Palliative and Hospice Care

1. Palliative and Hospice Care Grace Varas, DO UT Health Division of Geriatric & Palliative Medicine, Department of Internal Medicine

2. Vitals Stats • 90 million Americans are living with serious illness, and this number is expected to more than double over the next twenty-five years. (1) • By 2030, according to the Administration on Aging (AoA), there will be more than 72.1 million Americans over age sixty-five in the U.S. (20 percent of the total U.S. population). That’s more than twice the number from 2000. (2) 1. The Dartmouth Institute for Health Policy and Clinical Practice. The Dartmouth Atlas of Health Care website, www.dartmouthatlas.org. Accessed October 11, 2011. 2. Aging Statistics. The Administration on Aging (AoA) website, www.aoa.gov. Accessed June 9, 2011.

3. Gaps in Care 50% of caregivers of Americans hospitalized with a serious illness report less than optimal care: (1) • 1 in 4 patients report inadequate treatment of pain and shortness of breath. (1) • 1 in 3 families report inadequate emotional support. (1) • 1 in 3 patients report that they receive no education on how to treat their pain and other symptoms following a hospital stay. (2) • 1 in 3 patients are not provided with arrangements for follow-up care after hospital discharge. (2) TenoJM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004 Jan 7;291(1):88–93. The Commonweath Fund. “Care coordination.” Quality Matters. 2007 May/June;24

4. What is Palliative Care? In patients with seriousillnesses, irrespective of prognosis (any age/stage)… • Complex Symptom Management • Emotional and Spiritual Support for Patients And Families • Assistance with Difficult Medical Decision Making • Support for Referring Physicians and Plans of Care • Assistance with Coordination of Care (i.e. home/outpt Palliative or transitions to Hospice Care)

5. Medicare Hospice Benefit Life Prolonging Care New Hospice Care Bereavement Palliative Care Dx Death Not your Momma’s Palliative Care: A Conceptual Shift Old Life Prolonging Care

6. Good News • From 2000-2009, PCTs increased 138% to just over 1500 in the US • 2011 State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals (compared to 2008 Report Card) • Reflects data from the American Hospital Association Annual Survey Database™ for fiscal year 2009 • Overall prevalence of hospital (50+ beds) PCTs increased: • 13.3 percent in the Midwest • 21.7 percent in the Northeast • 23.7 percent in the South • 29.3 percent in the West • Cumulative national average is 63 percent (1,568 out of 2,489 study hospitals) Center to Advance Palliative Care, www.capc.org/reportcard Last accessed October 2011

7. Good News • In 2008, our nation received an overall grade of C. • In 2011, the country receives an overall grade of B. • Seven states plus the District of Columbia now receive a grade of A, with more than 80 percent of hospitals reporting palliative care services. • More than half of the fifty states receive a grade of B. • Fewer than 25 percent of states now need significant improvement (C). * • Approximately 12 percent receive non-passing grades of D or F. Center to Advance Palliative Care, www.capc.org/reportcard Last accessed October 2011

8. Good and Bad News Texas 2011 Report Card Grade: C, Rank #43 (2008 Grade: D, Rank #42) Hospitals with Palliative Care

9. Opportunities The Dartmouth Institute for Health Policy and Clinical Practice. The Dartmouth Atlas of Health Care website, www.dartmouthatlas.org. Accessed October 11, 2011. Morrison RS, Penrod JD, Cassel JB, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008 Sep 8;168(16):1783–90. Houston hospitals currently have a 16.2% readmission rate within 30 days (1) Inpatient Palliative Care consultations can improve coordination of home care, increase safety and decrease readmissions for uncontrolled symptoms (reducing cost as a secondary effect) (2)

10. Opportunities • Major barrier facing the expansion of palliative care services is the lack of palliative medicine physicians. (1, 2) • 1:71 Cardiologist for persons experiencing a heart attack • 1:141 oncologist for every newly diagnosed cancer patient • 1:1200 PM Physician to patients with serious illness • New PM fellowships need funding • Specialty approved after Medicare GME funding cap • 6000 FTE physician shortage (other disciplines , too!) 1. Center to Advance Palliative Care, www.capc.org/reportcard Last accessed October 2011 2. Lupu. Estimate of Current Hospice and Palliative Medicine Physician Workforce Shortage. J Pall & Symptom Mgmt. December 2010; Vol. 40 (6): 899-911

11. Joint Commission • Advanced Certification for Palliative Care Programs started in September 2011 • Standards defining QUALITY Palliative Care will help field progress • JC reports more interest in this certification than any others offered in past, >40 submissions in first 3 months

12. National Quality Forum Palliative Care Measure Report • Pain Management Measures • Hospice and Palliative Care — Pain Screening • Hospice and Palliative Care — Pain Assessment • Patients treated with an Opioid who are given a bowel regimen • Patients with advanced cancer assessed for pain at outpatient visits • Dyspnea Management Measures • Hospice and Palliative Care — Dyspnea Treatment • Hospice and Palliative Care — Dyspnea Screening • Care Preference Measures • Patients admitted to the ICU who have care preferences documented • Hospice and Palliative Care — Treatment Preferences • Percentage of hospice patients with documentation in the clinical record of a discussion of 345 spiritual/religious concerns or documentation that the patient/caregiver did not want to discuss • Comfortable dying • Hospitalized patients who die an expected death with an ICD that has been deactivated • Quality of Care at the End of Life Measures • Family Evaluation of Hospice Care • CARE — Consumer Assessments and Reports of End of Life • Bereaved Family Survey • 2006-Named PC to top 6 priorities for healthcare • 2011-14 new PC measures released www.qualityforum.org, accessed October 2011

13. Aetna piloted the use of “open access” hospice where their cancer patients were able to get home hospice services WHILE receiving “aggressive” chemotherapy and radiotherapy. They showed improved access to hospice (from 30.8% to 71.7%), mean hospice days nearly doubled from average, and inpatient hospital stays decreased. What is “open access” hospice? Palliative care in the home setting! The Face of Palliative Medicine Is Changing Spettell et al. (2009). “A comprehensive case management program to improve palliative care.”Journal of Palliative Medicine 12 (9): 827–832.

14. Fewer patients in the early palliative care group than in the standard care group received “aggressive” end-of-life care (33% vs. 54%, P = 0.05) Median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, P = 0.02). Studies currently in process to see if these trends applicable to other cancers and diseases in alternate sites. The Face of Palliative Medicine Is Changing Temel, M. et al. “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer.” The New England Journal of Medicine. 2010. 363:733-742.

15. Massachusetts General Hospital piloted a RCT of 151 patients with newly diagnosed metastatic non–small-cell lung cancer to receive either early palliative care (EPC) integrated with standard oncologic care or SOC alone. 27 died by 12 weeks and 107 (86% of the remaining patients) completed assessments EPC group had better quality of life than did patients assigned to standard care (mean score on the FACT-L scale 98.0 vs. 91.5 fewer patients in EPC group had depressive symptoms (16% vs. 38) Not related to increased use of anti-depressants. The Face of Palliative Medicine Is Changing Temel, M. et al. “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer.” The New England Journal of Medicine. 2010. 363:733-742.

16. When the patient is having difficult to control symptoms For time-intensive patients/families When difficult conversations become challenging When prognosis is known to be or may be poor When families are distressed and needing support For assistance with coordination of care From diagnosis throughout the disease treatment as well as at the end-of-life…ANY AGE, ANY STAGE PC Consults: When?

17. Suggestion: “The Palliative team will be coming to visit with you and your family. They often assist us with our patients and families who are facing serious illness and need symptom management and supportive care.” How to Introduce PC

18. Palliative Interprofessional Team • The interprofessional team is intrinsic to holistic care provided for patients & families • Doctors • Nurses • Chaplains • Social Workers • Counselors/Psychologists • Volunteers • Pharmacists • Therapists It takes a village!

19. Why an interprofessional team? • Team-based care that includes specialized professionals. • Each discipline provides their expertise to work together and with a patient’s other doctors to provide an extra layer of support.

20. What is end of life (EOL) care? • Important part of palliative care • Refers to the care of a person during the “last part” of their life, from the point at which it has become clear that the person is in a progressive state of decline, may be from hours to months depending on the clinical situation. • May be referred to as terminal illness and terminal care.

21. Dame Cicely Saunders “You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die.” Dame Cicely Saunders, founder of the hospice movement

22. Where is Hospice? • “Home”: primary or family residence, nursing home, group home, assisted living facility; mandated to be >80% of delivered care of any hospice’s services • Inpatient facility: Short term, 3-5 days • Continuous care at home: Highly regulated, typically 24 hours • Respite care

23. Who is Eligible for Hospice? • Advanced disease with life expectancy of “six months or less” given natural course of disease (may be longer if patient meets criteria) • Poor functional/nutritional status • High morbidity/mortality markers • Patient or SDM must give consent • Payment sources

24. Hospice Access Issues • Culture • Race • Religious Diversity • Insurance issues • Geography • Healthcare staff • Median survival in Hospice care is 2-3 weeks, primarily due to late physician referrals • The Surprise Question

25. Now You Can Answer “What is Palliative Care?” • The goal is to relieve suffering and provide the best possible quality of life for patients and their families, at any age and any stage of serious illness. • Focus on intensive symptom management, communication and coordination of care. • Provided along with curative treatment. • Not the same as hospice. • Not limited to end-of-life care. • Not dependent on prognosis.

26. Additional References • www.capc.org : IPAL-ICU Project http://www.eperc.mcw.edu/EPERC/FastFactsandConcepts • Back AL, Arnold RM, Quill TE. Hope for the Best, and Prepare for the Worst. Ann Intern Med 2003;138(5):439-443. • Quill TE, Arnold RM, Platt F. “I Wish Things Were Different”: Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med 2001;135(7):551-555. • Quill TE, Arnold R, Back AL. Discussing Treatment Preferences With Patients Who Want “Everything”. Ann Intern Med. 2009;151:345-349.

27. Credits Photographs  use for the cover are allowed by the morgueFile free photo agreement and the Royalty Free usage agreement at Stock.xchng.  They appear on the cover in this order: Wallyir at morguefile.com/archive/display/221205  Mokra at www.sxc.hu/photo/572286 Clarita at  morguefile.com/archive/display/33743 Microsoft Powerpoint Images and Clipart: Slides: 8, 18, 23