Practice Gap 4/22/2018. National Trends in Palliative Care: Implications for Social Work Practice, Education and Research

Transcription

1 National Trends in Palliative Care: Implications for Social Work Practice, Education and Research 10 th Annual Palliative Care Social Work Conference Metropolitan State University Denver, Colorado April 13, 2018 Objectives Upon completion of this educational activity, you will be able to: 1) Describe existing evidence that supports the contributions of palliative care to the delivery of high value health care. 2) Identify opportunities to enhance care for people with serious advanced illness through practice, research and education. Jean S. Kutner, MD, MSPH Professor of Medicine Disclosures The University of Colorado receives support on Dr. Kutner s behalf from the following organizations: National Institute for Nursing Research (NINR) National Institute for Aging (NIA) American Cancer Society (ACS) Patient Centered Outcomes Research Institute (PCORI) Practice Gap While evidence has been growing, and care delivery has been evolving, there remains a need for innovative care delivery models that meet the needs of the growing population of people with serious illness and their family caregivers. 1

2 Start with the WHY: the personal imperative Personal experiences The Population Imperative Clinical experiences Demographic Imperative: Aging Population One of the biggest mega trends impacting the world today is population aging. Forbes, August 11,

3 Significant Growth of the Geriatric Population Number of Persons 65+, 1900 to 2060 (numbers in millions) America s population over age 65 will double by Year (as of July 1) By permission of Johnny Hart and Creators Syndicate, Inc. Source: U.S. Census Bureau, Population Estimates and Projections Percentage of persons 65+ with a disability, 2013 Independent living difficulty Self care difficulty Ambulatory difficulty Cognitive difficulty Vision difficulty Hearing difficulty Any disability Among people age 65 and over, 36 percent have at least one disability. Source: U.S. Census Bureau, American Community Survey. 3

4 What People Want Near the End of Life Implications for health and health care Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burden on family Strengthen relationships with loved ones What people get Disjointed care, with multiple care transitions Inadequate symptom control and emotional support Distressed caregivers Teno et al. JAGS 2005;53: ; Sirovich et al. Annals Intern Med 2006; 144: ; Teno et al. JAMA 2004;291:88 93; Wright: J Clin Oncol 2010; Natl Fam Caregivers Assoc, 2010,Buckner & Yeandle, 2011, ONS 2012, Buckner et al 4

5 Concentration of Spending Distribution of Total Medicare Beneficiaries and Spending, 2011 Costliest 5% of Patients IOM Dying in America Appendix E In America Improving Quality and Honoring Individual Preferences Near the End of Life.aspx 90% 37% Average per capita Medicare spending (FFS only): $8,554 11% 63% Average per capita Medicare spending among top 10% (FFS only): $48,220 40% Last 12 months of life 10% Total Number of FFS Beneficiaries: Total Medicare Spending: 37.5 million $417 billion NOTE: FFS is fee-for-service. Includes noninstitutionalized and institutionalized Medicare fee-for-service beneficiaries, excluding Medicare managed care enrollees. SOURCE: Kaiser Family Foundation analysis of the CMS Medicare Current Beneficiary Survey Cost & Use file, % Short term high $ Persistent high $ Functional Limitations and Healthcare Costs Health Care Delivery: A System in Crisis Resources Needs Adopted from Institute of Medicine

6 What is high value health care? Payers are looking for provider partners to achieve the Triple Aim for their members Value= Quality/Cost Health outcomes achieved relative to costs of care. Patient experience of care Quality and satisfaction Improving the health of populations Access and safety are essential Has become the principal focus of US health reform. Per Capita Cost At the Lowest Cost: Streamline best practice care delivery 22 What does palliative care have to do with high value health care? What is Palliative Care? Specialized medical care for people with serious illness and their families Focused on improving quality of life as defined by patients and families. Provided by an interdisciplinary team that works with patients, families, and other healthcare professionals to provide an added layer of support. Appropriate at any age, for any diagnosis, at any stage in a serious illness, and provided together with disease treatments. Definition from public opinion survey conducted by ACS CAN and CAPC 6

