Hospice and Palliative Care: The Quality Imperative

1
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

2
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

3
National Consensus Project
For Quality Palliative Care Going National
Bringing the National Consensus Project for
Quality Palliative Care into the Mainstream

• www.nationalconsensusproject.org

4
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.
5
NCP Goals

• 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

6
NCP Goals

• Create voluntary clinical practice guidelines for
  palliative care that describe the highest quality
  services to patients and families.
• Completed April 2004
• 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

7
NCP Goals

• 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

8
Formal Approval and Endorsement by Major
Organizations

• 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

• 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.

9
The National Quality Forum Palliative and Hospice
Care Framework

• NQF Voluntary consensus standards-setting
  organization publicprivate 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.

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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

11
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.

12
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?

13
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 patients 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.

14
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.

15
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)

16
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.

17
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?

18
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

19
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.

20
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 (_at_ 8/hr)
• Levine C. Loneliness of the long-term caregiver
  N Engl J Med 19993401587- 90.
• AARP Caregiving in the U.S. 2004
  www.caregiving.org
• Report to Congress Medicare Payment Policy
  MedpacMarch 2003 www.medpac.gov

21
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 1999341956.
• Caregiving in the U.S. 2005 www.caregiving.org

22
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 2000132451

23
Caregiving Increases Mortality

• Nurses Health Study prospective study of 54,412
  nurses
• Increased risk of MI or cardiac death RR 1.8 if
  caregiving gt9 hrs/wk for ill spouse Lee et
  al. Am J Prev Med 200324113
• 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 19992822215.

24
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 19952721839
25
What Do Family Caregivers Want?

• Study of 475 family members 1-2 years after
  bereavement
• Loved ones 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

26
What do Patients Want?

• Freedom from pain
• At peace with God
• Presence of family
• Mentally aware
• Treatment choices followed
• Finances in order
• Feel life was meaningful
• Resolve conflicts n340 seriously ill patients
• Die at home Steinhauser et al. JAMA 2000

27
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 1999281(2)163-168.
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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?

29
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 1982306639-45.

30
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.
31
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 19983381193. Meier
et al. Arch Int Med 2003163 1537.
32
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 60
• liver failure 60
• lung cancer 57
• MOSF cancer 53
• MOSF sepsis 52
• COPD 44
• CHF 43
• Desbiens Wu. JAGS 200048S183-186.

33
ICU care and interventions rising prior to death
34
But ICU Care Decreases Satisfaction

• Bereaved family members (n778) 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 2005531905-11.

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Family Satisfaction with Hospitals as the Last
Place of Care2000 Mortality follow-back survey,
n1578 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 200429188-93.

37
Are Hospice and Palliative Care Demonstrably
Beneficial?

• The Evidence Base
• Reduction in symptom burden
• Improved patient and family satisfaction
• Reduced costs

38
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
39
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. lt50 at all
  other sites
• Teno et al. JAMA 200429188-93.

40
Family Evaluation of Hospice Care

• 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 2005309-17.

41
State of the Science U.S. Hospice Programs

• Results Higher overall satisfaction, improved
  family support, impact on pain management

42
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 2000Higginson et al,
JPSM, 2003 Finlay et al, Ann Oncol 2002
Higginson et al, JPSM 2002.
43
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

44
3. Is palliative care timely?
45
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 lt 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

46
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

47
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.

48
5. Is Hospice and Palliative Care Equitable?

• 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

49
6. Is Palliative-Hospice Care Efficient?
50
Wall Street Journal page 1Sept. 18, 2003
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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.
53
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 dont help to meet their goals

54
Total Costs Before and After Palliative Care
Consultation at 7 Academic Medical Centers Data
Center to Advance Palliative Care, unpublished.
2006
55
Mount Sinai LOS Comparison Palliative Care vs.
Usual Care 2004
56
Palliative Care Reduces Direct Costs per Day
Prior to Death
Plt.001 for all comparisons in multivariate
analyses All adult deaths (gt18 years) for
calendar years 2002, 2003 LOS 10 - 35 days 30
most frequent DRGs for palliative care
patients Palliative Care (N368) Usual Care
(N1036)
Median Day of First Palliative Care Consult
57
Do Palliative and Hospice Care Improve Quality?

• Patient-centered? Yes
• Beneficial? Yes
• Timely? No
• Safe? No data
• Equitable? No
• Efficient? Yes

58
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.

59
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?

60
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.

61
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

62
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.

63
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)

64
External Quality Measures - Restraints

• Reduction in restraint use in nursing homes.
• No resulting increase in falls or injuries.

65
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)

66
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.

67
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. 
• All these payers are asking  Can you assist us
  in identifying hospice and palliative care
  centers of excellence?

68
Steps Forward and Challenges

• How should we respond to pressures of regulatory
  bodies and payers for measures given the current
  state of our field?

69
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.

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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.

72
The Importance of PartnershipFrom 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.

73
Dr. Ms 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
  bereavement
• Efficient- avoided unwanted dialysis,
  hospitalizations, surgical procedures, imaging,
  transport and cost.

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Although the world is full of suffering, it
is also full of the overcoming of it.

• Helen Keller
• Optimism 1903