   In process
    Formal Approval and Endorsement
         by Major Organizations
•   Center to Advance Palliative Care              •   American Nephrology Nurses' Association
•   National Hospice and Palliative Care           •   American Pain Society
    Coalition including: American Academy of       •   American Society for Bioethics and
    Hospice and Palliative Medicine, Hospice       •   American Society for Pain Management
    and Palliative Nurses Association, National        Nursing
    Hospice and Palliative Care Organization       •   American Society of Plastic Surgical Nurses
•   Academy of Medical-Surgical Nurses             •   Association of Nurses in AIDS Care
•   American Academy of Ambulatory Care            •   Association of Pediatric Oncology Nursing
    Nursing                                        •   Hospital Corporation of America
•   American Alliance of Cancer Pain Initiatives   •   International Association for Hospice and
                                                       Palliative Care
•   American Association of Colleges of Nursing    •   National Association of Directors of Nursing
•   American Association of Critical Care Nurses       Administration for Long-Term Care
•   American Association of Neonatal Nurses        •   Oncology Nursing Society
•   American Association of Spinal Cord Injury     •   Sigma Theta Tau (Honorary Nursing
    Nurses                                             Society)
•   American Board of Hospice and Palliative       •   Society of Critical Care Medicine
•   American College of Nurse Practitioners
                                                   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
• NCP Guidelines developed into an NQF
  Framework, final vote expected in June
      Implications of NQF

• Legitimacy in the eyes of policy
• 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?
• 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
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
• 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
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 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

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;340:1587-
    AARP Caregiving in the U.S. 2004 www.caregiving.org
    Report to Congress: Medicare Payment Policy Medpac;March 2003
     Caregiver Characteristics
900 family caregivers of seriously ill persons at 6
  sites across the U.S.
•   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
•   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?
1.   Freedom from pain
2.   At peace with God
3.   Presence of family
4.   Mentally aware
5.   Treatment choices followed
6.   Finances in order
7.   Feel life was meaningful
8.   Resolve conflicts     n=340 seriously ill patients

9.   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
               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
 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
                   Cassell, Eric NEJM 1982;306:639-45.
Discomfort ratings for 16
common hospital procedures
Severe Discomfort          Mild Discomfort
- Nasogastric tube         - IV insertion
- Mechanical ventilation   - Phlebotomy
- Mechanical restraints    - IV catheter
                           - IM/SC injection
- Central line placement
                           - Waiting for procedures
Moderate Discomfort
                           - Movement from bed to chair
- Arterial blood gas       - Chest X-ray
- Urethral catheter        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
    colon cancer         60%
    liver failure        60%
    lung cancer          57%
    MOSF + cancer        53%
    MOSF + sepsis        52%
    COPD                 44%
    CHF                  43%
                      Desbiens & Wu. JAGS 2000;48:S183-186.
      ICU care and interventions rising
                prior to death

40%                                                                       Barnato et al HSR April 2004
                        38.0%                  Trends in inpatient treatment intensity among Medicare
                                                                          beneficiaries a the end of life


         1985   1999




                       ICU during last admit              Intensive proc during last admit
          But ICU Care Decreases
• Bereaved family members (n=778) of patients who died in regions
  of highest vs. lowest ICU intensity deciles surveyed re quality of eol
• 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
• 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
  •   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
•   61-item questionnaire
• 352 hospices and 29,292 bereaved family members
•   93% white, LOS 1-3m., 50% cancer, 50% 80 or older
• Overall satisfaction 47/50
• Unmet needs: Pain                                      6%
                              Dyspnea                    5%
                              Emotional support         10%
                              Coordination              22%
                              Family support            18%
                              What to expect            29%
                              Meds for symptoms         13%
                              Confidence                10%
Connor et al. JPSM 2005;30:9-17.
       State of the Science:
      U.S. Hospice Programs
Results: Higher overall
 satisfaction, improved family
 support, + impact on pain
Does Hospital Palliative Care Improve
      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
                    * 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
• 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

• No studies of medical error rate
  associated with palliative and hospice
• 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
• Studies suggest that minorities (African-
  American, Hispanic-Latino, Asian) less
  likely to receive palliative + hospice care
  than whites.
• Hospice data: 78% white (vs. 75% U.S.); 8%
  A-A (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
Wall Street
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
 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
  • 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 ($)


                   1500                                                                LOS 3-10 days
                                                                                       LOS 3-20 days
                   1000                                                                LOS 3-32 days


                          -5 -4 -3 -2 -1             0    1     2     3    4     5
              Mount Sinai LOS Comparison:
              Palliative Care vs. Usual Care 2004

              30           30
LOS in Days

              25                                Pal Care
              24                                Usual Care
                    D/C Alive       Died
Palliative Care Reduces Direct Costs
        per Day Prior to Death

                                                   2000                                 Usual Care

                                                          Direct Costs/Day (U.S.$)
                                                                                        Palliative Care
                                                                                     P<.001 for all comparisons
                                                                                     in multivariate analyses
                                                   1000                              All adult deaths (>18
                                                                                     years) for calendar years
                                                   500                               2002, 2003
                                                                                     LOS 10 - 35 days
     Median Day of First Palliative Care Consult   0                                 30 most frequent DRGs
                                                                                     for palliative care patients







                                                                                     Palliative Care (N=368)
                  Days Prior to Death                                                Usual Care (N=1036)
 Do Palliative and Hospice Care
        Improve Quality?
1.   Patient-centered?   Yes
2.   Beneficial?         Yes
3.   Timely?             No
4.   Safe?               No data
5.   Equitable?          No
6.   Efficient?          Yes
   Palliative and Hospice Care
         Improve Quality
• Palliative and hospice care are
  patient centered, beneficial, and
• To assure patient safety, we must
  seek and identify errors and reduce
• 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
   • Improved pain and other symptoms
   • Improved patient and family satisfaction
   • Improved resource utilization
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
Actionable- We can do something about it.
   Unintended Consequences of
• Burden and expense of measuring outcomes
  that we may not be able to tell someone how to
• 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
    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 -

• Reduction in restraint use in
  nursing homes.
• No resulting increase in falls or
    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
• 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
All these payers are asking:
  identifying hospice and palliative care
  centers of excellence?”
 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

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
• 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
• 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:
     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
     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

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