7 Palliative Care Components Advance Care Planning Decision making Pain & Symptom Management Palliative Care Hospice Care Goals of Care Communication Palliative Care is Concurrent with Disease-Directed Therapies Why is Palliative Care the Solution? Life Prolonging Care Medicare Hospice Benefit Not this Improves patient quality of life Improves family satisfaction/well being Life Prolonging Care Palliative Care Hospice Care But this Reduces resource utilization and costs Dx Death 27 7

8 Palliative Care: Evidence Summary Evidence best for cancer, CHF, COPD, and dementia More evidence that palliative care services improve communication and care planning, and psychosocial health and caregiver experience Less evidence of benefit for symptom distress, function, and spiritual distress Moderate evidence, with consistent trends, of reduced hospitalization and costs Studies primarily focus on hospital based and home based services Broad array of service delivery models with large differences in services delivered Evidence best for benefit from multidisciplinary programs Data on the largest service in the US hospice minimal Palliative Care Improves Value Quality improved Symptoms Quality of life Length of life Family satisfaction Family bereavement outcomes Clinician satisfaction Costs reduced Hospital cost/day Use of hospital, ICU, ED 30 day readmissions Hospitality mortality Labs, imaging, pharmaceuticals How is palliative care delivered in the US? 8

9 Generalist vs. Specialist Palliative Care Generalist level or primary palliative care Interventions provided by clinicians who have competencies to address some objectives of palliative care Specialist palliative care Interventions by clinicians who are identified as specialists, * have specialist level competencies in treatments that address the objectives of palliative care, and contribute to a more comprehensive approach to illness burden *Specialty certification in the U.S. is available for physicians, nurses, social workers and chaplains Specialist Palliative Care in the U.S. State by State Rating (2015) Multiple service delivery models to provide specialist palliative care: Institution based palliative care Hospital based services are highly prevalent and highly variable Nursing home based services are uncommon Community based palliative care Hospice agencies are highly prevalent and highly variable Home based palliative care services are uncommon Outpatient clinic based palliative care is rapidly expanding CO = 75.7% 2/3 of states had a grade of A or B in 2015 Center to Advance Palliative Care ( 9

10 Access differs by hospital characteristics Geographic Variation in Access: % of Medicare Decedents Receiving Hospice CY % 39% 50 59% > 60% 100% of U.S. News Honor Roll Hospitals Have Palliative Care Teams 100% of U.S. News Honor Roll Children s Hospitals Have Palliative Care Teams Center to Advance Palliative Care ( Source: CMS Hospice PUF Files, October 2016 for patients who received at least 1 day of hospice care in CY2014 IOM Report: Dying in America iom.edu/endoflife IOM Dying in America: Key Conclusions Identified persistent major gaps in care near the end of life that require urgent attention from numerous stakeholder groups. Apatient centered, family oriented approach to care near the end of life should be a high national priority and that compassionate, affordable, and effective care for these patients is an achievable goal. Changes are needed throughout the health care system to incentivize provision of comprehensive palliative care...health care delivery should integrate medical and social services to support the provision of quality care consistent with the values, goals, and informed preferences of people with advanced serious illness nearing the end of life. Released 9/17/14 10

11 Deficits that need addressing ( opportunities ) Infrastructure Workforce Evidence Messaging Infrastructure Not enough access to palliative care in hospitals with existing programs Most illness occurs outside of hospitals Models need to be developed and disseminated without regard to prognosis Poor or no quality metrics for complex patients with multiple medical problems moving across multiple care settings. Infrastructure: What is Needed Regulatory and accreditation requirements Quality measures, transparency, and public reporting with quality measures linked to payment incentives System redesign Insurance benefit design Innovative care delivery models 11

