Palliative Care: Palliative Care: Challenges for an Challenges for an Emerging Discipline Emerging Discipline
Russell K. Portenoy, MDRussell K. Portenoy, MDChairman and Gerald J. and Dorothy R. Chairman and Gerald J. and Dorothy R.
Friedman Chair in Pain Medicine and Palliative Friedman Chair in Pain Medicine and Palliative CareCare
Department of Pain Medicine and Palliative Department of Pain Medicine and Palliative CareCare
Beth Israel Medical CenterBeth Israel Medical Center
Chief Medical Officer Chief Medical Officer Continuum Hospice CareContinuum Hospice Care
Professor of Neurology and AnesthesiologyProfessor of Neurology and AnesthesiologyAlbert Einstein College of MedicineAlbert Einstein College of Medicine
Palliative Care: Palliative Care: Challenges for an Challenges for an Emerging DisciplineEmerging Discipline
Current landscapeCurrent landscape ChallengesChallenges
– For the subspecialtyFor the subspecialty
– For hospital-based palliative careFor hospital-based palliative care
– For hospiceFor hospice
Quality-of-Life Concerns Quality-of-Life Concerns in Cancer Populationsin Cancer Populations High prevalence of poorly controlled High prevalence of poorly controlled
symptomssymptoms High prevalence of psychological High prevalence of psychological
distressdistress High caregiver burden and financial High caregiver burden and financial
stressstress Disparities in access and outcomesDisparities in access and outcomes Health care systems skewed for Health care systems skewed for
treatment and acute medical treatment and acute medical managementmanagement
End-of-Life Care: End-of-Life Care: Illustrative Outcome Illustrative Outcome Data Data Study: Study: Telephone survey of family members representing Telephone survey of family members representing
1578 decedents1578 decedents Results:Results:
– About 1/4 reported concerns with physician communication About 1/4 reported concerns with physician communication – About 1/4 with pain or dyspnea did not receive adequate About 1/4 with pain or dyspnea did not receive adequate
treatmenttreatment– Insufficient emotional support reported by 1/3 of those cared Insufficient emotional support reported by 1/3 of those cared
for by a home health agency, nursing home, or hospital, and for by a home health agency, nursing home, or hospital, and 1/5 receiving home hospice 1/5 receiving home hospice
– ““Treated with respect”: nursing homes 68.2%, hospitals Treated with respect”: nursing homes 68.2%, hospitals 79.6%, Home hospice 96.2% 79.6%, Home hospice 96.2%
– Family satisfaction “excellent”: 50% of those in institutions, Family satisfaction “excellent”: 50% of those in institutions, 70.7% receiving hospice 70.7% receiving hospice
Teno et al, JAMA, Teno et al, JAMA, 20042004
Intensity and Cost of Intensity and Cost of Treatment for Advanced Treatment for Advanced Cancer: US TrendsCancer: US Trends Study: Study: Analysis of 1993-1996 Medicare claims data Analysis of 1993-1996 Medicare claims data
from 28,777 patients who died within 1 year of a from 28,777 patients who died within 1 year of a diagnosis of lung, breast, colorectal, or other diagnosis of lung, breast, colorectal, or other gastrointestinal cancergastrointestinal cancer
Results:Results: – Chemo within 2 weeks of death increased from 13.8% in Chemo within 2 weeks of death increased from 13.8% in
1993 to 18.5% in 1996 (P <.001)1993 to 18.5% in 1996 (P <.001)– There were small but significant increases in ED visits, There were small but significant increases in ED visits,
hospitalizations, and ICU admissions in the last month of hospitalizations, and ICU admissions in the last month of life life
– Very short hospice admissions (3 days or less) increased Very short hospice admissions (3 days or less) increased from 14.3% to 17.0% (P =.004)from 14.3% to 17.0% (P =.004)
Earle et al, JCO, 2004Earle et al, JCO, 2004
Variation in Quality of Variation in Quality of Care for Advanced IllnessCare for Advanced Illness
Study: Study: Analysis of Medicare claims data during the last 6 Analysis of Medicare claims data during the last 6 months of lifemonths of life for patients admitted to one of the 77 hospitals on for patients admitted to one of the 77 hospitals on the 2001 US News and World Report "best hospitals" listthe 2001 US News and World Report "best hospitals" list
