1. Open Access Hospice: America’s End of Life Challenge Carolyn Cassin President & CEO Continuum Hospice Care Jacob Perlow Hospice

2. Live as if you were going to die tomorrow. Learn as if you were going to live forever. - Mahatma Ghandi Somebody should tell us right from the start of our lives that we are dying. Then we might live life to the limit every minute of every day. Whatever you want to do, do now. There are only so many tomorrows. – Pope Paul VI

3. Patients with Life-Threatening Illness: Current Status 90% of Americans die after living with one or more life-threatening illnesses Most who die are elderly—median age of death >75 years—and population is aging Most die in institutions

4. EOL Care: Patient/Family Outcomes Results: 67.1% of patients died in an institution Of 519 home deaths: 198 (38.2%) did not receive nursing services 65 (12.5%) had home nursing services 256 (49.3%) had home hospice services Teno et al, JAMA, 2004

5. EOL Care: Patient/Family Outcomes About 1/4 described poor physician communication About 1/4 with pain or breathlessness did not receive adequate treatment Insufficient emotional support reported by 1/3 of those cared for by a home health agency, nursing home, or hospital 1/5 of those receiving home hospice services Teno et al, JAMA, 2004

6. EOL Care: Patient/Family Outcomes Not “treated with respect” nursing homes 31.8% hospitals 20.4% Home hospice 3.8% “Excellent” family satisfaction Only 50% of those in institutions 70.7% receiving hospice Teno et al, JAMA, 2004

7. “Best Place to Die” Forbes Magazine 2004 States ranked by weighted average of the following: 2001 CMS data on overall quality of health care 2002 analysis from ABA Commission on Law and Aging evaluating overall quality of elder law Cancer deaths in hospitals, in LTC or at home Percentage of non-HMO Medicare patients receiving hospice care at end of life, 2000 Calculation of after-tax assets for an estate valued at $10 million, 2004.

8. “Best Place to Die” Forbes Magazine 2004 Health Legal Cancer Deaths Hospice $10 mil Health Legal Cancer Deaths Hospice $10 mil Rank State care protection Hospital Nursing Home care estate_ 1 Utah 5B- 20% 20% 63% 25% $5.9 1 Utah 5B- 20% 20% 63% 25% $5.9 2 Oregon 11B+ 21 23 56 31 5.9 2 Oregon 11B+ 21 23 56 31 5.9 3 Delaware 14A+ 29 21 52 24 5.9 3 Delaware 14A+ 29 21 52 24 5.9 30New York 24 B+ 52 20 28 16 5.1 49Ohio 38 C+ 30 31 36 27 5.1 50Illinois 46 A- 41 24 37 25 5.1

9. End of Life Care in U.S.  Over 3,300 Hospice locations in the U.S.  1.8 Millions persons die of a clinical terminal illness annually  37% Patients in the U.S died with Hospice  $4 Billion in Hospice Expenditures - 2002  SUPPORT Study  Dartmouth Atlas Data

10. End of Life Care in NYC  Nearly 47,000 New Yorkers died of a terminal illness in 2007  Only 17% of them had hospice care.  58% of those who did not have hospice died in hospitals  98% of Americans describe their desire to die at home, surrounded by friends and family as their preference for end of life care.

11. Response to the Status Quo: A National Problem Patient & Family want to be assured that: comfort will be a priority, values and decisions will be respected, psychosocial and spiritual needs will be addressed, practical assistance will be available in the home, help will be available to enhance coping with loss, and the likelihood of closure and growth will be increased.”

12. Palliative Care Should be considered a best practice during routine medical care Should be available at a specialist- level for patients and families in need

13. Addressing Deficiencies in Palliative Care Improve “generalist-level” palliative care throughout the health care system Education Continuing education Systems change Quality improvement Culture shift Community outreach Increase access to specialist-level palliative care Hospice Hospital-based palliative care programs Other models

14. Hospice A federal entitlement for >20 years Administered under Medicare Part A, with equivalent benefit under Medicaid Similar benefits provided by most other insurers Nationally 4000 programs >1 million patients served $12 billion industry

15. The Hospice Program Not a place A home care program with limited access to inpatient beds Highly regulated managed care system with capitated reimbursements A very robust set of services for patients and families

16. The Hospice Program: What are the Services? Case management by an interdisciplinary team, including at least Physician Nurse Social worker Pastoral care provider Access to volunteers Access to home health aides Access to other services (e.g., speech and swallowing)

17. The Hospice Program: What are the Services? Access to inpatient level of care for acute problems, family respite, or to care for the imminently dying patient Access to period of continuous nursing care at home Bereavement services for 13 months after the death at no cost

18. The Hospice Program : What are the Services? All tests and treatments At no All drugscost Durable medical equipment if Medical supplies related to terminal diagnosis

19. Open Access A new model of hospice Goal is to mainstream hospice care into current systems of care No limits to hospice eligibility except as defined by law Certification of prognosis Informed consent and election of the benefit

20. Open Access Hospice: A New Model Hospice supports and pays for disease- modifying therapies if they are appropriate and do not change eligibility No need to “accept death” or acknowledge dying No need to be DNR

21. Open Access Hospice: A New Model That allows American to come terms with the ambivalence we have about dying

22. The Benefits of Hospice: Not Fully Realized Late referral or no referral because Discomfort about acknowledging advanced disease, terminal illness, the reality of foreseeable death Lacking the facts: Uncertainty about the nature of the Hospice as giving up Conflicting incentives abound in the American Health Care System Hospices themselves

23. Hospice Myths “This patient is not Hospice appropriate…not close to dying” Eligibility is a prognosis of “six months if the disease runs its expected course” Physicians usually overestimate prognosis There are published guidelines and hospice staff can provide direction

24. Hospice Myths “The family and patient aren’t ready to hear about hospice...” Hospice is not about dying; it’s about services Eligibility does not require “readiness to die” Patient or surrogate must acknowledge only that the disease is “terminal” and that the benefit can continue only if a physician certifies that the prognosis is limited

25. Hospice Myths “The patient must have a DNR to be eligible for Hospice” Not True! “The patient must have a 24 hour responsible caregiver” Not True!

26. Hospice Myths “There’s no point to hospice because the patient is imminently dying, already in coma…” The patient cannot benefit, but the family is eligible for 13 months of bereavement support at no cost

27. Hospice Myths “If I refer my patient to Hospice, I must give up providing care for my patient” Not true! “The patient doesn’t want to give up his regular doctor” The patient does not have to give up any physician

28. Hospice Myths “Hospice isn’t appropriate because…” “...the patient still wants ‘active’ treatment.’” “…the patient doesn’t want just ‘palliative’ therapy.” “…the patient won’t give up hope.” “…we can still treat the disease.”

29. Hospice Myths With Open Access Hospice Hospice services are integrated with disease management Any treatment may be acceptable if it does not change hospice eligibility

30. A Vision for the Future  Humane, dignified and loving care for all patients at end of life  A peaceful ending to a life well lived

31. What Can You Do To Help?  Get involved in end of life care in your community  Champion Open Access Hospice

32. Quote Do not seek death. Death will find you. But seek the road which makes death a fulfillment. - Dag Hammarskjöld