12 Payers Are Bringing Palliative Care Home Work Force 1 palliative medicine MD for every 1,700 persons with serious illness Most fellowship programs in academic medical centers are supported through philanthropy, not GME. No mandatory training for front line doctors and nurses Palliative Care Workforce: What Is Needed? Palliative medicine fellowship training Training in core palliative medicine knowledge and skills for all clinicians ( primary palliative care ) Morrison et al, IOM,

13 Palliative care evidence base current status Inadequate evidence base to support appropriate care of persons with serious and life limiting illness Lack of junior and mid career investigators Lack of sustainable research centers Current palliative care practice often guided by: Data from other populations Results from small studies from single institutions Anecdote and hearsay Palliative Care Evidence Base: What is Needed? Randomized, longitudinal efficacy/ effectiveness / comparative effectiveness studies Consensus on the most valid and reliable outcome measures Minimize respondent burden Combination of qualitative and quantitative methodologies; innovative study designs Multi site intervention studies Interdisciplinary research teams Stakeholder engaged research Rigorous dissemination and implementation studies Career development for junior investigators from all relevant disciplines 13

14 palliativecareresearch.org What can I do? Get involved in research 17 Social Workers (4.3% of PCRC members) PCRC Vision Excellent palliative care relies on best evidence and a scientific underpinning. The PCRC exists to lead, catalyze, and empower a community of investigators who are developing an evidence base to ensure high quality care and optimal well being for persons with serious illness and their caregivers. UC4NR12584 ; 1U24NR The mission of the PCRC is to support the conduct of high quality, effective palliative care clinical research by: Supporting investigators at all levels of experience in the conduct of clinical studies; Conducting nationally representative, multi institutional studies that include diverse populations; Leveraging Common Data Elements and a de identified palliative care study data repository that amplifies the impact of any single study; Providing methodological resources, participant access/recruitment, and the expertise of PCRC investigators from multiple disciplines. Messaging Palliative Care Public Awareness (2011) 14

15 But When They Do Learn About It.. 92% of respondents say they would seek palliative care for a loved one if they had a serious illness. 92% of respondents say palliative care services should be available at all hospitals. 89% said that it should be covered by Medicare Universal agreement across the political spectrum. This is not a political issue. What is needed? Getting the Message Out Palliative care can help you have the best possible quality of life. If you re not getting it you re not getting the highest quality care. Creating and delivering on a positive vision of what good care looks like during serious illness. Public Opinion Strategies/CAPC/ACS Consumer Poll, 2011 Palliative care is all about treating the patient as well as the disease. Palliative care sees the person beyond the cancer treatment

16 Staying on message Implications for Social Work Practice, Education and Research Develop a Vision Channel your passion to make a difference If you don't know where you are going, any road will take you there. Lewis Carroll, "Alice in Wonderland 16

17 Develop a Vision Describe the future: Where you are going or want to go Should inspire Create commitment and understanding "Good business leaders create a vision, articulate the vision, passionately own the vision, and relentlessly drive it to completion." Jack Welch, Chairman, General Electric Develop a Mission Concise statement of strategy Developed from customer's perspective Must fit with the vision. Mission should answer three questions: What do we do? How do we do it? For whom do we do it? Steps to Success Understand the relevant ecology Resources (people, programs, and reputations) Rewards (What are the values and what is valued?) Strengths Understand what constitutes wins and losses What will you do next? Find the zone Align program focus with local strengths, an external funding stream, local rewards, and your passion Create win win situations 17

18 More Medical Care Leads to Lower Satisfaction with Care Family members of decedents in high-intensity hospital service areas report lower quality of: Emotional support Shared decision-making Information about what to expect Respectful treatment Teno et al. JAGS 2005;53: Physicians practicing in high health care-intensity regions report more difficulty: Arranging elective admissions Obtaining specialty referrals Maintaining good doctor-patient relations Delivering high quality care Sirovich et al. Annals Intern Med 2006; 144: 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 information about what to expect with the dying process: 50% Not enough help with pain / shortness of breath: 19% Teno et al. JAMA 2004;291: Hospital/ICU Care at End of Life Patients with advanced cancer dying in ICU/hospital (vs. home hospice) QOL physical and emo onal distress Caregivers risk PTSD risk prolonged grief disorder Wright: J Clin Oncol