Results:Results:– Percentage of deaths occurring in hospital ranged from 15.9% to Percentage of deaths occurring in hospital ranged from 15.9% to
55.6% (interquartile range 35.4-43.1%)55.6% (interquartile range 35.4-43.1%)– Hospice enrollment ranged from 10.8% to 43.8% (22.0-32.0%)Hospice enrollment ranged from 10.8% to 43.8% (22.0-32.0%)– Days in hospital: from 9.4 to 27.1 (11.6-16.1)Days in hospital: from 9.4 to 27.1 (11.6-16.1)– Days in ICU: from 1.6 to 9.5 (2.6-4.5)Days in ICU: from 1.6 to 9.5 (2.6-4.5)– # MD visits: from 17.6 to 76.2 (25.5-39.5)# MD visits: from 17.6 to 76.2 (25.5-39.5)– % patients seeing % patients seeing >>10 MDs: from 16.9% to 58.5% (29.4-43.4%)10 MDs: from 16.9% to 58.5% (29.4-43.4%)– % deaths in ICU: from 8.4% to 36.8% (20.2-27.1%)% deaths in ICU: from 8.4% to 36.8% (20.2-27.1%)
Wennberg JE et al, BMJ, 2004Wennberg JE et al, BMJ, 2004
Part of the Solution: Part of the Solution: Palliative CarePalliative Care
NQF National Framework and Preferred Practices NQF National Framework and Preferred Practices for Palliative and Hospice Care (adopted May 17, for Palliative and Hospice Care (adopted May 17, 2006)2006)
– "Palliative care means patient and family-centered that "Palliative care means patient and family-centered that optimizes quality of life by anticipating, preventing, and optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, of illness involves addressing physical, intellectual, emotional, social, and spiritual needs to facilitate patient emotional, social, and spiritual needs to facilitate patient autonomy, access to information and choice.“autonomy, access to information and choice.“
Consensus guidelines, viz., National Consensus Consensus guidelines, viz., National Consensus Project (www.nationalconsensusproject.org)Project (www.nationalconsensusproject.org)
Part of the Solution: Part of the Solution: Palliative CarePalliative Care
National Cancer Institute definitionNational Cancer Institute definition− ““palliative care palliative care (PA-lee-uh-tiv...)(PA-lee-uh-tiv...)
Care given to improve the quality of life of patients who Care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible palliative care is to prevent or treat as early as possible the symptoms of the disease, side effects caused by the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and treatment of the disease, and psychological, social, and spiritual problems related to the disease or its treatment. spiritual problems related to the disease or its treatment. Also called comfort care, supportive care, and symptom Also called comfort care, supportive care, and symptom management.”management.”
Some define “supportive care” in terms specific to Some define “supportive care” in terms specific to treatment-related effectstreatment-related effects
Part of the Solution: Part of the Solution: Palliative CarePalliative Care Best considered a therapeutic model Best considered a therapeutic model
– InterdisciplinaryInterdisciplinary– Targeted to all types of ‘serious or life-Targeted to all types of ‘serious or life-
threatening illness’ threatening illness’ – Relevant throughout the course of the Relevant throughout the course of the
diseasedisease– Unit of care is patient and familyUnit of care is patient and family– Emphasizes comprehensive and Emphasizes comprehensive and
continuous care continuous care
Part of the Solution: Part of the Solution: Palliative CarePalliative Care Goal of palliative careGoal of palliative care
– To prevent and manage suffering, and to To prevent and manage suffering, and to maintain quality of life, of patients with maintain quality of life, of patients with serious or life-threatening illness, and their serious or life-threatening illness, and their families, by reducing the burden of illness families, by reducing the burden of illness and promoting adaptation and coping and promoting adaptation and coping throughout the course of the diseasethroughout the course of the disease
Part of the Solution: Part of the Solution: Palliative CarePalliative Care Domains of Quality
(www.nationalconsensusproject.org)
1. Structure and Processes of Care2. Physical Aspects of Care3. Psychological and Psychiatric Aspects of Care4. Social Aspects of Care5. Spiritual, Religious and Existential Aspects of
Care6. Cultural Aspects of Care7. Care of the Imminently Dying Patient8. Ethical and Legal Aspects of Care
Palliative Care: Palliative Care: Key ElementsKey Elements ObjectivesObjectives
– Ongoing communicationOngoing communication to to support shared support shared decision makingdecision making and and advance care advance care planningplanning with due regard for culture, with due regard for culture, religion, and other sources of variationreligion, and other sources of variation
– Comfort through Comfort through expert symptom controlexpert symptom control– Management of Management of psychosocial and spiritual psychosocial and spiritual
needsneeds
Palliative Care: Palliative Care: Key ElementsKey Elements ObjectivesObjectives
– Availability of Availability of practical helppractical help in the home in the home– Management of Management of complex problemscomplex problems
associated with associated with far advanced illness andfar advanced illness and active dyingactive dying
– Support for familySupport for family while caregiving and while caregiving and when bereavedwhen bereaved
Palliative CarePalliative Care
Key conceptKey concept
– Palliative care should be considered a Palliative care should be considered a best practice during routine cancerbest practice during routine cancer carecare, ,
and and – Palliative care should bePalliative care should be available at a available at a
specialist-levelspecialist-level for patients and families for patients and families in need of an interdisciplinary approach in need of an interdisciplinary approach involving a high level of expertise in involving a high level of expertise in multiple domainsmultiple domains
Specialist-Level Specialist-Level Palliative Care in the Palliative Care in the U.S.U.S. In 2006, “Hospice and Palliative Medicine” In 2006, “Hospice and Palliative Medicine”
accepted by the American Board of Medical accepted by the American Board of Medical Specialties as a subspecialty inSpecialties as a subspecialty in – Internal Medicine Internal Medicine – Family Medicine Family Medicine – Neurology and PsychiatryNeurology and Psychiatry– AnesthesiologyAnesthesiology– PediatricsPediatrics– Surgery Surgery – Emergency MedicineEmergency Medicine– Physical Medicine and RehabilitationPhysical Medicine and Rehabilitation– Obstetrics and GynecologyObstetrics and Gynecology– Radiology Radiology
Specialist-Level Specialist-Level Palliative Care in the Palliative Care in the U.S.U.S. In 2006,“Hospice and Palliative Medicine” In 2006,“Hospice and Palliative Medicine”
accepted by the Accreditation Council on accepted by the Accreditation Council on Graduate Medical EducationGraduate Medical Education– One year FellowshipOne year Fellowship– Program requirements acceptedProgram requirements accepted– Family Medicine RRC will review all applicationsFamily Medicine RRC will review all applications– Pre-review by a new Committee on Hospice and Pre-review by a new Committee on Hospice and
Palliative CarePalliative Care– First cycle review early in 2009First cycle review early in 2009– Approximately 60 programs applied and Approximately 60 programs applied and
accreditation will be retroactive to July, 2008accreditation will be retroactive to July, 2008
Systems to Deliver Systems to Deliver Palliative CarePalliative Care In the U.S., improved access to In the U.S., improved access to specialist-specialist-
levellevel palliative care requires palliative care requires− Access to professionalsAccess to professionals with specialist-level with specialist-level
competenciescompetencies− Access to systemsAccess to systems that support specialist that support specialist
carecare− Institution-based palliative careInstitution-based palliative care programs can programs can
deliver specialist care in hospitals and NH’sdeliver specialist care in hospitals and NH’s− HospiceHospice can deliver specialist-level palliative can deliver specialist-level palliative
care at EOLcare at EOL
Access to Specialists: Access to Specialists: ChallengesChallenges
Workforce issuesWorkforce issues– All disciplines affectedAll disciplines affected
For physiciansFor physicians For nurses For nurses For social workersFor social workers For pastoral care providersFor pastoral care providers
– ConcernsConcerns Limited numberLimited number Inadequate training Inadequate training Regional maldistributionRegional maldistribution
Physician Workforce Physician Workforce Issues Issues
Currently too few specialistsCurrently too few specialists Most care in specialist programs Most care in specialist programs
delivered by physicians with limited delivered by physicians with limited trainingtraining
Fragile support for growth of the Fragile support for growth of the workforceworkforce
Physician Workforce Physician Workforce IssuesIssues
Issues in certification and Issues in certification and accreditationaccreditation– Certification of specialistsCertification of specialists
Experiential track only till 2013Experiential track only till 2013 After 2013, certification possible only after one-After 2013, certification possible only after one-
year training in an ACGME-accredited Fellowshipyear training in an ACGME-accredited Fellowship No identified mid-career strategy for those who No identified mid-career strategy for those who
cannot take a Fellowshipcannot take a Fellowship Pediatrics dilemmaPediatrics dilemma
Physician Workforce Physician Workforce IssuesIssues
Issues in certification and accreditationIssues in certification and accreditation– Number of Fellowship slotsNumber of Fellowship slots
Limited by national and institutional training caps and by Limited by national and institutional training caps and by half-salary support for Fellowshipshalf-salary support for Fellowships
Rules may limit academic hospices as primary training Rules may limit academic hospices as primary training sitessites
– With uncertain funding, limited number of clinician-With uncertain funding, limited number of clinician-educators, and uncertain future demand, the educators, and uncertain future demand, the number of Fellowships may remain small and those number of Fellowships may remain small and those created will have few slotscreated will have few slots
Access to Specialists: Access to Specialists: ChallengesChallenges
Nursing issuesNursing issues– Certification available but overall Certification available but overall
shortage of nurses and few specialistsshortage of nurses and few specialists– State-to-state variation in APN statusState-to-state variation in APN status– Few training opportunitiesFew training opportunities
Access to Specialists: Access to Specialists: ChallengesChallenges Social work issuesSocial work issues
– No identified subspecialtyNo identified subspecialty– Tension in job role Tension in job role – Few training opportunitiesFew training opportunities
Pastoral care issuesPastoral care issues– No identified subspecialtyNo identified subspecialty– Few training opportunitiesFew training opportunities
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The good news: foundations for The good news: foundations for
growthgrowth– National Quality Forum Framework National Quality Forum Framework
acceptedaccepted– Joint Commission interested Joint Commission interested – Best practice defined by consensus Best practice defined by consensus
((www.nationalconsensusproject.orgwww.nationalconsensusproject.org ) )– Technical assistance available (Technical assistance available (
www.capc.orgwww.capc.org))
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The good news: foundations for The good news: foundations for
growthgrowth– Clear evidence of a growing Clear evidence of a growing
recognition of unmet need and quality recognition of unmet need and quality imperativeimperative 96% increase in the number of hospital-96% increase in the number of hospital-
based programs between 2000 and 2006 based programs between 2000 and 2006 (American Hospital Association)(American Hospital Association)
– Emerging literature on cost savings Emerging literature on cost savings
Access to Systems: Cost Access to Systems: Cost ReductionReduction
Charts courtesy of J Brian Cassel, PhD, Massey Cancer Center, Virginia Commonwealth University Smith et al. J Pal Med 2003Smith TJ et al. J Pall Med 2003;6(5):699-705.
In Palliative Care UnitBefore Referral
Access to Systems: Cost Access to Systems: Cost ReductionReduction
Findings of a national program that funded 22 Findings of a national program that funded 22 demonstration projects providing demonstration projects providing palliative care services in diverse settings– Costs of health care in the last 6 to 12 months of
life remained high, but no higher than customary care and commensurate with the complex needs of patients
Byock I et al. J Palliat Med. 2006;9(1):137-51.
Access to Systems: Cost Access to Systems: Cost ReductionReduction
Largest studyLargest study– Data from 8 hospitals 2002- 2004Data from 8 hospitals 2002- 2004– Cost savings for those discharged alive Cost savings for those discharged alive
$1696 per admission (P = .004) $1696 per admission (P = .004) $279 per day (P < .001) $279 per day (P < .001)
– Cost savings for those who died Cost savings for those who died $4908 per admission (P = .003) $4908 per admission (P = .003) $374 per day (P < .001)$374 per day (P < .001)
Morrison et al, Arch Int Med, 2008Morrison et al, Arch Int Med, 2008
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The bad news: challenges to The bad news: challenges to
growthgrowth– Large geographical variation in programs Large geographical variation in programs
suggest quality and economic barrierssuggest quality and economic barriers State-by-State report card (J Palliat Med, 2008)State-by-State report card (J Palliat Med, 2008)
– U.S. overall: Prevalence of palliative care programs U.S. overall: Prevalence of palliative care programs across states varies from 10% to 100%across states varies from 10% to 100%
– California and New York, like the U.S. overall, gets a California and New York, like the U.S. overall, gets a ‘C’ = 41-60% of hospitals >50 beds ‘C’ = 41-60% of hospitals >50 beds have a palliative care programhave a palliative care program
County-by-County County-by-County Palliative Care Palliative Care Programs: CaliforniaPrograms: California
127 programs in 225 hospitals statewide
Los Angeles County= 33 programs
No programs
San Bernardino = 4 programs
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The bad news: challenges to The bad news: challenges to
growthgrowth– Most of interdisciplinary team cannot Most of interdisciplinary team cannot
generate reimbursement for services and generate reimbursement for services and the business plan for palliative care services the business plan for palliative care services relies on cost reductions that may or may relies on cost reductions that may or may not materialize or be easily measurednot materialize or be easily measured
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The bad news: many programs struggle with The bad news: many programs struggle with
quality concernsquality concerns– Largely address inpatient issues and institutional Largely address inpatient issues and institutional
deathsdeaths Limited continuity of careLimited continuity of care Ambulatory and home care models not yet developed Ambulatory and home care models not yet developed
or widely availableor widely available Many with poor linkages to hospice, NHs, home careMany with poor linkages to hospice, NHs, home care
– Many programs miss key elements of an IDTMany programs miss key elements of an IDT– Perceived to lack focus on the psychosocial and Perceived to lack focus on the psychosocial and
the spiritual, and family issues the spiritual, and family issues
Access to Systems: Access to Systems: Hospital-Based Palliative Hospital-Based Palliative CareCare The bad news: challenges to The bad news: challenges to
growthgrowth– In some institutions, competition among In some institutions, competition among
departments, division, or servicesdepartments, division, or services
Challenge for Hospice: Challenge for Hospice: Open AccessOpen Access Hospice is a capitated managed care Hospice is a capitated managed care
benefit available benefit available as an entitlementas an entitlement under Medicare and Medicaidunder Medicare and Medicaid
To survive financially, most hospices To survive financially, most hospices limit enrolment and limit carelimit enrolment and limit care
Open AccessOpen Access is being explored as a is being explored as a means to expand the availability of means to expand the availability of hospice serviceshospice services
Open Access: Open Access:
DefinitionDefinition Hospice eligibility is determined solely Hospice eligibility is determined solely
by the specific requirements in the by the specific requirements in the federal regulations, and not by the federal regulations, and not by the intended plan of careintended plan of care
Open Access: Open Access: EligibilityEligibility
Eligibility: Summary of Eligibility: Summary of Regulations Regulations (42CFR418.20):(42CFR418.20): – Patient must be Medicare-eligible and patient or Patient must be Medicare-eligible and patient or
representative must agree to that Part A benefits representative must agree to that Part A benefits will be turned over to the hospice.will be turned over to the hospice.
– Physician must certify that life expectancy is Physician must certify that life expectancy is <<6 6 months if the disease runs its normal course.months if the disease runs its normal course.
– Patient or representative must acknowledge that Patient or representative must acknowledge that the treatment of the disease will be the treatment of the disease will be palliativepalliative and and not not curativecurative. .
Open Access: Open Access: EligibilityEligibility
Eligibility: SummaryEligibility: Summary– Definition of “curative” has not been Definition of “curative” has not been
stipulatedstipulated Clearly means “a treatment that has a Clearly means “a treatment that has a
reasonable likelihood of cure.” reasonable likelihood of cure.” Probably means “a treatment that has a Probably means “a treatment that has a
reasonable likelihood of prolonging survival reasonable likelihood of prolonging survival beyond 6 months.”beyond 6 months.”
Never intended to mean “a treatment that is Never intended to mean “a treatment that is disease-modifying, or capable of yielding disease-modifying, or capable of yielding relatively brief added survival.”relatively brief added survival.”
Open Access: Broad Open Access: Broad
GoalsGoals Under a pure Open Access modelUnder a pure Open Access model
– Hospice patients may receive ANY Hospice patients may receive ANY treatment unless it is likely to extend treatment unless it is likely to extend prognosis beyond 6 monthsprognosis beyond 6 months
– Hospice provides added services and Hospice provides added services and requires that the patient give up nothingrequires that the patient give up nothing
– Hospice should be seen as a program of Hospice should be seen as a program of services and not a philosophy about services and not a philosophy about dyingdying
Pure Open Access: Pure Open Access:
ImplicationsImplications Benefits of hospice to patients and Benefits of hospice to patients and
families may be better realizedfamilies may be better realized Benefits of the hospice to hospitals may Benefits of the hospice to hospitals may
be better realizedbe better realized Benefits to the hospice may be realizedBenefits to the hospice may be realized
Pure Open Access: Pure Open Access:
ImplicationsImplications ButBut risks to the hospice risks to the hospice
– Overwhelming increase in patient cost Overwhelming increase in patient cost associated with requirement to pay for all associated with requirement to pay for all treatments related to the terminal illnesstreatments related to the terminal illness
– Care provided by hospice staff may be Care provided by hospice staff may be outside of scope of practiceoutside of scope of practice
– Staff may become distracted by needs of Staff may become distracted by needs of the acutely ill and not provide same level of the acutely ill and not provide same level of care to the imminently dyingcare to the imminently dying
Open Access: Open Access: Implementation IssuesImplementation Issues
Hypothesis: Cost of pure Open Access Hypothesis: Cost of pure Open Access should be possible, at least for larger should be possible, at least for larger hospiceshospices– If risk pool can be optimizedIf risk pool can be optimized– If care can be managed like other If care can be managed like other
managed care organizationsmanaged care organizations
OPEN ACCESS
Managing the Risk Pool
Real Time Financial Data
Complex Case Management
Open Access: Implementation Issues
Open Access: Open Access: Implementation IssuesImplementation Issues Case study: Continuum Hospice Case study: Continuum Hospice
CareCare– Formal policy and procedure was Formal policy and procedure was
developed developed – Teams were in-servicedTeams were in-serviced– Procedure was pilotedProcedure was piloted
Forms for data collection developed for Forms for data collection developed for EMREMR
Informational items for staffInformational items for staff
Open Access: Open Access: Implementation IssuesImplementation Issues
Case study: Outcomes Case study: Outcomes – Unsustainable costs given changes in Unsustainable costs given changes in
oncology practiceoncology practice– Oncologist confusion Oncologist confusion – Admissions Team confusionAdmissions Team confusion– Scope of practice concernsScope of practice concerns
Continuum Hospice Care and other Continuum Hospice Care and other hospices are re-thinking viability of hospices are re-thinking viability of “pure” Open Access model“pure” Open Access model
Change in payor system will be Change in payor system will be needed to improve accessneeded to improve access
Specialist-Level Specialist-Level Palliative CarePalliative Care What needs to happen?What needs to happen?
– Support the growth of institution-based Support the growth of institution-based palliative care programs based on well-palliative care programs based on well-defined guidelines and a sustainable defined guidelines and a sustainable business modelbusiness model
– Expand access to hospice while Expand access to hospice while enhancing hospice quality through payor enhancing hospice quality through payor policy changespolicy changes
– Meet needs for workforce expansion Meet needs for workforce expansion through programs for mid-career shift and through programs for mid-career shift and Fellowship trainingFellowship training
Specialist-Level Specialist-Level Palliative CarePalliative Care
What needs to happen?What needs to happen?– Create meaningful bridges between Create meaningful bridges between
palliative care programs and hospicepalliative care programs and hospice
Hospice and Palliative Hospice and Palliative Care: Care: Current SituationCurrent Situation
Palliative CarePrograms Hospice
BridgePrograms
Upstream Programs
Few Specialists in Hospice and Palliative Medicine