19 The Family Burden of Serious Illness 65 million caregivers deliver care at home to a seriously ill relative 40% deliver 20 or more hours of unpaid care 87% state they need more help 33% in poor health themselves Stressed caregivers are at significantly increased risk of death, major depression, reduced quality of life, and loss of work Emanuel et al. Ann Intern Med 2000, Levine C. N Engl J Med1999, Schulz et al. JAMA 1999; Schulz et al. JAMA 1999;282:2215., Kuhlthau et al, Matern Child Health 2010, Natl Fam Caregivers Assoc, 2010,Buckner & Yeandle, 2011, ONS 2012, Buckner et al EXISTING EVIDENCE BRIEF SUMMARY Palliative Care Improves Quality, Reduces Cost RCT of palliative care vs. usual home care for heart failure, chronic obstructive pulmonary disease, or cancer patients ( ) 35.0 Home health visits Usual Medicare home care Physician office visits Palliative care intervention ER visits Hospital days SNF days Brumley, R.D. et al. JAGS 2007 Concurrent palliative care Randomized trial: simultaneous standard cancer care with palliative care comanagement from diagnosis vs standard cancer care only: Improved quality of life Reduced major depression Reduced aggressiveness (less chemo < 14d before death, more likely to get hospice, less likely to be hospitalized in last month) Improved survival (11.6 mos. vs. 8.9 mos., p<0.02) Temel et al. Early palliative care for patients with non small cell lung cancer NEJM. 2010;363:

20 Temel et al. Early palliative care for patients with non small cell lung cancer NEJM2010;363: Kaplan-Meier estimates of 1-year survival by treatment group. Hopp F et al. J Card Fail 2016; Apr 11. pii: S (16) doi: /j.cardfail Patients: Advanced CHF (N=85) Site of care: Hospitalized patients Intervention: Palliative care team consultation Control: Usual care Results: Compared to control, no change in selection of comfort care/hospice Marie A. Bakitas et al. JCO doi: /jco by American Society of Clinical Oncology 20

21 Grudzen CR et al. JAMA Oncol 2016; Jan 14. doi: /jamaoncol Patients: Advanced cancer in Emergency Department (N=136) Site of care: Hospitalized patients Intervention: ED initiated palliative care consultation Control: Usual care Results: Compared to control, improved survival and QOL, and no change in depression, ICU admission, or hospice enrollment Many other database studies, observational studies, and quasiexperimental studies provide additional data Support the positive impact of hospital based palliative care consultation services on a variety of outcomes, including reduced LOS, readmissions, and cost of care Support the positive impact of hospice services on caregiver satisfaction Support the positive impact of community based palliative care on hospice enrollment and cost of care Mean direct costs per day for palliative care patients who were discharged alive (A) or died (B) before and after palliative care consultation Cost Data Discharged alive: Adjusted net savings = $1696 direct costs/ admission; $279 direct costs/day Died: Adjusted net savings = $4908 direct costs/ admission; $374 direct costs/day Morrison, R. S. et al. Arch Intern Med 2008;168:

22 % Reduction in Hospital Costs < 2 days < 6 days < 10 days < 20 days Anytime Time To Palliative Care Consultation From Admission $80,000 $70,000 $60,000 $50,000 $40,000 $30,000 $20,000 $10,000 $0 VCU IP, last 5 days of life,smit h 2004 Alive DC, Morriso n 2008 Deceden ts, Morriso n 2008 Brumley, OP, JAGS 2007 Gade, IP, JPM 2008 Medicai d, Alive DC, Morriso n 2011 Medicai Deceden d, t, Summary of Studies Evaluating Cost Compared to Controls (Inpatient Palliative Care) Usual Care IDPCT Morris Brumley et al, JAGS, 2007:55: ; Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health Mar 18;35: